I have spent my morning poddling about the house, not really doing much and sitting down LOTS! I kept thinking that after lunch I would go out and check on Merlin our carriage pony.
Mmm, I should have known that that elephant of mine would make his presence felt, and weigh me down -he has! My body feels so heavy and my legs are sore, I really need to be horizontal
My 'pony check', followed by a cuppa with my friend looks much less likely from where i am just now -horizontal on the bed!
Boy it's frustrating when my diary gets rearranged..... by a bloody elephant!
Anyone know of any elephant weight-loss programs? :o)
Wednesday 8 December 2010
Monday 22 November 2010
You know you've got ME/CFS when.......
I'm not one for inspiration, I seem to drift along in my world and miss all sorts of shareable, blog-able stuff. Or Maybe, it doesn't even happen to me, I dunno!
But I got a tweet (twitter speak for the uninitiated!) today, and I quote,
'You know you've got ME when..... you eat your cereal with a large spoon cos it takes less energy'.
This got me thinking about the little quirks that have crept into my life and become almost habitual since becoming ill, the kind of thing the doctors never warn you about!
I have to say I often let my cup of tea go almost cold, so I can drink it in just one 'mug-lift'. I also shuffle about the bedroom, herding dirty laundry (socks are especially tricky critters!) with my feet so I only have to bend down once to pick it up. Mmm, sorry for the slightly grubby picture of domesticity, but such is my life!!
I walk around accompanied by a kind of wind-chime sound when I'm out of the house as I have to attach my car keys, house keys and work i.d. to my person, so that I don't lose them! Goodness only knows what would happen if I fell in the lake.....sink like a stone I expect!
I'm certain these aren't the only things that I'll think of, and will probably add later, but please let me know of any little things you do now, that make life a little easier.
You know you've got ME/CFS when .............
But I got a tweet (twitter speak for the uninitiated!) today, and I quote,
'You know you've got ME when..... you eat your cereal with a large spoon cos it takes less energy'.
This got me thinking about the little quirks that have crept into my life and become almost habitual since becoming ill, the kind of thing the doctors never warn you about!
I have to say I often let my cup of tea go almost cold, so I can drink it in just one 'mug-lift'. I also shuffle about the bedroom, herding dirty laundry (socks are especially tricky critters!) with my feet so I only have to bend down once to pick it up. Mmm, sorry for the slightly grubby picture of domesticity, but such is my life!!
I walk around accompanied by a kind of wind-chime sound when I'm out of the house as I have to attach my car keys, house keys and work i.d. to my person, so that I don't lose them! Goodness only knows what would happen if I fell in the lake.....sink like a stone I expect!
I'm certain these aren't the only things that I'll think of, and will probably add later, but please let me know of any little things you do now, that make life a little easier.
You know you've got ME/CFS when .............
Wednesday 17 November 2010
Elephant Footprints on my Brain!
It's been a very long haul since the last time I felt able to write a post. My life seems to have been taken over by a very exhausting and largely unnecessary situation which is not easy to blog about.
I would love nothing more than to tell all, and share how difficult things can be for PWME who also work, but I'm scared that blogging about it may compromise myself and my situation at the moment. It REALLY doesn't need any more complicating!
So, I think I'm on safer ground telling you how my health is being affected by the 8 month ordeal (so far!) that I find myself staggering through - utterly mentally, emotionally and physically exhausted-!
A lot of added stress is being placed upon me by a boss and a situation, despite advice from medical practitioners, and the situation just goes on. I have been left striving to continue to do my job, giving 100% as I always do. This has not only halted my recovery from the ME/CFS crash that happened a year ago, but has reversed it somewhat.
My body has been less mobile, more painful and on the whole plain old 'doddery-er' than at any time I've been at work. I often drag my legs, stumble, lose balance, shake and can have very painful muscle spasms to contend with, whilst trying to maintain myself and my work persona.
My heart rate has been all over the place, and light and sound sensitivity have threatened to put me on my back more than once. The heavy dragging emptiness of the fatigue (many elephants worth!) is sometimes overwhelming, but me and the herd, we fight on!
Mentally and cognitively the challenges are ELEPHANT SIZED too! I am having to try to keep 'he said this' and 'she said that' all in my head and talk about them with some kind of fake confidence. I am trying to keep written records of key conversations but even committing them to paper is an ordeal that leaves 'elephant footprints' on my brain.....destroying it for the rest of the day!
Face to face meetings about contracts and grievances are horribly difficult to be in. Not only is there the stressful situation, but I am having to keep attention, understand and think through points with little or no support from others. I am under pressure to be able to respond with correct, meaningful words and facts in a confident and positive way. Not always possible for me, and certainly not easy even on the best of days!
My emotions are all over the place-am i able to cope for the next minute, hour, day or week? Is my energy going to hold out for this meeting, or this phone call? How long can i continue to go on like this before i am totally wiped and back on full time sick leave again? Is this what would make some people happy? Endlessly being kept in the dark is also taking an emotional toll.
Please forgive the indulgent 'offloading' that just got in the way of what could have been an informative and interesting post! Maybe when my body, heart and head can relax a little more I'll be able to create one!
I would love nothing more than to tell all, and share how difficult things can be for PWME who also work, but I'm scared that blogging about it may compromise myself and my situation at the moment. It REALLY doesn't need any more complicating!
So, I think I'm on safer ground telling you how my health is being affected by the 8 month ordeal (so far!) that I find myself staggering through - utterly mentally, emotionally and physically exhausted-!
A lot of added stress is being placed upon me by a boss and a situation, despite advice from medical practitioners, and the situation just goes on. I have been left striving to continue to do my job, giving 100% as I always do. This has not only halted my recovery from the ME/CFS crash that happened a year ago, but has reversed it somewhat.
My body has been less mobile, more painful and on the whole plain old 'doddery-er' than at any time I've been at work. I often drag my legs, stumble, lose balance, shake and can have very painful muscle spasms to contend with, whilst trying to maintain myself and my work persona.
My heart rate has been all over the place, and light and sound sensitivity have threatened to put me on my back more than once. The heavy dragging emptiness of the fatigue (many elephants worth!) is sometimes overwhelming, but me and the herd, we fight on!
Mentally and cognitively the challenges are ELEPHANT SIZED too! I am having to try to keep 'he said this' and 'she said that' all in my head and talk about them with some kind of fake confidence. I am trying to keep written records of key conversations but even committing them to paper is an ordeal that leaves 'elephant footprints' on my brain.....destroying it for the rest of the day!
Face to face meetings about contracts and grievances are horribly difficult to be in. Not only is there the stressful situation, but I am having to keep attention, understand and think through points with little or no support from others. I am under pressure to be able to respond with correct, meaningful words and facts in a confident and positive way. Not always possible for me, and certainly not easy even on the best of days!
My emotions are all over the place-am i able to cope for the next minute, hour, day or week? Is my energy going to hold out for this meeting, or this phone call? How long can i continue to go on like this before i am totally wiped and back on full time sick leave again? Is this what would make some people happy? Endlessly being kept in the dark is also taking an emotional toll.
Please forgive the indulgent 'offloading' that just got in the way of what could have been an informative and interesting post! Maybe when my body, heart and head can relax a little more I'll be able to create one!
Monday 11 October 2010
One Year Old Today!
It's a bit of a special day today, exactly a year since the accident that was most likely the cause of my latest ME/CFS crash, which caught up with me about a week later.
My son and I were out on our pony carriage, I was having a period of OK-ish health so all was good. The edited version of events was that a large dog jumped out at my pony's head, so he jumped onto the grass verge to get away, taking the carriage and us with him. This would have been OK if the verge were flat, but it was very steeply sloped and so the carriage went over and we were flung out. My son was shocked and a little winded (they bounce at 15 don't they!) and I broke a bone in my back (didn't do the bouncing thing quite so well huh!).
A couple of days later I began to feel unwell, but as all I could do was stand or lie down, I was resting as much as I was able to in the painfull circumstances! Things started to really catch up with me about a week later and ended up in a full blown crash, hearing, eyes, brain, skin tingles, pain, stiffness, balance, energy, nausea, spaced out, etc etc, you name it, I had taken a delivery of it!
My usual pattern of crash and recovery has always been fairly good, usually a slow build up to a crash, feeling it creep up on me over a month or so, then 2 or 3 months off work and back to where I was before. The whole episode lasting about 5 months from crash to full time work again.
I was not prepared for the impact (if that's the most apt word) that this relapse would have on me.
I returned to work in December last year, and have had a year of illness and struggles to keep my head above water at work, starting on just 2 part-mornings a week, and building up.
A whole year later and I am still struggling with hearing issues, skin sensations and aches and pains. I am stiff and a bit clumsy, but not nearly so bad. 'Concrete-brain' and word finding are horrendous. My stamina and energy are still much reduced compared to 'pre-carriage stunt' levels, and I have come to the conclusion that I am probably going to stay like this, certainly for the time being.
If I had taken more time off work would I have made a better recovery? Has pushing myself this year taken it's toll? Is this why I'm still this ill? Who knows, we all do what we think is best at the time and that's fine.
It's been the most life changing year so far, I have had to reduce what I do for the longest period since I was first ill, in 2000. I've done a lot of accepting!
Not meaning to sound cheesy, I am more settled with my illness and state of health than ever before. My husband is more accepting, which makes a huge difference to everything, and I've stopped feeling so guilty and trying to deny it all the time. I now have friends with ME/CFS too, it's all made a much happier me!
I know I moan and grumble but just imagine what I WOULD have been like!
My son and I were out on our pony carriage, I was having a period of OK-ish health so all was good. The edited version of events was that a large dog jumped out at my pony's head, so he jumped onto the grass verge to get away, taking the carriage and us with him. This would have been OK if the verge were flat, but it was very steeply sloped and so the carriage went over and we were flung out. My son was shocked and a little winded (they bounce at 15 don't they!) and I broke a bone in my back (didn't do the bouncing thing quite so well huh!).
A couple of days later I began to feel unwell, but as all I could do was stand or lie down, I was resting as much as I was able to in the painfull circumstances! Things started to really catch up with me about a week later and ended up in a full blown crash, hearing, eyes, brain, skin tingles, pain, stiffness, balance, energy, nausea, spaced out, etc etc, you name it, I had taken a delivery of it!
My usual pattern of crash and recovery has always been fairly good, usually a slow build up to a crash, feeling it creep up on me over a month or so, then 2 or 3 months off work and back to where I was before. The whole episode lasting about 5 months from crash to full time work again.
I was not prepared for the impact (if that's the most apt word) that this relapse would have on me.
I returned to work in December last year, and have had a year of illness and struggles to keep my head above water at work, starting on just 2 part-mornings a week, and building up.
A whole year later and I am still struggling with hearing issues, skin sensations and aches and pains. I am stiff and a bit clumsy, but not nearly so bad. 'Concrete-brain' and word finding are horrendous. My stamina and energy are still much reduced compared to 'pre-carriage stunt' levels, and I have come to the conclusion that I am probably going to stay like this, certainly for the time being.
If I had taken more time off work would I have made a better recovery? Has pushing myself this year taken it's toll? Is this why I'm still this ill? Who knows, we all do what we think is best at the time and that's fine.
It's been the most life changing year so far, I have had to reduce what I do for the longest period since I was first ill, in 2000. I've done a lot of accepting!
Not meaning to sound cheesy, I am more settled with my illness and state of health than ever before. My husband is more accepting, which makes a huge difference to everything, and I've stopped feeling so guilty and trying to deny it all the time. I now have friends with ME/CFS too, it's all made a much happier me!
I know I moan and grumble but just imagine what I WOULD have been like!
Sunday 10 October 2010
A Very Yurty Autumn!
Hello again, long time no blog! I've been having a somewhat cruddy time of it and really couldn't begin to think about blogging. I think it would have turned into a moan-fest so I saved you all!!!
You'll be pleased to know I'm not moaning, just bringing you up to speed with life in my little bit of the world.
