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

Monday, 3 January 2011

2011, so far …

It’s still early in the year, certainly, but already, days 2 & 3 have been notable deteriorations from day 1 and this does not really bode well.

To begin with, I’d slept through the New Year celebrations, because basically, I couldn’t be arsed. I felt so crap anyway, as I still had a stomach ache – it still feels like someone kicked me in the lower abdomen - after a painful attack of IBS on the morning of the 31st.

Over the Christmas period, the *price* for enjoying turkey, trimmings, pastry & sweet things (a LOT less of them than most “normal” people will have had) was that I suffered alternate days of constipation and it’s attendant insupportable migraine-like headache and (after curing those) days with the exact opposite, along with the equally unbearable pains and spasms (like labour contractions) of IBS. Of course, I took prescribed medication to solve the IBS attacks, so the next day I wouldn’t be able go again and would need constipation relief, pain relief pills ... Rinse, repeat.

There are only so many hour-long, gut-wrenching bathroom visits one’s body can stand. It left me feeling weak and ill, just as if I’d had serious food poisoning. Only as long as I stick to my boring meat free, dairy free, wheat free, gluten reduced, chemical free (and consequently often flavour free) diet, mostly, can I keep attacks down to a minimum. This means around weekly is most usual. How often did I get these attacks when I lived in Tenerife? Once or twice, that I can remember, in all 16 years and it certainly didn’t ever need medication.

How much of the increase in all of my symptoms is down to the climate in the UK not agreeing with me, the considerably higher levels of pollution; in the air, in a closed and carpeted house, the food, or the numerous additional stresses I live under here, I really can’t say, but it’s VERY hard to deal with, because, all put together; the fibromyalgia pain from head to foot and in every muscle and joint, the chest pains, the (medical) fatigue, the constant ups and downs in the gastro-intestinal department, the ever-present nausea, the constant fog in my brain that makes me feel like I’m getting Alzheimer's, plus dizzy spells, shaking, orthostatic intolerance that has me swaying like a drunk every time I try to stand for more than 30 seconds or so and that mean I often cannot even sit up, leaves me with a quality of life that … Well, it has no quality. It’s hardly even a life.

In the meantime, I’m trying Venlafaxine (after finding that Fluoxetine (Prozac) makes me sweat like a pig) as I’d read Venlafaxine is well-tolerated (and prescribed to treat orthostatic intolerance and postural orthostatic tachycardia syndrome that I suffer badly) and, can help reduce the severity of hot flushes in menopausal women. Apparently, Venlafaxine has a similar effect to amitriptyline, which is what is always first prescribed (off-label) for fibromyalgia (because it’s so cheap) in the UK, but which I suffered really bad side-effects with.

(It’s the serotonin implications that one needs these anti-depressant drugs with fibromyalgia, not simply because one is depressed, although I am, severely, which should hardly be a surprise with the sum total of what I have to deal with.)

In addition, after 2 years of begging, I finally got some medication for pain: Gabapentin. Though, if I were superstitious, I might conclude that fate does not want me to have this, because of the lengths I’ve had to go to to get it:

Once the pain levels became unbearable in the UK, in September 2008, I went to the GP, who prescribed the amitriptyline and referred me to a rheumatologist, who confirmed my diagnosis of fibromyalgia and ME/CFS, but could offer no more in terms of treatment than to tell me to keep taking the amitriptyline. Eventually, I got the prescription changed to fluoxetine (Prozac), but that does nothing for pain and I could see I was really getting nowhere, so I changed GP.

The new one wouldn’t prescribe anything for pain until a specialist recommended it and referred me to the pain management service. In August 2009, I was assessed at one facility, who thought a different facility were better equipped to help me, so I was referred on. I got assessed again in early 2010 and an appointment in the middle of the year, only to be told that they cannot prescribe at all!

