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

Sunday, 28 February 2010

A load of old rubbish

Because I've been replacing stuff and buying new items since I got to the UK - some are to try to make life a bit easier dealing with the fibro, etc., others are because I had almost no clothes after 16 years, the last decade of which I had very little money and, as I'd lost all my good clothes to the various floods and damp in the ramshackle house I was renting - I'm now starting to clear out my old junk. Starting: I did a bit - enough to make a mess - last Saturday, but I just cant stand long enough. Then I twisted my ankle and could barely hobble for days ... it's gonna take ages.

Anyway, I put charity shop stuff in a clear (recycling) bag, because I need to be able to see what I've put where, since this is going to take so long and because I have fibromyalgia. You know, fibro fog. I therefore need to make this as easy for myself as I can. Mother will get this to sort into stuff to sell in the charity shop (where she works) and what's not good enough to go to the rag and bone man. It doesn't have to leave the house, or even my room, in that bag. No, that was wrong: she wanted it put in a black sack now. I refused. I explained, but her blank expression was as if she couldn't hear, as it wasn't what she wanted. Never mind that this was for my needs. Those never count for anything.

Then I had put proper rubbish in the bin, as you do. And this included snotty tissues and used sanitary items. She began to rifle through this for paper that could go in the recycling (there was one envelope - didn't seem worth it), because she says she's "trying to cut down the amount of rubbish we throw out." She claims we're only allowed to throw out one black sack of rubbish and says that the council are about to change to fortnightly collections, making it worse.

She was getting really worked up and sounded panicky about it. From the tone, however, I was sure she'd just made that up. (There may be other reasons why she wants to rifle through my trash: she's been doing it ever since I got here.) Anyway, every week she seems to spend more and more time faffing about rubbish. Her worry defies logic and has become totally ridiculous.

Of course, I could leave her to think whatever she likes, but the point is that she gives me earache with loads of totally invented rules about what I can and can't throw out and, when and where, that even just the stress of listening to it is beginning to impact. Naturally, I'm not about to start doing things that are not needed, but if I don't, I get another load of earache, so unless I want these arguments to continue, I have to do something to put an end to them.

Worries over the quantity of rubbish are not new and I've tried to tell her time and time again that compared to average consumers, we buy and throw out practically nothing in this house. Much of the food we buy is fresh, we avoid packaging and bags wherever possible and, there are only two of us. I'd told her to think it through: what do people with 4, or 6 or more in the family, for instance, do? They are bound to make much more rubbish than us. Bleedin' obvious, init? But no, it doesn't matter how many times I say this, she chooses to ignore what I say.

So I thought I'd ring the council for a clarification on these points. Then I thought, no I won't, I'll email them, then I'll have a reply in writing that I can print off and give to her. Of course, the council confirm that they have no plans at all to swap to fortnightly collections and, they say that we can put out as many black sacks as we like. So I printed both the email and reply and handed it to her!

"Well, now that I know, officially," she replies, hoity-toity.

The email said exactly what I'd already said to her over and over. Is she never going to believe a word I say? (Rhetorical question!) She says you used to be only able to put out one bag: that she'd had a letter about it "years ago". I won't waste my time asking the council, I'm sure that's not true. Then she thanked me for doing it, because, she then says, "it was two or three of the women on the bus" who were spreading the false information. Wasn't her, of course!

Wednesday, 24 February 2010


Day 1:
Saturday. Emptied contents of 6 drawers into corresponding piles on the bed, sorted the piles of clean laundry (mostly onto the same piles), sorted loose small stuff into boxes, baskets & bin. Fell asleep, in the midst of the piles, totally knackered from overexertion.

Day 2: Sunday. Felt dizzy as soon as I got up to go anywhere, even the bathroom. Giving the chores a miss today. Still exhausted and needed siesta.

Day 3: Monday. Fully intended to take the morning easy and make some careful, slow progress in the afternoon, but couldn't keep awake long enough.

Day 4: Tuesday. Had great intentions for today, then I tripped over a chair, stubbed my toes and twisted my ankle. Can't walk, can't stand, can't declutter.

Day 5: Wednesday. Terrible night in pain with the poorly foot and ankle. Still can't walk or stand, so there goes yet another day with nothing done.