I have spent a couple of weeks living in my yurt, well, to be more accurate, sleeping and spending much more time in it. I have this wonderful yurt, but neither my husband or son would come sleep in it with me, so I finally decided to move in, and if they wanted to be with me they would join me eventually! It is a lovely relaxing little space, and so cosy that I haven't yet had to light the fire!
I love waking up in there, listening to the dawn chorus and the sounds of the morning. But let's not forget those often unheard sounds of the night! The foxes screeching and running around outside the yurt, cats fighting, badgers snuffling and our resident owl hooting and landing on the roof every so often. The yurt is next to some high vegetation and often suffers from mouse-invasion in the winter so I think the owl sits on my roof looking down for his dinner!
When I can't sleep I often lie on my bed with the door open, watching the foxes, badgers, bats and the owl. It is truly a calming and comforting experience, and Autumn is my favourite time of year.
I'm always excited by the change in the weather, the pony growing his winter coat, the squirrels raiding my hazelnut trees, and the abundance of free food out there, ours for the taking! (Although maybe not the hazelnuts, squiggies got there first!) It is time to get firewood in, to sweep the leaves from the hen house roof and collect the apples from the orchard. Anyone want a ton or two, I'm inundated with Bramleys!!!!!
I can't get out to do the garden jobs I used to, I have to frustratedly act as 'foreman' now-a role I'm not at all comfy with! I long to be out there mucking out the hen house, digging manure into the veg-plot, tieing back the brambles and much more. I TRY SO HARD to be the outdoorsy girl I was even just this time last year, but not possible at present.
Instead I boom and bust, when I get down to see the pigs in the orchard (maybe once a week) that turns into frantically using the last dribble of energy whilst there, to collect as many windfall apples as possible as I can't stand waste! Then I'm trying to decide whether I'm able to carry them up to the house, or just leave them in a prominent position for hubby to see and do the donkey-work.
This ME/CFS really messes with your day, week, month and in fact your year! Or years!
You'll be pleased to know I'm not moaning, just bringing you up to speed with life in my little bit of the world.
I have spent a couple of weeks living in my yurt, well, to be more accurate, sleeping and spending much more time in it. I have this wonderful yurt, but neither my husband or son would come sleep in it with me, so I finally decided to move in, and if they wanted to be with me they would join me eventually! It is a lovely relaxing little space, and so cosy that I haven't yet had to light the fire!
I love waking up in there, listening to the dawn chorus and the sounds of the morning. But let's not forget those often unheard sounds of the night! The foxes screeching and running around outside the yurt, cats fighting, badgers snuffling and our resident owl hooting and landing on the roof every so often. The yurt is next to some high vegetation and often suffers from mouse-invasion in the winter so I think the owl sits on my roof looking down for his dinner!
When I can't sleep I often lie on my bed with the door open, watching the foxes, badgers, bats and the owl. It is truly a calming and comforting experience, and Autumn is my favourite time of year.
I'm always excited by the change in the weather, the pony growing his winter coat, the squirrels raiding my hazelnut trees, and the abundance of free food out there, ours for the taking! (Although maybe not the hazelnuts, squiggies got there first!) It is time to get firewood in, to sweep the leaves from the hen house roof and collect the apples from the orchard. Anyone want a ton or two, I'm inundated with Bramleys!!!!!
I can't get out to do the garden jobs I used to, I have to frustratedly act as 'foreman' now-a role I'm not at all comfy with! I long to be out there mucking out the hen house, digging manure into the veg-plot, tieing back the brambles and much more. I TRY SO HARD to be the outdoorsy girl I was even just this time last year, but not possible at present.
Instead I boom and bust, when I get down to see the pigs in the orchard (maybe once a week) that turns into frantically using the last dribble of energy whilst there, to collect as many windfall apples as possible as I can't stand waste! Then I'm trying to decide whether I'm able to carry them up to the house, or just leave them in a prominent position for hubby to see and do the donkey-work.
This ME/CFS really messes with your day, week, month and in fact your year! Or years!
Sunday 3 October 2010
Reconcilliation and Rosehips!
After a somewhat unsettled time here, there seems to have been a shift. A long held attitude of indifference seems to have been chipped away a little, and the 'chap' concerned is much more, erm, well CONCERNED!
It has been a revelation for me, I can now see what I have missed out on all these years, but never mind. Maybe I wouldn't have been the strong(-ish) person I am now if I had always had a crutch to fall back on, and not just my own resilience. I am not at all bitter, just blooming pleased that it happened now!
Anyhoo- Reconcilliation there has been, and one which will last I'm sure. I won't go into what and how it happened, too boring and far too unbloggable!
And Rosehips-Now there's room in my concrete head for other stuff, it's Autumn again and time to get myself out in the fresh air to collect the free food that is ALL OVER THE PLACE just now. Now is the best time to make Rowan Jelly (great with all meat, hot and cold) and Roship syrup, which has helped keep the family fairly sniffle free over the last year, as I'm told it has 20 times the vitC content of oranges. But all I know is it's darned easy to make, and tastes gorgeous! There's some on the go right now, it's an M.E. friendly thing to make as it takes no stirring, no pot watching and very little energy outlay. The end product is yummilicious and very good on all puddings and cereal etc.
I have made all sorts of jam so far, and pickled beetroot like it's going out of fashion! I hate to think of anything going to waste out there, and feel compelled to pick what I can. I have to admit that it can sometimes be a bit of a chore when the energy isn't there for the essential duties of the day, and to find extra to stand next to a bush with your arms up is not always easy! (I mean picking fruit, not just standing there displaying my armpits to the world!)
In case any of you are interested in the Rosehip Syrup recipe....
2lbs or 1kg of Rosehips
1 and 3/4 lbs of sugar
Put the hips in the blender till they're coarsely chopped then put them into a pan containing 1.5litres or 3pints of boiling water. Bring to the boil then remove from the heat and let stand for 15 minutes (you don't have to, you can take a break just now).
Pour into a linen Jelly bag (or linen shopper from the co-op supermarket, much cheaper and just as good!) and allow to drip till it stops (another little sit down!).
Put the residue back into the pan with 750ml or 1 and 1/2 pints boiling water. Stir and allow to stand for 10 minutes (again, you don't have to)! Pour back into the jelly bag and wait till it stops dripping. I usually have another 60p shopper ready to pour the whole mixture back through, as you need to remove ALL the little hairs as they can be an internal irritant.
Put the juice into a clean pan and reduce till it measures about 750ml or 1 and 1/2 pints liquid. Add 900g or 1 and 3/4 lbs sugar and boil for a further 5 minutes.
Pour into hot, sterile bottles or jars and seal at once.
There you have it, enough vitC to see you through the winter, and you've had some pretty decent sits down along the way!
Friday 17 September 2010
Support-the act of bearing the weight of or strengthening
Firstly I NEED to say that none of what follows in any way refers to you, my friends. You are my support, my outlet and for all this I thank you.
I fly through my world very much alone. Most of my close or extended family are somewhat less than supportive, the subject of my health is rarely discussed or acknowledged. If I do venture to talk about some aspect of it, maybe because it is particularly difficult or worrying, then I'm met with almost universal indifference.
I know that it could be an attempt at denial by people who love me, but it never feels anything other than rude, hurtful and demeaning. I am left with a nagging doubt about how much they actually care. So, as a result, over the years I have learnt not to venture much information, as just keeping it to yourself is safer than trusting that others might acknowledge, and when they don't it hurts too much to keep putting yourself through.
Like sitting at the top of a steep hill, on a bike. Do you risk something, be a little brave and trust that if you ride down the brakes will stop you, or do you get off and walk, keeping things safe, cos the brakes didn't work last time, or the time before, and you got hurt.
Not the best analogy ever, but hey, sorry, ME-brain!
This is tough enough when it's the people you see occasionally, high days and holidays, but what about those you live with, the closest family of all?
I have been struggling for 10 years, trying to make my hubby aware of my illness and symptoms. You'd think he had a handle on it a little by now, but it appears not. Not only does he leave housework etc for days/weeks, till whatever has put me in bed has passed and I'm vertical (however wobbly!) again, but most weekends he sends me out to do things, the latest being to manhandle and collect 2 sacks of pig food! This is just typical behaviour, by no means the only examples dear reader!
I try to say what is happening to me, what I'm experiencing, especially on the days things are teetering and I really need to take extra care. I try to make it 'user friendly' and relate to things he might have an understanding of. Such as my almost perfected 'my muscles have no power today, lifting that mug of tea feels like it's a bucket'! I know, I know, genius!
Over the years I have come sadly, and reluctantly to the conclusion that he isn't really bothered. I reached this conclusion by the same method as we were all diagnosed, by a process of excluding all other causes first!
I tried the 'he's scared', no go.... then there's the 'he doesn't understand cos it's such a hard thing to get your head around' no go, after all these years and lots of explaining. I've comforted myself with the 'he's just hiding his head in the sand and hoping it'll all go away' no go....10 years, total indifference when I, or any of my friends speak about it has lead me to diagnose..............
A severe case of U.M.S. (Unsupportive Male Syndrome) with tendencies towards CCL (Couldn't Care Less)!
Not an easy diagnosis for us spouse's to live with but I'm doing my best!
I fly through my world very much alone. Most of my close or extended family are somewhat less than supportive, the subject of my health is rarely discussed or acknowledged. If I do venture to talk about some aspect of it, maybe because it is particularly difficult or worrying, then I'm met with almost universal indifference.
I know that it could be an attempt at denial by people who love me, but it never feels anything other than rude, hurtful and demeaning. I am left with a nagging doubt about how much they actually care. So, as a result, over the years I have learnt not to venture much information, as just keeping it to yourself is safer than trusting that others might acknowledge, and when they don't it hurts too much to keep putting yourself through.
Like sitting at the top of a steep hill, on a bike. Do you risk something, be a little brave and trust that if you ride down the brakes will stop you, or do you get off and walk, keeping things safe, cos the brakes didn't work last time, or the time before, and you got hurt.
Not the best analogy ever, but hey, sorry, ME-brain!
This is tough enough when it's the people you see occasionally, high days and holidays, but what about those you live with, the closest family of all?
I have been struggling for 10 years, trying to make my hubby aware of my illness and symptoms. You'd think he had a handle on it a little by now, but it appears not. Not only does he leave housework etc for days/weeks, till whatever has put me in bed has passed and I'm vertical (however wobbly!) again, but most weekends he sends me out to do things, the latest being to manhandle and collect 2 sacks of pig food! This is just typical behaviour, by no means the only examples dear reader!
I try to say what is happening to me, what I'm experiencing, especially on the days things are teetering and I really need to take extra care. I try to make it 'user friendly' and relate to things he might have an understanding of. Such as my almost perfected 'my muscles have no power today, lifting that mug of tea feels like it's a bucket'! I know, I know, genius!
Over the years I have come sadly, and reluctantly to the conclusion that he isn't really bothered. I reached this conclusion by the same method as we were all diagnosed, by a process of excluding all other causes first!
I tried the 'he's scared', no go.... then there's the 'he doesn't understand cos it's such a hard thing to get your head around' no go, after all these years and lots of explaining. I've comforted myself with the 'he's just hiding his head in the sand and hoping it'll all go away' no go....10 years, total indifference when I, or any of my friends speak about it has lead me to diagnose..............
A severe case of U.M.S. (Unsupportive Male Syndrome) with tendencies towards CCL (Couldn't Care Less)!
Not an easy diagnosis for us spouse's to live with but I'm doing my best!
Monday 13 September 2010
Doh!
Ok, time I came clean about why I'm feeling a bit down at the moment.
Most of my 10 years of elephant carrying has been fairly predictable. After an initial year spent bed/housebound I made it back to a level of functioning which allowed me to work, and even attempt a degree course (which I was unable to finish I'm afraid!).
I mostly poddled along day to day, coping with my symptoms and limitations as best I could. These were at times quite debilitating, but occasionally I managed periods of relative wellness, (it's ALL relative isn't it?) at one point I even managed a trip to Mongolia and rode horses for days on end!