After all that, in desperation, I asked the GP for another referral back to the rheumatologist to a) carry out an MRI scan on my constantly painful hip, b) to investigate the severe pain and loss of movement in my neck and c) to see if she would make this “magical” pain drug recommendation to my GP. She did all of those things and I’m currently waiting for a follow-up appointment to find out the results of the MRI that was done just before Xmas and an X-Ray on my neck.

So on December 15th, I went to the GP to see if she’d got those recommendations and finally got a prescription for the Gabapentin. Went to the chemist to find … they didn’t have any, so as I was going for the MRI the following day and wouldn’t have been able to go back again as they asked (a mile walk there and a mile walk back), arranged for them to deliver the gabapentin when it was available.

By December 23rd, it still hadn’t arrived and I was losing all hope of it arriving before Christmas – I was, naively, hoping for it to relive some pain so I could possibly enjoy the holidays – so I walked up to the chemist to chase it, only to discover that they STILL hadn’t had a supply in (snow was blamed) and yet again, was asked if I could come back the next day, Christmas Eve.

I’d specifically wanted to avoid having to go out on Christmas Eve and had done my last bits of shopping on the 23rd, because I didn’t want to repeat the bad flares that exhaustion + cold weather + extra holiday cooking, etc., have caused in previous years. I’d planned to get a taxi home on the 23rd, to try to mitigate the exhaustion, but there weren’t any available, so I’d had to trudge home, in the ice, carrying far more shopping than I could really manage and, consequently dropped exhausted when I got home and spent a sleepless night in terrible pain.

Nevertheless, on Christmas Eve, I trudged back in the ice to the chemist, asked for my prescription, was handed the familiar green paper bag and walked home.

You don’t tend to open the bag in the chemist: you accept the prescription you are handed, on faith. That’s something I won’t be doing ever again! When I got home, I found that it wasn’t the Gabapentin, it contained Fluoxetine. Back in August I’d had to go back and forth to the doctors umpteen times because a prescription went missing. At that time I did NOT have (had not yet made arrangements) for the surgery to send my prescriptions to a chemist, so it was definitely the surgery who “lost” it … So, they must have sent it to the chemist without agreement, because this was it, at the chemist all that time.

So I phoned the chemist to see if they had the prescription for the gabapentin. It had JUST come in, so it hadn’t been there when I’d called earlier. I gave the pharmacist an hour to get it made up and ordered a taxi to take me up there, wait for me while I got the prescription and then bring me home again. Just having to go out again was enough, I couldn’t possibly have walked all that way for a second time in the same day. Of course, it cost an arm and a leg, but I hoped that some pain relief would “relieve” the shock of this extra expenditure.

So, Christmas Day, I started off knackered, I started on a new drug – which gave me a recreational quality, but very unpleasant “high” – and also started on a week of eating all the wrong things. It was a recipe for a bloody disaster, wasn’t it?

When I read the label, I discovered that the gabapentin contains lactose and I’m lactose intolerant. You’d think it would be such a small amount it wouldn’t cause a problem, but I get relevant symptoms as soon as I’ve taken it, so I’m sure that it does and is adding to the increased severity and incidence of the IBS attacks. On the second or third day of taking it, I started getting severe chest pains and tightness. At one point I was lying in bed and I could hardly breathe (and couldn’t move to get help.) Apparently, this is a possible side effect of the Gabapentin and one that I should have sought immediate medical attention for. HOW?

It’s certainly not the first time I’ve had chest pains and whilst I am sure that various drugs have sparked off new episodes, I think these chest pains are all part of the fibromyalgia and ME/CFS. These symptoms; chest pain, shortness of breath, tightness of the chest, palpitations, are also part of the cardiac arrhythmia - ectopic beat (or cardiac ectopy), also known as Premature Ventricular Contraction (PVC) – that was discovered when I had a 24 hour ECG back in October. Among other data, one reads thatIn a PVC, the ventricles contract first, which means that circulation is inefficient.” This makes sense, finally, with my generally low blood pressure, the orthostatic intolerance and low blood volume (that cause blood pooling and pain in my legs). The trouble is, I’m already taking all the medications, supplements and dietary modifications that could help with it.

