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!
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