Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Tuesday, 21 April 2009

Fashion for the fat over-fifty with chronic illness

Getting dressed, let alone being stylish, takes an awful lot for granted: things that, if you're in perfect health, you won't even think about. ME and fibromyalgia take all that away.

You won't get any fashion tips here, I'm sorry, but I'll have a jolly good whine that will make me feel an awful lot better when I'm done, thank you. Maybe, once you've read it, you'll understand why we can't always do much to improve our appearances - this does not indicate that we do not want to, because we really would like to. Maybe you'll understand why these illnesses causes depression (no, it isn't the other way around) and, put yourself in our (very painful and uncomfortable) shoes.

Probably foolishly, I answered this quiz, Are You Stylish? ... knowing full well what the answer was going to be (personal sarcasm inserted in italics):
You Are Not Stylish (No, they don't say?) To be honest, you think fashion is a complete waste of time. (Yup and, worse, it encourages consumerism, planetary destruction, wage slavery, etc.) You don't really care about how you dress, and those who do are simply superficial. (I do care, but mostly agree.)
While you don't have to look like you stepped out of a magazine (Oh, I know I could, but it would be the "BEFORE" picture. LOL), maybe you should update your wardrobe. People treat you better when you look better. Besides, it's fun to express your personal style!
I'd love to update my wardrobe, actually, but there are around 1001 reasons why it's difficult to do. I really don't give a flying-fig about appearances, just for appearances sake, because there are far more important considerations in life, but one still cannot escape that such things do have an effect on the way others view and treat you and, it has a large impact on the way I view mirrors - I avoid them like the plague.

Budget has a lot to do with it: the amount of handouts / benefits I've had for the last decade and a half hasn't provided money for clothing at all, so I've had to rely on charity for the money, or the clothes themselves. For this reason, I avoid colours that are likely to come and go in and out of fashion. The inability to get to shops where there is a choice; because of lack of transport, costs ... restricts further.

Compared to many people, I'm not THAT old or fat (yet), but enough that they do make an impact on what looks nice and what's suitable too (i.e. nothing I actually like.)

Yet it SHOULD still be possible to reflect some sort of personal style that one is reasonably happy with, no matter what the circumstances. However ... though I don't tend to let on exactly how I feel about this, what I end up being forced to wear and how I look, because of a long list of challenges, has become really depressing.

And whilst I think nobody would accuse me of being vain, I really do miss the person I was and the things I used to wear that were even halfway decent. When I was younger, I didn't follow fashion either: I set trends and then other people wore them.

In the 70's I wore those huge platforms and heels and I long to again and can't ...

Is it any wonder that I feel a really profound and aching sense of loss; of my identity, of my dignity, my personality ... my very being? This psychological pain, which results from the physical, feels as though it reaches right down into the depths of my very soul. 

