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.
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