Hello M.E.
Vibrant, charming, intelligent.
Extremely fit, goes to the gymn every day,
you know.
Dresses with style, always something unique.
Doesn’t look her age;
at least ten years younger.
Competent, confident, charismatic.
Very well-organised. Independent to a
T.
Loves to walk, talk, dance, cycle, swim, work-out.
These are the things they used to say,
before.
And now?
They don’t say anything much, but I can see
in their eyes,
and in my mirror,
and I know in my heart,
that much of that is lost.
Now people don’t recognise me,
walk right by without a glance.
Looking ten years older, these days.
Clothes boring and easy-wear.
Mind grinding to a halt, permanently
fogged, befuddled.
No more work-outs, no more swims,
no more dancing.
Goodbye to charisma, intellect and
youthful looks.
Goodbye vibrancy, fierce independence,
organised life.
Goodbye to most of the things that
made me me,
Hello M.E.
Sunday 15 January 2012
Disability Living Allowance
It's hard to write about my illnesses because, like most people, I try not to think too much about their impact on my life, and that of my son.
Briefly, I have PTSD, Asperger's, chronic depression, generalised anxiety disorder all dating back to my teens (40+ years ago). About ten years ago I also began to show symptoms of M.E./CFS. Oh, let's not forget IBS, various digestive problems etc.
See, I just hate talking/writing about it all. Gets me down.
Anyway, my life was lurching along in a limited fashion before the M.E. because I had lots of physical energy which allowed me to walk, dance, sing, visit the gymn almost daily for a good work-out and so on. These activities helped burn off the anger I carried from my childhood, raised my seretonin levels, and helped ease the anxiety/depression/PTSD symptoms.
When the M.E. hit, my energy, of course, vanished and I changed over the period of a couple of years from an extremely fit person with excess energy, who could walk for hours, then dance for hours, all in the same day, and not feel too tired, to .... Well, how to describe myself now? In a nutshell, it feels like I've aged 20 years. I'm 55, and previously visualised myself as staying very fit right into my 70's (like my dad), still doing my daily yoga, still eating well, still enjoying a bubbling vitality.
I feel like I've been catapulted by the M.E. into a premature old age, so most days I'm like a not very fit 70 year old. When I describe the M.E. symptoms to people who don't know anything about it, the best way to summarise it as it impacts on me is that on better days I feel like I'm just recovering from a bout of flu, on worse days I feel like I have flu, just minus the snotty nose. Aching joints and muscles, nausea, dizziness, extreme fatigue, "brain fog" (inability to concentrate on anything), weakness; well most of us have had flu, so, yes, like that.
On my better days I can manage out for a short walk, and do gentle housekeeping tasks, but I still have to rest twice a day for at least an hour at a time. I find I can manage to be upright and doing things (whether chatting with a friend, sitting at a pc, going for a short walk) for a maximum of 3 hours before needing to like down and rest.
On my worst days, I can't leave the house because the illness causes dizziness, nausea and increased weakness (as described above), I can't chat with friends, or manage light housework. I basically have to spend the day resting, with longer periods lying down.
Losing my energy has badly impacted the mental health side of my problems so the depression is now often suicidal, the anxiety is acute and unbearable, and the PTSD symptoms (acute sensitivity to noise/light/smell/crowds/emotional tension)have also worsened.
At present I'm only on the lowest rates of DLA for care and mobility (long story,maybe for another day, but currently disagreeing with recent decision to disallow completely), but if my DLA was allowed, preferably at mid rate, I would be able to do the following: pay someone to cook me a decent meal from time to time; pay someone to drive me somewhere new so I can get further than my current 3 mile radius; pay someone to walk with me so I can walk in new places; pay someone to accompany me to my local Sainsbury's where I've shopped for 20 yrs and simply won't give up going (just for a bit of normality in a life that feels very not normal) but where I frequently end up sweating in panic at the checkout and/or leaving the store in tears; pay someone to drive me to and from said shopping trip so that I don't have to cry in frustration because I can't concentrate enough/have enough strength to turn the wheel properly to park the car; same person could help me carry the shopping in a bit quicker than about one item per bag because I can't carry more.
There's more, much more, but that's my limit of writing/thinking about it for now. Going through the recent claim form for DLA review, and then again for disagreement letter left me more ill than ever, and plunged into a suicidal depression due to focussing on everything which is wrong with me, rather than my usual approach, which is to focus on what I can still manage.