Oh, I suppose a certain amount of this is inevitable as we age, but chronic illness takes this to an extreme I just can't cope with: it's like somebody died - me! 
  • Showering and hairwashing have become real chores. I'm starting to have problems getting in and out of most baths, I rarely sit in one, because of recurrent cystitis and often have trouble lifting myself out, but balancing to wash myself in the shower, or even standing there long enough to do it has meant that this has become exhausting, difficult and painful. Unless I have to go somewhere now, I just don't volunteer for the extra pain. Do you have any idea how disgusting, degrading and undignified this makes me feel?
  • The style of my hair (well it can't have a style) has long been restricted to something that I can just wash and leave and then tie back for the remaining days while it's greasy and lank, because pain and stiffness mean I can't manage to wash it more frequently, nor can I do so other than in the shower, nor style it even when I do manage to wash it. Some colour would probably help lift my mood, but I can't easily manage to do that myself now either and I certainly can't afford to keep going back to the hairdressers to keep it maintained.
  • I've worn a little make-up for a special occasion once in around 10 years, because foundation gives me a rash or zits, eye make-up irritates my eyes to the point of pain and blindness, lipsticks (even new ones) provoke cold sores ... but I still feel like something the cat dragged in without some finishing touches.
  • Niceties like underarm and leg hair removal (don't even talk about other parts), were abandoned years ago, because whether it's shaving, creams, waxing or whatever, it causes a rash and burning that looks - and feels - like I'd tried to remove it with a blow torch. 
  • Because they rub my skin raw I cannot comfortably wear any sort of bra, no matter how soft, so I mostly stick to dark coloured (often black) baggy tops. Of course, I feel like I'm wearing the style equivalent to a bin-bag. 
  • Same goes for anything like waistbands, or any fitted clothes, or anything made from firm, solid fabrics. I can only wear stretch jeans for short periods of time, so I'm mostly restricted to track pants with loose, elasticated waists. Oh, I know, let's make them black to match the tops. It may be uninspired, unflattering and a tad gothic, but I'm happier with that than the wardrobe equivalent to magnolia walls: beige or grey, or worse, the matronly colour of choice, navy blue!
  • Also because of 35+ years of cystitis, I cannot ever wear tights and have to restrict any fitted clothing on my bottom half to short lengths of time. Clothing I wear regularly has to made from mostly natural cotton fibres.
  • When everything aches, just putting clothes on is difficult or painful, so again, they have to be as easy as possible to manage with fabrics that give and fastenings that are easy (or preferably no fastenings that would dig in.)
  • And nothing that ever needs ironing, because I can't stand up to iron and my wrists couldn't lift / operate an iron anyway, even if I sat down.
  • Footwear is just one hell of a nightmare. Any amount of heel whatsoever will cause pain, so that rules out anything smart and everything I like. I can't wear anything made of a stiff material, stitched or reinforced in any way, because it will rub sores, blisters or deep gouges in my feet within 20 yards - then it can be days before I can put shoes on or go out again (and this is in addition to the fact that my feet and legs are already crying out in pain.) Almost all sandals rub wherever they touch and, the few I've found that I can wear are hardly suitable for the UK winter. Come to think of it, with the amount of rain, they're about as useful as a chocolate fireguard in the UK summer too. Closed-in shoes are never suitable, because I have low ankle bones and every shoe I've ever tried rubs on that bone - now that causes blisters virtually immediately. In any case, any shoe that doesn't support my ankles is only comfortable as long as I don't walk further than a few feet: after that, I feel like my ankles have been twisted or broken. Booties that come up over and support my ankles are the only footwear that I find even remotely comfortable or suitable. But try finding some that are not too stiff, that don't cause blisters, are sold in my size, at a price I can afford, in the UK. Oh and they must have cushioned rubber soles, because the undersides of my feet hurt like they're bruised after walking a few yards otherwise and, soft zips or Velcro fastenings, because I can't manage laces, or buckles that rub, or dig in somewhere. I can't find any and, even if I could, you'd hardly call them stylish and they wouldn't enhance stylish clothes. And of course, they have to be worn with socks - which have to be made predominantly from natural cotton, or they'll make my skin raw. And just trying to put socks on is a task that takes it out of me that, by the time I've done it, I feel ready to call it a day and lie down ...
So, yes, I've developed my own lazy "non-style", because there's no other possible way to deal with this level of pain and sensitivity. And I've been coping with this for years, in silence mostly, so it isn't obvious exactly why: it just looks like I gave up living. There really aren't that many choices left and, despite knowing the result is unstylish and crap, I'm forced to accept this as comfortable enough for everyday, doubling nicely as my pyjamas. How do you think you would cope with such restrictions?

I'm a tourorist

Mill in Christchurch

Yesterday, with some time to spare before an appointment there, I ventured to have a slow stroll around the attractions in Christchurch, Dorset. This is the watermill, which sits alongside a murky brown bit of water. Wilkipedia tells us that it's unique, in that it is the only known mill which takes water from one river (the Avon) and spills it into a second river (the Stour). Yes, fascinating, but it's still murky! At least, unusually, the sun was shining and there was a blue sky, eh?

Pretty bridge over murky water

Good weather in Britain is not the only short-lived thing. Hospitality is getting pretty rare too. Christchurch is a tourist spot - I even overheard someone speaking Spanish yesterday - though solo Dios sabe (only God knows) what they will have made of the place. And God, if he ever existed, will have died of shock and be turning in his grave by now, seeing how tourists - or more aptly, as Tom Paine calls them "Tourorists" - are being treated in his house in Christchurch.