And yes, me and the cats are still curling up in spaces where we can between the piles! I actually intended to start this task back in October, but, what with one thing after another; medical appointments, relapses, crashes, other sickness, it took until last weekend to find a day where I was actually up to doing something about it. Reckon this decluttering lark is going to take longer than I hoped!

Sunday, 14 February 2010

Fighting to stay awake

This morning I just could not move to get out of bed. Despite sleeping reasonably well - at least several hours, during which I wasn't half awake, vividly dreaming or otherwise semi-conscious, as I usually am - yet, I feel utterly and physically exhausted, limp and heavy, where every movement or even thought requires supreme effort.

It wasn't much better yesterday, when almost as soon as I got up, I was yawning and finding it hard to stay awake. On Friday, I just couldn't keep awake.

As usual on the day after an outing, I developed all the classic feverish symptoms of Post-Exertional Malaise among them; sore throat and swollen glands, headache, aches, weakness, trembling ... By mid-afternoon, I could no longer keep my eyes open and had a couple of hours' siesta, got up, made a quick dinner and was back to sleep again within a couple of hours.

On Thursday, I'd gone out to my pain group meeting. Before I got there, I'd walked into town to collect a repeat prescription and pick up a few items of shopping from just a handful of stores (I wanted to go the the bank too, but I just couldn't have managed any more that day), then spent a very pleasant enough hour or so, listening to an interesting talk and looking at photos from the speaker's trip to Egypt. Went out at about 11.30 and was back around 3 p.m.

The group sometimes gets speakers to talk about health matters, but this was a pleasant diversion instead. It made me think I could do the same with my photos from Tenerife and, perhaps show people a side of the island they probably don't even know exists - except I don't have the right equipment, couldn't justify the cost of a projector and wouldn't have transport or energy.

When I got home on Thursday, even though I'd been sitting for that hour or so and been given a lift home, I was still sweating profusely from the now inevitable hot flushes. I'm constantly either too cold, or too hot and never comfortable - if I move, I overheat like an old boiler whose thermostat is f*cked. The outside temperature was hovering around freezing, but I had my coat over my arm, because I couldn't stand to wear it and was sweating b*ollocks, dripping wet, hair limp and sticking to my head, while walking through snow flurries! And I'm on drugs twice a day to *control* this already. Looks like I need to up the dose.

My face gets so red and I now have so many broken veins on my skin from the overheating that I've had to buy Vitamin K cream to try to repair them and green make-up to hide them. Yet indoors, I'll feel icy and wrap myself in blankets. There's no sense or logic to this failed thermoregulation. It just is.

At the meeting I succumbed to the temptation of one solitary fancy cake - and quickly paid for my pleasure as my stomach blew up into a solid and bloated.

Just for those few hours, I wore an acrylic jumper and where it had a seam on the shoulder, it rubbed and irritated a spot on my skin leaving it raw and in the sort of pain you might expect from bad sunburn or blister. Once clothes rub spots like this, they remain sensitive forever, so I'll have to get rid of the jumper now.

Thursday evening, I was struggling to stay awake even before dinner, but whilst I successfully fought it then, I succumbed shortly afterwards, only to wake up again at midnight and then spend most of the night awake because of the tremendous pain in my hips, legs and feet. My thigh muscles had gone into spasm, contracting and refusing to work in the cold - despite me overheating - and the resultant burning pain right down to the bone was excruciating.

Pain was also throbbing and shooting through my calf muscles and the pain down the front of my shins and in my ankles that always follows after being vertical or seated, even for a moment (caused by the pooling of blood, because of bad circulation due to orthostatic intolerance) was still dreadful, even though I'd sought to mitigate it by wearing compression flight socks.

From both the exertion and cold, the joints in my neck, shoulders, elbows, wrists, hands, hips, knees, ankles and feet are all once more clicking painfully.

There is no position in which I can get comfortable, even lying down. It is often too painful to do anything. I couldn't even concentrate on banal TV, was in tears and at the point of screaming. My neck has "gone" again, so every movement is painful and I can barely support my head, needing to keep it upright with a inflatable neck cushion and propped against pillows. My arms ache, my wrists and hands have been throbbing with pain, my shoulders ache and my back feels like it's broken. And that's now, 3 days after the exertion. For the last 3 days I've felt so ill I couldn't get the physical or mental faculties together to write this.

