I cant think of anything better to call this post than the month I'm writing it in. I've been very absent lately, not just from this blog, but from a lot of things.
I've been on a backward spiral, and still trying to make headway again. I can pinpoint the exact moment that was my undoing. I dared to think, believe and announce that I felt I would very soon be well enough to contemplate work again, albeit on a part-time basis! Damn, why did I have to say it out loud....to people?! If I had kept it all inside it might have been true!
Of course I joke! The real undoing was either overdoing things one weekend due to a family celebration, or due to something out of my control. Either way, I'm trying to get back to the point I was at before but not doing a great job.
Due to a few misplaced comments by other people, and my own desire to shake off my sofa, I've done quite a bit this weekend. I went out for a cup of tea with a friend (driven by my other half as I didnt feel able to drive) and also went to the cinema with my other half, the first time in ages. I was glad I did but, yes you guessed it I am paying for it again.
I'm finding I am getting pain in my legs a lot lately, mainly in my thighs. I hate taking painkillers but had to today. This is a new thing for me, as I am lucky enough not to generally suffer pain with my ME. I hope its not a new pattern of symptoms emerging.
August, by comparison, must be better than July. Good things happen in August don't they?!
That's all for now.
Oh bugger, I've forgotten to talk about The State of Me that I LOVED reading, will talk about that next time, I hope.
Sunday 17 July 2011
Friday 24 June 2011
Time For a Picture
My posts are quite wordy. My blog looks dull. Lets have a random pic!
Here's one from my garden. Its quite cheery!
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Here's one from my garden. Its quite cheery!
A New Chaos Theory???
Apologies for my absence recently. Things have been up and down and round the houses, and just a bit all over the shop.
M.E. being a fluctuating illness and all that, means that just when you think you know where you are (on the up), the rug is pulled from under your feet (down you go!). When you think, "when will things ever get better?" and all you can see is days in bed or on the sofa ahead of you, all of a sudden you feel weirdly alright and able to potter about doing things. How come I can pace, pace, pace, be fine, fine, fine, then woah have a good day, then soon after feel so ill and in pain?
What's that all about?
I know Pacing theory would say "oh well that was just another boom and bust" and I realise that if you raise your game even just a little bit or that you do one thing out of the ordinary, that you should steel yourself for some pretty solid Post-Exertional Malaise - and expect it to stick around for, oh say, 2 weeks.
Pacing is dull, dull, dull. Its nice to have steady improvement, and sometimes you look back over the long stretch and see how far you have come, compared to where you were. For instance, not so long ago I was able to do a bit of container gardening - nothing heavy, just sowing seeds in little pots, or transplanting seedlings, light weeding, or if my arms and legs are not too heavy, a bit of watering. No digging or lifting or anything. Compared to my bed-and-sofa-and-bed days this is pretty remarkable.
But then a family wedding. Even with good pacing through the day, sitting all the while, taking time out for quiet time, a 2 hour sleep after dinner, etc I end up with severe PEM 3-4 days later. Well, that will be because I managed to dance to a few songs (not good pacing, but who cares).
The following two weeks feature exhaustion prominently. Then bam. Severe pain in my legs. What's this? I don't normally get "pain-pain" (severe aching and stiffness yes, but not severe pain). As I dont have medication for pain, all I could do was keep taking regular doses of paracetamol and asking my husband to rub my legs for me and keep them raised.
This led me to cancelling a special family event I had been looking forward to which would involve me travelling far and being around a lot of other people. I was so torn about this decision but its probably the right one. Lots of tears and bad thoughts followed. Pretty exhausting.
CHAOS Theory
This leads me to a new chaos theory. When things are uncertain and ever-changing, I think what matters most is how you deal with it. Yes I felt sorry for myself yesterday. Yes I feel foolish for dancing at the wedding. Yes I feel foolish for saying I'd be talking about going back to work around the end of this month. Yes I feel foolish for thinking I was on a one-way ticket to imminent full health! Yes I was foolish for "bragging" this to people.