And, as (amongst other things), mitral valve prolapse (known to be co-morbid with fibromyalgia/me/cfs), magnesium and potassium deficiencies, adrenaline excess, lack of sleep/exhaustion and stress (all also related to / symptoms of fibromyalgia/me/cfs) are cited as possible causes of PVC, it’s all a bit “chicken and egg”. Did the PVC cause the fibro, or did the fibro cause the heart arrhythmia? Will I ever know? I doubt it. A cure? Even more doubtful.

And, so far, I’ve suffered worse pain in the last few days than ever before.

Saturday, the 1st of the month and the year, I managed to check my meagre finances, pay the odd bill and generally “potter” a bit on the internet. Yesterday, I couldn’t even manage that. I woke up too early, from not enough sleep, feeling utterly exhausted. By mid-morning I gave up. I couldn’t sleep, because I’d gone way beyond tired, but I couldn’t do anything productive, so I lay down to half watch some banal TV that I didn’t need to think about in order to follow. Today, I wrote this, but otherwise, it ain’t shaping up to be a much better day. In what way can I see any of these things improving in 2011? Frankly, I can’t.

Monday, 3 Jan 2011

The wonderful Holly

Managed 10+ hours of sleep last night, but, as is common, it was plagued by lengthy, vivid dreams with realistic and convoluted plots. Again, as happens a lot, Holly was with me in these dreams. We played, she bounded everywhere – like she did. It was WONDERFUL spending this time with her. It was DEVASTATING to wake up each day to the realisation that she’s gone and then re-living the unbearable grief. Woke with a headache, stiff and couldn’t get going until after the 2nd cup of coffee and really didn’t anything constructive after that. Updated the music on my MP3 player, which was not a great thing to in the evening, as the music stimulated me too much, so I couldn’t get to sleep until 3am.

Tuesday, 4 Jan 2011


Woke with the alarm at 8am, but was too knackered to move until 10am, having dozed in between. As we’re now back to the normal vegan diet, I actually don’t feel quite so bloody awful today. Nausea gone, so maybe I’m getting used to the Gabapentin too. [Spoiler alert: I wasn’t.] Better, of course doesn’t mean cured though, because I “just” feel as if I’ve been beaten and battered and flattened by a steamroller - a day where I feel that “if I take it easy”, I might feel able to do something in a few days. Exactly how one takes it any easier than being bed-bound except for loo and kitchen trips though, I can’t say! Did nothing productive and instead spent the day merely browsing fun and pleasant things and bought a few items on eBay to add some colour and cheer to my surroundings.

Wednesday, 5 Jan 2011


Only 4 hours sleep last night – music is great, but it’s too stimulating late at night – so I woke up feeling absolutely dreadful. Interesting article on Science Daily said the metabolic cost of a night without sleep is roughly equivalent to a 2 mile walk

[Although it's hard to get across how severe the effects of something "as normal as" a two mile walk would be, in contrast, for someone with ME.] 

But, I can absolutely equate to that. The [physical] stress of the missed sleep has left me feeling strung out, and has caused another cold sore, so I feel unwell generally from that. Pain levels (hip, neck and back) raised again. Concentration impossible, so I did nothing productive again, beyond writing one short email.

Thursday, 6 Jan 2011


Slept from 2am to around 10:30am, but I don’t feel caught up from the lack of sleep the night before and thus, woke up feeling like I still needed a lot more sleep. It’s also raining (again), so pain levels have shifted up yet another notch and the effects of Naproxen – which isn’t much anyway – soon wore off. Trying to read with music playing made me feel nauseas [more than usual]. When I got up to go to the kitchen, I felt dizzy and lightheaded again. Had chest pains all afternoon and into the evening, which also left me feeling tired and washed out. Pain in my right eye again. And back to not being able to go to the loo again.