The pain in my legs and feet today is still so bad that I've had to intermittently use childbirth-like breathing exercises to try to withstand and distract myself from it - and it ain't working. And this is how it goes every time I have to go out to any appointment. It will take another couple of days to begin to feel anything like human - although it ain't ever that great - then I'll have to start taking it easy in preparation for the next appointment, or suffer worse consequences.

The only outings I get now are for medical appointments or help groups (and I don't always manage to get to the latter if they're too close to other events). This isn't enough social interaction, yet is too much for me: the price, in terms of pain, exhaustion and feeling like sh*t for days on end that I have to pay to attend these appointments far outweighs any benefits I could get from them.

There's a meeting of my fibromyalgia group tomorrow and it would be a chance to meet with other humans and benefit from the discussion, but I'm just not up to travelling, sitting or even thinking. About all I can manage to do these days is to get up to go to the loo and to get myself and the cats something easy and quick to eat - as long as it doesn't require peeling or standing - and, just from those *exertions*, I'm ready to collapse with exhaustion again each time. But if I don't get up and get it myself, nobody else will, no matter how ill I am!

I know exactly why some prefer to end it all than suffer this kind of non-life.

Wednesday, 10 February 2010

Wednesday, February 10th, 2010

For the last couple of days I've had a new pain (yeah, like I don't have enough already), this time, under my left boob: the larger, more droopy, more fibrocystic one of the two. It's a duller pain than "stitch" in your side, but this morning it was winding me and taking my breath away. On the outside, it feels like a nasty bruise to a rib. Now it's spread around to my back and is a nausea-inducing pain on the back of my ribcage, below my shoulder blade, that feels as if I've been punched there. (Costochondritis?)

My lower back and neck both ache so much that I'm having to prop myself up with a mountain of pillows, supports, inflatable neck cushion, etc. 

Yesterday afternoon, my thigh muscles tightened into knots and ceased up again. My legs were reluctant to move, my knees became painful and sore and it felt as though my femurs had been replaced with rods of burning dry ice. This is nothing at all unusual: it comes and goes, but is a lot more frequent and painful in the UK. Usually it isn't a painful problem until I go outside in the cold though.

This is all on top of the near unbearable, constant pain in my hip.

Another problem I've had for a long time, has been getting worse recently too. Back when I was a kid, but it got much worse when I lived in Birmingham in the 80's and early 90's, was a pain in the palm of my left hand when it was cold that I can only describe as feeling like it's having a crucifixion nail driven through it. Never once had that problem in Tenerife. Ever since I got back to the UK, this pain has constantly increased, along with the development of another new pain in my left wrist, arm and shoulder that I can only assume is carpel tunnel syndrome (it puzzles me why the left is more badly affected, when I am right handed, but I've given up trying to find logic in these ills.) Over the last few weeks, this has suddenly increased even more - it was already limiting my typing to 15 -30 minutes a day - and over the last few days, even when I'm not cold and not doing anything with that hand, the pain shoots and throbs right through it.

Now my right hand is starting to "complain" about "excessive" (any) mouse use. In the last 24 hours, I've been making a concerted effort to avoid deliberately making my joints click when they feel tight, achy and as if swollen, since reading that it could make matters worse. I did it, almost involuntarily, because, although painful at the time, it did bring some relief. Instead, I try gently stretching the affected limb, but it has had the effect of making me feel more stiff, achy and decrepit. The only other help would be to take more warm showers (If I could).

Tuesday, 9 February 2010

Tuesday, February 9th, 2010

The last few days, after going out (to my assessment appointment at the Pain Unit in Poole) on Friday, I've been suffering the usual level of post-exertional maliase, sore throat, swollen glands, feverishness, aches and pains.

On top of that, now the temperature has dropped again, the pain in my hip has become excruciating to the point that I just cannot get into any position in which it is comfortable for more than a couple of minutes or that allows me to properly think and function.

The exercises that the physiotherapist gave me to do last week (my appointment was on Wednesday), specifically for this hip problem, have served only to increase the pain 10 fold too. The sideways movement more than the other two. I shall persevere as it may help with diagnosis, but as we discussed at the appointment, it seems to indicate that the problem cannot be sciatica and is thus yet another part of the fibromyalgia. That also means it isn't treatable.