Not only would you think that the whole damn country should be tripping over itself to please this sudden influx of visitors benefiting from the weakened pound - it's much cheaper to please and keep an existing customer than it is to find new ones - you'd think the church would be scrambling to welcome people, given how Godless and unbelieving we've all become. Or maybe they've given up?

As I strolled into Christchurch Priory, being a tourorist, I had a camera in my hand. Nuffin fancy, just a small Kodak digital pointy-shooty thing. I had another in my mobile phone, of course. From which I mean to underline that every single person who enters the building is probably carrying some sort of terrorism device, I mean, is armed with a camera. Yet despite (or is it because of?) this whole backdrop of circumstances, Christchurch Priory are determined to make visiting as complicated and unwelcoming as they possibly can. All, it seems, for money.

I'd only just got inside the door, but not even had time to glance around when a woman in a blue ecclesiastical looking smock thingy accosted me and asked if I was going to take photographs. Well, since I had only just arrived and hadn't even looked around, I really had no idea if I was going to spot something that would inspire me to do so and responded thus; that I wasn't sure, honestly.

Remember, my camera is the sort of thing every tourist is carrying: it's not like I still have my Pentax with a lens so large that it would have stretched across the River Stour - that I could have held like an UZI machine gun - or made me look like press or anything. But, I was told, as this ecclesiastical guard dog pointed toward a booth in the middle of the aisle of the church, that I had to "PAY FOR permission and get a badge." What, just to only maybe take the odd crappy snapshot?

Paraphrasing the immortal words of John McEnroe, they "... can not be serious!"

But, those were the words I heard tailing off into the distance as I turned on my heels and exited, swiftly, without a word. I didn't think this assault even warranted a response. And, I don't think the Priory deserve my business if that is going to be their attitude. Yes, I did (wrongly, as it turned out) assume that this might have something to do with the current climate of fear, where photography is being turned into a crime, but apparently, this money-grabbing approach at the Priory is well known locally and has been going on for years.

Listen, I really don't mind churches getting in my face to beg for money for the roof fund and, to be honest, I wouldn't even mind them charging an entrance fee up front at the door - I'm aware that buildings like this require a lot of upkeep - but it's the manner that this is being done that is leaving a bitter taste. Truly, I wish I had time, energy or inclination to make a detailed study of Canon Law until I found a buried clause about "Thou shalt not stiff thy flock with jumped up photography charges", or some such equivalent.

My advice: do the same, refuse to patronize establishments, nonsensical and unwelcoming policies, then eventually, when the penny has dropped that they can no longer get away with it, they might amend them to something better.

Sunday, 12 April 2009

Brainwashing and torture won't cure us

The Countess of Mar, speaking in the House of Lords on March 18th:
... CBT is rarely offered without GET and ME patients know only too well-and their views are supported by some 4,000 papers on scientific and clinical research-that GET makes their symptoms worse.
CBT = Cognitive Behavioural Therapy (Brainwashing)

GET = Graded Exercise Therapy (Torture)

Honestly, no-one would choose to continue to exist (you could not call it a life) with an invisible illness, if all their ills could be eliminated by "simple" brainwashing and torture. 

My GP and another doctor in the practice have both mentioned exercise to me a couple of times. Whilst I understand why, this makes me so angry, because clearly, they don't really know me (hardly their fault, given the limitations of the system they have to work within), they obviously don't know what it feels like to have fibromyalgia / ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome) (and I certainly wouldn't wish it on them), but advocating exercise without asking what I've already done and feel about this, appears to me to be because doctors are expected to take for granted that we're all lazy, ignorant lardarses.

Now, I'm not denying that there are a considerable number of lazy, ignorant lardarses in the UK, but it's definitely undue discrimination to tar us all with the same brush.

Apart from the fact that, back in the day, I used to regularly swim, run, weight-train, take jazz dance classes, disco dance, jig about on a stage, walk miles and miles ... Believe me, I was the first to promote the theory that I need enough exercise to prevent me from ceasing up, but not so much as to cause me unbearable pain and fatigue that prevents me from even getting out of my bed. Common sense? You'd have thunk so, wouldn't you, but nobody's granted with having any of that nowadays.

