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

Thursday, 28 August 2008

Finally a medical diagnosis

Finally, yesterday, after around 11 years of having no access to medical care and at least 35 years of worsening symptoms that have been ignored or brushed aside, I saw a doctor and to my utter surprise and enormous relief, he was perfectly happy to accept that the increased symptoms I've been experiencing for the last 13+ years are those of fibromyalgia ... and asked if I minded if he put that on my notes.

Frankly, I don't mind what he puts (well, I do, I'd rather it correctly say Myalgic encephalomyelitis (ME), but since the NHS no longer use that and uses Chronic Fatigue Syndrome (CFS) instead - impossible for me to have as I'd been ill for a decade and a half before that awful crap misnomer was invented - I therefore prefer Fibromyalgia be used as it sounds more like a 'real' illness), as long as he accepts that there's something to investigate, because, in the exceedingly long story that ensued during all this time, as I explained to him, the worst part (above the considerable physical pain I've endured) is having been doubted and treated as a liar by my own family. Better yet is that he gave me a medical certificate with the word fibromyalgia printed on it that I was able to wave under my mother's nose. She sniffed at the paper with an air of suspicion then denied ever doubting me - like once before, when she said, "Oh I believe you, but I want backup."

I'm sure you get the irony / contradiction. She still doesn't, but lets see if that's enough to satisfy her and if she's capable of treating me any better now.

[No, of course, it wasn't. She later declared that "it's only on paper" and she won't believe it until the doctor tells her himself. This would be funny if it wasn't true. I'm 51. He won't discuss my health with her. Obviously? No again. She refused, utterly, to believe that the concept of patient confidentiality exists. When I assured her, once again, that it does, she declared it was "wrong". The diagnoses of both Fibromyalgia and Chronic Fatigue Syndrome were later confirmed to me - in writing - by my Rheumatologist. This letter has since been accepted as evidence by various bodies. Of course, this was still not good enough for my mother.]

Anyway, the doctor wanted to get some basic information about me on that first visit yesterday - none of my notes have materialized yet (if they ever do) - and he's sending me for some blood tests; cholesterol, sugar, etc., but his intention is that we take a holistic approach (how I LOVE to hear that word from a mainstream medic), work out a management strategy between us and then tick off the issues one by one, as I'd made it clear that I have a list. (The positivity was pretty short-lived as not much has been resolved and nothing successfully treated since.)

Nothing is simple, of course, because I have to go to hospital for the tests (on Monday), on an empty stomach. It will take two buses and a taxi, cost around £20.00 return (for the approx. 5 mile journey) yet, because of the bus times, the earliest I can be there is 11.30 in the morning. A bit late to be still starving as the nice lady at the hospital, who made the appointment, kindly pointed out!

The way she asked "Fasting or non-fasting?" sounded funny too, like "smoking or non-smoking" used to sound, when you had a choice on flights! :)

Still, it should represent a step forward, provided I don't faint on the way.

But getting any diagnosis after this long is a bloody miracle!

30 Things About My Invisible Illness You May Not Know

Friday, 22 August 2008

Put your feet up and walk

Taraxacum officinale

Conundrums and contradictions; puzzles and paradoxes, I haz dem ...

To say that the English climate doesn't agree with me is the understatement of the century and I don't just mean that I'm a wimp, start to feel cold at anything under 25C and just don't like it, although I'll admit that all of those are true as well.

No, I am genuinely in serious pain every time it's humid. The obvious difference is that, whereas that was one day in a 100 in Tenerife, here in the UK it has been the other 99 days too. On the roughly 99 out of every 100 days when it's too wet, too cold or threatening to be either or both, I'm in too much pain to move.

And we're not just talking about some minor ache, it's creaking joint and searing muscle pain, alternately both dull and sharp, in my shoulders, arms, wrists, hands, back, neck, hips, legs, knees, ankles, feet ... often severe enough to make me cry, nauseous and prevent me from sleeping.