The only relief, as I've constantly maintained, would be to get back to a warmer, drier climate. This pain, which I have 24/7/365 here, I only suffered badly once every few months or so when there was really wet weather in Tenerife. Now it's permanent and most of the time it's unbearable. Now the rest of my joints - all of them, ankles, knees, shoulders, elbows, wrists and in my hands and feet - are painfully popping, clicking and banging every time I move.

Medical advice is that one should not deliberately make joints click, because the more you pop your joints the more you are introducing laxity and potential for injury, so it can make the situation worse, yet, I cannot keep them still, because it's an almost involuntary action to try to alliviate the pain and stiffening when they feel as though they are ceasing and swelling up. It's another no-win. It's another symptom I simply had never had in Tenerife.

How I'm affected undoubtedly has to do with humidity and barometric pressure and has absolutely nothing to do with how cold I feel - often I can be sweating from head to foot with hot flushes - and putting on extra clothing or blankets only adds to the pain and does not help, but if the temperature of my environment drops below 20 degrees centigrade, then my pain elevates in the same way as it would if someone were to beat me from head to foot with a baseball bat.

Add to that today that I'm yawning, can hardly keep awake and can hardly sit up, because I am so exhausted - yet, I've had several nights of fairly decent, uninterrupted sleep - something almost unheard of. It makes no sense.

Sunday, 7 February 2010

To think for yourself you must question authority

As a child, I remember always being encouraged - strongly instructed, more like ordered - to think for myself and, it was always the case that as long as what I thought agreed with what my parents thought, I'd be right. On the other hand, if I actually did think for myself and thus develop my own ideas and opinions, I would, of course, be wrong and it would be made absolutely clear that was not allowed and would be met with varying degrees of wrath. They would not tolerate their authority being questioned. Grey areas, according to them, did not exist. 

Their idea of what was right and wrong was, of course, always what they thought was right and if anyone else differed from that they were wrong. Disagree at your peril. They really could not allow for differences of opinion and, indeed, it seemed to me, couldn't actually differentiate opinion from fact.

The noise of their opinions never did entirely drown out my own inner voice, but had the effect of making me constantly doubt myself with profound effect

As I was never any good at pretending to agree just for a quiet life either, I would come in for constant criticism, censure and even unjust punishment.

Even as a child, one instinctively knows this feels horrible and wrong, but it can [did] take decades to realise and accept that this was actually abuse.
"To think for yourself you must question authority and learn how to put yourself in a state of vulnerable open-mindedness, chaotic, confused vulnerability to inform yourself." -- TIMOTHY LEARY

Friday, 5 February 2010


Today's gem (there's one similar every day.) Before I went out (a medical appointment), I showered, naturally. While I was out, as usual, I suffered dreadful hot flushes, where sweat was running down my face and plastering my hair to my head and I came home with my clothes sopping wet from where I'd been sweating from head to foot. I felt incredibly uncomfortable and sticky, as well as the fact that I was exhausted and aching from the whole day's events. I changed as soon as I got home and after dinner, had another shower, because I needed it.

I'd finished and come out of the bathroom when mother went to the kitchen for something, from where I heard her "stage whisper", very clearly in a somewhat gruff, huffy tone that inferred some sort of problem - "in the shower again".

So I called her on it: told her I'd heard the stage whisper and informed her - not that I need to justify my needs - that I needed to shower because a) warm water is about the only thing that helps my aches and pains (this, I've needed to reiterate 1001 times already) and b) I'd had hot flushes and came home sticky.

Then I told her if she has anything else to say, to say it to my face.

Believe me, I have good hearing and I know what gruff, low, snarky tone of voice I heard, but she tried to spin it around, claiming that she had merely "wondered" (out loud) what the noise (of the shower) was. Bullshit.

OK, I'll ignore the wondering out loud part, because we all do that. Actually, no we don't all do it in that manner. And most people, even when they do try to spin lies, try to be more plausible and less blatantly deluded. This is cruel, unreasonable, deliberate and so unnecessary and makes daily life so unpleasant.