Of course, the doctors have also "bought" the guidelines wholesale (as I'm sure their careers depend on doing so) that were clearly written with little or no regard to science and patients' needs and everything to do with saving money on benefits and making even the limbless walk (and therefore work).

The fact of the matter is that in a suitable climate, I used to be able to get just enough of the right kind of exercise, frequently enough on MOST days. And I did so willingly, knowingly and proactively. The number of days when the weather wasn't good enough were sufficiently few enough not to impact.

On good days, I took longer walks, slowly and deliberately, trying to keep up some level of fitness, whilst not overstepping my limits. Shopping trips did still cause me a lot of pain and fatigue, but I coped with them, by not making too many of them, resting first and crashing afterwards. It wasn't a perfect solution, but it meant I could manage most of the things I needed to do, most of the time.

Stress, pollution, diet and more also contribute to a worsening of symptoms, but if the temperature in my surroundings dips below 20 degrees centigrade, then my muscles spasm and tighten making ANY movement excruciatingly painful. Imagine a feeling like they're tearing. Imagine trying to make a frozen chicken walk. If the temperature outside is below 15 degrees centigrade and / or there is any amount of humidity (does not have to be actual precipitation), then even a short walk causes unbearable pain. The result, in the UK climate, is that for at least 10 months out of 12, it's too cold and / or too damp for me to go outside or get exercise at all without this causing pain that is totally disabling in nature. Then, even the short walk to the loo or the kitchen become monumental tasks from which I collapse, breathless, exhausted and in pain.

And I'm talking pain that is severe enough that:
  1. I feel (and on occasions have been) sick (beyond simply nauseous).
  2. Is so distracting that I cannot concentrate on anything; not even banal TV programs and my sight is blurred or eyes hurt too much to watch it anyway.
  3. If I was asked, I doubt I could have strung my first and last names together, let alone a complete and literate sentence.
  4. It feels like I've been beaten and bruised from head to toe, have half my bones broken, joints dislocated, am burning up in fever and am near delirium.
  5. It hurts so much, I'm often in involuntary tears, but I dare not sob, because even that movement would be too painful.
This pain does not respond to over-the-counter painkillers and if I take anything else it will probably cause constipation so severe that ... repeat steps 1 - 5 above.

Are you getting the idea? The only thing I can do at these times is to lie flat (even sitting up is too much) in a darkened room, hoping to fall asleep. Or die.

We're told to pace ourselves so as to avoid such "boom or bust", "all or nothing" events that cause such severe flare-ups, but without transport or real help, there is no way to avoid them. Shopping trips (I mean for essential items such as food and medication), trips to support groups (long since abandoned as harmful), even medical appointments create bloody hell. And during this past week alone, I've had over three days like that, because of 3 appointments.

Notwithstanding the fact that the cost of memberships to sports and leisure facilities or for exercise classes are prohibitive to someone on the sort of meager benefits we're required to subsist on; classes are often in the evenings when it is unsafe to go out even if we could do so, when there's no public transport running, even if it passed those places, which it doesn't. I can no longer drive. If I walked I'd be in the sort of excruciating pain I've described above and, from all that it should be obvious that I wouldn't be able to exercise on top of making the journey to the facility.

Swimming would be great, but when you've suffered with cystitis for 35 years, you know never to get into baths of water, especially not ones with bleach in them.

After at least a decade of reasonably successfully pacing and managing the fibromyalgia symptoms that I've been suffering for a minimum of 15 years, I reckon I have a pretty good handle on what I can and can't do by now and, more specifically, what happens when I attempt to push myself a little further (as in graded exercises). It does not increase tolerance making it possible to do more, as it would in a normal, healthy person. What it does do is to make matters worse in the short and long-term (possibly even permanently), by making flare-ups occur more frequently and for less.

And, apparently, 4,000 scientific and clinical papers agree with me.

Wednesday, 8 April 2009

Wednesday, April 8th, 2009

Awoken at 7.30 by the sound of cat hacking up hairballs on the carpet. The only good thing about that is, perhaps if he feels as crap as I do, maybe he'll just lie quietly or snuggle up. I do not have a single body part on me that does not hurt, badly. Life has been cancelled until further notice. Even TV watching hurts.


West Quay