But O.K. thats all done now. Its gone, and I can't say what tomorrow will be like or tonight or any time soon. I'm not going to dwell on the past. Because I think what matters most is adaptability. I'm still working on it. I'm still going through denial and acceptance cycles, boom and bust cycles, predicting and failing cycles, but who cares? Really the key point is that I keep going, cry and laugh now and then, but keep going along this wobbly path, wherever it is going....
Whatever it is going to throw at me, I can handle it. Whatever happens, its alright.
I want to thank my amazing friends and family for looking after me and for the hugs xxxx
M.E. being a fluctuating illness and all that, means that just when you think you know where you are (on the up), the rug is pulled from under your feet (down you go!). When you think, "when will things ever get better?" and all you can see is days in bed or on the sofa ahead of you, all of a sudden you feel weirdly alright and able to potter about doing things. How come I can pace, pace, pace, be fine, fine, fine, then woah have a good day, then soon after feel so ill and in pain?
What's that all about?
I know Pacing theory would say "oh well that was just another boom and bust" and I realise that if you raise your game even just a little bit or that you do one thing out of the ordinary, that you should steel yourself for some pretty solid Post-Exertional Malaise - and expect it to stick around for, oh say, 2 weeks.
Pacing is dull, dull, dull. Its nice to have steady improvement, and sometimes you look back over the long stretch and see how far you have come, compared to where you were. For instance, not so long ago I was able to do a bit of container gardening - nothing heavy, just sowing seeds in little pots, or transplanting seedlings, light weeding, or if my arms and legs are not too heavy, a bit of watering. No digging or lifting or anything. Compared to my bed-and-sofa-and-bed days this is pretty remarkable.
But then a family wedding. Even with good pacing through the day, sitting all the while, taking time out for quiet time, a 2 hour sleep after dinner, etc I end up with severe PEM 3-4 days later. Well, that will be because I managed to dance to a few songs (not good pacing, but who cares).
The following two weeks feature exhaustion prominently. Then bam. Severe pain in my legs. What's this? I don't normally get "pain-pain" (severe aching and stiffness yes, but not severe pain). As I dont have medication for pain, all I could do was keep taking regular doses of paracetamol and asking my husband to rub my legs for me and keep them raised.
This led me to cancelling a special family event I had been looking forward to which would involve me travelling far and being around a lot of other people. I was so torn about this decision but its probably the right one. Lots of tears and bad thoughts followed. Pretty exhausting.
CHAOS Theory
This leads me to a new chaos theory. When things are uncertain and ever-changing, I think what matters most is how you deal with it. Yes I felt sorry for myself yesterday. Yes I feel foolish for dancing at the wedding. Yes I feel foolish for saying I'd be talking about going back to work around the end of this month. Yes I feel foolish for thinking I was on a one-way ticket to imminent full health! Yes I was foolish for "bragging" this to people.
But O.K. thats all done now. Its gone, and I can't say what tomorrow will be like or tonight or any time soon. I'm not going to dwell on the past. Because I think what matters most is adaptability. I'm still working on it. I'm still going through denial and acceptance cycles, boom and bust cycles, predicting and failing cycles, but who cares? Really the key point is that I keep going, cry and laugh now and then, but keep going along this wobbly path, wherever it is going....
Whatever it is going to throw at me, I can handle it. Whatever happens, its alright.
I want to thank my amazing friends and family for looking after me and for the hugs xxxx
Sunday 1 May 2011
Blogging Against Disablism Day 2011
I have just discovered that today is Blogging Against Disablism Day 2011. See here for more information about the Day: http://tinyurl.com/badd2011.
There are many aspects of disablism which I could talk about, not least that I suffer from a chronic illness and constantly question in my head whether I consider myself to have a disability or not, but perhaps interestingly, whether the rest of the world considers me to have a disability.
The problem with M.E. is that its cause is unknown, there are a few different definitions, symptoms vary widely, the condition fluctuates and there is no one agreed treatment. Services and clinics for M.E. sufferers vary around the country, with some areas having no clinics, and a variety medical specialisms taking the lead in other areas, whether its psychiatry in one area of the country, it could well be endocrinology in another. Add to this that the government is making it so difficult for people to qualify for and retain welfare benefits - means that many people feel their disability is not recognised.
