CHAOSTOCOSMOS

Friday, 29 January 2010

ME confessions: "I took on a mango and lost"

image

Yes, really, honestly. The same mango that my cat was resting her foot on while she cleaned her underparts the other day as it was sat on the kitchen work surface ripening in the sun, so more than ever, it needed peeling. Big Grin

And that's all I did: peel it and slice it so I could have part of it in my fruit salad for lunch.

But simply doing so hurt like hell. It and took all my strength and the knife handle dug into my fingers marking a groove and turning them red and inflamed ... the sort of injury you'd expect from a whole day of doing an unaccustomed task.

It seriously hurt my wrists and then as I had to push harder to compensate for the loss of strength in my arms, both my shoulders ceased up and pain shot up my neck. A couple of hours later, the severe pain was back in my neck and had travelled up my head to become a headache.

Then it travelled right back down again. It feels as if I've been jarred in a head-on collision: my neck, shoulders, upper arms, wrists, back, hips, legs, knees and even my feet are all screaming and burning in pain. Every joint feels like it's tightening and swelling and every movement of every joint causes a nasty, loud clicking and popping noise that is definitely as painful as it sounds.

And it's not just the pain. Along with it comes overwhelming and breathtaking nausea that comes in waves and an unidentified feverishness as though I'm coming down with flu. There is only one thing one can do when one feels like that: lie as flat and still as possible until the worst passes.

Sometimes that takes hours, sometimes days. It never completely goes.

My muscles are still burning several hours later, except across my shoulder blades, which feel like they've been beaten with a baseball bat and my arms, which feel like they've had lead weights attached and had all their strength removed. From many years' experience, I know these are the signs that mean a bad night's sleep, exhaustion tomorrow and even worse pain than today.

The only way I can mitigate the chance of this getting constantly worse is to avoid doing things that can provoke such a reaction. But how the hell do you avoid doing things that might provoke such a reaction when something as simple as peeling a fruit can cause such calamity?

Those of you who experience these types of symptoms already, will know exactly what I mean. Those who don't, really can't imagine what it's like to live with this illness - which is why I'm trying to describe what it feels like - and have such simple everyday tasks become so difficult.

The Science Behind Exercise Intolerance and Chronic Fatigue Syndrome

Thursday, 21 January 2010

Too much sex, not excessive computer use, behind wrist pain

image Oh really? Years ago, I was told that if sex was a pain in the arse, then you were doing it wrong. Guys, if it's a pain in the wrist, then I'd say you're doing it with the wrong person - get someone else to join in now and again! :)

But enough humour. Somehow, I reckon this must be something less than a scientific study - apparently, it was reported in that well known daily make-believe comic, The Sun, but lets blow the silly theory out of the water.

If too much sex is the cause, then how come even though I haven't partaken in the "sport" for well over a decade, I only began to develop wrist pain around 18 months ago, once I'd moved to the cold and damp UK and acquired a laptop?

Don't get me wrong, I'm not knocking the laptop. There's no way I could sit in a chair, at a desk any more, so having this wonderfully portable toy that comes to bed with me, serves as my diary, alarm, phone (via Skype), computer, TV, DVD player, stereo and more is my entire lifeline.

Nevertheless, me thinks that computer use, especially in somewhat less than ergonomically ideal positions, has a lot more to do with my wrist pain problem than any other cause.

imageFinding relief for it (I mean the wrist pain, not sexual frustration) though, well there's the real issue.

At first I'd tried Neoprene wrist supports, but owing to allergies and other skin sensitivities, the skin on my arms erupted into a a scaly, cracked and painful mess (more lizard than eczema) and I had to stop using them.

Then I bought a couple of these elastic wrist supports, which don't offer quite as much support, but do help a lot (as much through warming, as compression.)

At least you can still do things while wearing the elastic supports. The Neoprene was also far too constricting. The elastic support on my worst wrist, I now wear all the time, awake or asleep.

Typing has still been an enormous issue though. Quick bursts of 140 characters at a time on Twitter have mostly been my limit. Any more than that has caused nauseating pain in my hands and wrists and, also contributed to the constant pain in my upper arms, shoulders and neck.

Trying to find solutions: I've failed miserably to get along with voice recognition software that might have allowed me to dictate instead; I've yet to see how any quantity of handwriting could be input with a Graphics Tablet and although I have one of these folding tables, it simply hasn't been possible to get it to an angle that did not still cause wrist, shoulder and/or related strain.

My latest acquisition, after seeing this idea for reclined computing, is this Folding Laptop Stand.

Upon consideration, I didn't think I'd be comfortable in quite such a reclined position and didn't think the Laptop Laidback was the tool for me, because it doesn't have anywhere for a mouse to live and, try as I might, I just cannot seem to learn how to work a damned touch pad!