At some point in each of the last 10 years I have had a relapse, crash, setback, whatever you call it, it's the same old beast! These crashes have always been debilitating, disabling, difficult to manage, mood-shattering, and above all scary. Who's to say how long you'll be feeling this way, and what happens to family life, work and all those other commitments whilst you are unable to contribute? Your daily energy, health and resilience reduced to a fraction of what it was just weeks before.
These relapses have meant I needed months off work, only able to return when I felt it was possible. Work were always understanding, and some semblance of a normal life (whatever that is?) could be resumed. This last 'crash' has been quite different however and has opened up a whole new set of worries for me.
In October last year I had an accident, and a week or so after that my latest relapse started to kick in. My injuries made it hard to lie or sit down, so in the initial period after the accident I was not able to rest as I would have been doing normally. As I write this and read it back I am beginning to see how stupid I was to be surprised I had a relapse..... injury then no rest...."Doh!"
Still, I had an initial month off work and a 'managed' phased return to work was agreed and started. Yes, I know it makes no sense NOW! Just a month off for a ME/CFS crash! I thought that the slow and steady return to work was going to be the best option and I stand by that...... but I should have been healthier and taken more time to recover before trying it!
Since December's return to working just two part mornings a week, I have strived to do as many hours as I can. I have spent each week pushing myself to up my hours and return to a full working week as I have always done. It has been nearly a whole year since this ME/CFS relapse started and although I have had some good days, it shows no signs of lifting and allowing me to settle back into my limited but fairly stable existence. I can manage working part time, but it is eating up my energy, and my life out of work is suffering to the point that it often becomes extinct!!!
I pushed myself constantly over this last year, and I can't help but wonder that if I'd not done so, would I have managed to return to work better and more fully than now? I don't know, but I DO KNOW how sick I feel almost all the time of late. Whether I'm at work or at home.
So now for the honest and heart-on-my-sleeve bit........ I am inevitably starting to ask myself difficult questions. Is this it for me now? Is this level of health/sickness my new 'norm'? Can I return to how I was this time last year, and manage to work as before?
Having a crisis of 'positive thinking'!
Most of my 10 years of elephant carrying has been fairly predictable. After an initial year spent bed/housebound I made it back to a level of functioning which allowed me to work, and even attempt a degree course (which I was unable to finish I'm afraid!).
I mostly poddled along day to day, coping with my symptoms and limitations as best I could. These were at times quite debilitating, but occasionally I managed periods of relative wellness, (it's ALL relative isn't it?) at one point I even managed a trip to Mongolia and rode horses for days on end!
At some point in each of the last 10 years I have had a relapse, crash, setback, whatever you call it, it's the same old beast! These crashes have always been debilitating, disabling, difficult to manage, mood-shattering, and above all scary. Who's to say how long you'll be feeling this way, and what happens to family life, work and all those other commitments whilst you are unable to contribute? Your daily energy, health and resilience reduced to a fraction of what it was just weeks before.
These relapses have meant I needed months off work, only able to return when I felt it was possible. Work were always understanding, and some semblance of a normal life (whatever that is?) could be resumed. This last 'crash' has been quite different however and has opened up a whole new set of worries for me.
In October last year I had an accident, and a week or so after that my latest relapse started to kick in. My injuries made it hard to lie or sit down, so in the initial period after the accident I was not able to rest as I would have been doing normally. As I write this and read it back I am beginning to see how stupid I was to be surprised I had a relapse..... injury then no rest...."Doh!"
Still, I had an initial month off work and a 'managed' phased return to work was agreed and started. Yes, I know it makes no sense NOW! Just a month off for a ME/CFS crash! I thought that the slow and steady return to work was going to be the best option and I stand by that...... but I should have been healthier and taken more time to recover before trying it!
Since December's return to working just two part mornings a week, I have strived to do as many hours as I can. I have spent each week pushing myself to up my hours and return to a full working week as I have always done. It has been nearly a whole year since this ME/CFS relapse started and although I have had some good days, it shows no signs of lifting and allowing me to settle back into my limited but fairly stable existence. I can manage working part time, but it is eating up my energy, and my life out of work is suffering to the point that it often becomes extinct!!!
I pushed myself constantly over this last year, and I can't help but wonder that if I'd not done so, would I have managed to return to work better and more fully than now? I don't know, but I DO KNOW how sick I feel almost all the time of late. Whether I'm at work or at home.
So now for the honest and heart-on-my-sleeve bit........ I am inevitably starting to ask myself difficult questions. Is this it for me now? Is this level of health/sickness my new 'norm'? Can I return to how I was this time last year, and manage to work as before?
Having a crisis of 'positive thinking'!
Thursday 9 September 2010
Free Food and No Energy!
I love to forage for free, wild food. Just now is the forager's busy season, with Elderberries, Blackberries, Crabapples, Rosehips, Mushrooms, Damsons, Plums, Sloes, Rowanberries and Hawthorn Berries, not to mention the usual staples of this time of year such as Pears, Rhubarb, Apples and all the veg from our plot and that given by friends.
The only problem with all this foraging is that you have to DO SOMETHING with it all once you have it home! Well, I have managed to make some Damson Jam and Apple and Blackberry Cheese over the last couple of weeks, but that's nothing to what I want to be doing.
In my kitchen I have Rhubarb stalks, Plums and Damsons from our garden and a huge basket of Pears which were kindly donated to us. I need to use them.
Yesterday I had a day to myself, nobody else about ALL DAY-a real and rare treat for me! I had made plans to make some pear cakes, fruit vodka, plum jam, and then maybe relax with my rag rugging as I've got to finish a little rug for a friend.
ME STRIKES AGAIN! I got up and stripped my bed, then I began to feel the familiar 'full of rocks' heaviness creeping up on me. Poo, Bum and Pants!!!
The day went like this...-10 minutes upright, resulting in feeling so weak and ill that even I couldn't be stubborn enough to continue. Return to my bed or the sofa, close my eyes and wait it out till I feel a little better. Another 10 minutes up and repeat the same monotonous routine over and over. I was sooooo frustrated not to have achieved a fraction of what I wanted to do. I managed to make pear cakes but it took most of the day, working a little at a time and falling back onto the sofa to rest in between.
Early afternoon I gave up trying and retired to the bed to sleep properly, which did help I am pleased to say. My evening got a little more energetic, and I managed a nice cup of tea with my old friend Sylvia (my traveller friend from earlier blogs).
But I am still frustrated at my lack of ability again, I know I sound like a cracked record, but that's the nature of the illness we face.... it's a monotonous and relentless slog against odds which sometimes seem very stacked against us.
Yes, dear reader, I'm having a tough time again and a grumble does us all good...... I just had mine, feel free to leave me yours!
Fair's fair!
The only problem with all this foraging is that you have to DO SOMETHING with it all once you have it home! Well, I have managed to make some Damson Jam and Apple and Blackberry Cheese over the last couple of weeks, but that's nothing to what I want to be doing.
In my kitchen I have Rhubarb stalks, Plums and Damsons from our garden and a huge basket of Pears which were kindly donated to us. I need to use them.
Yesterday I had a day to myself, nobody else about ALL DAY-a real and rare treat for me! I had made plans to make some pear cakes, fruit vodka, plum jam, and then maybe relax with my rag rugging as I've got to finish a little rug for a friend.
ME STRIKES AGAIN! I got up and stripped my bed, then I began to feel the familiar 'full of rocks' heaviness creeping up on me. Poo, Bum and Pants!!!
The day went like this...-10 minutes upright, resulting in feeling so weak and ill that even I couldn't be stubborn enough to continue. Return to my bed or the sofa, close my eyes and wait it out till I feel a little better. Another 10 minutes up and repeat the same monotonous routine over and over. I was sooooo frustrated not to have achieved a fraction of what I wanted to do. I managed to make pear cakes but it took most of the day, working a little at a time and falling back onto the sofa to rest in between.
Early afternoon I gave up trying and retired to the bed to sleep properly, which did help I am pleased to say. My evening got a little more energetic, and I managed a nice cup of tea with my old friend Sylvia (my traveller friend from earlier blogs).
But I am still frustrated at my lack of ability again, I know I sound like a cracked record, but that's the nature of the illness we face.... it's a monotonous and relentless slog against odds which sometimes seem very stacked against us.
Yes, dear reader, I'm having a tough time again and a grumble does us all good...... I just had mine, feel free to leave me yours!
Fair's fair!
Sunday 5 September 2010
Silly Me!
I am a silly old 'elephant carrier' aren't I?!?
I have been pushing things just a little too much for quite a time now, getting on with life and trying to be all things to all people. Not enough to actually crash, on any one day, but slowly grinding myself into a mushy, achey, braindead and foggy....... mess!
Messy is how I'm feeling just now.
Short post - normal service will be resumed - soon I hope!
I have been pushing things just a little too much for quite a time now, getting on with life and trying to be all things to all people. Not enough to actually crash, on any one day, but slowly grinding myself into a mushy, achey, braindead and foggy....... mess!
Messy is how I'm feeling just now.
Short post - normal service will be resumed - soon I hope!
Monday 30 August 2010
My Brain Scares Me Sometimes!
I'm missing my holidays, yes I have only worked 2 days per week over the summer, but I've had possibly the most stressful 6 weeks ever!
There have been work stresses which have meant late evening phone calls, conversations which need brain power and concentration in spade loads. Exhausting!
My husband has been doing fencing, making gates etc, for his pigs. This has meant I (and it has to be me because he doesn't drive) have spent many hours going here and there on some errand or another. Buying, sourcing, fetching and carrying bolts, wire, screws, wood, hay, pig food etc etc etc....the list seems endless! Exhausting!
Looking after the pony and carriage, meeting the farrier etc. Being taxi driver for Ben to go back and forth to work at the stable, and his riding lessons. Exhausting!
Trying to cope with family life over the summer, demands v pacing/resting. Need I say more, I know you're all nodding sagely.
Organised a 16th birthday for my son, which I don't begrudge the guy at all, but it's.... wait for it......... Exhausting!
Looking at it all it's little wonder I'm as frazzled as I am, it's a formidable and daunting list. All this mixed in with a hubby who, at times, is a good way short of being understanding, and the general day to day activities that I normally manage.
I think I've done fairly well to still be upright by now!
It is all very stressful, and I feel that stress bodily and mentally, but mostly cognitively. I can forget within a nano-second what I was doing or saying. This is OK when it's something like "which load of washing was I putting in the machine?" But when it's something a bit more important (not that clean clothes aren't important you understand!) such as, when driving, which pedal is the brake? Boy it sometimes scares the pants off me!
That particular lapse has only happened once, just yesterday, and I'm still reeling from the feeling of panic. Having to check in my mirror then take both feet off the pedals and re-evaluate what I was asking them to do. The possible consequences are too much to think about. In fact most things are just now!
These cognitive challenges are a whole post on their own, but the point of this one, I think, is to tie my concrete-headedness in with the difficult times of late. Much as I try not to admit it, I can't handle stress like I used to, and it's getting worse.
There are some difficult times ahead, my son starts college and later this week there is a meeting at work that I would much rather never needed to happen. I am seriously wondering how much longer I will be able to sustain the upright version of me.....!
I hope I can, it's a much better version than the pyjama'd and horizontal one that threatens to rear her 'ugly' head!
I hope, oh faithful and determined reader, that our respective 'worlds' are kind to us this week, and our brains can keep up!!!!!!
There have been work stresses which have meant late evening phone calls, conversations which need brain power and concentration in spade loads. Exhausting!
My husband has been doing fencing, making gates etc, for his pigs. This has meant I (and it has to be me because he doesn't drive) have spent many hours going here and there on some errand or another. Buying, sourcing, fetching and carrying bolts, wire, screws, wood, hay, pig food etc etc etc....the list seems endless! Exhausting!
Looking after the pony and carriage, meeting the farrier etc. Being taxi driver for Ben to go back and forth to work at the stable, and his riding lessons. Exhausting!
Trying to cope with family life over the summer, demands v pacing/resting. Need I say more, I know you're all nodding sagely.
Organised a 16th birthday for my son, which I don't begrudge the guy at all, but it's.... wait for it......... Exhausting!