This is the same pain I've been suffering (and had previously been managing with combination of benign climate, a special mattress, a heat pad and careful balancing of effort versus rest; none of which tools I have available now) since 1995, but as I suspected and said repeatedly it would, has been severely increased in frequency and severity in the British climate. And this is why I've spent the last 7 years begging my mother to make some sort of compromise to avoid it.

Even if she doesn't give a shit about me and the amount of pain I am in, logic ought to tell her that I cannot look after her if I'm reduced to being an invalid. 

Of course, she doesn't do logic.

Anyway, you get some idea why it's so difficult to cope, with the pain and with her. And this is supposed to be summer. I will not be able to cope with winter.  

Of course I know that if I don't move enough, I'll just stiffen up like some creaky old relic (and do), but it would make matters much worse if I was to get caught in rain, so balancing it to move far enough, often enough to keep myself mobile, is proving beyond impossible.

Whenever I can on a day when it's dry enough, I get out and walk (can't afford anything else) the 2-3 miles to the village and back, despite the fact that it half kills me to do it and takes another few days before I can move again. But I do it, because already, when too many wet days passed and I wasn't able to go out my feet and ankles became so swollen that I could hardly get shoes on - never happened before - which was painful and quite scary.

It took a couple of days with my feet in the air to get the swelling down and, ironically, the only way I can keep it under control is by walking more and, when I'm at home keeping my feet up. The other contradictory thing I was recommended to reduce water retention, is to drink more water.

Now I can walk short distances, or I can lie down with my feet up, but I dare not sit in a chair for more than a few minutes, because my feet go to sleep and / or swell up like balloons. I already couldn't stand for long: that's now reduced to not at all, unless I keep moving.

It's difficult to manage, but how I managed it before was considerably better than taking some prescription drug with "... a monstrous list of side effects that includes diarrhoea, constipation, drowsiness, sleeplessness, hunger pangs, loss of appetite, euphoria, depression...", as The Grumpy Goat so aptly describes it

More contradictions: 

A dry skin problem on my forearms, wrists and hands that I only used to suffer in winter in Tenerife, has flared up painfully already. At the other extreme, oily skin and a plague of "teenage spots" have returned to my back and face and, one or other has me constantly itching and scratching like a flea-ridden moggie.

Oh, why the pic of the dandelions? Dandelion root, is a powerful and safe diuretic for reducing fluid retention, dandelion root promotes liver detoxification and dandelion leaves support kidney function. May have to try that. 

Wednesday, 20 August 2008

The Great Toilet Paper Debate

This is the correct way! Toilet roll debate finally settled. A patent dating back to 15 September 1891 helpfully included a detailed diagram which was explicit in showing the paper over the roll.

And, just to add even more surrealism to an already totally bizarre situation, there's the matter of the toilet roll. What the image above shows is what I had always understood, that the "right" way to hang a toilet roll is with the flappy bit over the front. This is how chamber maids - not that I've even done the job - are taught to do it in hotels, with the little pointy bit to make it look pretty. 

Truthfully, I don't think it's THAT big an issue, although I would counter that if it's under, the nice clean paper can make contact with a potentially not very clean wall, so I don't feel that is comfortably hygienic, nevertheless ...

Oh no, that isn't right! If I hang a toilet roll "the right way," the next time I go to the loo, I'll find it turned around with the loose bit hanging down the back and I get yet another lecture on why I am wrong and why wrong is right. So one day, just to see what she'd do, I made a point of constantly correcting it and, every time I put it "right", she put it back "wrong" again. Every single time throughout the day ... which has to be the most pathetically petty deliberate belligerently pedantic, obsessive-compulsive, control-freaky contrariness evar

Walls Come Tumbling Down

Makeshift fix to prevent loose tiles falling on me in the bath

The tiles were finally fixed last week, but what a bloody fiasco it took to get it done. Not to mention the fact that I came from that super-mega plumbing hell in Tenerife to ... Well, more of the same crap, basically.

This is something I really wasn't expecting. I had no clue or any reason not to believe my friend Andy's consolatory statement, when I'd had to come back to the UK, when she said, at least I would have the chance "to live in a house where everything works" for a while. How wrong we both were to assume that!

