bywyd

I'm more than a little puzzled and irritated at myself with regards to recent news that my mother may have Lupus. Her mother had Lupus. Which has, of course, led to a fresh round of the game "maybe you have xyz not cfs."  (A fun game for all the family to play! Not to mention random strangers!) I'm irritated at myself for engaging in this for a number of reasons, not least that I have been checked for Lupus, at least once a year, since falling ill. Ditto thyroid problems and diabetes.

But I think the biggest irritation is that I am implicitly engaging in a sort "hierarchy of disability" in these discussions. What am I unconsciously implying by participating in this? Is Lupus somehow more "real" than cfs because there are diagnostic tools and it has been recognised for longer? That is something I most emphatically do not believe with my conscious thought-processes, but I'm looking suspiciously sideways at my subconscious. (btw, is there an emoticon for that?)

Something of the same implicit assumptions are present in my feelings about using a wheel-chair. In June I am travelling overseas. Last time I did this it was only an 8 hour flight, (this time it is one 8 hour leg and one 15 hour leg each way) but even so it was so exhausting that I could barely walk off the plane at the other end. It was a horrible, horrible experience. Mostly because of the reaction of my parents. There is no nice way to write this. They were ashamed that I could barely use my legs. In their defence, this was quite early in my illness, and at that point I didn't realise that people with cfs might lose the use of their legs. My parents felt that I wasn't trying hard enough. Long and painful story short, in June I will use a wheel-chair to get through the airport. I probably can walk the distances involved. But standing in a customs queue - potentially for hours - is utterly out of the question. But I am feeling enormous guilt and shame over the idea of using a wheel-chair when I don't need to (ie I am not paralysed), despite the fact I do need to. I have only just started truly self-identifying as disabled. Which is ludicrous, because I've been disabled for years.

Obviously I've internalised a great deal of my parents' shit about "pulling oneself up by one's boot-straps" and "mind over matter." With a nice big helping of crap about what is and isn't a 'real' disability. [I want to emphasise that in people not myself, cfs and all sorts of other invisible disabilities are both consciously and unconsciously very much counted as 'real disabilities' - all this junk seems to only apply to me.]

This sounds unfair to my parents. In fact, they do more in terms of accommodations than many. (My father is a doctor, and accommodations for his patients have always been a priority, and they truly think about what patients need, not just doing the bare minimum of what is required.) But here is where hierarchies of disability come in. I have all my limbs, look healthy, can mostly control my limbs. When I can't, it feels as if they feel I'm putting it on, or not trying hard enough. They have come so very far in four years. But it is still as if I'm not a 'real' disabled person. They make me feel this at the same time as buying me walking sticks and purposefully choosing the most colourful, 'youngest' looking one for me. Honestly, I'm not sure how they're accomplishing these mental gymnastics.

I do also wonder if there is some paternalism and/or othering going on here. People with disabilities are patients, people with disabilities are over there. We'll be very nice to them, and do everything we can to help them, but they are not us. Just to complicate matters is the intense awareness that my parents have that we are in a 'system of limited good' with regard to disability in this country. I have never received the disability pension, because when my GP suggested it, my parents said "There's not enough to go around as it is, we're lucky enough to have the means to support you, that money needs to go to people without that support." And there's a bit of that with me and the wheelchair use. I think "Am I ruining it for people who have no other options if people see a seemingly 'able-bodied' person using a chair? Will it just increase misconceptions about PWD??!! Argh!"

It would seem I am doing those extreme mental gymnastics myself, simultaneously recognising that I am disabled, but feeling guilt over using systems and tools for people with disabilities. It is exhausting, and I don't like what it says about my subconscious beliefs about disability.

Sooo much has gone on since I last posted that I don't know what to post about.

( Cut for a somewhat disconnected ramble cfs-induced ramble about my life at the moment. )

So, that's me at the moment - and Easter is bearing down on me like a freight train of poor preparation, liturgies I wouldn't choose and sleep-deprivation!

... be forced to use your walking stick.
This inevitably leads to "what have you done to yourself?" (the most common form of this question, I have discovered) Whereupon I reply that I haven't done anything it is 'just' the cfs*. And each time I do it, I hate that I sound somehow apologetic. What is the narrative behind what I'm saying? "I'm sorry to have worried you, casual acquaintance, but fear not, I haven't injured myself, it is merely a debilitating, chronic illness that I suffer all the time, but usually without having to trouble you by using a stick."?
And even though I've done this apologetic thing, and even though I have mostly been upbeat about it ("oh, I just got the balance wrong this week!" said in a blithe tone) I have completely screwed up the script that apparently exists for speaking to youngish people with a walking stick. One can just tell that their next question - after I revealed I had sprained my ankle in an amusing incident involving an aubergine - was going to be "and how long will you need the stick?"  But no, I have to have a socially awkward open-ended relationship with a walking stick. Their next cue in the script evaporates before our very eyes, and we are left with "Um, well, hope you're feeling better soon." Which is well-intentioned, I feel certain.
But here is the dirty little secret, the one I work so hard not to reveal, so much more shocking than the priest saying "bloody" (which I did at last night's pot-luck dinner. Whoopsie) I won't be feeling better soon. I may not use the stick, (because, frankly, it is a pain only having one hand) but I won't be feeling 'normal'.
Whatever that is supposed to be.
In other news, strongly considering buying a range of sticks in the liturgical colours, so that if worst comes to worst, at least my stick will match the vestments.

* Lower-case for cfs is entirely intentional.