Briefly, I have PTSD, Asperger's, chronic depression, generalised anxiety disorder all dating back to my teens (40+ years ago). About ten years ago I also began to show symptoms of M.E./CFS. Oh, let's not forget IBS, various digestive problems etc.
See, I just hate talking/writing about it all. Gets me down.
Anyway, my life was lurching along in a limited fashion before the M.E. because I had lots of physical energy which allowed me to walk, dance, sing, visit the gymn almost daily for a good work-out and so on. These activities helped burn off the anger I carried from my childhood, raised my seretonin levels, and helped ease the anxiety/depression/PTSD symptoms.
When the M.E. hit, my energy, of course, vanished and I changed over the period of a couple of years from an extremely fit person with excess energy, who could walk for hours, then dance for hours, all in the same day, and not feel too tired, to .... Well, how to describe myself now? In a nutshell, it feels like I've aged 20 years. I'm 55, and previously visualised myself as staying very fit right into my 70's (like my dad), still doing my daily yoga, still eating well, still enjoying a bubbling vitality.
I feel like I've been catapulted by the M.E. into a premature old age, so most days I'm like a not very fit 70 year old. When I describe the M.E. symptoms to people who don't know anything about it, the best way to summarise it as it impacts on me is that on better days I feel like I'm just recovering from a bout of flu, on worse days I feel like I have flu, just minus the snotty nose. Aching joints and muscles, nausea, dizziness, extreme fatigue, "brain fog" (inability to concentrate on anything), weakness; well most of us have had flu, so, yes, like that.
On my better days I can manage out for a short walk, and do gentle housekeeping tasks, but I still have to rest twice a day for at least an hour at a time. I find I can manage to be upright and doing things (whether chatting with a friend, sitting at a pc, going for a short walk) for a maximum of 3 hours before needing to like down and rest.
On my worst days, I can't leave the house because the illness causes dizziness, nausea and increased weakness (as described above), I can't chat with friends, or manage light housework. I basically have to spend the day resting, with longer periods lying down.
Losing my energy has badly impacted the mental health side of my problems so the depression is now often suicidal, the anxiety is acute and unbearable, and the PTSD symptoms (acute sensitivity to noise/light/smell/crowds/emotional tension)have also worsened.
At present I'm only on the lowest rates of DLA for care and mobility (long story,maybe for another day, but currently disagreeing with recent decision to disallow completely), but if my DLA was allowed, preferably at mid rate, I would be able to do the following: pay someone to cook me a decent meal from time to time; pay someone to drive me somewhere new so I can get further than my current 3 mile radius; pay someone to walk with me so I can walk in new places; pay someone to accompany me to my local Sainsbury's where I've shopped for 20 yrs and simply won't give up going (just for a bit of normality in a life that feels very not normal) but where I frequently end up sweating in panic at the checkout and/or leaving the store in tears; pay someone to drive me to and from said shopping trip so that I don't have to cry in frustration because I can't concentrate enough/have enough strength to turn the wheel properly to park the car; same person could help me carry the shopping in a bit quicker than about one item per bag because I can't carry more.
There's more, much more, but that's my limit of writing/thinking about it for now. Going through the recent claim form for DLA review, and then again for disagreement letter left me more ill than ever, and plunged into a suicidal depression due to focussing on everything which is wrong with me, rather than my usual approach, which is to focus on what I can still manage.
Monday 16 August 2010
Sunday 25 July 2010
Please feel free to comment. I didn't really intend my first ever blog to seem so personal; I guess I hoped it would strike a chord in some other folks and they would share their thoughts, too :) Although I use "I" a lot when I write (the legacy of years of therapy), I'm not really just talking about me, but wondering about these things as they apply to anyone.
Here's a question to get y'all going:
What do you think of Socrates' statement that "a life unexamined is a life not worth living"?
Regards,
Jay
Here's a question to get y'all going:
What do you think of Socrates' statement that "a life unexamined is a life not worth living"?
Regards,
Jay
Saturday 24 July 2010
Age, illness and identity : some thoughts
I bumped into a young man the other day who I had met for the first time a couple of days previously. I nodded, said "hello" expectantly and then noticed his blank expression. "You don't remember me, do you?" I asked. "I met you the other day with Val and her dog, and we chatted about your dogs".
The guy's face still looked blank. "You would have remembered me back in the days when I was pretty and young" I found myself blurting out, slightly accusingly. He eventually remembered our meeting and we exchanged a couple of sentences before moving on.
