CHAOSTOCOSMOS

Tuesday, 21 April 2009

Fashion for the fat over-fifty with fibromyalgia

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.
Fibromyalgia takes 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 fibromyalgia causes depression (no, it isn't the other way around) and, imagine 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. (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 the fibromyalgia, 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 ...
The contrast between me before and now, would be like comparing Lady Gaga with Susan Boyle and, with all due respect to the latter, I don't think she's anyone's idea of a style guru, or what any reasonable person hopes to look like in the AFTER pictures.
"Not only do you have to be physically appealing to deserve fame; it seems you now have to be good-looking to merit everyday common respect. If, like Susan (and like millions more), you are plump, middle-aged and too poor or too unworldly to follow fashion or have a good hairdresser, you are a non-person," The Herald points out.
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 the fibromyalgia 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 certainly couldn't sit in one, because of recurrent cystitis - and would have trouble lifting myself out, but balancing to wash myself in the shower, or even standing there long enough to do it (complicated by cold temperatures and abnormally low water pressure) has meant that this has become difficult and painful. Unless I have to go somewhere now, I just don't volunteer for the extra pain any more. 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. Swimwear, sleeveless tops and skirts are out.
  • Because they rub my skin raw I cannot comfortably wear any sort of bra, no matter how soft, but, because I have two very noticeably unmatched boobs that act like a pair of oversized and underset blancmanges intent on wobbling then collapsing downward, plus huge, protruding, dark nipples ... all I can I wear are huge, dark coloured (usually black) baggy tops. Of course, I feel like I'm wearing the style equivalent to a bin-liner. Got a better idea that doesn't hurt?
  • 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 be looser and 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 teapot 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 yards: 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

image

Yesterday, with some time to spare before an appointment there, I ventured to have a slow stroll around the attractions in Christchurch, Dorset. The above is one of them: 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, really fascinating, thank you, but it's still murky! At least, unusually, the sun was shining and there was a blue sky, eh?

Good weather in Britain is not the only short-lived thing. Hospitality is 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 yesterday, being a tourorist, I had a camera in my hand. Nuffin fancy, just a small Kodak digital pointy-shooty thing. Ya know, only one step up from the other camera in my bag: the one included in my mobile phone. Not that I wanted a camera in my mobile phone, but you can't get them without these days ...

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." (Yeah, just to only maybe take the odd crappy snapshot with a Kodak EasyShare V1003.)

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 with faulty, nonsensical and unwelcoming policies such as this, then eventually, when the penny has dropped that they can no longer get away with it, they might amend them to something better.

More crappy snapshots from Christchurch

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 (or at least have to appear to do so, as I'm sure their careers depend on it) 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, simply by taking the dog for a dozen short walks daily. 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 that 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, 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 furballs 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.

Tuesday, 7 April 2009

Tuesday, April 7th, 2009

World Health Day. Well, that was a bit ironic.

Woke up with terrible post-exertional aches and pains in my legs again (as I knew I would), chest pains, as well as a sore throat and the snuffly nose of someone about to come down with a cold or a nasty dose of flu. All of which made it very difficult to go out again, but, since I had a hospital appointment, I couldn't postpone it.

Took the early bus to catch the train, but because the sun was shining (shock), it was too warm in the bus and I had to get off again as fast as I could because I felt so nauseous and thought I was going to throw up.

Train journey was thankfully uneventful and I managed to catch the free bus to the city without having to wait as that was waiting outside the station.

Having had to come this far, I wanted to combine the trip with some shopping, so first I had something to eat, sat down for a rest and a coffee, but I'd still had enough after looking round only three smallish stores on one level of the shopping mall and could do no more.

My legs felt like lead, were incredibly painful and I was absolutely exhausted already, so I gave up and went to sit in a cafe. Rather than make matters worse still by trying to hop around on buses - I really can't cope with this on any level; bus journeys are painful with the jolting, so the less, the better; I don't know the area, so I didn't know what buses I could catch and last time, I had to catch 2 different buses, wait around in less than salubrious looking surroundings and the bus stops are not that near the hospital - I got a taxi from outside the mall to take me to the hospital and took his card so I could call them to take me back to the station later.

As there are never any buses in this area at times you want them, I'd have to take a taxi from the local station home too, which means these hospital trips also get rather expensive. The cost of just this one trip added up to more than a third of my weekly benefits. But the "charitable" neighbour car service is no cheaper, it just provides convenience of a car, door-to-door.