Exhibit A: the bathroom, as you see, is a "nice" 1970s style "avocado green" and, even on that, mother had to call me a liar publicly - I was explaining the general nature of the job to the tiler on the phone - when she insisted (excessively defensively) the house was built in 1980!

The whole thing is a convoluted and surrealistic tale of denial and fantasy, but if one wanted to be really pedantic, one could argue that there's only a day (or mere fleeting moment) between December 31st, 1979 and January 1st, 1980, but when I casually and lightly said, "So call me a liar for a year", I got a shouted diatribe of arrogant assertion back that it was 10 years.

Anyway, when I'd arrived in June, I'd noticed immediately that half a dozen tiles (two columns of 3) had blown and were standing proud from the wall.

When a friend came to visit he also immediately noticed it and asked my mother when she was going to fix it. She was kinda dismissive about it with him, but when I'd mentioned it, she'd displayed forceful denial: adamant that there was nothing wrong and that she couldn't do anything about it, in that (illogical and totally contradictory order), followed by the now classic ...

She hadn't seen this before, until I got here.

Oh, like I arrived, waved my evil magic wand and the tiles came loose?

That could technically be true. What she fails to grasp is that by insisting that she had not seen the problem, she pretty much PROVES she hasn't had a bath or shower for however long it is that those tiles were unhinged. And, if you need a clue, they certainly didn't become detached overnight!

Well, clearly, the tiles are not the only things unhinged in this house and, I gladly include myself in that category after all the many frustrations.

Meanwhile, the tiles urgently needed fixing before they fell and broke the plastic bath or smashed (not a good idea, since they're a size that can't be replaced now). The alternative, or consequence of ignoring the problem, could have been to have had to re-tile the entire bathroom. She should be thanking me for avoiding this, but no, as usual, she didn't want me touching them.

Despite her protestations, I was going to take down the loose tiles for safety and for the bloody obvious reason that I quite like to get clean once in a while, so I asked for some old towels or blankets to put in the bath to protect it and the tiles from damage. To ensure that I could proceed no further with that idea, mother told me, curtly, that she had nothing at all suitable. Full stop.

She also proclaimed that she didn't want me to remove the loose tiles, because, she said "it wouldn't look nice." Hardly the issue, I think!

Going to hospital with a broken tile sticking out of my bleeding foot wouldn't look very nice either! I was trying to get my mother to see that it was urgent, but the prospect of such danger just did not provoke any reaction whatsoever. No, simply because, to her, the solution is to not have showers.

Unfortunately, I tend to stink if I don't. Maybe it's just me, eh?

Fortunately, the tiles stayed up by a wish and prayer until my boxes and a thick double duvet arrived from Tenerife. By then one of the tiles was almost flapping in the breeze, so one morning when mother was out, I used the duvet to line the bath and set to "work." Well, all I did was place my finger lightly on the loosest tile and all six fell straight into my safety-net. Another three were in imminent danger, so I took those down too, then I fixed the bin bag over the space to keep the water out until it was fixed properly.

Which it was, finally, last week, but only because I made several phone calls to get it arranged, because she still wasn't about to do anything about it. 

And, believe it or not, this is not even half the story yet!

To a normal, sane person, it wouldn't be a surprise that some maintenance is required in a house almost 30 years old, alright 28, but we're not dealing with normal, sane reasonable folk, we're talking about my mother.

Wherever I look, I'm finding things 30 years old (and often much older), that haven't been maintained or are simply at the end of their useful lives.

And having wilfully ignored them for so long, the situation has escalated, but reality not even being a casual visitor to this house, mother has convinced herself that the considerable inconveniences to put up with it all are how it always was and is what's normal. It never occurred to me that "willfully not seeing" was what she'd trained herself to do for this reason. All it does is depreciate the value.

It does explain why she could come to the house I was renting in Tenerife once a year and, seemingly, not even notice the absolute shit hole I had to put up with.

Walls Come Tumbling Down, by Style Council. "You don't have to take this crap ..."