Looking at it all it's little wonder I'm as frazzled as I am, it's a formidable and daunting list. All this mixed in with a hubby who, at times, is a good way short of being understanding, and the general day to day activities that I normally manage.
I think I've done fairly well to still be upright by now!
It is all very stressful, and I feel that stress bodily and mentally, but mostly cognitively. I can forget within a nano-second what I was doing or saying. This is OK when it's something like "which load of washing was I putting in the machine?" But when it's something a bit more important (not that clean clothes aren't important you understand!) such as, when driving, which pedal is the brake? Boy it sometimes scares the pants off me!
That particular lapse has only happened once, just yesterday, and I'm still reeling from the feeling of panic. Having to check in my mirror then take both feet off the pedals and re-evaluate what I was asking them to do. The possible consequences are too much to think about. In fact most things are just now!
These cognitive challenges are a whole post on their own, but the point of this one, I think, is to tie my concrete-headedness in with the difficult times of late. Much as I try not to admit it, I can't handle stress like I used to, and it's getting worse.
There are some difficult times ahead, my son starts college and later this week there is a meeting at work that I would much rather never needed to happen. I am seriously wondering how much longer I will be able to sustain the upright version of me.....!
I hope I can, it's a much better version than the pyjama'd and horizontal one that threatens to rear her 'ugly' head!
I hope, oh faithful and determined reader, that our respective 'worlds' are kind to us this week, and our brains can keep up!!!!!!
Thursday 26 August 2010
Thought Stream
Hey it seems like AGES since I wrote anything, it's not been through choice, but life has been keeping me busy, with not much cognitive 'oomph' to spare! I work just two days a week at the moment, and have been trying to keep up with family life and demands over the school holidays.
There is a pretty stressful work situation that has been brewing nicely for the last few months, and is now really taking it's toll on my head and it's tendency to 'jam'. There have been lots of anxious times, and some stressful encounters to try to get through. I am hoping that it will be nearer to it's conclusion next week. Fingers crossed for me! (Cos, if it goes on much longer I dunno if I will have the 'mojo' to keep up with it!)
My son is now 16! I am so proud of him, and the obstacles he overcomes- life has it's challenges for him too. He gained 7 GCSE's and is now looking forward to starting at college soon. He is heavily into horses and riding so he's off to do a horse care course.
Pigs are my husband's latest obsession, or more accurately two Kune Kune weaners (FYI- this is what they're called before they have their first litter) called Agnes and Winnie.
They are both quite nice girls, very affectionate and love a good belly scratch! They eat ALL my non-meat kitchen and garden scraps and are so clean I can't believe it! I have never come across such inoffensive creatures in my life. Think we humans could take a leaf outta their book!
But, having said that, have you ever tried to give a weaner an injection (shot!)? They're not quite so inoffensive then!
When I say obsession, I mean it! Hubby has turned into a 'pig-bore', he even has a webcam set up in their shed so he can see what they're up to 24/7!!! I think there has to be some kind of law against pig-cam, but he is LOVING it! Just looks like a lot of snoring, snoozing and scratching to me though!!! Perhaps that's what he likes about them!??!!
There is no point to this post, just a waffle- sorry if you were on the edge of your seat waiting for the deep and meaningful! It's just not going to happen today!
Health wise, (and I suppose we always have something to say on the matter hey!?) I am struggling with what I suspect will turn out to be Interstitial Cystitis. If you are with me on this one you'll know just what I'm talking about.....! My GP was going to give me something to help with it, but I am heavily against taking drugs until I have tried all other avenues, so I'll rethink this after giving some other lifestyle and diet changes a try first.
My stamina is low, my heartrate high, my head full of concrete and my body heavy, (Well, I suppose the 'head-concrete doesn't help.....!) I'm feeling just a teensy weensy bit frustrated as I'd really like to be boiling beetroots for pickling and making damson jam. But, instead of this I'm laying as flat as possible, TRYING to rest and type...!
I'm having an "oh woe is me" moment, no apologies! I know it'll pass and lets face it, we all have them!
There is a pretty stressful work situation that has been brewing nicely for the last few months, and is now really taking it's toll on my head and it's tendency to 'jam'. There have been lots of anxious times, and some stressful encounters to try to get through. I am hoping that it will be nearer to it's conclusion next week. Fingers crossed for me! (Cos, if it goes on much longer I dunno if I will have the 'mojo' to keep up with it!)
My son is now 16! I am so proud of him, and the obstacles he overcomes- life has it's challenges for him too. He gained 7 GCSE's and is now looking forward to starting at college soon. He is heavily into horses and riding so he's off to do a horse care course.
Pigs are my husband's latest obsession, or more accurately two Kune Kune weaners (FYI- this is what they're called before they have their first litter) called Agnes and Winnie.
They are both quite nice girls, very affectionate and love a good belly scratch! They eat ALL my non-meat kitchen and garden scraps and are so clean I can't believe it! I have never come across such inoffensive creatures in my life. Think we humans could take a leaf outta their book!
But, having said that, have you ever tried to give a weaner an injection (shot!)? They're not quite so inoffensive then!
When I say obsession, I mean it! Hubby has turned into a 'pig-bore', he even has a webcam set up in their shed so he can see what they're up to 24/7!!! I think there has to be some kind of law against pig-cam, but he is LOVING it! Just looks like a lot of snoring, snoozing and scratching to me though!!! Perhaps that's what he likes about them!??!!
There is no point to this post, just a waffle- sorry if you were on the edge of your seat waiting for the deep and meaningful! It's just not going to happen today!
Health wise, (and I suppose we always have something to say on the matter hey!?) I am struggling with what I suspect will turn out to be Interstitial Cystitis. If you are with me on this one you'll know just what I'm talking about.....! My GP was going to give me something to help with it, but I am heavily against taking drugs until I have tried all other avenues, so I'll rethink this after giving some other lifestyle and diet changes a try first.
My stamina is low, my heartrate high, my head full of concrete and my body heavy, (Well, I suppose the 'head-concrete doesn't help.....!) I'm feeling just a teensy weensy bit frustrated as I'd really like to be boiling beetroots for pickling and making damson jam. But, instead of this I'm laying as flat as possible, TRYING to rest and type...!
I'm having an "oh woe is me" moment, no apologies! I know it'll pass and lets face it, we all have them!
Wednesday 18 August 2010
Just a List!
Headache,
Dizziness,
Disorientation,
Skin and muscles sore to the touch,
'Wandering' skin sensations that sweep over my body,
Bladder pain,
Over sensitive hearing,
Symptoms fluctuate and change throughout the day,
Eye pain in bright light/sunlight,
Muscle spasms,
Weak legs,
Sore throat,
Easily startled by sound/touch,
Irregular heartbeat,
Occasional paralysis,
Tremors,
Weak and very painful arms,
Severe memory difficulties,
Bladder frequency,
Insomnia and sleep that doesn't refresh,
Sudden onset muscle weakness,
Chest pain,
Poor coordination/clumsiness,
Slow processing/thinking,
Word finding difficulties,
'Foggy' brain/thinking,
Inability to cope with one more health professional who believes this is all in my head!
Saturday 14 August 2010
Lost the plot!
Just can't seem to come up with anything interesting or even mildly diverting today, my head is creating a world of it's own and doesn't seem to have let me in on the plot!
I tried to talk to my friend last evening but the words just would not come, too hard to get them in my head, ordered, and spoken in a sensible and coherent way! Poor girl, she had to keep breaking the silence herself, whereas normally I can be relied upon to waffle on for Britain! I managed a few sentences of 'cocktail party' type chat, but nothing meaningful!! Sorry A!
This morning I tried to have a reasoned and sensible talk with my hubby, but I couldn't manage to make what was in my head come out of my mouth. Now, he'll tell you that is not something I usually have an issue with! Ha!
I really had trouble forming the thoughts and finding the words, it was worse than normal, and much more frustrating because I really wanted/needed to talk to him this morning. (Not that I don't at any other time you understand!)
'Thinking through treacle' doesn't touch how it feels, nor does 'brain fog'. I may have to return to that tired old analogy of 'Concrete'! As some of you will know I have regular attacks of 'concrete-headed-ness' and it can be extremely debilitating. Trying to explain to hubby, through the concrete, that I couldn't get my thoughts and words sorted, without the thoughts or words needed for such an explanation, was nigh on impossible today. I just stumbled about a bit, saying goodness knows what and floundering! Doesn't make for a good start to the day.
It all seems to be much worse at the moment, which I think is probably due to some pretty stressful situations here and there, taking their toll on my health and little grey cells. It doesn't take much extra in the brain, to throw it completely and render me a useless lump of uncommunicative, tastefully pyjama'd wife!
When I'm stressed I need to be able to think things through, to work out possible consequences and how it may be best to deal with them. But instead I find all I am doing is trying to bludgeon my way through the concrete to thoughts which whirl and slide about, making me more frustrated and emotional than relaxed and sorted.
Hey ho! For someone who's thoughts are 'sleeping with the fishes' I've managed quite a long post.....sorry if it's rambled, but I guess you're used to me by now!
I tried to talk to my friend last evening but the words just would not come, too hard to get them in my head, ordered, and spoken in a sensible and coherent way! Poor girl, she had to keep breaking the silence herself, whereas normally I can be relied upon to waffle on for Britain! I managed a few sentences of 'cocktail party' type chat, but nothing meaningful!! Sorry A!
This morning I tried to have a reasoned and sensible talk with my hubby, but I couldn't manage to make what was in my head come out of my mouth. Now, he'll tell you that is not something I usually have an issue with! Ha!
I really had trouble forming the thoughts and finding the words, it was worse than normal, and much more frustrating because I really wanted/needed to talk to him this morning. (Not that I don't at any other time you understand!)
'Thinking through treacle' doesn't touch how it feels, nor does 'brain fog'. I may have to return to that tired old analogy of 'Concrete'! As some of you will know I have regular attacks of 'concrete-headed-ness' and it can be extremely debilitating. Trying to explain to hubby, through the concrete, that I couldn't get my thoughts and words sorted, without the thoughts or words needed for such an explanation, was nigh on impossible today. I just stumbled about a bit, saying goodness knows what and floundering! Doesn't make for a good start to the day.
It all seems to be much worse at the moment, which I think is probably due to some pretty stressful situations here and there, taking their toll on my health and little grey cells. It doesn't take much extra in the brain, to throw it completely and render me a useless lump of uncommunicative, tastefully pyjama'd wife!
When I'm stressed I need to be able to think things through, to work out possible consequences and how it may be best to deal with them. But instead I find all I am doing is trying to bludgeon my way through the concrete to thoughts which whirl and slide about, making me more frustrated and emotional than relaxed and sorted.
Hey ho! For someone who's thoughts are 'sleeping with the fishes' I've managed quite a long post.....sorry if it's rambled, but I guess you're used to me by now!
Monday 2 August 2010
I Follow Humbly.....
It's been AGES since I have had the opportunity to write anything at all. I've not been lazy, promise! There have been obstacles - stressful work situations, stressful home ones, visitors, DIY and the arrival of hubby's piglets to name but a few. Still, I'm here now so here goes!
'Lark Rise to Candleford' is undoubtedly the best book I have ever read, first when I was around 11years old, and then at least two or three times a year, each year since! It became my manual for living and shaped my life more than I had realised until recently.
For the uninitiated- I'm sorry that the magic hasn't reached you yet! This book is a semi-autobiography of a girl growing up in a tiny, isolated English hamlet (which Flora Thompson, the author, born and raised there, calls 'Lark Rise') in the late 1800's. It is a fantastic piece of social history detailing life at that time, for farm workers, housewives, children and the ordinary, poor folk of Oxfordshire.
My description of it does it no justice, really, just take my word for it and go read it!
I knew the place still existed as a real place called Juniper Hill, on the Northamptonshire/Oxfordshire border, but I had no idea it was so unchanged since Flora wrote about it.I met a local historian in Juniper Hill last week, and did a little tour of the places she wrote about. It was sublime! To see the hamlet, walk the paths, even sit in her very pew in church! I could hear the voice of Flora, walking with me, describing the flowers, the scenes, and people she knew so intimately, in the words I knew by heart.
