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!
Friday, 17 September 2010
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!
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