I don't mind that I'm not pretty and young anymore (well, not that much, anyway), but it has been a strange process over the last few years to adjust to the experience of seeming to be invisible to most people, especially men. Sometimes I find it amusing, sometimes liberating, and other times I want to scream in frustration "I'm still the same person and still as worthy of notice!".
My illness (M.E. or chronic fatigue syndrome; take your pick) started about 8 or 9 years ago and was gradual onset in that I would have short bouts of feeling ill followed by complete recovery. This went on for about two years, during which time I would describe the illness as "something similar to, but definitely not M.E.". A period of denial and bewilderment, I suppose. After the initial two years, the illness settled into a pattern of periods of acute illness (unable to do anything much), followed by weeks of intermediate illness (able to do some things if I pace myself).
The start of the illness coincided with the feeling of being middle-aged (late 40's onwards; I'm now 53) and was followed by an extremely traumatic time for my family. These things added together (illness, age, period of high stress) hit me hard. I changed from someone who was extremely fit and healthy, able to exercise for hours without any tiredness; someone who was considered attractive and generally taken to be about 10 years younger than I am; someone who was highly intelligent, to ...
Well, trying to be objective in describing myself now I would say that I definitely look my age, I'm certainly not fit and healthy, and my intelligence, although not entirely gone, has been affected by my illness in that my mind often feels fuggy and clouded. Gone that sharp, incisive intellect and ability to articulate fluently, and in its place ... again, hard to describe accurately, but let's just say I often feel pretty "thick".
On a good day emotionally I can smile about the decline of my intellectual powers, and it's almost interesting to hear myself flounder a bit in a conversation after years of being smoothly articulate. On those good days, I feel mellow and accepting of the loss of my youth and looks, and occasionally fairly accepting of my illness, despite its constraints.
I have had times, though, where I ponder the question "who am I?", something to which I always thought I knew the answer (silly me) and from my own experiences, and also working in a Nursing Home with people who suffer from Alzheimer's and other dementias, I realise now that the "I", the identity which both I and others perceive to be "me", is actually extremely fluid.
The guy's face still looked blank. "You would have remembered me back in the days when I was pretty and young" I found myself blurting out, slightly accusingly. He eventually remembered our meeting and we exchanged a couple of sentences before moving on.
I don't mind that I'm not pretty and young anymore (well, not that much, anyway), but it has been a strange process over the last few years to adjust to the experience of seeming to be invisible to most people, especially men. Sometimes I find it amusing, sometimes liberating, and other times I want to scream in frustration "I'm still the same person and still as worthy of notice!".
My illness (M.E. or chronic fatigue syndrome; take your pick) started about 8 or 9 years ago and was gradual onset in that I would have short bouts of feeling ill followed by complete recovery. This went on for about two years, during which time I would describe the illness as "something similar to, but definitely not M.E.". A period of denial and bewilderment, I suppose. After the initial two years, the illness settled into a pattern of periods of acute illness (unable to do anything much), followed by weeks of intermediate illness (able to do some things if I pace myself).
The start of the illness coincided with the feeling of being middle-aged (late 40's onwards; I'm now 53) and was followed by an extremely traumatic time for my family. These things added together (illness, age, period of high stress) hit me hard. I changed from someone who was extremely fit and healthy, able to exercise for hours without any tiredness; someone who was considered attractive and generally taken to be about 10 years younger than I am; someone who was highly intelligent, to ...
Well, trying to be objective in describing myself now I would say that I definitely look my age, I'm certainly not fit and healthy, and my intelligence, although not entirely gone, has been affected by my illness in that my mind often feels fuggy and clouded. Gone that sharp, incisive intellect and ability to articulate fluently, and in its place ... again, hard to describe accurately, but let's just say I often feel pretty "thick".
On a good day emotionally I can smile about the decline of my intellectual powers, and it's almost interesting to hear myself flounder a bit in a conversation after years of being smoothly articulate. On those good days, I feel mellow and accepting of the loss of my youth and looks, and occasionally fairly accepting of my illness, despite its constraints.
I have had times, though, where I ponder the question "who am I?", something to which I always thought I knew the answer (silly me) and from my own experiences, and also working in a Nursing Home with people who suffer from Alzheimer's and other dementias, I realise now that the "I", the identity which both I and others perceive to be "me", is actually extremely fluid.
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