I had a GP tell me a few weeks ago that I needed to put my illness in a box and forget about it. I just need to push against it, and get on with living life. That I need to stop depending on my husband and be a better wife to him, and that if I ever wanted to have kids, I would just need to get over this. Needless to say I was fuming at this archaic attitude. Luckily for me I have a reasonably good understanding of my condition and the generally accepted medical view is that, in short, she is wrong. Very, very wrong.
Pushing against my illness is the ONE thing I should not be doing. In fact, some might say its what has got me in this position. Not that I would listen to that view either. The notion that I can "control" my illness makes me very angry. No-one would choose to experience this illness. The effects of my illness are far-reaching and personally devastating.
I've worked hard to complete a degree in my own time, whilst also working full-time and earning my own income. I am now a qualified social worker and my main motivation for getting in to this line of work, was to help other people - support them, listen to them, give practical help, whatever it meant for that person to live more independently and inclusively.
Its strange, then, to find myself in such a lonely, sometimes helpless position. No-one is going to give me a handout, or come round and give me practical help. My illness or disability is not at a level where I believe I would qualify for any help. Equally I feel I am a burden to my employer, colleagues and clients, as I am signed off on long-term sick leave, and therefore feel like a burden to society (a term I hate). There are few reasonable adjustments that could be made in my line of work, or the environment(s) I work in. At any rate work could not take account of the fluctuating nature of my illness, the changing physiological, neurological, and mental effects of it. I do not know in myself, where or when this illness will stabilise. I won't even get started on the subject of recovery - since if I recover, how long might that be, and at what level?
In summary, I would say I am caught between a rock and a hard place. Normally I would fight my way out of a corner, come up with a plan to build myself back up, be proactive in getting on with things and pushing forward, but I simply can no longer do this with my "boom and bust" illness, even if I was well enough to.
I havent even begun to discuss more personal issues like the stigma I feel all around me (although that is covered in my post below about the sunny weather), and as a 30-something married woman what choices I might make about starting a family for instance.
Finally I don't write this for sympathy. I don't want anyone's pity; I just want to be understood and listened to. Because its only if you can really understand, that you can offer meaningful support. Seeing someone who looks well, and drawing your own assumptions, can be really damaging. And a plea to the government and benefits people: what is happening is wrong. Genuinely ill and disabled people have enough hard decisions and labels made about them, without you adding to it.
There are many aspects of disablism which I could talk about, not least that I suffer from a chronic illness and constantly question in my head whether I consider myself to have a disability or not, but perhaps interestingly, whether the rest of the world considers me to have a disability.
The problem with M.E. is that its cause is unknown, there are a few different definitions, symptoms vary widely, the condition fluctuates and there is no one agreed treatment. Services and clinics for M.E. sufferers vary around the country, with some areas having no clinics, and a variety medical specialisms taking the lead in other areas, whether its psychiatry in one area of the country, it could well be endocrinology in another. Add to this that the government is making it so difficult for people to qualify for and retain welfare benefits - means that many people feel their disability is not recognised.
I had a GP tell me a few weeks ago that I needed to put my illness in a box and forget about it. I just need to push against it, and get on with living life. That I need to stop depending on my husband and be a better wife to him, and that if I ever wanted to have kids, I would just need to get over this. Needless to say I was fuming at this archaic attitude. Luckily for me I have a reasonably good understanding of my condition and the generally accepted medical view is that, in short, she is wrong. Very, very wrong.
Pushing against my illness is the ONE thing I should not be doing. In fact, some might say its what has got me in this position. Not that I would listen to that view either. The notion that I can "control" my illness makes me very angry. No-one would choose to experience this illness. The effects of my illness are far-reaching and personally devastating.
I've worked hard to complete a degree in my own time, whilst also working full-time and earning my own income. I am now a qualified social worker and my main motivation for getting in to this line of work, was to help other people - support them, listen to them, give practical help, whatever it meant for that person to live more independently and inclusively.