As I walked alone over the very ground she trod, I realised that it was her writings, her outlook and her experiences that have shaped who I am. I long for the simpler times, the horsedrawn carriage, growing your own food, making and mending what you need, keeping animals etc etc. Then it hit me.... without really following a plan I have tried to bring a little 'Flora Thompson' into Zarla all these years!
I have a pony and carriage which I drive, vegetable plots/herbs/edible plants, make rugs/glasses etc and keep sheep, pigs and hens!!!!! In this busy, bustling 21st Century world I am including as much as I can of her 19th Century one.
Back to the trip to Juniper Hill, I had the most amazing time. I'd never been there before, but because it was so unchanged, and I knew Flora's words so well, I just knew where everything was. I walked a path and just knew, even before I got to it, that there was a little copse with a deep forgotten pond. I have never felt so at home in somewhere I'd just seen! A very bizarre feeling.
The flowers she spoke of, in the places she said, all still there! I picked some and placed them in my book! It could not have been better, I almost felt as if the little girl Flora was walking with me, explaining as she went.... I know the book that well!
I managed all this with as many rests as I wanted, just sitting/lying in the long grass, in the tall yellow wheat etc, reading my book! I took all day about it, had food and drink in my pockets, and removed myself from the 21st, back to the 19th!!!!!
Saturday 31 July 2010
Reality check!
I love to blog about doing lovely things, as in the last post, 'I Follow Humbly'. This is unfortunately not always the reality of life however. I managed that Lark Rise trip through careful planning and taking it easy in the days leading up to it, so that I could enjoy it. Thankfully it paid off and I had a great time.
Since that trip things have conspired to bring me back to earth with a 'thump'! It is sometimes my own doing, cos I push myself to my limits (and sometimes beyond em) but this time I am largely blameless!
Work has been more than usually stressful this last couple of months, building nicely into a semi permanent 'teetering on the edge of crash' state! I find I am unable to sort a particularly knotty issue out, caused by circumstances out of my control, all getting a bit much with this illness that hates stress.
Since that trip things have conspired to bring me back to earth with a 'thump'! It is sometimes my own doing, cos I push myself to my limits (and sometimes beyond em) but this time I am largely blameless!
Work has been more than usually stressful this last couple of months, building nicely into a semi permanent 'teetering on the edge of crash' state! I find I am unable to sort a particularly knotty issue out, caused by circumstances out of my control, all getting a bit much with this illness that hates stress.
Whilst my energy levels have been worse there are the usual culprits that appear when things aren't going so well. That bone crushing, aching tiredness and weakness that can stop you in your tracks sometimes- the body that's suddenly too heavy to take another step, and a brain that might be able to do the Times crossword one minute but can't find the words I need to complete a sentence the next, (sorry, that's not strictly true-I don't think I could do the Times crossword even when well!) Hearing sensitivities, tremors, muscle spasms and brain-fuzz of the most debilitating 'I can't remember what i am supposed to be saying' kind are also here and look like they're staying!
I am prone to muscle spasms in all sorts of odd places but my lower tummy has been really troublesome just lately, with horribly painful spasms and tension in the area around my pelvic floor muscles. I just cant relax them at all, night or day. Night is worse as lying down seems to make the pain more intense...no sleep for days now! Is this just my own brand of ME/CFS or do others get similar symptoms too?
Things aren't always good in anyone's life, they're sometimes very hard, painful, lonely and frustrating but I have an unshakeable faith that things do change, and hopefully for the better.
Will someone remind me of this please, when I'm mired in pain, fatigue and a basement low mood!? It's sure to happen, not as yet as I am definitely upbeat, but, as they say, "it's not over till the fat lady sings!" (But, don't worry, I'M keeping MY mouth firmly glued shut!!!!!)
Tuesday 13 July 2010
Dissolving Concrete!
There's been a change in the weather here, from incredibly hot and humid, to plain old chilly with water falling out of the sky! Its been so long since that happened I've forgotten what it's called! Something to do with cats and dogs maybe?
It's a great thing though, it seems to have rained through my head, and taken some of the concrete with it, who'd have thought it, dissolving concrete! My head is clearer, calmer and I can think! Well, I know I'm maybe 'bigging up' my cognitive abilities, but it's all relative!
The world should get ready today as there are some knotty issues out there which I have been a bit remiss in sorting out. It's hard to have legality/policy based conversations with people when you are having trouble remembering what you were saying halfway through saying it!
There is a little teensy weensy bit of a downside though, cos we have ME/CFS and it's effects are always there - even when the concrete has trickled through the cracks in my brain. My head is clearer and feels great and I'm loving it, but my body is putting up a mega protest of it's own since the weather change.
I woke in head-to-toe pain yesterday, not something I usually suffer from. I generally manage to stay asleep if pain comes on overnight, it just hits me in the morning as I struggle with the usual joys of waking up. But this time I woke and was unable to move, call out, or poke my hubby to wake him! I just had to lay there for what seemed like an age, sweating and breathing my way through it till my arms would move and I could take the tablets which are kept in the bedside cabinet. When the pain had gone a little I was able to get up and go lie somewhere else, so hubby could sleep on.
I worked yesterday, even though I was a little drugged up on painkillers etc, but I made it through. I'm gonna have another go today as there are a couple of meetings I should be at, and I have tomorrow off anyhow.
It's a hard thing to do, to try to explain to healthy friends/family why I'd try to get to work through something that they would definitely stay in bed for. I think it has a lot to do with the constant sickness that this disease brings. We have to get used to a certain level of 'feeling ill' as being a good day, and if we stayed at home for every ache and pain we would, most likely, never be out at all.
I'm happy to put up with this level of pain (drugs accepted of course!!) if it means I get my head back and can carry on conversations and READ!
I hope that wherever you are the weather is being kind to you,
It's a great thing though, it seems to have rained through my head, and taken some of the concrete with it, who'd have thought it, dissolving concrete! My head is clearer, calmer and I can think! Well, I know I'm maybe 'bigging up' my cognitive abilities, but it's all relative!
The world should get ready today as there are some knotty issues out there which I have been a bit remiss in sorting out. It's hard to have legality/policy based conversations with people when you are having trouble remembering what you were saying halfway through saying it!
There is a little teensy weensy bit of a downside though, cos we have ME/CFS and it's effects are always there - even when the concrete has trickled through the cracks in my brain. My head is clearer and feels great and I'm loving it, but my body is putting up a mega protest of it's own since the weather change.
I woke in head-to-toe pain yesterday, not something I usually suffer from. I generally manage to stay asleep if pain comes on overnight, it just hits me in the morning as I struggle with the usual joys of waking up. But this time I woke and was unable to move, call out, or poke my hubby to wake him! I just had to lay there for what seemed like an age, sweating and breathing my way through it till my arms would move and I could take the tablets which are kept in the bedside cabinet. When the pain had gone a little I was able to get up and go lie somewhere else, so hubby could sleep on.
I worked yesterday, even though I was a little drugged up on painkillers etc, but I made it through. I'm gonna have another go today as there are a couple of meetings I should be at, and I have tomorrow off anyhow.
It's a hard thing to do, to try to explain to healthy friends/family why I'd try to get to work through something that they would definitely stay in bed for. I think it has a lot to do with the constant sickness that this disease brings. We have to get used to a certain level of 'feeling ill' as being a good day, and if we stayed at home for every ache and pain we would, most likely, never be out at all.
I'm happy to put up with this level of pain (drugs accepted of course!!) if it means I get my head back and can carry on conversations and READ!
I hope that wherever you are the weather is being kind to you,
Sunday 11 July 2010
Whatever next?
I blogged some time ago about my hubby's plans for keeping a couple of pigs in our orchard, but you never heard anything more.
Well, here we go again, he takes delivery of two gilts (sow piglets) next week! OMG, take a long look at my orchard as it is cos I think it may be a little less picturesque after they move in!
I don't really think he's fully aware of how much of his time they may take, and there's not a chance I will be mucking out or filling feed troughs! I don't think pig keeping figures highly on the recommended coping strategies for ME/CFS!
It's a fair way from the house to the orchard, (past the yurt!) so I'll only be visiting on those good days anyway!
Yesterday he and his father made a gate, and put in the fence posts around the pigpen. Today they plan to put the wire on the fence, and plumb in the water trough. Where do they find their energy from...? My hubby's father is only 76!!!
I went down, held a few bits of wood in the right place for measuring etc, then retreated to the house for a rest! Ahh, (sighs wistfully) I used to be the one working from dawn till dusk on a project like this, enjoying the whole process.
I really miss the sense of achievement I used to get from a busy day gardening or something like that. Now, thinking about it, I feel rather removed from my garden, and the whole excitement surrounding the piggy-arrivals.
I tend to just experience things in terms of seats and hammocks, as opposed to the spades and lawnmowers of the past. Mmm, feeling a little wistful now.......
I would have enjoyed the pig aspect much more too, pre-M.E. But, as it is I tend to look upon everything with cautious eyes, hoping that the elephants wont strike!
(Hey, sorry but it must have been a couple of posts since the last 'Elephant' reference, so live with it!)
Body and brain tired, thinking through sludge again, eyes preferring not to focus properly, muscle spasms, sensitive hearing etc etc, but this crazy life goes on...!
Pet pigs, whatever next?!?!???
Well, here we go again, he takes delivery of two gilts (sow piglets) next week! OMG, take a long look at my orchard as it is cos I think it may be a little less picturesque after they move in!
I don't really think he's fully aware of how much of his time they may take, and there's not a chance I will be mucking out or filling feed troughs! I don't think pig keeping figures highly on the recommended coping strategies for ME/CFS!
It's a fair way from the house to the orchard, (past the yurt!) so I'll only be visiting on those good days anyway!
Yesterday he and his father made a gate, and put in the fence posts around the pigpen. Today they plan to put the wire on the fence, and plumb in the water trough. Where do they find their energy from...? My hubby's father is only 76!!!
I went down, held a few bits of wood in the right place for measuring etc, then retreated to the house for a rest! Ahh, (sighs wistfully) I used to be the one working from dawn till dusk on a project like this, enjoying the whole process.
I really miss the sense of achievement I used to get from a busy day gardening or something like that. Now, thinking about it, I feel rather removed from my garden, and the whole excitement surrounding the piggy-arrivals.
I tend to just experience things in terms of seats and hammocks, as opposed to the spades and lawnmowers of the past. Mmm, feeling a little wistful now.......
I would have enjoyed the pig aspect much more too, pre-M.E. But, as it is I tend to look upon everything with cautious eyes, hoping that the elephants wont strike!
(Hey, sorry but it must have been a couple of posts since the last 'Elephant' reference, so live with it!)
Body and brain tired, thinking through sludge again, eyes preferring not to focus properly, muscle spasms, sensitive hearing etc etc, but this crazy life goes on...!
Pet pigs, whatever next?!?!???
Tuesday 6 July 2010
Concrete in the mist!
23- This is how many times I've started this post this morning....! Oh the things my head is and isn't doing today. It's a painful mess of whizzing/flickering thoughts, images and snippets of remembered sounds.
On days like these I can best describe my head as 'concrete' in the mist.....! The mist swirls with these unwanted and incredibly random thoughts and 'stuff'. If I try to navigate through this mist, to think properly, I eventually get to the concrete.....this is what has happened to the rest of my brain!
(It's now much later, it's exhausting this blogging, especially when someone has concreted the inside of my head!)
It feels physically heavy and 'set'. Not in a nice 'set yogurt' or 'jelly (jello)' kind of way, but definitely concrete.
Thinking and trying to be creative (blogging etc) through this is incredible, and I think i'm going on about it too much, but today I'm really struggling and have to admit to that! I can't remember a time it was ever this bad!
It's not going to be a post with a point, I'm just resigned to that after hours of trying to write and failing,......!
This is probably my most debilitating symptom, and certainly hard to describe to others, especially our nearest, dearest and interested others. Hubby has retreated, as he can see how tough i'm finding it today.
I hope you all have a concrete-free day!