So far, having the Folding Laptop Stand on the bed and straight in front of me, allows me to recline enough to keep my back and neck supported. With the keyboard slightly inclined, that takes some strain off my wrists by being a more natural position. The screen is at the right height and angle and I'm not twisting or reaching in a manner that pulls either one or both shoulders.

Additionally, I'm able to keep my legs in a much more comfortable position, although it still isn't that great for the bad pain my hip that would prefer me to be more horizontal. Still, I need to give it time and see what adjustments help. I've certainly managed to do more already.

The only real downside is lifting the table + laptop out of the way every time I need to get up to go to the loo, make a cup of tea, etc. Moving it is one problem. Finding a clear spot on the bed where there isn't a snoring cat under the covers ... that's the other obstacle to be surmounted! Thinking

Hospital Horrors

Workhouse interior

  Social Security hospitals in Tenerife left a bit to be desired in terms of ambiance: I mean, they didn't exactly impress with their modernity or comfort levels and "bedside manner" seems to be a totally alien concept in Spain. Indeed, some of the experiences I had there; with GP's, clinics and hospitals, struck me as being lacking to the point of being "Third World", but NOTHING I've ever encountered prepared me for what I've just been through at the hands of the NHS.

Having been referred for investigation last year, because of fibroids, a possible polyp and because it has proved impossible to undergo a simple smear test due to the extreme pain of the process (presumed to be due to vulvodynia cohabiting with my fibromyalgia/me/cfs), I was scheduled to undergo a hysteroscopy (have smear and swabs done while I was asleep too) on January 5th.

First, I have to say that the consultant I saw once I was referred and the surgeon I spoke to yesterday, both seemed very patient and personable. The rest of it though - I now know (I used to merely think) that I would rather die than be admitted to any NHS hospital in the UK.

Oh, I know one reads horror stories all the time about Britain's bug infested hospitals, but at least part of one's brain likes to hope and believe that nothing can really be quite as bad as they portray and that stories must have suffered some Daily Mail style fear mongering and exaggeration.

No. If anything, comparing UK hospitals to the Third World is grossly unfair to the latter.

Whilst Southampton General Hospital has a pretty terrible reputation (it started as a "Poor Law Infirmary", so you might say not a lot has changed), on the surface, the Princess Anne Hospital next door doesn't seem too bad. Once you scratch the surface, it's another story though and now I've seen for myself that things are actually much worse than described in the press.

On top of that, the suitability of the severely cost-cut accommodations to people feeling even a tiny bit under the weather, let alone those who are properly ill ... well, they're not suitable.

For someone who already suffers chronic pain and fatigue, they're nothing short of torture.

On December, 31st, I had to go for a pre-op assessment. I felt, reasonably, I expected this to be an assessment of my state of health and suitability for the surgical process. Instead, I was left with the distinct impression that it was merely a screening process to ensure that I was not going to further infect the hospital with Norovirus (see 2007, 2008, 2009) MSRA or something of it's ilk.

Of course they need to be doing plenty to prevent such infections, but not to the rather transparent exclusion of the health needs and dignity of patients.

They seemed totally uninterested in my history; the nurse didn't even want to know about my fibromyalgia and ME/CFS and told me off like a child for not having brought the letter (I'd received back in 2008 from my rheumatologist elsewhere) to "prove" these diagnoses and, refused to even look at the print out I took with me detailing the special considerations that need to be taken and asked, snottily, if I'd got it from the internet. Yes, I had, but from a professional source.

(See also Fibromyalgia and Surgery and Facing Surgery With Fibromyalgia & Chronic Fatigue Syndrome.)

I also printed off and took with me yesterday (I didn't get around to showing it to anyone, but I don't think it would have been welcome), all 27 pages of this excellent “Hospital Booklet” (PDF download) from The Grace Charity for M.E., entitled "Information for hospital staff regarding treatment of patients with M.E. (Myalgic Encephalomyelitis)." On Page 11, it says:

"It is important at the pre-assessment that the nurse is familiar with the information in this booklet."

Yeah right. She didn't even know what fibromyalgia and M.E. were, much less was about to make any concessions for them. I was weighed. She took my word for my height. Despite making a point of mentioning frequent shortage of breath, chest pains and a tendency to collapsing episodes, she just dismissed them and I was not given an ECG. Admittedly, I didn't press the point either, since I'd had one a couple of days prior at my GP's surgery, but the hospital didn't know that.

She snapped at me as if I was stark raving bonkers, when I told her that I've twice had bad reactions to anaesthetics (first time I was 13.) That's what worries me - both those times I couldn't even get myself to the toilet (had to be dragged over a bed pan) for 10-14 days.

