gwyn_bywyd: Pink flower growing wild in a patch of grass (Carport flower)
Today has been a horrible day, in a ghastly week. I am waiting in dread for what it will throw at me next

I discover today is cfs Awareness Day. (Thanks [personal profile] mewithme !) Felt I ought to post something. But (ironically) I have very few spare spoons today. So.

5 things I've learnt in the past year about cfs.

1.  It might be a retro-virus.

2. I can spontaneously develop new (for me) symptoms at any time. This year it has been joint pain. Fun times.

3. There is a word for the thing where I lose words or completely lose the ability to speak. Aphasia. I think.

4. The chaotic disorganised disaster that is my home and makes life so much more difficult is so common with sufferers it may as well be counted as another symptom.

5. Dreamwidth makes cfs more bearable. :-)

Thank you to all of you who make Number 5 true.

gwyn_bywyd: Photo of a yellow orchid. (Orchid)
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.
gwyn_bywyd: Photo of a yellow orchid. (Default)
A whole range of things have had me thinking in recent days of how strongly influenced by my upbringing I am. (As I suspect we all are.)

[personal profile] recessional  has written this wonderful meta-post about cleaning:

For me one of the fantastic parts of her thinking was distinguishing different types of cleaning from one another. She mentions particularly 'cleaning as performance of virtue.' Which rang so many bells it was like a carillon in here! One of the distressing things for me with cfs has been the inability to take adequate care of myself. Granted I have always been pretty messy. But I don't really recall it being so utterly overwhelming that I would cry about it. And then this article suggested that this is common in cfs sufferers. In fact it said:

'The clutter problem is almost universal with these patients, Lapp said. "They get so distracted that they start multiple projects, and the house ends up ... a mess. It's overwhelming."'

Which also made me cry.

So, I'm not alone. But I've also got this vexed relationship with tidiness. My mother has very definite psychological problems with mess. If as children we were untidy, we were BAD PEOPLE. As we grew up it took on another dimension, not only is mess inherently bad, we are also bad for making our mother so unhappy. (And frankly, on occasion, so mentally ill) Interestingly, it is more about tidiness than cleanliness for her, she is actually alarmingly laise-faire about food hygiene! It also didn't lead as much to a criteria on which to judge other people as it was a criteria on which to judge ourselves. Once I went to Uni I discovered that other people didn't live the way our family did. My mother will say "Will someone please go and clean up the appalling mess in the lounge-room?" You go into the lounge-room - and it is perfectly tidy, except there are some DVDs sitting on top of the television and the cushions on the seats look as if someone has sat in them.

Friends in Uni would have some fun trying to upset me with their lax hygiene, but mess seldom bothers me in other people's houses. But in my own house it has me deeply, profoundly distraught. Some of it is about functionality, it gets so I can't find the stuff I need for work, so the energy of finding it is added to the energy needed for the actual task, exhausting me further. But the post has crystalised for me that part of my problem is that I believe that part of what an adult woman* does is have a tidy home. For me to live otherwise is not being an adult. Also, there is the shame involved if someone else should happen see the mess.

The other way in which I am such a product of my parents is this idea that I am supposed to very strictly limit what I do in the evening. I have certainly heard the idea that one should not be looking at a screen in the evening before, although I have not implemented it. Apparently I am not supposed to be doing craft-work or reading either. Which doesn't answer the question of what I'm supposed to do if I am still working at 10.30 at night. This habit has come to me from my parents, both of whom spend the evening in front of the television working, all evening, every evening.

Again, according to my mother, watching television while not simultaneously doing something else makes you a BAD PERSON. It makes her very, very angry to see any of us doing this. And once again, you not only feel bad for doing this inherently bad thing, but you also feel bad for making her so unhappy.

So, a plan. I don't know if I'm really capable of reversing the thought-patterns of a life-time, but I'll try to stop working by 8.30pm, switch off screens - tv and computer - and use the extra time to do a little gentle tidying. However, the cfs-police can wrest my bed-time book from my cold, dead hands! Let call this a plan!

* And, yes, I am VERY aware of the messed-up gender stuff going on here. My mother frantically cleans the house before my father gets home from work despite the fact he would not notice her so-called mess. Every evening is like a very particular little time-warp to the 50s! Despite working (in mostly unpaid capacities) so many jobs that they add up to more than one 'normal' full-time 9-5 type job. Pointing out to my mother that this is a complete contradiction to - nay, betrayal of - her principles does not get a person very far.
gwyn_bywyd: Photo of a yellow orchid. (pic#434926)
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!


Mar. 9th, 2010 04:59 pm
gwyn_bywyd: My cat, curled on my bed, looking smug (pic#434923)
I feel I should say before I begin that don't really know what this post is. Being an extrovert (and thus, I think best by talking) it might be an attempt to work things out for myself or it might be merely a cathartic rant. Doubtless part of the angstiness is stemming from once again trying to be at peace with the way in which I'm going to be single my whole life. I wonder when I'll finally manage this peace, I thought I'd been through this already and was ok with it. Apparently no.

I've been very interested to read a few people's musings on friends, and on the ways they make friends/ plan on making friends in new places.

It crystalises for me something I've known for a long time but kept trying to ignore. I am very, very lonely here. Lonely in a way I've never encountered before, and I feel powerless to start to overcome it. There are all sorts of factors involved in this loneliness: the isolating effect of cfs, the nature of my job, and being moved to a very cliquey rural town. It is also probably compounded by the life-stages many of my already existing friends find themselves at: in committed relationships, with new children, or in the midst of frenetic social times. Which is wonderful, and if things were different that would be me too.

One of my colleagues was recently asked by our Big Boss "Is she making friends?" in a way that obviously expected the answer yes. My colleague, I think, may have looked at him blankly for a few moments. Running through her head was "You moved her to an insular town, hours away from everyone she holds dear, she uses all her energy for work, she can't be friends with people she meets through work, but as previously mentioned, she has no energy for ANYTHING else." I think she may have actually said "It is a hard town to make friends in."  Of course, he has never bothered to ask me the question.

I try to make the effort to call family and friends, or write to them, but often when I am home I am slumped in exhaustion on the couch, trying to muster the energy to perform tasks of basic self-care (cooking, cleaning, laundry) or to do more work.

I've worked out that the only people I see regularly outside of work are my spiritual director and my yoga instructor. Lovely folk and deeply caring, but NOT to be confused with friends! Oh, and shop-assistants, who tend to see me in my work-role, and who relate to me in that caring role way. So even if I don't see work people at the supermarket, the check-out can be quite draining!

This is among the reasons that I frequently thank God for the internet, it really is helping me to feel as if I am in touch with friends, even if I haven't the energy to chat to them. And I am revelling in the process of meeting new people that has come about through this wonderful Dream-width thingammy.

But in terms of strategies to acquire local friends, I really don't see there are any. The most important thing is to be self-aware, and watch for danger signs that loneliness is leading me to inappropriateness. On the plus-side, I think I am doing an adequate job of this watchfulness, and am building up things like this blog to act as pressure-valves.
gwyn_bywyd: Photo of a yellow orchid. (Default)
... 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.


gwyn_bywyd: Photo of a yellow orchid. (Default)

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