On days like these I can best describe my head as 'concrete' in the mist.....! The mist swirls with these unwanted and incredibly random thoughts and 'stuff'. If I try to navigate through this mist, to think properly, I eventually get to the concrete.....this is what has happened to the rest of my brain!
(It's now much later, it's exhausting this blogging, especially when someone has concreted the inside of my head!)
It feels physically heavy and 'set'. Not in a nice 'set yogurt' or 'jelly (jello)' kind of way, but definitely concrete.
Thinking and trying to be creative (blogging etc) through this is incredible, and I think i'm going on about it too much, but today I'm really struggling and have to admit to that! I can't remember a time it was ever this bad!
It's not going to be a post with a point, I'm just resigned to that after hours of trying to write and failing,......!
This is probably my most debilitating symptom, and certainly hard to describe to others, especially our nearest, dearest and interested others. Hubby has retreated, as he can see how tough i'm finding it today.
I hope you all have a concrete-free day!
Friday 2 July 2010
Headless again!
Ooh, I got myself in such a tizz yesterday! I was at the office, supposedly creating, saving and printing out a few diary sheets with records of my appointments for the last few weeks, on my computer.
I got in a real pickle as each time I'd saved a diary sheet on the computer, I'd instantly forget that I had, then I'd not remember if I'd printed it yet, and go look in my printer.
Then when I got back to the computer I'd not remember if I'd saved it, so I'd check, then....... did I already print this one? Back to the printer again to check!!!!!
It took me a very long time and lots of my already dwindling energy to complete just four sheets! Not great workload turnout!
I was so hooked up with trying to concentrate on my task, I forgot to think "Hey, this is hard, must be time to go home!"
The after effects are still with me, over the evening and last night my brain has gone to concrete again. Those of you who know me will have noticed I am back to writing just a couple of lines of text before I have to have a space, to help me 'get it'!
I won't even tell you how long I've been working on this post, or how many times I've read and re-read it as I've gone along.
My problems with the written word and the thoughts involved in writing/reading come and go. But don't they affect all parts of life when they're troublesome?
I have many funny stories about how I have made gaffs when working or at home, the written records I have ALMOST turned out etc..... And, if and when I can write em more easily, I may just share!!!
Here's to thinking through sludge, and it's many and varied little 'funnies'! Cos if we didn't laugh, we might just....... erm....... what was I saying?
I got in a real pickle as each time I'd saved a diary sheet on the computer, I'd instantly forget that I had, then I'd not remember if I'd printed it yet, and go look in my printer.
Then when I got back to the computer I'd not remember if I'd saved it, so I'd check, then....... did I already print this one? Back to the printer again to check!!!!!
It took me a very long time and lots of my already dwindling energy to complete just four sheets! Not great workload turnout!
I was so hooked up with trying to concentrate on my task, I forgot to think "Hey, this is hard, must be time to go home!"
The after effects are still with me, over the evening and last night my brain has gone to concrete again. Those of you who know me will have noticed I am back to writing just a couple of lines of text before I have to have a space, to help me 'get it'!
I won't even tell you how long I've been working on this post, or how many times I've read and re-read it as I've gone along.
My problems with the written word and the thoughts involved in writing/reading come and go. But don't they affect all parts of life when they're troublesome?
I have many funny stories about how I have made gaffs when working or at home, the written records I have ALMOST turned out etc..... And, if and when I can write em more easily, I may just share!!!
Here's to thinking through sludge, and it's many and varied little 'funnies'! Cos if we didn't laugh, we might just....... erm....... what was I saying?
Monday 28 June 2010
Teenage Manual wanted, any price considered!
Parenting with a chronic illness that keeps you out of the bustle of family life can be a challenge. How do you manage to stay 'in touch with' and 'current'? I feel that over the years things have been OK, my son's growing up has not been too much affected by my illness and the constraints of energy etc that it imposed on me. He was 6 when I became ill, and hasn't really know me any other way!
He is a resilient chap and, having had many challenges in his early life I think that Mum being tired and having yet another nap/quiet lie down just didn't figure too much. He taught me a lot about acceptance.
But Ooh the teenage years!
My son is almost 16yrs old now, and has so far been blessed with quite mild-mannered hormones. His attitude has been mostly easy going and fairly happy.
You seasoned 'Teen-handlers' may be thinking we've had it soft till now, but my son has special needs which have delayed the onset of 'teen-monster' but have brought us their own constant challenges in return!
Now I fear the tide is changing!! Issues around access to the internet, social networking sites, and YouTube have been flashpoints for a few months. There are some very scary things out there which have been accessed.
I feel like I'm letting my son down just lately, having my me-time has put extra barriers between Mum and Teen. It's hard work to balance the time/energy needed to stay a full part of the family life, and also take the time out that you need to safeguard health and energy. Working, recovery from that and everything life entails are a big enough drain, but to add the guilt of resting when you know you're needed elsewhere is a heartwrencher isn't it?
I'm sure there are better ways to deal with it all, I just haven't found it yet...but I'll keep trying!
If anyone has the manual that comes with their teenager, and doesn't need it anymore....I'll even pay postage!!!!
He is a resilient chap and, having had many challenges in his early life I think that Mum being tired and having yet another nap/quiet lie down just didn't figure too much. He taught me a lot about acceptance.
But Ooh the teenage years!
My son is almost 16yrs old now, and has so far been blessed with quite mild-mannered hormones. His attitude has been mostly easy going and fairly happy.
You seasoned 'Teen-handlers' may be thinking we've had it soft till now, but my son has special needs which have delayed the onset of 'teen-monster' but have brought us their own constant challenges in return!
Now I fear the tide is changing!! Issues around access to the internet, social networking sites, and YouTube have been flashpoints for a few months. There are some very scary things out there which have been accessed.
I feel like I'm letting my son down just lately, having my me-time has put extra barriers between Mum and Teen. It's hard work to balance the time/energy needed to stay a full part of the family life, and also take the time out that you need to safeguard health and energy. Working, recovery from that and everything life entails are a big enough drain, but to add the guilt of resting when you know you're needed elsewhere is a heartwrencher isn't it?
I'm sure there are better ways to deal with it all, I just haven't found it yet...but I'll keep trying!
If anyone has the manual that comes with their teenager, and doesn't need it anymore....I'll even pay postage!!!!
Friday 25 June 2010
"Smile please!"
Oh what a laugh we had yesterday!!! There are some 'shenanigans' going on at work, something planned for a colleague's retirement so I can't say anything incriminating. But it involved many giggles yesterday afternoon.
I was photographer, (I know it sounds intriguing, I'll share when I am able to!) and took an active part in setting things up. Not hugely physically demanding but I knew, as I was laughing along, that of all involved......I'd be the one doing time later!
Sometimes it's easy to get wrapped up in a fun situation, be enjoying it, but all the time knowing how things will most likely be in a few hours, or the next day. Most of my payback usually starts just hours after something 'too exciting', but it can be anything up to 24-36 hours later, so I don't think I'm quite done yet!
Last night I began with the arms and the throat, not to mention being suddenly so heavy that horizontal was the ONLY option! My skin crawled and my brain malfunctioned!
Predictably, this morning, I am here in bed, legs refusing to play the game as yet, arms sore and shaking, eyes zooming about refusing to stay focused on one thing. I think I probably deserve the raw throat from all the laughing, but I'm not sure the rest is fair...!
There seems to be little chance of showering/dressing just yet but my body might still come back 'online' so fingers crossed!
I'm not sure when, or even IF I will make it out of here today, but what photographs I have to show you when I can.....! I am supposed to be in work today and will, as always, do my best- but if I make it, please girls.........NOT SO MUCH HILARITY!
I was photographer, (I know it sounds intriguing, I'll share when I am able to!) and took an active part in setting things up. Not hugely physically demanding but I knew, as I was laughing along, that of all involved......I'd be the one doing time later!
Sometimes it's easy to get wrapped up in a fun situation, be enjoying it, but all the time knowing how things will most likely be in a few hours, or the next day. Most of my payback usually starts just hours after something 'too exciting', but it can be anything up to 24-36 hours later, so I don't think I'm quite done yet!
Last night I began with the arms and the throat, not to mention being suddenly so heavy that horizontal was the ONLY option! My skin crawled and my brain malfunctioned!
Predictably, this morning, I am here in bed, legs refusing to play the game as yet, arms sore and shaking, eyes zooming about refusing to stay focused on one thing. I think I probably deserve the raw throat from all the laughing, but I'm not sure the rest is fair...!
There seems to be little chance of showering/dressing just yet but my body might still come back 'online' so fingers crossed!
I'm not sure when, or even IF I will make it out of here today, but what photographs I have to show you when I can.....! I am supposed to be in work today and will, as always, do my best- but if I make it, please girls.........NOT SO MUCH HILARITY!
Saturday 19 June 2010
Brain...? What brain...?
AGH! I'm just about ready to sign up for a brain transplant! Just right now I'd cheerfully flick a switch to shut mine down completely.
For the last couple of days/nights, my brain has been in random thought and vision mode! I JUST CANNOT finish a thought, or even pursue it for more than a couple of seconds before it slips away from me. Pushed out by a randomly (or so it seems) created thought or mental picture.
Overnight I've been unable to sleep, but my head has been a constantly flickering blur of visions and thoughts that I have to admit I have no control over. (Pretty much like when Mr.H has control of the TV remote!) All efforts to concentrate on something, even a very familiar something, are as useless as a chocolate tea-pot!
I can't tell you how wearing this is, but I'm sure many of you don't need telling, and are probably nodding sagely as you read this! I'm at the stage where it hurts now-not an actual headache, but an uncomfortable 'stirred up' feeling that makes me want to retreat to a darkened room to wait it out. Life will not permit that today though!
Writing this has helped a little, calmed the maelstrom that rages inside. Another of the hidden delights of my condition I think..... "thanks!" It only happens occasionally but when it does it is devastating and sometimes lasts for more days than I'm happy to accept.
I'm afraid I have written this post, but, due to my dodgy concentration, can't manage to re-read it to see if it flows or there are any typos, so I'll trust spellchecker and you all!
Here's to calmer seas!
For the last couple of days/nights, my brain has been in random thought and vision mode! I JUST CANNOT finish a thought, or even pursue it for more than a couple of seconds before it slips away from me. Pushed out by a randomly (or so it seems) created thought or mental picture.
Overnight I've been unable to sleep, but my head has been a constantly flickering blur of visions and thoughts that I have to admit I have no control over. (Pretty much like when Mr.H has control of the TV remote!) All efforts to concentrate on something, even a very familiar something, are as useless as a chocolate tea-pot!
I can't tell you how wearing this is, but I'm sure many of you don't need telling, and are probably nodding sagely as you read this! I'm at the stage where it hurts now-not an actual headache, but an uncomfortable 'stirred up' feeling that makes me want to retreat to a darkened room to wait it out. Life will not permit that today though!
Writing this has helped a little, calmed the maelstrom that rages inside. Another of the hidden delights of my condition I think..... "thanks!" It only happens occasionally but when it does it is devastating and sometimes lasts for more days than I'm happy to accept.
I'm afraid I have written this post, but, due to my dodgy concentration, can't manage to re-read it to see if it flows or there are any typos, so I'll trust spellchecker and you all!
Here's to calmer seas!
Thursday 17 June 2010
NHS Niceness!
I went to see a Neurologist this week, not an experience I had any great feelings about, other than the usual "Here we go again" type of sinking feeling. Having to explain yourself (all over again!) and your association with a disease that seems to invite derision and criticism from that particular branch of the medical profession (but not JUST that branch!), is at best annoying, but at worst it can be belittling and upsetting.
I was referred there this time because of a tremor which has begun over the last few months. Only happens visibly when I'm particularly tired, and towards the end of the day, or sometimes in stressful situations too. I feel the muscle spasms involved a lot more than others can see though, and it has become one of the signs which tell me I've done enough!
I have had tests recently, and the neurology appointment was to discuss the results. We discussed M.E. and my history with it. I spoke about my neuro-symptoms- the sensitivities, the strange skin sensations, my balance and coordination problems etc. He listened intently, and when he replied he was understanding and empathetic............OMG!