I don't have anyone who can accompany me, I don't have anyone capable of looking after me at home after surgery, so I asked if they could keep me overnight, but she said they don't do that. It's a day surgery unit. Then she phoned one of the wards. They don't allow beds to be booked.

She was sure I could find someone, otherwise I'd just have to turn up and hope I could be given a bed on the day. If there was no bed, the operation wouldn't be able to go ahead.

My nose and groin were swabbed for MSRA, however, then she tried to insist I use some nasty chemical wash stuff that I was supposed to use to shower for 2 days before, the day of and 2 days after surgery. I reminded her of the fibromyalgia and M.E. yet again, a well documented sidekick of which is Multiple Chemical Sensitivity and told her there was no way I could use that.

She asked if I'd got that term from a doctor. Yes I did. Pity I also didn't take the letter I have from Allergy UK, "To whom it may concern ...", detailing that I have all the symptoms of Multiple Chemical Sensitivity and along with it, another long list of things I should avoid.

She told me to buy Simple Soap. Sorry, I can't use soap. No, not even simple!

Told her I was sorry I couldn't fit into her tickboxes, but my life just isn't "simple."

The inference though, from being told to shower - and how to shower and what bits to pay close attention to (like I wouldn't naturally pay attention to them?) ... I was made to feel that the hospital assumes all of it's patients are filthy, dirty, lazy, lardarses who only bath once a week, "whether they need it or not". Or maybe less. And maybe some are, but I was deeply offended.

imageThen she started telling me at breakneck speed where I had to go, across the road at the Southampton General Hospital, for a blood test. For the Nth time, I have fibromyalgia: I have brain fog, even if you explain slowly, I'm not going to remember multi-step directions. The only bit I did get was, "Turn right at Burger King."

WTF? Burger King! Inside a hospital?

OK, maybe this became "normal" in UK hospitals while I was away, but you walk through the front doors and what you see is a not a hospital, it's a bloody shopping mall (almost indistinguishable from an airport or other similar capitalist worshiping place) with a branch of WH Smith, some gift stores, a couple of coffee shop franchises and, at the rear right-hand corner, a Burger King.

Nothing like offering sick people healthy food choices, is there?

As it was around 2 pm when I'd finished there, I was getting hungry and I did need to eat something. If I didn't, I'd probably have one of my nearly fainting episodes and I really try hard to avoid those while I'm out, lest I should seem vulnerable, be attacked or get robbed.

So I looked around at the choices on offer and decided against the crusty baguettes which all contained real meat and/or hunks of cheese (on the basis that I don't normally eat either meat or dairy and my few remaining teeth are no longer up to the task of crusty baguettes); rejected all the cakes, pastries and other sweet items on the basis that they would only increase both my pain and fatigue levels and plumbed for what seemed "the least of all evils": a burger (on the basis that it would contain almost no meat), on a more eatable soft bun. Probably a HUGE mistake.

That day having been the start of the nasty cold snap, the whole "expedition" had been really difficult for me. Waiting for buses and on train stations, I'd got excessively cold, which alone caused me more aches, pains, fatigue and another massive post-exertional malaise crash.

But whether it was the burger, the accompanying shake (given that a scientific study that found 48% of fast food restaurants tested had faecal bacteria on the soft drink dispensers and in the drinks), or just visiting the hospital, I can't really say, but on the following Monday morning, January 4th, I was visited by a mega-painful stomach upset, mostly fitting the profile:

"After approximately 1 to 2 days, Norovirus symptoms can appear. The principal symptom is acute gastroenteritis that develops between 24 and 48 hours after exposure, and lasts for 24–60 hours. The disease is usually self-limiting, and characterised by nausea, vomiting, diarrhoea, and abdominal pain; and in some cases, loss of taste. General lethargy, weakness, muscle aches, headache, and low-grade fever may occur."

In truth, it's never easy to distinguish between "normal" ME/CFS and IBS symptoms and those which may be caused by some other agent, but the pain did feel different from usual and the attack was more accute, as though resulting from an infection. So, based on advice in the media saying that "Visitors are being urged to stay away if they have suffered from diarrhoea or vomiting in the previous 72 hours", I phoned the hospital and reported my symptoms.

The consultant confirmed that I should not go, which definitely turned out to be the right decision, since the next day was when we started to get all the ice and snow.

They sent me a letter, rescheduling my appointment for yesterday, January 19th. By then the snow had all gone. My stomach was still only just getting back to it's normal schedule.

Nevertheless, having got up before 6 am, I duly went along for the 07.45 roll call. Hell, that's bad enough for someone with fibromyalgia who "doesn't do mornings." As there was no other way to get to the station (a mile away in the dark), I got a taxi, but waiting on the station, at that time of a cold January morning was too much. My back got very cold and I was soon in agony.