Its strange, then, to find myself in such a lonely, sometimes helpless position. No-one is going to give me a handout, or come round and give me practical help. My illness or disability is not at a level where I believe I would qualify for any help. Equally I feel I am a burden to my employer, colleagues and clients, as I am signed off on long-term sick leave, and therefore feel like a burden to society (a term I hate). There are few reasonable adjustments that could be made in my line of work, or the environment(s) I work in. At any rate work could not take account of the fluctuating nature of my illness, the changing physiological, neurological, and mental effects of it. I do not know in myself, where or when this illness will stabilise. I won't even get started on the subject of recovery - since if I recover, how long might that be, and at what level?
In summary, I would say I am caught between a rock and a hard place. Normally I would fight my way out of a corner, come up with a plan to build myself back up, be proactive in getting on with things and pushing forward, but I simply can no longer do this with my "boom and bust" illness, even if I was well enough to.
I havent even begun to discuss more personal issues like the stigma I feel all around me (although that is covered in my post below about the sunny weather), and as a 30-something married woman what choices I might make about starting a family for instance.
Finally I don't write this for sympathy. I don't want anyone's pity; I just want to be understood and listened to. Because its only if you can really understand, that you can offer meaningful support. Seeing someone who looks well, and drawing your own assumptions, can be really damaging. And a plea to the government and benefits people: what is happening is wrong. Genuinely ill and disabled people have enough hard decisions and labels made about them, without you adding to it.
"The Sunny Weather Makes You Feel So Much Better, Doesnt It?"
So said my neighbour to me the other day, after I hadn't emerged from the house for over a week, and with great emphasis on the better. Knowing it was a rhetorical question, I just smiled and got in the car. She obviously knows better than I do.
Despite my annoyance at the inferences of her statement, tt's actually something I have pondered a lot about. I sometimes think to myself that yes, it does make me feel better. Sometimes I wonder if I suffer from S.A.D. and I do feel a sense of "lightening and brightening" when the sunnier weather comes, like we are finally free from the bleakness and harshness of a long, cold winter. I also have a lack of Vitamin D, the sunshine vitamin, so the arrival of sunnier days means I can top this up naturally. Perhaps most significantly, the arrival of spring and summer, means I don't spend all day every day feeling cold and trying to cover up the slightest gap in my clothing, or wondering how I would get outside in the icy wind and slippery roads.
Yes, the sun's arrival is cause for celebration. It makes me happy to see the world starting to bloom again, birds cheeping and new beginnings all around. I can stick shorts and a t-shirt on and I can sow a few seeds in pots, and spend time in the garden with my pets. If I so wanted to, I can sit in the fresh air with a magazine and a glass of elderflower, or I can just simply put a hat and shades on and close my eyes, while listening to the gentle breeze and gently buzzing insects. (Though usually round my way this is quickly replaced with the sound of shrieking kids, roaring boy-racer engines and electric drills).
But there are many downsides. Not least the fact that, yes my neighbour saw me leave the house in my linen trousers and floaty top, carrying food to take with me to the family gathering I was about to attend, but this was the first time I had left the house in over a week. And what we both didnt know, was that following the "exertion" of attending this family gathering I would go backwards and spend a week only going from bed to sofa to bed again, feeling rotten and in pain. I can look out the window and see the sun shining, a beautiful blue sky, kids laughing in the street, people lighting barbecues, and my seedlings desperately needing potting on. I think about all the lovely veggie summer meals I might cook if only I were well enough to.
And this is the heartache of M.E. My family saw the old "me" - talking, and laughing, and enjoying nice fresh food, and playing with the little ones. They don't see the me that is in bed much of the time, that doesn't do anything, that feels terribly ill and weak, that feels guilty, despairing, frustrated and sad. No, they don't see that.
So yes the sunny weather makes me feel better, but there is danger in feeling better too, and when the sunny weather makes you feel worse, then the world seems a very cruel and unfair place.