Friday, 7 Jan 2011


Fell asleep just after 10pm last night. Half-woke when alarm went off, but didn’t actually stir until 11:45am – 13.5hrs sleep in total. Caught up at last? Nah. Didn’t feel any more able to do anything; certainly no more energy than usual, although less nausea. And weather still humid, so pain levels still high, particularly in my hip. Back pain particularly bad too, which might be related to [sluggish] digestive function. Again. So, yet another day where I browsed aimlessly as I couldn’t concentrate sufficiently for anything more, nor had the energy to do so. In sum total, I only managed productive tasks – online, lying down – for a short while (maybe an hour). Yes, this is ‘normal’. 

Saturday, 8 Jan 2011


So much for a good night’s sleep. Woke up at 4am and didn’t get back to sleep again until around 6:30. Took another Gabapentin in hopes that would help, but all it did was to give me an awful stomach ache and pains in the chest again. Woke at 11:15 feeling pretty grotty, not rested and with a major headache. I really want to change the bed, clean the room and sort my wardrobe, but I just don’t have the energy or ability to do it. [For the umpty-thousandth consecutive day.]

Sunday, 9 Jan 2011


Didn’t feel too bad when I got up at 9:45am, but as soon as I made breakfast, I was absolutely done in. Spent the rest of the morning lying down. Later, changed the bed. It took an hour and left me shaking with exhaustion from the exertion and unsteady, nauseas and hot enough to fear spontaneous combustion. Almost. Taking a shower after dinner was difficult to stand and balance.

Monday, 27 December 2010

Monday, 27 Dec 2010

Christmas Aftermath

I noted yesterday that in the Xmas aftermath, I was having to wear sea sickness bands to lie on the bed. No, I hadn’t had a drink – not even one drop. 

The reasons (beyond the fall which hurt my knee and the course [NHS expert patient, ironically - I was self-managing more effectively before that setback] which screwed my whole routine and caused a flare) were in small part [due to] deviating from my usual restrictive diet and mostly to do with having to go out on the 23rd and then twice on the 24th to get my prescription of Gabapentin - that had been outstanding since the 15th - and then, foolishly, taking it. 

On Xmas day in the morning, when I took it the first time, it gave me such and awful high – very unpleasant sensation, never before known with a legal drug. Trying to cook Xmas dinner with my head in the clouds was no fun either. I wouldn’t have minded if it had done something for the pain, but it didn’t.

Tuesday, 28 Dec 2010


Part of the problem with the Gabapentin is probably because the capsules contain lactose and I’m lactose intolerant, but even solving that (the tablets don’t contain lactose), the rest of the side-effects are too severe for this to be viable. On the 2nd or 3rd day of taking it, I started getting severe chest pains and tightness [in my chest] again. Later, I read that I should have got urgent medical attention, but I was lying helpless and couldn’t move. I couldn't. It certainly was the cause of more nausea, which I had for years, but finally managed to control a few months ago; made my vision problems worse; gave me horrible headaches and back ache, plus increased trembling and shaking – this is all on top of the pain and usual symptoms. And it’s making me even more confused and foggy than usual.

Friday, 31 Dec 2010


The last day of 2010 and the culmination of the Christmas period is not one I’m going to forget in a hurry, because of a pretty bad attack of IBS-like symptoms. Deviation from my normally restrictive diet over the holidays had meant alternate days of either intolerable constipation or crippling sh*ts. Today was one of the latter. After beginning as seemingly normal suddenly the wind built up, there was a great rumbling from within and then a huge emission of ‘molten lava’. When it seemed to be over, it would start up again. This was repeated, over and over, for 45 minutes. This had happened on alternate days over Christmas, sometimes lasting for more than an hour. The pain was unbearable and the episodes left me weak and ill, just as if I’d had bad food poisoning. Today the stomach ache is so bad it left me no alternative but to lie down and sleep it off.