And the upshot of today's outpatient visit is that it looks like I may have yet another pain problem / invisible syndrome to add to the laundry list: one I'd never even heard of until a few days ago, Vulvodynia.

As it says here, "If you were unfamiliar with vulvodynia, you might make the rational assumption, based on the name that is was connected in some way to the vulva or the vagina, both would be right (guesses about Volvo cars would not, however, be correct)."

All we were trying to do was a smear test, but this proved impossible, despite 3 different people having 4 attempts (all with the utmost care and patience.)

I'll spare you the fine details (definitely too much information) beyond that the pain was truly excruciating and felt as though I was being ripped apart like a chicken having it's wishbone pulled. It was a burning, searing, stabbing, tearing pain ... The whole experience was really harrowing and traumatic actually, enough that I screamed the place down, involuntarily.

No, I'm really not exaggerating and, no these things didn't used to bother me in the slightest.

And no, I haven't been using raspberry yogurt. smile

Dr. John Willems, head, division of obstetrics and gynaecology, Scripps Clinic believes that vulvodynia is a subset of fibromyalgia. (And, I'll bet he's right too.)

It also says, "Vulvodynia is also frequently found in patients suffering from interstitial cystitis." The symptoms of which I've had for 35 years.

It's also been more than 20 years since I found I couldn't use tampons; at least 10 years since I chose to have any sexual relations and had been around a dozen since I'd seen a gynaecologist, so this has probably been developing silently along all my other constantly worsening pain. Just never connected it all before.  

So, it's been explained, I need to discuss this with my GP, so that I can be admitted to hospital and be fully sedated to get this done. Hmm, outpatient visits are one thing, but this is a bit beyond my limit for entering any of the UK's third-world hospitals, voluntarily.

Monday, 6 April 2009

Monday, April 6th, 2009

Such a pleasant morning, considering, although I still felt dreadful, as I had done for days, nah, weeks, years ... So, I dragged myself out to join the local writers' group. It's something I wanted to go to and, I enjoyed being able to interact with human beings for a change, but the challenges of getting there - too early for my stiff body and a much longer walk than I can comfortably manage even on the best days - really showed up in my complete inability to, well, write anything even nearing coherent!

Probably the first "purely social" activity I'd engaged in (unless someone took me), for years and, I know the importance of not becoming a hermit, but it really does not help that, because there are so few buses, one is forced always to go to things way too early and / or hang about for hours afterwards. To a healthy person, this might present an opportunity to do a bit of shopping or something, but not to me any more.

As it was, from a 2 hour activity that began at 10:30 a.m., the first bus home would be after 2 p.m. and the next not until just before 5 p.m. That's really too long and, I had no choice but to pay for a taxi, because I could no longer walk, I was in terrible pain, my legs were like lead and I could hardly put one foot in front of the other.

When I got home, I just crashed, exhausted and fell asleep, involuntarily.

Sunday, 5 April 2009

Sunday, April 5th, 2009

Woke up stiff with pain in my neck. When I attempted to move my head to alleiviate this stiffness, my joints began clicking and banging painfully and there was a sound at the back of my neck I can only describe as grinding: as if my bones are crumbling.

The pain and stiffness hasn't gone all day and is now spreading down my back and it probably won't go unless I take a few days off from doing anything at the computer.

My legs continue to be painful everywhere and I found it especially difficult to stand for any length of time (not even minutes) to be able to cook dinner and, the sore spot on my right foot is still preventing me from getting into a comfortable positon.

Saturday, 4 April 2009

Food Crisis

Let me show you a real, tangible way in which poverty, meanness and / or divorce from reality causes very real difficulty on a day-to-day basis. In this BBC report, warning of a food price hike crisis, "a single mother of two young children, said the family was struggling on a food budget of £3 per head per day." She's lucky!

It was a major coop when I was finally able to have our groceries delivered, but I can't pay for them, partly because I don't have the money and because (as an unknown alien from abroad), the bank will not give me a card to do so.

So, it has to be paid for on mother's credit card. As I do the cooking, I do the menu, make the list and place the order monthly and, obviously, I tell her how much it's going to be. Usually, I get it to around the £70 - £80 mark.

Once it reached £100 and there was a frown and sharp intake of breath, because she considered that to be too much. I know that's a psychological barrier, but if the bill was to go over that, there would be a comment and an expectation that the next month be lower to compensate. If it was to go over consistently, I would be blamed, the delivery would be blamed. She could refuse to allow the order to be placed and we'd be back to her choice of cheap packet crap that would make my fibromyalgia flare up even worse and there is absolutely no way that I'm going to risk that happening.