In retrospect, knowing my own body and the limits imposed upon it by my illness, I should have just gone home then. I didn't, I pressed on and tried my best. In future, I won't.

It was lucky that the train I'd planned to get was running, because others before it hadn't due to "emergency engineering works" at Bournemouth Depot (actually, I overheard later, a carriage had derailed the night before). From the station, I got another taxi to the hospital, to try to mitigate the effect that the travelling was going to have; to increase my chances of getting through the whole procedure without it causing a major relapse or permanent harm.

The hospital waiting room left a lot to be desired: it was small, cramped and didn't have enough seats for everyone, which included family members accompanying other patients. There is a family room outside. The letters said that family were not allowed in the unit. Clearly, this is not enforced and even when we were herded into the ward area, most of this entourage came too.

There's the infection implication: why subject patients to a demeaning screening process if they're then going to allow "all and sundry" in? As we were all there for gynae procedures there was also the privacy issue - I didn't take kindly to other people's husbands hearing me discuss my "parts", the gory details of my menstrual cycle and related matters. I'm no prude, but having to answer the question, "Are you sexually active?" under those circumstances, I found rather upsetting.

And the facilities in the unit itself were nightmare-inducingly atrocious.

Way back when I was 11, I'd gone on a Summer Camp trip to Kent with my school. We'd stayed in rows of metal bunks in corrugated iron roofed Nissen huts, which I'd assumed at the time had been previously used by the military, but which I was later informed had housed German prisoners of war. The facilities were basic in the extreme and I mention it, merely to point out that, compared to the hospital yesterday, that prisoner of war camp had seemed the height of comfort and luxury!

In the Day Surgery Unit, there were dormitory rows of old, hard, outdated looking trolleys. No actual beds. No bed linens. No pillows. They were only a couple of feet apart, with small, hard chairs between. There were curtains to draw around the cubicles, but given how we were squeezed in like sardines, that hardly afforded much privacy: certainly none at all sound-wise.

Then there were only three nurses and one assistant for a pretty large (~30) number of patients, so another concern was the availability of care and it's implications for pain after surgery. As we'd also been told to bring our own pain medication, this worried me. There's nothing sold over the counter in the UK that has any noticeable impact on the level of pain I already have.

The one toilet had no bath, bidet or other suitable washing facilities for one's nether regions, which is impossible for me to live with, given that I suffer from unpredictable irritable bowel syndrome and the fact that I've already been prone to cystitis for over 35 years.

So you could get a better idea of what this dreadful, gloomy, sparsely equipped hell-hole looked like, I thought of Googling for things like "Victorian hospital ward", but all the photos and drawings that came up looked way to comfortable and luxurious. The only image I found that even comes close to what I saw yesterday, was this picture of a Workhouse interior.

No, I'm not exaggerating. The mental image of it is going to stay with me and give me PTSD.

Those of my friends who have seen the ruinous shanty-shack slum I rented in Tenerife will know that I am hardly overly fussy about my surroundings, so you'll know how bad this had to be!

And we were expected to wait on those awful hard chairs until operation time. I guess healthy people can manage that. The level of my incapacity from the fibromyalgia and M.E. means I cannot. Now I can never sit in a chair at home - I have to spend all my time with my feet up, on the bed, supported by copious cushions - because it causes too much pain to my neck, back, shoulders, hips and legs, as well as ankle swelling, otherwise. It only takes about 5-10 minutes sitting in a chair before the pain levels rise to unbearable. I'd already had enough from the travelling.

After another hour or so on that hard, uncomfortable chair (and I never did find out if they were going to go ahead or if a bed was available for me), leaning as best I could against the wall to try to support my neck to reduce the pain, I could take no more and was almost in tears. By that time, I knew that I could not undergo an anaesthetic and a surgical procedure without it having serious implications - a crash that I may, or may not, recover from. I was all out of spoons.

I'd tried to explain to the anaesthetist and surgeon my concerns based on the two previous times that I'd had bad reactions to surgery / anaesthetics (which were probably due to the M.E.)

