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

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'm not even asking for charity, because I paid enough into the system in the past. But all we are, it seems, is someone who doesn't work, ergo a nuisance, a leech.

When you're ill, the physical toll of having to fight for whatever scraps one can get is bad enough. The mental one is far greater. Both hinder the chronic sick 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: Having read, "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.

    "The moral test of a society is how that society treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadows of life . . . the sick, the needy, and the handicapped."

    ---Hubert Humphrey

Wednesday, 1 April 2009

Wednesday, April 1st, 2009

Balu fluffy and gleaming in the sun

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 earlier, was hardly a major task, I woke up even stiffer than usual with 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 torso feels like it's broken in half and, it feels like my spine 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 aching, which is actually all over pain at a level that can't be ignored; distraction doesn't work and it 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 ill that even lying still takes supreme effort.

Walking to the kitchen or the loo takes supreme effort too 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 even once a week, for 15+ years, 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 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. 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.

Tuesday, 31 March 2009

Tuesday, 31 March 2009

Well, this is going to be an exciting entry: today I bathed the cat. Bear with me, because it's relevant as a comment on the state of my health and how severely everyday tasks affect me.

Anyway, it was the cat's first bath in over a year, which was a bit overdue because, even not going out, he has too much hair to do it himself and, for the first time in his life, he's properly molting, so I needed to help with the frequently falling fluff.

Yes, we already brush handfuls out everyday ... because it's frequently falling in big tufts all over the carpet, provoking much deliberate picking up and hand-brushing of the carpet. Hand-brushing, because the Hoover won't pick it up - which is more of a comment on the (lack of) quality of the carpet, than it is on the inefficiency of the Hoover, though there's probably an element of that too.

Can I manage to get on my hands and knees to hand brush a carpet? Not a hope!

In a house with all tiled floors and in a warm climate, you just bath the cat and let it go outside. It just sits in the sun and licks itself dry and any moisture it drops on the floor on the way from bathroom to exit door, is easily and simply mopped up.

It's a task I'd been putting off for ages, not wanting to cause him any more distress than he's already feeling in a strange land and, not wanting a grand "ho-ha", because it's not that easy to bathe a cat in a fully carpeted (even the bathroom) house and NOT leave one or two drops of slight dampness somewhere. Odd drops of water - even when they're appropriately inside the bath - cause great distress to my mother, who reacts, flapping about there being "water everywhere".

She also obsessively wipes and dries the bath every single time it gets wet, which I find both hilarious and the possible indication of a mental affliction, but, whilst I can ignore this behaviour, the cat wouldn't and would pick up on the tension. So to avoid any anxiety that might unnerve the poor cat, with shampoo at the ready, I grabbed the opportunity this morning while she was out for his annual bath.

He's no trouble at all: actually he's more compliant that the dog used to be and hardly objects, so it's not even a case of needing strength and agility to control him, 'coz the little bugger just stands in the bath and lets me massage the soap into his back, thoroughly enjoying the attention and purring away.

Afterwards, I wrapped him in a towel - which he lay in relaxed and prone like a baby - rubbed off the excess and then gave him some fluffing up with the hairdryer, which in the absence of sun and decent temperatures, was necessary to keep him warm while he was damp. He's happy to put up with this too and I can even roll him on his back to dry off the fur on his belly. He's no trouble at all.

Except the bending. And the doing anything really.

Yes I paced the task sensibly: I took a rest after the bathing and did the drying in several short bursts to avoid over exertion (cat puts up with that better too). When he was essentially dry, I let him finish "cooking" at Gas Mark 1 - he got into bed, so I switched on the electric blanket to keep him warm and avoid damp.

Heat helps fibromyalgia too, so I should benefit from lying on it too. And yet ...

This simple task just about "broke" my back (so you'd think from the pain), but not only that, I was actually shaking and trembling from exertion, indicating that I had pushed myself beyond my level of endurance. Now, even I'll admit that it's totally ridiculous to get to beyond my level of endurance from such simple, everyday, activities but this is not unusual. It's what happens and it's hard to see how to avoid or overcome it.

Monday, 30 March 2009

Monday, 30 March 2009

My eyes hurt and have spots in front of them making it uncomfortable to read, my hands and wrists hurt (enough to make me cry), but I have to keep doing something and distracting myself, because the pain in my hip - which is 24/7/365 anyway, but flares up in the mornings and evenings every day - is beyond unbearable today. Usually, this indicates humidity or impending rain, so you can understand why this is a constant thing in the UK. It's like having toothache permanently, it gets so bad it takes my breath away and makes me feel nauseous.