Despite my annoyance at the inferences of her statement, tt's actually something I have pondered a lot about. I sometimes think to myself that yes, it does make me feel better. Sometimes I wonder if I suffer from S.A.D. and I do feel a sense of "lightening and brightening" when the sunnier weather comes, like we are finally free from the bleakness and harshness of a long, cold winter. I also have a lack of Vitamin D, the sunshine vitamin, so the arrival of sunnier days means I can top this up naturally. Perhaps most significantly, the arrival of spring and summer, means I don't spend all day every day feeling cold and trying to cover up the slightest gap in my clothing, or wondering how I would get outside in the icy wind and slippery roads.
Yes, the sun's arrival is cause for celebration. It makes me happy to see the world starting to bloom again, birds cheeping and new beginnings all around. I can stick shorts and a t-shirt on and I can sow a few seeds in pots, and spend time in the garden with my pets. If I so wanted to, I can sit in the fresh air with a magazine and a glass of elderflower, or I can just simply put a hat and shades on and close my eyes, while listening to the gentle breeze and gently buzzing insects. (Though usually round my way this is quickly replaced with the sound of shrieking kids, roaring boy-racer engines and electric drills).
But there are many downsides. Not least the fact that, yes my neighbour saw me leave the house in my linen trousers and floaty top, carrying food to take with me to the family gathering I was about to attend, but this was the first time I had left the house in over a week. And what we both didnt know, was that following the "exertion" of attending this family gathering I would go backwards and spend a week only going from bed to sofa to bed again, feeling rotten and in pain. I can look out the window and see the sun shining, a beautiful blue sky, kids laughing in the street, people lighting barbecues, and my seedlings desperately needing potting on. I think about all the lovely veggie summer meals I might cook if only I were well enough to.
And this is the heartache of M.E. My family saw the old "me" - talking, and laughing, and enjoying nice fresh food, and playing with the little ones. They don't see the me that is in bed much of the time, that doesn't do anything, that feels terribly ill and weak, that feels guilty, despairing, frustrated and sad. No, they don't see that.
So yes the sunny weather makes me feel better, but there is danger in feeling better too, and when the sunny weather makes you feel worse, then the world seems a very cruel and unfair place.
Saturday 16 April 2011
Kay Gilderdale Interviewed on This Morning
Kay Gilderdale, mother of Lyn Gilderdale who had ME, speaks on This Morning on 15 April 2011. Here is the interview:
http://thismorning.itv.com/thismorning/life/i-helped-my-daughter-die
There are a lot of comments from viewers and sufferers of ME underneath the video.
http://thismorning.itv.com/thismorning/life/i-helped-my-daughter-die
There are a lot of comments from viewers and sufferers of ME underneath the video.
Monday 11 April 2011
Decisions, decisions...
Although I believe I have had ME/CFS for around 3-4 years, it was initially diagnosed as depression only (I did have depression but I believe ME/CFS was there the whole time too). It was only last year that I was officially diagnosed with ME/CFS. So accepting this illness, and understanding what the full implications of it may be, has not been easy. In fact, its very very difficult.
Not only is there the stigma associated with chronic illness, but there is a whole range of emotions that go with it. This aspect of the illness is often poorly appreciated and understood. I regularly experience emotions such as guilt, disappointment, anger, denial, which eventually gets replaced with a sense of acceptance. I dont want to be ill. I never wanted or expected to not be able to work, to not be able to clean my own house, to not be able to do my hobbies, to not be able to socialise whenever I wanted to. I used to be very sporty, and I used to be very hard-working and ambitious. Suddenly, I am faced with the fact that I cant be that person anymore. I accept my limitations and that the only way to get back even vaguely towards the life I had before (whilst believing that I wont quite get back to where I want to be) is to pace myself, to set my sights a lot lower than I used to and to stop saying yes to the things I did before.
So, when a relative says to me "are you free for a family meal next weekend?", it isn't just a case of "am I free?". I have to think whether I will be up to getting ready on time, getting there, what I need to take if anything, who will be there, what level of involvement will be expected from me (I cant very well sit quietly on the sofa if there is going to be a room full of children or a party of adults drinking with loud music on, but if its just a couple of people, I can generally relax a bit more), also how long will I be able to stay for, and how long is it likely to affect my health for (generally speaking a social occasion will knock me back a couple of days at least). And how do you explain all this to people, without feeling pathetic, attention-seeking or subordinating yourself? Its nice to have understanding but no-one wants pity!