From past experiences, I also have to take into account:

  1. That I won't voluntarily accept any risk of an intervention that requires stitches. Although the hysteroscopy does not plan to do so, in the "1 in a 1000" chance of a problem it could. The problem is that I had ONE stitch from a laparoscopy (carried out privately in 1989) and (presumably because of the fibromyalgia), this is still sore, tender and painful. It's so bad that, if my cat just steps on my belly button, it's like a knife being thrust into me.
  2. I already have such dreadful pain in my hands and took years for the extreme pain to die down after I'd had a drip inserted into the back of my hand once before that I was not prepared to accept that - they'd have to find somewhere else to shove it.
  3. The fact that I just don't recover from "injuries" is further evidenced from the incredible level of pain I still have in my hip from a fall in 2001. The nurse who did my ECG recently warned me to mention this hip problem, because she said she'd had her hip damaged during a gynae procedure: thinks they put her in the stirrups at an awkward angle. That already makes walking painful and robs me of sleep, so there's no way I'd want it making worse.
  4. My neck and shoulders are another of my severely painful areas and the girl next to me was explaining that she'd had her shoulders put out when she'd had surgery there last June and wanted to avoid it happening again. She thinks she was pulled up by the armpits, or basically manhandled. She didn't tell me: that's what I mean about a complete lack of privacy.
  5. I already suffer with Irritable Bowel Syndrome. Given the anatomical proximity, I don't want anything making that any worse and there's the fact that the findings from that laparoscopy in 1989 (which the consultants then were absolutely sure would show up endometriosis), concluded that all my abdominal symptoms were due to the IBS anyway.
  6. I've suffered from cystitis since I was 17. I don't want that agitating either. That especially worries me, because several separate people have said that vaginal infections (which always spark cystitis) come free automatically with every intervention in hospitals now.
  7. From my history (which they don't seem to want to know about), I can also tell them that my womb is (or was) inverted and to one side. That, I wonder, might make the hysteroscopy more difficult and more liable to the "1 in a 1000" perforation risk.
  8. The methods used to distend the uterine cavity involve a bunch of chemicals I am bound not to be able to tolerate and would almost certainly have toxic shock from.
  9. I simply cannot risk being left in a position where I am unable to look after myself, get to the loo, get myself drinks or food, because my mother is unable to do any of these.

Yes, I realise that all sounds like melodramatic hypochondria, but I assure you, it just is. And nothing I saw made me feel I could trust them to be able to cope with these special needs.

In fact, I didn't get a chance to discuss all of these concerns. The surgeon suggested a compromise, which omitted the hysteroscopy, but did the smear and swabs, but it hardly seems worth the risk of an anaesthetic just for those. He also tried to lecture me on crossing roads and that we have to accept some risks. Yeah, I'll cross roads: I just won't take up extreme sports and, from what I've seen, risking this treatment has to be up there with Russian Roulette.

In the end, it's my body, my decision, as Adrienne Dellwo says, "If your doctor, surgeon or anaesthesiologist doesn't want to follow recommendations you feel you need, insist on it. They're not the ones risking a dangerous reaction or spending extra weeks on the couch in pain."

In the end, I said to the surgeon that I probably could have managed IF I'd been sent somewhere where I was admitted the day before surgery (and that I planned to ask my GP to refer me somewhere where they do), so I'd start the day off with as much energy and ability to withstand the stress of the procedure as possible - and not have it made intolerable from the discomfort and exhaustion of having to travel first or from having to spend hours sitting in tortuous chairs.

He's says he's going to write to my GP recommending that we have one more go at doing the smear and swabs in the surgery and, if it still proves impossible, leave it.

Given what I've now seen, I prefer his option.

Well, there's a chance that the fibroids will reduce all by themselves once I'm through the menopause and a good chance that the rest of my symptoms only exist because of the fibromyalgia, ME/CFS and/or IBS. My research suggests that even if there is a polyp, it may also regress on it's own; at 52, I don't think I'm bovvered about miscarriage risks and only 0.5% of polyps prove cancerous. If I'm wrong, I'll die, which, given the quality of life I have, is no great worry.

That's a risk I'm prepared to take: being buggered about by an NHS hospital - with the risk that it could reduce my quality of life beyond my current 80% incapacity to needing 24 hr care - is not.

And with that, I left. All I wanted was to get home and back to bed.

Of course, the nightmare day couldn't end there, could it?

Because of the (cough) engineering works (train derailment) the night before, the trains were still in chaos and only just getting back to full running. Some trains had been cancelled, others were running short or late. When I got back to Southampton station, I had almost an hour to wait for the next train that would be stopping in New Milton, so more sitting on hard benches in the cold.

Although, the cold, hard metal station bench was MUCH more comfortable than that hospital chair!

I'd had a chat with the guy on the ticket barrier to double check the time of my train. I mentioned it, he confirmed that's what he'd heard, but said they aren't allowed to use the word "derailed".

Yes, boys and girls, the British public has "officially" become such a bunch of "pussies" that we cannot withstand the shock of hearing a word that says "carriage wheels left the tracks."

On the other hand, we're expected to calmly undergo surgery in ill-equipped hospitals that make prisoner of war camps really look like holiday camps. Fucking arse-upwards country!

When the train came, it was to a different platform than the one I'd been waiting on, so once more, I had to lug my case on wheels up the steps and over to the other platform.