Painkillers do absolutely nothing for it and there's no comfortable position left that I can get into to alleviate it. There was one, which placed my foot on it's side, resting on my nice new, soft, comfortable mattress, but the skin on my feet has become so sensitive recently that the side of my foot is sore, red and inflamed and I'm doing my best not to irritate it any further, or I'll be unable to put any shoes on at all, nor walk even a few steps.

And if I find a comfortable position for my hip and foot, my knees hurt. They're already both still burning in pain and feel (but don't look) swollen from Friday's walk and from time to time I have to bend them (and my ankles and my hip) and then straighten them again to make them "crack" noisily, which temporarily relieves the "locking." Yet despite the burning sensation and despite the temperature reaching a relatively decent level today because of some morning sun, I've felt absolutely icy cold.

I bought some more long socks to be able to wear my boots without them rubbing painful red marks on my shins, or causing blisters so deep they take great gouges out of my heels, but that's not a permanent cure. Clearly, one can't wear ski-boots all year round and I'm finding them too heavy for anything but a short walk anyway. I also bought some Velcro (can't bend to fiddle with laces and they'd dig in anyway) Reebok trainers recently, but without support round my ankles, those are no good for walking further than a few yards either. I wore them when I went out on Friday and my ankles still feel "broken", swollen and painful.

Because the pain, particularly in my left wrist, has been unbearable since I came home Friday (I walked, but not on my hands!), I've had to try supporting it to ease the pain. Once again, the neoprene support has caused my skin to resemble that of a decomposing lizard. It isn't just dried, it hurts like really bad sunburn; feels like it's stretched too far and will rip apart. And I have a mysterious bruise on the back of my hand, which, unless I hit something in my sleep, I have no recollection of getting, except that it's just appeared above my wrist where the pain is already.

For no apparent reason too, this morning, I was up at 3 a.m. with the "irritable" out of Irritable bowel syndrome (IBS) - which I was diagnosed with as far back as 1980. Actually, I'd rather have that than be clogged up and, I always hope I'll be losing weight ... but this repeated itself when I woke up again at 8 a.m. and through most of the morning, leaving me feeling tired, weak, nauseous and with horrible cramps in my stomach. I felt too ill to do much more than lie still and really couldn't concentrate on anything other than the simplest of banal tasks.

Of course I want to feel annoyed at not getting things done, but I dare not overstep my capabilities to do them, or I slow down my recovery time from days to weeks or months. And I cannot either allow myself the "luxury" of the stress.

Is this a particularly bad day? No, not really.

Probably 1 in 10 are this bad and 6 in 7 are not far off. Nothing life-threatening, you say, but imagine feeling this bad, that often, day in, day out, for years.

Sunday, 29 March 2009

Right now I'm having to take deep breaths to cope with chest pains, which I'm sure were caused partly by stress (I don't believe they always are, exclusively), because, once again, mother has pushed me beyond the limits of endurance and I finally had to tell her that I'm trying to do something and that my door was closed for a reason. (Both true.) Yes, I shouted at her and yes, I feel entirely justified. 

And, no I will not feel guilty for upsetting "a poor little old lady." The boot, as they say, is very firmly on the other foot. Of course, publicly, she claims to be the victim and the hard of thinking, who do not even consider getting to know me or actually checking the facts, fall over themselves to believe her.

Earlier she'd already intercepted me to ask, in a tone that sounded like the sort of panic akin to the ending of the world as we know it, had I changed my clocks. So, for the umpteenth year in succession, I reminded her that computers change themselves (so does my mobile phone I use as a watch), so she had no need to tell me. Anyway, even if they hadn't, the world - probably - wouldn't have ended.

Yes, I know the incident sounds like absolutely nothing, taken out of context, but her entire tone and timing made it a clearly deliberately unwarranted (and unwanted) disturbance. Oh, mother probably believes her own hype: that only she - and certainly not I the ignorant child - could possibly know about clock changing and thus she was being helpful (in control), or feels justified in wanting to get my attention, but, considering what she's been doing to me, I feel no guilt and no compulsion to give her any and, certainly not just because she WANTS it now, paying no attention to how I might feel and what my medical needs are.