He agreed that the spasms/tremor was most likely due to the M.E., but could not rule out another option and so would follow me up in a few months. I left feeling understood and respected. Something of a rarity in the M.E./CFS world I'm sure you'll agree.
What a situation, to be sick, often very sick, but to be disbelieved and criticised so much that just one polite and understanding Doc brings about a whole blog-post! It would be bad enough if it were just one person's experience, but sadly we all know that's not the case.
But, for this tired blogger, it was a boost to her self esteem to be valued and listened to. Thankyou Dr. D!
I was referred there this time because of a tremor which has begun over the last few months. Only happens visibly when I'm particularly tired, and towards the end of the day, or sometimes in stressful situations too. I feel the muscle spasms involved a lot more than others can see though, and it has become one of the signs which tell me I've done enough!
I have had tests recently, and the neurology appointment was to discuss the results. We discussed M.E. and my history with it. I spoke about my neuro-symptoms- the sensitivities, the strange skin sensations, my balance and coordination problems etc. He listened intently, and when he replied he was understanding and empathetic............OMG!
He agreed that the spasms/tremor was most likely due to the M.E., but could not rule out another option and so would follow me up in a few months. I left feeling understood and respected. Something of a rarity in the M.E./CFS world I'm sure you'll agree.
What a situation, to be sick, often very sick, but to be disbelieved and criticised so much that just one polite and understanding Doc brings about a whole blog-post! It would be bad enough if it were just one person's experience, but sadly we all know that's not the case.
But, for this tired blogger, it was a boost to her self esteem to be valued and listened to. Thankyou Dr. D!
Sunday 13 June 2010
Gorillas Don't Like Pasta Sauce.
A slow start today, mostly cos my body had a few issues of it's own first thing. There seemed to have been some kind of stampede whilst I slept, and everything in it had run over me, or, my arms to be exact!
My arms are always the first to go... weak and very sore. It's strange but they seem to be most painful in one small spot on the front of each bicep. Hubby (henceforth known as Mr.H as it's easier to type) thinks I'm bonkers when I complain that a cup of tea is too heavy, and feels like I'm lifting a bucket to my lips!
I'm blogging from my bed, my typing arm propped up on Mr.H's toy stuffed gorilla! He's a great shape, hugs your arm and is so comfy! Slightly bizarre, but comfy! I read a post by my friend Kerry, (Lemon-aid online) where she extolls the virtues of her many pillows and cushions, and I NEARLY confessed my love for the hairy, cuddly toy that I use to prop my sore/weak arms up with-but I didn't! (For those who are unsure, I am still talking about the gorilla! Mr.H is kinda cuddly, but there's not so much hair there these days!!!)
After spending a few hours in bed, I'm off to organise dinner. Mr.H is busy somewhere, so I hope my son can whip-up a quick pasta sauce and meatballs-I'm sure he can! I'd volunteer, but I'm sure it's the kind of job I need arms for, and I don't want to get pasta sauce on my gorilla!
My arms are always the first to go... weak and very sore. It's strange but they seem to be most painful in one small spot on the front of each bicep. Hubby (henceforth known as Mr.H as it's easier to type) thinks I'm bonkers when I complain that a cup of tea is too heavy, and feels like I'm lifting a bucket to my lips!
I'm blogging from my bed, my typing arm propped up on Mr.H's toy stuffed gorilla! He's a great shape, hugs your arm and is so comfy! Slightly bizarre, but comfy! I read a post by my friend Kerry, (Lemon-aid online) where she extolls the virtues of her many pillows and cushions, and I NEARLY confessed my love for the hairy, cuddly toy that I use to prop my sore/weak arms up with-but I didn't! (For those who are unsure, I am still talking about the gorilla! Mr.H is kinda cuddly, but there's not so much hair there these days!!!)
After spending a few hours in bed, I'm off to organise dinner. Mr.H is busy somewhere, so I hope my son can whip-up a quick pasta sauce and meatballs-I'm sure he can! I'd volunteer, but I'm sure it's the kind of job I need arms for, and I don't want to get pasta sauce on my gorilla!
Saturday 5 June 2010
42 !
Mmmm, I have a knotty problem that I'm wrestling with just now, it's hijacking my thoughts even though I'm trying to keep it out. It's nothing to do with ponies, drays, Sylvia, rag-rugs or any of the other 'stars' of my recent blogs. (In fact after how BADLY Merlin behaved yesterday, I'm more than happy not to talk about him!!!) No, this is about a very real issue for me, and one I've been trying to ignore for far too long.
My 'normal' existence is usually work Monday and Tuesday, Wednesday is largely spent in bed, sofa, hammock, feeling pretty sick and trying to rest up for Thursday and Friday at work again. The weekends are busy, things to be done, errands to do, we visit and work with the pony only at the weekends too. I manage a morning out of bed, or the afternoon, but not both. All this activity and still expecting to be rested for the next week's onslaught, and to do it all over again! ALL VERY EXHAUSTING!
Why am I trying to keep up this level of activity, of normality? I'm not sure. Is it because I'm not ready to admit that I'm not well enough to manage daily life like I used to, or maybe I'm scared that if I give something up I am giving in to this disease? I think it's maybe a complicated and scary mix of the two, plus many other little niggles mixed in for good measure.
What I have come to realise is that after just 7 consecutive days at home, not doing much more than eating, resting, an occasional spot of seed planting or garden watering, I feel rejuvenated! I have enough oomph to get me through the day without feeling like I'm about to fall over with exhaustion. I have even had the spare oomph to socialise a little too!
I can think much better, my neurological symptoms, mainly my horrific sound and light sensitivities have receded to a level that doesn't involve earplugs or leaving the room when the TV is on. Hey, this means I now have to put up with the awful TV that my son watches, I haven't an excuse-"Bring on the Wall"! (Sorry, it's the most apalling British program-'The Wall', google it... it's terrible!)
How to change things though? Now that's a question I've been working on for many a year! It's like 'DEEP THOUGHT'- the computer in Hitchiker's Guide to the Galaxy - all that time to ponder the ultimate question, the answer to life, the universe and everything turned out to be 42! A confusing solution that made no sense, and threw up countless other questions -hey! Sounds familiar!
I think what I'm saying is, I know working puts me on self-destruct mode health-wise, but can't really see what else I can usefully do! Just wish we had a bit more cash about the place, but I don't suppose I'm alone in that wish hey?!?!?
Elephants really are the worst of animals! Not those lovely lumbering grey monsters that move majestically over the plains of Africa. No, I'm talking about the sneaky, scary, debilitating ones who plague the lives of many sick people by, well, sitting on them!!!
My 'normal' existence is usually work Monday and Tuesday, Wednesday is largely spent in bed, sofa, hammock, feeling pretty sick and trying to rest up for Thursday and Friday at work again. The weekends are busy, things to be done, errands to do, we visit and work with the pony only at the weekends too. I manage a morning out of bed, or the afternoon, but not both. All this activity and still expecting to be rested for the next week's onslaught, and to do it all over again! ALL VERY EXHAUSTING!
Why am I trying to keep up this level of activity, of normality? I'm not sure. Is it because I'm not ready to admit that I'm not well enough to manage daily life like I used to, or maybe I'm scared that if I give something up I am giving in to this disease? I think it's maybe a complicated and scary mix of the two, plus many other little niggles mixed in for good measure.
What I have come to realise is that after just 7 consecutive days at home, not doing much more than eating, resting, an occasional spot of seed planting or garden watering, I feel rejuvenated! I have enough oomph to get me through the day without feeling like I'm about to fall over with exhaustion. I have even had the spare oomph to socialise a little too!
I can think much better, my neurological symptoms, mainly my horrific sound and light sensitivities have receded to a level that doesn't involve earplugs or leaving the room when the TV is on. Hey, this means I now have to put up with the awful TV that my son watches, I haven't an excuse-"Bring on the Wall"! (Sorry, it's the most apalling British program-'The Wall', google it... it's terrible!)
How to change things though? Now that's a question I've been working on for many a year! It's like 'DEEP THOUGHT'- the computer in Hitchiker's Guide to the Galaxy - all that time to ponder the ultimate question, the answer to life, the universe and everything turned out to be 42! A confusing solution that made no sense, and threw up countless other questions -hey! Sounds familiar!
I think what I'm saying is, I know working puts me on self-destruct mode health-wise, but can't really see what else I can usefully do! Just wish we had a bit more cash about the place, but I don't suppose I'm alone in that wish hey?!?!?
Elephants really are the worst of animals! Not those lovely lumbering grey monsters that move majestically over the plains of Africa. No, I'm talking about the sneaky, scary, debilitating ones who plague the lives of many sick people by, well, sitting on them!!!
Wednesday 2 June 2010
Just a little step towards a dream
Another small milestone has been reached in my attempts to travel with my pony, dray, ME/CFS and my elephants. We now have Sylvia's dray and have tried Merlin in it, just to see if he fitted and would be happy to pull it.
He is used to pulling a fairly lightweight two wheeled carriage with hubby and I on it, but now we are asking for something a little more from his little spotty legs! The dray is built completely out of wood, with large heavy wheels, and huge steel springs-Merlin could quite rightly have said 'NO!', but to his credit, he was happily pulling it with three adults and an excited terrier on board, after just 5 minutes!
Anyone remember Steptoe and Son? (1960's comedy about Rag and Bone men in London) My hubby has downloaded the theme tune, and we intend to play it when we go out (When nobody is about I might add)! Maybe I'll have to invest in flat caps and knotted scarves for us both!!!
We need to sort some little bits out, then we can try longer journeys with him and the dray, just a few miles at first to build his strength, then maybe more-we'll see and take it very much step by step.
I know where we can stow the camping gear, clothes, food, water etc..... but I'm not sure how my elephant will fit in with travelling and camping by horsedrawn vehicle. It could either be ok, or disasterous and I don't think I'll know till I try. I've never been one to shy away from an experience just because I have ME/CFS though.
It's completely unknown territory for me, being sick and doing this crazy thing. I will just have to be sensible, plan for resting and recouperating, and listen when my body crys "ENOUGH!"
But one thing's for sure, I'll keep on blogging about it, if nothing else it's a great way to record things for my own treacle-slushy brain, I'd really hate to forget!!
He is used to pulling a fairly lightweight two wheeled carriage with hubby and I on it, but now we are asking for something a little more from his little spotty legs! The dray is built completely out of wood, with large heavy wheels, and huge steel springs-Merlin could quite rightly have said 'NO!', but to his credit, he was happily pulling it with three adults and an excited terrier on board, after just 5 minutes!
Anyone remember Steptoe and Son? (1960's comedy about Rag and Bone men in London) My hubby has downloaded the theme tune, and we intend to play it when we go out (When nobody is about I might add)! Maybe I'll have to invest in flat caps and knotted scarves for us both!!!
We need to sort some little bits out, then we can try longer journeys with him and the dray, just a few miles at first to build his strength, then maybe more-we'll see and take it very much step by step.
I know where we can stow the camping gear, clothes, food, water etc..... but I'm not sure how my elephant will fit in with travelling and camping by horsedrawn vehicle. It could either be ok, or disasterous and I don't think I'll know till I try. I've never been one to shy away from an experience just because I have ME/CFS though.
It's completely unknown territory for me, being sick and doing this crazy thing. I will just have to be sensible, plan for resting and recouperating, and listen when my body crys "ENOUGH!"
But one thing's for sure, I'll keep on blogging about it, if nothing else it's a great way to record things for my own treacle-slushy brain, I'd really hate to forget!!
Monday 31 May 2010
Making our mark
Many of us practice some art, skill or craft. We need to keep our fingers busy, to relieve our minds and create!
I am not very talented, I have no main craft that I favour, but the ease of picking up and putting down a craft at will, means that my rag-rugging is usually the one that gets the most attention.
I start with a pile of 'fleecy' jumpers (I'm not sure what you'd call them in USA), which I deconstruct then cut into strips about 1cm wide and as long as possible.