Got on the train, got to Brockenhurst and had to wait there for another half hour or more.

At Southampton, they'd announced that if we were getting off at a number of stations including New Milton, we must travel in the first 4 carriages of the train. Now, I will admit that I have some foggy mental arithmetic issues due to my fibromyalgia, but I know I can still count to 4.

So I counted the carriages and got in the 4th one, but when we got to New Milton, even though I was in the 4th carriage and there was platform beneath the door I was at, they did not release the doors on my part of the train. I couldn't get off and had to travel on to the next station.

Once more, I lugged my heavy bag on wheels up over the station bridge to the other side (and back again and you would not believe the level of pain I have in my neck and shoulders today), only to find that there would have been another almost hour wait for the next train going back in the opposite direction, but it didn't say if it would be stopping at my station or not.

So I decided to call a taxi to come and find me and take me home.

It finally took 3 hours to get home 20 miles from Southampton to New Milton. The whole fruitless and painful expedition cost me £15 in trains and £35 in taxis. Today, I was in too much pain and was too exhausted to write this really, but the experience was so awful, I had to exorcise it.

No, never again. I really would rather die.

Tuesday, 12 January 2010

A state of total unpreparedness

image

Back in the Big Freeze of 1963, I remember trudging across Selly Oak Park in Birmingham, thigh-deep in snow (I was just coming up to 6 years old) to go to my Gran's house.

We lived right over the other side of the city in Great Barr, so we must have got to there somehow and I'm certain we didn't walk the entire 8.7 miles. That means buses - at least on main roads - must have been running.

School definitely remained open. My father worked just south of the city centre, to which he drove, and I certainly don't remember him ever being stuck at home during that weather.

This video will show you, from the same 1963 winter, "British Rail's dedication to blizzard-battling ... Tough-as-boots workers struggling to keep the line clear ..."

Good grief, such notions are laughable today. Terms like "dedication", "battling", "Tough-as-boots" and even "workers", seem to have disappeared from the vocabulary, probably long before the privatization of British Rail (little did we think we'd ever miss their efforts in getting there!)

These days, trains don't run if there is "a leaf" on the line, as someone told me recently and I really, really can't imagine ever seeing a train ploughing through roof-level snow again!

By the late 80's / early 90's when I lived in Birmingham again, there were a few grumblings about councils not salting and gritting enough, but mostly, main roads were kept clear and buses ran; schools stayed open, people could get to work, deliveries got delivered, trash was collected.

Fast forward to 2010 and no doubt due to those now ubiquitous evil twins, 'Elf and Safety, Britain has regressed to the sort of chaos you'd only expect in the Third-World, in Medieval times!

image Where I am now sits in a strange little pocket of microclimate that doesn't get a lot of snow, even if nearby towns get several inches of the stuff. Indeed, to the left is most of what we got last week.

And 99% of that has gone now, yet as a result of this "snow drift lighter than icing sugar sprinkled on mince pie", we've been effectively cut off from civilization.

Last week, our refuse wasn't collected. This week, the council should be making a double collection, but then again, they may not if the truck cannot get down our road, they say. If so, they want residents to haul trash out to the main road and, as most of the residents here are old folk, one of the neighbours got onto the council to see if they could spare a plough to clear the road. The reply was that this was very unlikely.

Do you even see snow ploughs now? Nothing around here has even been gritted or salted.

Being now 80% incapacitated by ME and fibromyalgia, there is no way that I can do anything about it either. As it is, I can bearly drag the cats' shit tray as far as the dustbin. I couldn't get a whole bag of trash to the end of the driveway even, let alone the end of the road.

Of course, because it's mostly old folk, getting help would be a case of "the blind leading the blind," as there isn't anyone left who isn't, who could check on the "aged and housebound."

In this atmosphere, nobody is going to consider that a 52 year old will need help, no matter how incapacitated I am, although admittedly things might have been better if my mother hadn't gone round telling neighbours that she "does not believe there is anything wrong with me."

At the end of December, I had to go out in the cold for a hospital appointment and that caused me a terrible flare for several days. Walking hurts enough in fair weather conditions. In cold, my thigh muscles spasm, making it even more painful so there is no way I'm going to walk out in the cold again and I'm certainly not going to walk on ice or snow, which would require me to walk carefully, or awkwardly, which would lead to even more stiffness, pain and flare ups of symptoms.

Hell, my balance is bad enough already, so I'm not prepared to risk the falls either. And anyway, I'm still waiting for treatment for the effects of the last fall I had: be stupid to risk another.