There are plenty of other reasons why I'd shut my bedroom door, but the one I feel most justified for today - apart from the probably obvious and necessary stress avoidance - is that mother was yet again using spray polish in the house. She is well aware that I've been allergic to all household sprays since, goodness knows ... before I reached puberty anyway and, polish sprays (along with hairspray that she's also been insisting on using a lot lately) are among the worst for me.

This is not something she's forgotten, because only the other day I'd reminded her, YET AGAIN, that I just can't have them in the same house as me. It's partly because of the allergy symptoms (believe me this is severe enough and the headaches totally crippling), but also because exposure to these chemicals causes flare-ups of all my ME symptoms. That's well documented and she knows, because (stupidly) I told her, because it seemed the logically correct thing to explain it.

And that was a relatively pleasant discussion, where I had explained once more - and she seemed to understand and accept - that I've always had to do all my dusting in my homes with a damp cloth and a little vinegar. (Cheap, ecological, non-harming ... surely adopting this method is good and no hardship?) She claims she remembers everything. In fact, she seems to do so - well, certainly all the things she WANTS to remember - so, what is she doing? Yes, I really do think that now she has the knowledge she is doing things to upset me deliberately.

Because I immediately become breathless and nauseous, start coughing - it provokes chest pains too - when I'm exposed to these substances, if she refuses to avoid their use, all I can do is to shut the door to keep away from them and try my best to mitigate the effects - after all, who would want to feel more ill? But not even that works, because she will use any excuse to open the door (doesn't knock, or if she does, doesn't wait for an answer) and twice more this morning, she's barged in, first wanting to know if I wanted her to clean in my room.

What makes that "inappropriate" and unnecessary is that, she has not done so before. First, because I certainly wouldn't expect her to clean my room, secondly, I need to do it my way and, when I have the energy, etc., to manage and pace my symptoms and, I need to do it myself because of the cats who are still hiding and scared of everything here. She knows all of that and that I cleaned the room not long ago (certainly not long compared to her cleaning frequency.)

Then she asked if I would do it - yes (obviously.) Now? "NO, I'm doing something", I said (pointing at the computer screen, though she could see I was anyway) and her reaction; the disappointment and frustration that flashed across her face, was like a 1000-word picture. She seemed most upset that I would not jump, disturb what I was doing to do it right now, this minute, on her schedule, to suit her wants. And she still just couldn't accept a negative answer, because 30 seconds later, she had barged in again (didn't even knock) to whine that she is only trying to help, which is when I shouted to cut off the whole pathetic insincere diatribe.

It isn't worth explaining to her, but it's obvious that, if she really was trying to help, she'd a) let me rest and / or do things undisturbed b) allow me some basic respect and privacy c) not use chemicals in the house, etc., ad nauseam. Obviously, one thing I could do (again, I think justifiably) is to put a lock on the door, but I know doing so would create a huge reaction and argument.

It's already bad enough that, as soon as I began closing the door to the room, the crazy woman started going outside the front of the house and pressing her nose up against the glass to the window of my room, trying to see in.  Yeah, really!

There are net curtains, but it is still possible to see in, so for this reason and because it dawned on me that others would be able to see my laptop, I now keep the curtains closed all the time. I often also suffer from an over-sensitivity to light; it's better than looking out at a crappy wall and it's necessary on the mornings when the sun reflects on the screen. Of course, as soon as I began keeping the curtains closed, was when she decided that she could open the door to my room whenever she wanted to. And that she does, despite more than once, I've told her that I don't care if the house is on fire (if it were, the alarm would alert me), so she has no reason whatsoever to open that door.

Of course, I can't stay in the room permanently. I have to go out to the loo and, the strength of the waft of polish is so strong the cloud hit me like a wall. I know that I'm super-sensitive, but it seemed excessive. Is that deliberate too?

Another of the things that (again, since I was a kid) have always upset me are air-freshener sprays - I also seriously disapprove of them on ecological grounds - and, yet again, this is something that has been discussed over and over again in recent months, reminding my mother that these cause me problems (allergies, headaches, etc.) Yet, I've heard the spray and smelled air freshener - she's done this early in the morning when she's thought I was asleep - that alone suggests that she knows she's doing wrong - and refuses to desist.

These are not the actions of someone trying to be "innocently" helpful.