Bear in mind too that this amount includes, not just food, but household things, like bog rolls, laundry soap, cleaning materials, etc.

Our monthly food bill for 2 people subtracting those things and adding the few fresh items bought each week, will come to an average of around £100.

This is not even £2 per person, per day. By the time you subtract the very few quid a month for cat food, it's probably going to be no more that £1.50, per person, per day - only half the amount the single mother struggles on. How much do I struggle then?

Previously, I was spending this much and more, to feed one person.

I'm also certain mother was spending almost this much for one person here in the UK too. Then mother says that £100 is about what they were spending when my father was alive. He's been dead almost a decade. She doesn't consider that it should now be more? She knows prices rise weekly, but will make no allowance for that.

In truth, by cooking from scratch, which most people appear to have become immune to, it's actually possible to not starve to death on so little money, but like they say, it's getting harder and you certainly don't get much fresh fruit and veg on it.

Thursday, 2 April 2009

Medical costs and lost productivity

Is it the same for people with obvious diseases and disabilities, I wonder, but having a long-term "invisible" illness, I feel constant pressure to prove that I'm really sick and not able to work. I'm made to feel that I'm a burden; a medical cost and a lost productivity (benefit) cost - not a human being who is unable to take care of myself and thus worthy of some help. In a dignified manner: I not even asking for charity, because I paid enough into the system back when I was considered a real human being.

But all we are, it seems, is someone who doesn't work, ergo a nuisance, a leech. `

The physical toll of having to fight for whatever scraps one can get is enough. The mental one is far greater. Both hinder the fibromyalgia / chronic fatigue syndrome patient's ability to cope with or even partially recover from their symptoms.

We are "damned if we do, damned if we don't", truly.

UPDATE: As I was saying, see here, "My other goal is to also stop the medical discrimination. In other words, if you have cancer you are taken seriously but if you have an invisible illness, TOO BAD." So, I'm not the only one to notice, clearly.

Wednesday, 1 April 2009

Wednesday, April 1st, 2009

Well, the cat's coat is soft and lovely and today it's positively gleaming. Now he can shed as much hair as he damn well likes on the carpets, but at least it'll be clean!

However, as a result of bending to wash and dry him, which, as I explained, was hardly a major task, I woke up even stiffer than usual with strain like pain in my lower back and right up the sides of my torso and into my shoulders and arms. From years of experience, I know it will take days of stretching and rest to unknot.

Yet, if I were reading that and wasn't inside my own body to know better, it sounds like a little bit of ache and stiffness: something one can "buck up" and ignore.

Honestly, the only way I can explain the back pain is that my back feels like it's broken in half and, sitting feels like it isn't strong enough to hold the top of me upright.

The pain is always much more disabling than is sounds. In addition to the aches and strains, which is pain at a level that can't be ignored (and doesn't respond to painkillers) one also feels generally unwell, more often that not with nausea, exhaustion (despite just having got up), and a general malaise akin to that you'd have when you're wiped out by a bout of bad flu. You feel so bad that even lying still is an effort.

Walking back and forth to the kitchen or the loo takes supreme effort as one feels like one's weight has just been trebled, one's legs are made of rubberised lead and you're dragging a ton weight behind you. Such simple movements make me breathless.

And when you've felt like that every other, or every third day, or at the very least once a week, for 15 years or so, you've really run out of ways to buck up and carry on.

But the sun was out, so one tries.

(And, of course, the mere fact that one tries one's best not to be floored by these symptoms means that one looks capable and, consequently, you're judged to have nothing at all wrong with you, because your legs do, in fact, still exist.)

The gardner came round to cut the lawn and I'd not met his new dog yet. I do so miss mine, so I asked to meet her. Of course, I knew I'd have mixed feelings, but what I wasn't expecting was that she would be a facsimile of my dog, who I'd had to put down just a few short months ago (against my wishes); my best friend joined at my hip.

Just a little darker in colour. Seemingly the same temperament. Same eyes. Same ears. Same nose. Same tail. And as I took the lead she just naturally took me for a walk.

I wanted to hug her, but I couldn't. I went cold. To say that this devastated me all over again, would be the understatement of the century. I felt a pain like a kick in the chest. A real pain, an ache, a longing that I can neither shake nor stand.

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