CHAOSTOCOSMOS

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 bearly hobble for days ... it's gonna take ages.

Anyway, I put charity shop stuff in a clear (recycling) bag, because I want to separate it, but 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 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 expression was that couldn't hear what was not 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 wanted 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, 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 spends 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 arguements 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 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.

Yeah, the email said exactly what I'd already said to her over and over. Beat. Head. Against. Wall. 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, but I feel 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

Decluttering

image 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. Really, I had great intentions for today, then I went and tripped over a chair, stubbed and parted 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 where I'm going to get absolutely nothing done.

And yes, me and the cats are still curling up in spaces where we can between the piles!

Oh, I should mention that 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 a wee bit longer than I hoped! Sarcastic

Sunday, 14 February 2010

Fighting to stay awake

Ram statues at Karnak Could do with someone to stand under my chin to keep my head up, just like these rams at Karnak!

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 often am - yet, I feel utterly and physically exhausted, limp and heavy, where every movement or even thought requires supreme effort.

Things weren'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. Basically, if I move, I overheat like an old boiler whose thermostat is fucked. 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 bollocks (OK, I would have if I had any) 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, it will be 20 degrees centigrade, but I'll feel icy and wrap myself in blankets.

There's no sense trying to work out any 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, bloated and uncomfortable 9-month sized bump.

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 if you'd had your skin stripped off. 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, I successfully fought it then, but 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.

And from both the exertion and the cold, the joints in my neck, shoulders, elbows, wrists, hands, hips, knees, ankles and feet are all once more popping and 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.

On top of that, my neck has "gone" again, such that every movement is painful and I can bearly support my head, needing to keep it upright with a U-shaped 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 shit 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 I really like going to those, because I get a chance to see new friends and acquaintances and always benefit from the discussions in the meetings themselves, but I'm just not sure I'm 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 - three times a day and, just from those *exertions*, I'm ready to collapse with exhaustion again each time.

And 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.

Saturday, 13 February 2010

The case against coffee

image "This study looked at how drinking a cup of caffeinated espresso affected arterial blood pressure and blood flow up to an hour afterwards. Although caffeinated espresso did appear to alter measurements of these compared to decaffeinated espresso ..."

Although the NHS don't see anything conclusive in the study (nor do I, as it was so small and I would have ignored it completely, since the story also appeared in the Daily Mail), but I do wonder if the changes to blood flow in persons whose blood flow is already suspect - through orthostatic intolerance, for instance - provides yet another reason why we should avoid caffeine.

Previously, I've not worried about coffee's effects on blood pressure, because mine is always rather low, but any adverse effect on blood flow is bound to make OI symptoms worse.

With fibromyalgia, it's already recommended that we avoid coffee and caffeinated teas, which I do mostly, by drinking water or herbal, green or redbush tea during the day, but I really crave my first coffee every morning. It's the only one I have now, because I'd been having some pretty horrible symptoms of intolerance lately, but I'm not ready to give it up completely.

Coffee is pretty much my last remaining pleasure and it's been my salvation for dealing with nicotine withdrawal symptoms over the last couple of years or so. It's worked for me and there were probably worse things I could have leaned on, but it was probably not a good idea: "Nicotine suppresses the effect of caffeine, cutting some of its stimulating properties in half or even a little more. Thus, the impact of caffeine increases when you quit smoking cigarettes."

Which might explain the increase in the jitters and other symptoms of intolerance and I suppose there's a chance that these will regulate themselves to be less of a problem as time goes on.

And, of course, I developed a taste for good coffee from 16 years in Spain, which means that the decaffeinated dishwater crap - yes, I tried it - just doesn't do it for me.

As I see it, I merely have yet another choice between two different types of misery and certainly no option that is really acceptable. Giving up coffee is something one could, of course, manage to put up with, if it weren't for all the other things I've already given up - like life!

Coffee and blood flow

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 tit: 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.

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

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 lived in the UK before, which started when I was a kid, but 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 the crucifiction nail driven through it. Never once had that problem in Tenerife, mind you.

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" (with stiffness and aches) about excess 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 all the more stiff, achy and decrepid. The only other help will be to take more warm showers.

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, is to get back to a warmer, drier climate. This pain, which I have 24/7/365 here, I only felt badly once every few months or so when there was really bad weather in Tenerife, otherwise it simply did not bother me at all. Now I'm permanently stuck with it and most of the time it's unbearable.

Now the rest of my joints - simply all of them, from knees, shoulders, elbows, ankles, wrists and every single one in my hands and feet - have come out in sympathy again and are painfully popping, clicking and banging away every time I move, stretch, etc.

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.

This is not a joint problem due to lack of lubrication, so drugs, oils and supplements are not going to be much, if any, help. It requires exercise to strenghten them. And exercise is good for fibromyalgia, but it must be measured and balanced very, very carefully indeed so as not to cause further exhaustion or permanent damage with ME.

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

How I stopped biting my nails

image "Still amazed it was that easy."

How I did it: I have a terrible admission to make, I probably started biting my nails when my first teeth came through and, give or take one or two occasions when I was able to stop temporarily - events which took time, difficulty, willpower and a lot of trickery such as false nails, nasty tasting fluids, etc. - I continued to gnaw away at my nails nervously, well into my 50's.

Yes, I know perfectly well how awful bitten nails on an adult looks!

Then one day, whilst perusing Amazon.co.uk I spied a 79 pence MP3 entitled, "Stop Biting Your Skin And Nails Self Hypnosis" by Erick Brown Hypnotherapist

I'm a dreadful cynic: I don't even believe in hypnosis, but what the heck, I can afford to "waste" 79 pence and the 42 minutes to listen to it. So I did.

Hummm, yes, well, that's me educated.

I also frequently have trouble with insomnia and falling asleep, but I've yet to hear all the way through those 42 minutes, because this puts me to sleep long before that.

And, after two plays, despite mostly not hearing it (while conscious), I didn't bite my nails any more, I don't even want to bite my nails, I'm just not even tempted to bite my nails: it's like I never did. I don't even need to be using any willpower to remain on target.

Don't ask me how this worked and don't ask me to believe it really did, but it just is. :)

Could be worth 79 pence (about a dollar and a quarter) to you too.


It took me 2 days.

It made me

Friday, 5 February 2010

Mothereeze

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 it.

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 so unnecessary and makes daily life so unpleasant.

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