Then I have my best friend asking me if she and her young family can come to visit me for a whole weekend. I havent seen her in 18 months but I know this could well set me back two weeks. What do I do? I want to see my friend, and there is no way I can visit her. But my health is just recovering. Then I get a good couple of days and think I can conquer anything so I think "yeah, what the hell, why not", but in reality I know that I shouldnt even contemplate this for months yet.
And then there is work. I want to be at work. I worked hard to get to the point I am at in my career. I enjoy my job and I like the people I work with. I feel guilty for not being at work. But there is no way I can even contemplate work at the moment. The physical and mental demands are too much. So will I recover enough to go back at some point? Will I be able to work part-time? On what basis, what kind of hours? Or is it fairer to everyone to hand in my notice? Would this mean I can be free of one source of immense guilt and get on with some relaxing activities instead of feeling guilty all the time. Of course, the odd 10 minutes in the day that I feel ok, is not the same as sustaining a 40+ hour week with constant demands being made of you.
Whichever way I look at it, there are no easy answers. Just more questions. I try not to think about the long-term but its normal to. And here goes the constant pattern of denial and acceptance, of questions and decisions... none of which are about to get any easier.
Not only is there the stigma associated with chronic illness, but there is a whole range of emotions that go with it. This aspect of the illness is often poorly appreciated and understood. I regularly experience emotions such as guilt, disappointment, anger, denial, which eventually gets replaced with a sense of acceptance. I dont want to be ill. I never wanted or expected to not be able to work, to not be able to clean my own house, to not be able to do my hobbies, to not be able to socialise whenever I wanted to. I used to be very sporty, and I used to be very hard-working and ambitious. Suddenly, I am faced with the fact that I cant be that person anymore. I accept my limitations and that the only way to get back even vaguely towards the life I had before (whilst believing that I wont quite get back to where I want to be) is to pace myself, to set my sights a lot lower than I used to and to stop saying yes to the things I did before.
So, when a relative says to me "are you free for a family meal next weekend?", it isn't just a case of "am I free?". I have to think whether I will be up to getting ready on time, getting there, what I need to take if anything, who will be there, what level of involvement will be expected from me (I cant very well sit quietly on the sofa if there is going to be a room full of children or a party of adults drinking with loud music on, but if its just a couple of people, I can generally relax a bit more), also how long will I be able to stay for, and how long is it likely to affect my health for (generally speaking a social occasion will knock me back a couple of days at least). And how do you explain all this to people, without feeling pathetic, attention-seeking or subordinating yourself? Its nice to have understanding but no-one wants pity!
Then I have my best friend asking me if she and her young family can come to visit me for a whole weekend. I havent seen her in 18 months but I know this could well set me back two weeks. What do I do? I want to see my friend, and there is no way I can visit her. But my health is just recovering. Then I get a good couple of days and think I can conquer anything so I think "yeah, what the hell, why not", but in reality I know that I shouldnt even contemplate this for months yet.
And then there is work. I want to be at work. I worked hard to get to the point I am at in my career. I enjoy my job and I like the people I work with. I feel guilty for not being at work. But there is no way I can even contemplate work at the moment. The physical and mental demands are too much. So will I recover enough to go back at some point? Will I be able to work part-time? On what basis, what kind of hours? Or is it fairer to everyone to hand in my notice? Would this mean I can be free of one source of immense guilt and get on with some relaxing activities instead of feeling guilty all the time. Of course, the odd 10 minutes in the day that I feel ok, is not the same as sustaining a 40+ hour week with constant demands being made of you.
Whichever way I look at it, there are no easy answers. Just more questions. I try not to think about the long-term but its normal to. And here goes the constant pattern of denial and acceptance, of questions and decisions... none of which are about to get any easier.
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