We finally had a few groceries delivered by Tesco on Monday, but there were items missing from our order. Most notably, you can't buy salt (for food, for the dishwasher, for the path ...) for love or money. The driver said that the supermarket shelves were almost empty and that Monday was the first day that they'd started doing deliveries again, pretty much since the New Year.

Other deliveries have been infrequent, but our postman mostly managed to get through to deliver letters. Parcels were being held back (until a special delivery on Sunday), but he said that yesterday, Monday, had probably been the worst day, as the snow that had melted on the previous day had frozen over and was more slippery than it had been when it was just snow, naturally.

The thing is that there has been so little snow and ice here it really would not have been any problem at all, IF it had been adequately gritted / salted at the outset of the cold snap.

And the last time we had our "full" (using the term loosely) bus service was on Christmas Eve.

No, I kid you not. Well, as far as a "full" service goes, as that's just 5 buses per day (they do a circular route, so that's 5 total, not 5 out and 5 back), starting at 10 am. I asked my best friend what time she thought the last bus home from town was. "Oh, about 9 pm," she replied.

No, it leaves town at 4.50 pm in the afternoon. You should have heard the loud guffaw in response to that. Quite right too. Who in civilized society has to be limited to those hours?

Oh, and that's only Monday to Friday too!

On Saturdays, there are only 2 buses - effectively, one out at 10 am, one back at 11.30 - which doesn't provide enough time to do anything, so you might as well totally disregard them.

On Sunday's and Bank Holidays, there's no service at all.

So, starting with Christmas Day, there were no buses. On the Saturday, 26th, there'd have been the 2 total (one out at 10 am, one back at 11.30), Sunday and Monday nothing. On the Tuesday, Wednesday and Thursday, 29th, 30th and 31st, they also ran only the useless 2 bus Saturday service and, on New Years Day, no service at all. Then it got icy and we ain't seen a bus since!

When I had to get to the health centre and hospital in the last week of December, I had to use taxis to and from the train station, but otherwise, I've been housebound since mid-December.

And it has to be said that £4.00 each way for the mile to town by taxi would soon get prohibitive if one had to rely on it frequently. If one could rely on it: it took me 10 goes to get through to the taxi firm one day when it was merely raining, because they were so busy, which is usual.

Up until yesterday, the local bus company, Wilts & Dorset, had been doing a pretty good job of keeping us up to date every morning via their Facebook page (yes, I was amazed that anyone around here had heard of the internet, let alone Facebook), so at least we knew in advance that the bus wouldn't run. Yesterday and today, they've abandoned morning updates for ones at 2 pm.

There were certainly no buses today and it doesn't look promising for tomorrow either.

Clearly this is a situation that's been repeated up and down the country, but it riles me even more that we've been so badly affected here, considering how little snow we've had - not even uniform cover - and, I have to agree with Ron's point here that, "... if the bus company hadn’t bailed so early on the first day, maybe the council would have gritted the road."

Yeah, maybe not too, but there was a time when councils considered it a "civic duty" to keep roads cleared for bus routes, so people could get to work, life and services could continue.

Of course, councillors these days won't give a damn about buses and bus users, as has been said to me before, because "they all drive to the Town Hall in their Rolls Royces."

Nowhere near enough is being done and certainly much less than was in the past, yet Councils have now been told to cut gritting by half to protect salt supplies. Like Ron calculates, in my maths that 50% of nothing still adds up to a massive fuck all. Priorities here are all arse-upwards.

Companies are moaning about losses and threatening to dock wages, but then they wouldn't have lost so much and staff wouldn't have been stuck, if councils had cleared roads to keep the country moving. And I don't buy that "we aren't used to this kind of weather" excuse, because I remember that being used 20+ years ago too. By now the surprise SHOULD have worn off.

To say that this country has gone to the dogs now would be a gross injustice to canines.

[Top photo: Old farm at Overtown in deep snow in 1963 by Richard Johnson]

Sunday, 10 January 2010

How do they live where it's truly cold?

With the news that even Hell is set to freeze over this weekend, you may well think it's cold enough, thank you, where you live. Personally, I suspect the next article is also a dig at us "pussies" in the west and I think it's interesting that I found it in Spanish (I wonder if they've dared print an English version anywhere), at the BBC Mundo (BBC World) site (via: territoriosred) entitled, "¿Cómo se vive donde de verdad hace frío?" (How do they live where it's truly cold?)

There, the article tells us that while the extreme winter weather in parts of Europe, Asia and the United States is virtually paralysing life for millions of people, in many other places below zero temperatures are routine and people organize things so they can function.

For example: In the northeast of Russia is the village of Oymyakon, commonly cited as the coldest inhabited place on earth. Situated in Siberia - a former destination for exiled politicians - Oymyakon has an average winter temperature of -45 degrees centigrade and holds the record for the coldest temperature recorded in an inhabited place, of -71.2ºC.