Saturday, 1 Jan 2011


Whilst I don’t see this becoming competition for Sam Pepys any time soon, faced with wide open spaces in a huge diary [this was originally written by hand on pages of cut down trees], I cannot help but want to fill them. 

I’m sure all it will do is to confirm what a dull non-life I lead these days. 

How did I see in the New Year? Sleeping. Couldn’t be arsed, as I still felt ill and had a bad stomach ache – felt like I’d been kicked – from yesterday’s bad attack of IBS. Checked finances, paid bills and pottered on the net. Yawn.

Sunday, 2 Jan 2011

Woke up too early after only around 5 hours sleep, feeling absolutely and utterly exhausted. By mid-morning I gave up, because I just wasn’t able to get anything constructive done. Couldn’t concentrate. Watched banal TV [‘watched’ is a bit strong: ‘it was on’] lying down for the afternoon. Managed to finish menu for the remainder of January and place grocery order [online] in the evening.

Notes

  1. Unless I actually mention an outing, I did not leave the house.

  2. Apart from trips to the loo or to the kitchen to get food and drink, unless I mention an activity, assume I was not able to do any.

  3. Unless I say otherwise, assume that 23.5 hours out of 24, I was reclining in bed.

  4. Unless I mention t or I had an outing, you can also assume that I did not bother to have a shower or bath that day, most often because it would have taken too much energy.

  5. Also, unless I specify an activity, you can assume that I was only able to half watch banal TV or browse the internet for short bursts of time.

Tuesday, 21 December 2010

Christmas 2010

There is no way that Balu would be persuaded to pull a sleigh! 

A few twigs and a nod in the direction of Christmas after 2 years without.

Saturday, 4 December 2010

‘Tis the season

Snow

A last look at the snow, which for just 2 days of this week, sent this little corner of Hampshire into utter chaos. To be fair, the area has never seen this much snow in one go before within living memory and neither had my cats – one of whom seriously hated it, the other enjoyed it immensely. Strange beings.

Overnight, last night, so much rain had fallen that it had washed all of that snow away, barring just some tiny traces that have also since been washed away by further rain during the day. It seemed to have melted, the temperatures have risen and there are liquid puddles, but I’m informed that the roads and pavements are still like sheet ice, so going out is still impossible.

Proper cold

Apparently, not even the main roads in this area have been gritted, which is exactly the same as didn’t happen last time we had snow too. Over the border into Dorset, at least the main roads have been cleared, so it’s reported.

Since I stagger, slip and slide even in perfect weather and always hurt myself when I fall, I think staying in is a sensible and very necessary precaution.

To be honest, over the last several days I’ve felt so low and sluggish that it has taken a supreme effort just to walk to the loo or the kitchen and back and just those activities – already simplified to the least possible exertion – have been too much for me, making it necessary for me to lie down to “get over” the exertion in between trips. Today, just walking to the kitchen and back made me shake from head to foot from the over-exertion: it’s almost impossible to explain how weak and generally unwell one feels as a result.

So, OK, I wouldn’t have been able to go out anyway, but somehow, when the weather adds yet another level of difficulty and makes being housebound a complete fait accompli, it’s the final straw and becomes harder to bear. 

The most snow the area has ever seen

On Thursday, all the trains in this area were suspended and we had no mail deliveries. Our buses didn’t run on either Thursday or Friday. Nothing new, of course, but this whole “Britain surprised by a sprinkling of annual white stuff, yet again”, is becoming very seriously irritating.

On Thursday I couldn’t have gone to a pre-arranged meeting, walking a mile each way in snow, but then as I couldn’t get an answer on the phone, I’m guessing nobody else could either. On Friday, my course was cancelled, but again, I wouldn’t have been able to get there, walking, in any case.

And today, I decided to give the local Christmas Extravaganza a miss, not just because of the ice, but also because I reckon the title is a piece of seriously extreme marketing exaggeration – considering the size of this no-horse town and the general level of excitement one might expect around here. Frankly, I couldn’t be arsed, which is about how I feel about the season generally.