Then, using hessian sackcloth for my backing I work the strips through it, leaving small loops on the 'good-side' for the pile of the rug. It really is simple pimple!
When I took this shot the rug was unfinished, I hadn't even trimmed or taped the edges! It was a very therapeutic rug to do as after working the border I let my head and hand run free with the bulk of the pattern.
I love being able to just relax my brain, no pattern or colour chart to follow, sheer relaxation and sense of achievement. Marvellous!
Not to everyones taste I'm certain, but it's free, easy, cosy, re-uses resources that might have ended up in landfill, and most importantly.......... covers a bit of floor in the yurt!
I also dabble in silversmithing (although I'm a bit 'rusty'!!!), beading, and making drinking glasses and vases from wine/beer bottles. Bit of an odd mix I know, but that's me all over!!!
I love to make practical stuff, stuff I can use or pass onto friends to be used.
Tell me what keeps your fingers and brain busy, I know lots of you are incredibly talented and creative....
(If you'd like to share, you could email me a photo of a project and I'll post it for you-I don't think the comments system here allows you to do it yourself.)
Thank you for being so supportive and patient with me and my last post, my head seems to be less 'bonkers' now, and my sensitivities are less, well, sensitive! All good, AND I've got the week at home!
Saturday 29 May 2010
And, the credit goes to........
Just a post to keep in touch with you all, I am afraid that neurologically speaking I'm mush just now, so there will be no profound insights or adventurous 'people-meeting' from me for a little while.
I am so pleased to say 'Hi' to Kerry again, she has been quite unwell but is back in 'cyber-space' and blogging over at Lemonaide-online (link is on my blogroll). Her posts are always thoughtful and poignant...... if it's thoughtful and poignant you need, Kerry's your woman!
She has written her latest post, which I'm afraid to say I can't read at the moment, and I so want to, as the comments about it speak very highly! I'll have to work on it. But, I did look at the pictures, nice!
I feel like I shouldn't be posting this, that I should be trying harder to get some sensible stuff out of my 'noggin', but I think it's too much energy, for too little return today!!! I just got a post out of Kerry's, thanks chuck! (Call it advertising!!!)
It's raining outside, my son is doing my housework, so i'm just going to sit here and take a rest, then perhaps some rag-rugging may be on the cards...... very mindless - good!
I am so pleased to say 'Hi' to Kerry again, she has been quite unwell but is back in 'cyber-space' and blogging over at Lemonaide-online (link is on my blogroll). Her posts are always thoughtful and poignant...... if it's thoughtful and poignant you need, Kerry's your woman!
She has written her latest post, which I'm afraid to say I can't read at the moment, and I so want to, as the comments about it speak very highly! I'll have to work on it. But, I did look at the pictures, nice!
I feel like I shouldn't be posting this, that I should be trying harder to get some sensible stuff out of my 'noggin', but I think it's too much energy, for too little return today!!! I just got a post out of Kerry's, thanks chuck! (Call it advertising!!!)
It's raining outside, my son is doing my housework, so i'm just going to sit here and take a rest, then perhaps some rag-rugging may be on the cards...... very mindless - good!
Friday 21 May 2010
PJ's and a Hammock!
I joked in a comment about my last post, that I couldn't keep up this excitement, well I was right! Instead of wonderful planned adventures in horsedrawn vehicles, I'm reduced to making it outside to the hammock, still in my PJ's! Not quite what I had in mind, but hey...it's far enough today!
This week, I have had to up my working hours, and that combined with the worst sound/light sensitivity for as long as I can remember (and, let's face it, that's not very long!) has reduced me to rubble.
It's a bit of a blow really, I am a stubborn old bird who REALLY doesn't like to be reminded in such a rude fashion that I'm disabled and debilitated sometimes. Always happens, things hit me, my elephant has a bit of a party, and I get grumpy at having to accept all over again, that I'm a ME/CFS groupie!
I said in my last post that I was starting to feel more like a healthy person with limitations, well that's all well and good, but when those limitations make you feel the way I do at the moment, you can't fail to feel un-healthy! I know it's going to subside, and I'll get some of my life back for a bit, and I'm not in the least down in the dumps about it, I'm OK, just smarting that today it's 1-nil to the elephants!
Laying in the hammock, sunglasses on and blanket over me-I'm lucky to be able to do this, so I'm going to make the most of the fresh air and gentle breeze. There's a little family of birds in a nearby tree, and they've got used to me being there, so I watch them coming and going and learning to fly.
It's so nice out here, my hammock is next to my hens making little 'swooshy' noises as they scratch about in the straw. The dog even came to join me, laying herself down in the long grass under the trees, insects bugging her every now and then. It's sunny and warm, there's only one thing for it............. sleep!
I'm aware that this post isn't dynamic and get-up-and-go. Heck it'd just get boring if it were the same all the time, much like life!
Saturday 15 May 2010
More Precious Moments.....!
Well, I've promised an update to my last post all week. It's taken this long to sort my head and it's antics out - I'm having a few more neurological symptoms than I'm used to. Lots of fun with hearing issues, shock-like reactions to touch and especially unexpected sounds etc etc...you know the drill. Enough of that, it's just not too exciting to write about, I need to work out what's going on before I can share much.
Anyhooo, we spent a wonderful evening with Sylvia on Wednesday-sitting by her fire, eating chocolate biscuits and drinking tea. I gave her a book, and she gave me a couple of things in return...which are the best gifts I could imagine.
Firstly, she has offered us her 'dray' to borrow every summer. This is a large-ish, flat, wooden, 4-wheeled farm cart for Merlin to pull. We can put a top on it, and use it to go for weekends and holidays away, all summer. She will have it back in the winter, when she's at home, cos she uses it then.
I am thrilled! It is something I've ALWAYS wanted to do, travel with horsedrawn vehicle, and now here's my chance. It is a pretty M.E. friendly thing to do too, if I have a companion with me I can lie down, resting or sleeping any time I need to, leaving the driving to someone else, perfect!
I aim to get a peek at it, then get it delivered to where Merlin lives. We'll try him with it, (he may take a few trys to get used to it) then we'll get it home to put a top on and make it habitable. Thank heavens for very handy DIY 'savvy' fathers-in-law I say! If all goes to plan it may be on the road in about 6weeks! I'll keep ya posted!!!
The second gift she gave me, is the feeling that I am moving on, growing and experiencing much more than I thought possible. Her attitude to life is so 'get up and go' and cheerful that it is infectious. I can't help but smile and feel positively energised when I am, or have been around her.
I have begun to think much more like a healthy person, with limitations, again...rather than a permanently sick one, struggling to get through each day (which is mentally where I've been for many more years than I care to think about).
I, and my health have not changed one iota, but if I can maintain the more positive way of thinking it has surely got to make my journey with ME/CFS and the inevitable elephants more bearable. These last couple of weeks have been quite good, despite my worsened symptoms and a few emotional wobbles...I'd have let it all bother me much more before.
This renewed feeling of optimism, and of course, the Dray, are the best gifts I could wish for at this time in my life... (Well, a new bathroom and a semi-naked household slave wouldn't go amiss either, but Sylvia wasn't forthcoming on either of those!!!)
Anyhooo, we spent a wonderful evening with Sylvia on Wednesday-sitting by her fire, eating chocolate biscuits and drinking tea. I gave her a book, and she gave me a couple of things in return...which are the best gifts I could imagine.
Firstly, she has offered us her 'dray' to borrow every summer. This is a large-ish, flat, wooden, 4-wheeled farm cart for Merlin to pull. We can put a top on it, and use it to go for weekends and holidays away, all summer. She will have it back in the winter, when she's at home, cos she uses it then.
I am thrilled! It is something I've ALWAYS wanted to do, travel with horsedrawn vehicle, and now here's my chance. It is a pretty M.E. friendly thing to do too, if I have a companion with me I can lie down, resting or sleeping any time I need to, leaving the driving to someone else, perfect!
I aim to get a peek at it, then get it delivered to where Merlin lives. We'll try him with it, (he may take a few trys to get used to it) then we'll get it home to put a top on and make it habitable. Thank heavens for very handy DIY 'savvy' fathers-in-law I say! If all goes to plan it may be on the road in about 6weeks! I'll keep ya posted!!!
The second gift she gave me, is the feeling that I am moving on, growing and experiencing much more than I thought possible. Her attitude to life is so 'get up and go' and cheerful that it is infectious. I can't help but smile and feel positively energised when I am, or have been around her.
I have begun to think much more like a healthy person, with limitations, again...rather than a permanently sick one, struggling to get through each day (which is mentally where I've been for many more years than I care to think about).
I, and my health have not changed one iota, but if I can maintain the more positive way of thinking it has surely got to make my journey with ME/CFS and the inevitable elephants more bearable. These last couple of weeks have been quite good, despite my worsened symptoms and a few emotional wobbles...I'd have let it all bother me much more before.
This renewed feeling of optimism, and of course, the Dray, are the best gifts I could wish for at this time in my life... (Well, a new bathroom and a semi-naked household slave wouldn't go amiss either, but Sylvia wasn't forthcoming on either of those!!!)
Monday 10 May 2010
Nothing so precious as........
I am so lucky, I have met, and am meeting some pretty inspirational and special people just lately. I get so much joy from getting to know people, their stories and their friendship. Simple things please simple minds i suppose!!!
Honestly, there is no treasure, no luxury, no art, jewellery, product or gift that can come even a close second to the pleasure I get from simply sharing time with people, and I know some pretty wonderful ones!
There are the enduring friends I have, (let me take you back to my last post) they are special, each and every one. There are the friends I can be M.E./CFS comfy with and the ones I still try to hide some of it from.
There are the new friends I have, from the local support group. There is a large community of 'cyber' friends out there, who all appear at my 'virtual front door', the laptop screen! There are the friends I have through pony and carriage driving and many more from many different walks of life. All superb and wonderful people who I am privileged to know.
I want to tell you about one I have begun to get to know just recently, a special lady in her own category - Sylvia!
Sylvia is a lovely lady who is intelligent, quick, funny, honest and sincere. She is a traveller, still using a horse drawn gypsy caravan and her horse 'Diamond' to get around Britain. She travels for most of the year, stopping off with friends along the way.
I met her last autumn, and then saw her again a couple of weeks ago-I'm having such a blast getting to know her before she moves on again. We have spent a couple of evenings sitting by the fire, drinking tea and just talking about well, I dunno, but it was heavenly.
She has such a different lifestyle, and I admit it, I'm more than ferociously jealous! I am a simple girl at heart, a forager who loves to live simply. But I have to allow my health to take the lead on my lifestyle rather more than I'm happy with but hey! I am still able to lead a great life, just slower and much more cautiously than before, so you won't hear me complaining! (I'll just do it quietly!!!)
On Saturday Sylvia came out with me and my pony and carriage (see my photo on the post 'Myself to Blame') and fell in love with him, he was very good that day! I had the best time, she is such great fun! We talked and talked about stuff that is close to my heart, and hers - horses! Then, back to our yurt for toast and fresh scrambled eggs, laid by my 'girls', she loved it!
I could go on all day, but, I would never have begun driving horses and ponies if it weren't for ME/CFS, so there's a fair chance I would never have met Sylvia, or many of the intensely wonderful people I know now. So for this alone I need to give a huge hug to my 'elephant' when I can get my arms round him (he is a bit big at the moment, and my arms ache!).
I hope that all of us have as pleasant and relaxed a time as possible in this Awareness Week. I'm not sure todays post will do much for awareness, but I hope, if you're new here, you check out some of the previous ones!
Before I go, a warm welcome Jessica, thanks for following over from Facebook! Great to see you!
Take care all,
Zarla
xxx
Wednesday 5 May 2010
"I understand...."
My elephant has lost a few pounds this morning I think, still sitting on my shoulders, but lighter than it has been for a while. The first thing to recover, when I notice I feel better, is my horrible, down in the dumps moodiness.
"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.
I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.
At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.
They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.
She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.
She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!
And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....
"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."
Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.
I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!
But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!
"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.
I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.
At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.
They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.
She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.
She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!
And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....
"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."
Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.
I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!
But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!
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