There live 500 people. The village has one hotel, with no hot water and an outside toilet.

The children at the only local school faced the same situation until in 2008, when they were able to enjoy the luxury of being able to go to the bathroom without going out in the cold.

And while in western Europe a tiny bit of snow can close schools for several days, in Oymyakon they only close the school if the thermometer registers -52 degrees centigrade.

The majority of the village rely on coal and wood for heating and those few modern conveniences they have, such as mobile phones, if they can find cover, do not work in the extreme cold.

Oymyakon is three days by car from the closest populated centre, Yakutsk, the coldest city on earth. More than 210,000 people live there, under a constant state of permafrost, with temperatures in winter that average at around -40 degrees centigrade.

Nevertheless, the city manages to work. It has two airports, a university, various schools, theatres and a museum. Though it's said people leave their cars running all day and they advise visitors not to go out in the street wearing contact lenses, as they'll freeze on the eyes.

The city is situated on the banks of the river Lena that is sometimes frozen to such an extent that they open it to road traffic.

You call this cold?

After descriptions of other truly cold places, which I won't bore you with, the article continues that in Europe, Scandinavia regularly faces the most extreme cold of the continent and, as such, is well equipped to deal with it. (Yes, the key being that it is regular and so they've adapted.)

Residents who contacted the BBC expressed their surprise (read: they're laughing at us) at seeing images on television news showing the effect that the snow is having in areas unaccustomed to such conditions. And then we're treated to descriptions of them heroically driving, even long distances, perfectly normally (if on winter tyres), in a variety of extreme conditions.

And finally, a German resident asks, "Why do the English have this problem every year?"

We ask the same question ourselves. Why is this weather always a surprise?

(Oh, from my own personal point of view, yes, I do call this cold. After 16 years in a sub-tropical climate, I call anything under +20 degrees centigrade cold. And with fibromyalgia, my muscles, bones and joints all absolutely agree with me and seem unable to reacclimatize.)

Friday, 8 January 2010

Coffee intolerance

This is SO unfair: I am literally close to tears today. My last remaining "vice" (or pleasure and I think we're all entitled to some enjoyment in life) - coffee - has begun causing me intolerable symptoms.

Look, I've already had to give up alcohol, I gave up smoking (I gave up sex more years ago than I care to admit), I've given up chocolate and anything else that contains processed sugar, I don't regularly eat meat, nor junk or processed foods, I've always been intolerant of fizzy drinks (I only drink boring plain water and disgusting green tea the rest of the time); when that also began to make me nauseous, I stopped having milk and dairy; I restrict my carbohydrates, eat only minimal amounts of wheat or gluten ...

There really isn't much else I can give up - besides breathing - and, frankly, I may as well give that up too the way things are going and considering what quality of life I have left - i.e. not much.

After suffering a severely upset stomach on Monday morning, I didn't even fancy any coffee and, to be honest, I haven't even had the energy to make one for the last few days (mother can't work my coffee machine and isn't about to learn), so I've had to go without, until this morning.

However, today quite sever and unpleasant symptoms: trembling or shaking (any more severe and I'd worry about Parkinson's) started right after I drank only the second cup. It's hard to describe, but I also feel generally unwell, my balance is off like a drunk; while making myself food, I kept dropping things, then I developed a headache, began having hot flushes and trying to pin down a thought from amongst the electrical storm going on in my brain is hit and miss.

These all reduced a tiny bit after I had something to eat at lunch time, but is still going on now and I guess I just have to wait a few hours for the coffee to work its way out of my system.

This is not a new problem, because I remember discussing my tremors with a friend back in the late 80s, but recently, I've already been forced to ration myself to only one, or the occasional two cups of coffee per day, because any more than that started to make me feel a bit hyper.

Now I cannot manage to get my foggy brain around the science, but I feel sure that this is all linked to the central nervous system and specifically to dopamine and cortisol levels.
After centuries of disrespect and scorn, no one questions the validity of Parkinson’s disease today. It is ironic that the same neurotransmitter, dopamine, appears to play a control role in another enigma: fibromyalgia. The historic similarities are striking as evidence of dopaminergic control mechanisms begin to emerge with respect to pain, sleep, arousal and the autonomic nervous system. Each of these central nervous system functions are relevant to fibromyalgia, but hopefully FM will be sorted out and effectively treated more quickly compared to Parkinson’s disease patients. [Source]
Today's episode is the second in recent months, which leads me to believe that my tolerance level to caffeine is reducing further. Will my tolerance end up a zero? I certainly hope not, but the signs aren't encouraging and I fear that I may also have to give up coffee just to keep my symptoms down to a level at which I can still function at even the most basic level. It's too much to bear.

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