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

Showing posts with label Myalgic Encephalomyelitis (ME). Show all posts
Showing posts with label Myalgic Encephalomyelitis (ME). Show all posts

Thursday 30 June 2011

ME Symptom Diary: June 2011

Therapy dog


Wednesday, 1 Jun 2011

Hurt all over: shoulders, down my bum, hip hurts, legs, foot … and have the feverishness, sore throat, headache, etc., that always happens after any exertion. Had to take a 2nd dose of Celebrex as the pain was breaking through again by lunch time.

Thursday, 2 Jun 2011

Still got pain, inflammation and feverishness resulting from the exertion of taking those packages to the Post Office on Tuesday. Can’t get up. Getting out of bed both difficult and painful, can’t sit up, every muscle and joint hurts and is burning fiercely. Hurts to sit on the loo even.

Friday, 3 Jun 2011

Bad night, pain woke me before 5am. Feel so sick, I just have to lie down. Hands hurt. Headache I can’t shift. Also had a bad coughing attack.

Saturday, 4 Jun 2011

Slept right through, only waking briefly once, until almost 11 am. Even the cats let me sleep. Still don’t feel rested and am tired and achy.

Sunday, 5 Jun 2011

Hip pain broken through meds again. Knees, ankles and feet hurt so much and are stiff, shoulders, arms and hands hurt too. Hurts to write as usual.


Monday, 6 Jun 2011


Having trouble with pins and needles and my legs and feet going to sleep. Couldn’t stand. Tired as usual, but manage to list some items to sell on Ebay – done while lying down in bed, of course.

Tuesday, 7 Jun 2011

Really couldn’t move or get out of bed this morning. Utterly exhausted. Knees hurt much more than usual. Legs hurt. Too painful to have laptop on lap. Ache and sore all over due to humidity. Soreness on right foot has increased again. Extensive IBS attack in the afternoon left me feeling totally drained and with unbearable back pain including that deep pain in my left kidney area - that had me rushed to hospital in Tenerife back in 1995 - and that always comes back with flares. Feel an overall anxiety that I can’t really identify or shake at the moment.

Wednesday, 8 Jun 2011

Woke up exhausted, unable to concentrate even on reading emails. Had breakfast then lay back down again and went back to sleep. Still got dull ache in left kidney area. Still feel physically wiped out as if I’d been run over by a steam-roller. Laying in bed, feel as if I’ve been stuck in place and that gravity has been doubled. Pain is defying the meds again, but don’t want to get into the habit of taking more, leaving nothing extra for the future or emergencies.

Thursday, 9 Jun 2011

Really achy again this morning, with pain not responding to meds at all. Back feels broken, so had to put on support. Joints all feel swollen and are clicking painfully again. Not really up to it physically, but had to go out to counselling appointment again in the afternoon.

Friday, 10 Jun 2011

Very sore this morning. Neck and back pain bad after yesterday’s outing. Couldn’t get comfortable in bed as pain was too severe and in too many places to get into a position that I could relax and that didn’t cause additional pain. Everything is sore, even resting limbs on the bed clothes hurts. Nothing is responding to meds. Knees too sore to walk on.

Saturday, 11 Jun 2011

Woke up early morning with an unbearable pain in the centre of my chest. Legs hurt. Walk to kitchen felt like a marathon. Wiped out and feel very sick and unwell (malaise). Had to spend the day lying down again.

Sunday, 12 Jun 2011

Headache that started a couple of days ago just won’t go. Light hurts. Sore throat. Hoarse. Back hurts. Neck hurts. Had to lie down in a darkened room.

Monday, 13 Jun 2011


Woke with horrendous back ache this morning, which was only worsened by one of the most violent IBS attacks ever, with contractions and full body spasms. Felt really weak, exhausted and unwell afterwards with a stomach ache like I’d been kicked by a mule. Had to spend the rest of the day lying down to recover. 

Tuesday, 14 Jun 2011

Crappy night (pun intended) as I couldn’t get to sleep at all because of the back pain. Pain in my hip is bad again. Neck pain has also increased. Sure sign of wet weather on the way again, which, in the UK, is pretty much permanent and situation normal. My body can’t cope with it though. Had to go out to a dentist appointment in the afternoon, despite not being well enough.

Wednesday, 15 Jun 2011

Crap night (again) and slept lightly because of the increase in pain caused by the outing yesterday. Would prefer to stay in bed than to go out today, but have another appointment, this time for Myofascial release. Exhausted before I start.

Thursday, 16 Jun 2011

Hip pain was absent this morning for the first time in over 3 years as a result of the myofascial release (MFR) yesterday. The bad news about this is that the effects only lasted temporarily and the prospect of the bus journey at least once a week, not to mention the £25 - £40 cost each time, makes this not only prohibitive, but also counter-productive. Also sadly, it had no impact on my other symptoms, so joint pain and fatigue were still crippling. Nevertheless, walking was a bit easier for a few days, which was almost like a mini-holiday. Had to go out again this afternoon for a counselling appointment.

Friday, 17 Jun 2011

Was awake at 3am. Less pain than normal, but another bad attack of IBS quickly brought the day back down to normal levels of crapness (pun intended, again). Spent most of the day lying down quietly to recover because the IBS left me feeling sore, weak and feeling unwell.

Saturday, 18 Jun 2011

Exhaustion is the worst symptom today – after too many outings for appointments in a row – so much so that I had to spend most of the day lying down again as I felt so unwell. Otherwise, just nagging pain and stiffness.

Sunday, 19 Jun 2011

Felt too ill to note symptoms today. Spent day in bed.

Monday, 20 Jun 2011


Aching hands again this morning, as the weather is humid once more. Other pain is spasmodic, rather than constant, which is an enormous, unexpected improvement.

Tuesday, 21 Jun 2011

Headache, back ache, neck ache, legs hurt … and a night full of vivid dreams and only light sleep again. Woke up feeling like I hadn’t slept.

Wednesday, 22 Jun 2011

Hip and leg pain back up at excruciating level. Neck, back and shoulder pain really bad. Hands and wrists hurt. Knees ache. Exhausted.

Thursday, 23 Jun 2011

Back pain, neck pain and hip pain all dreadful today. Legs hurt and are too weak to hold me up. Knees hurt. Hands hurt. Just want to sleep, but have to go out to a counselling session in the afternoon.

Friday, 24 Jun 2011

Just when you think your meds work: couldn’t get to sleep until 6am. Legs are in agony again after walking yesterday. I made the mistake of walking home from the village as the weather was fine, but it’s clear that this activity always results in a sleepless night and a flare of pain. All symptoms are heightened today and I feel utterly strung out from the lack of sleep. Was unable to do anything all day. Slept all afternoon and all night, after going to bed at around 8pm.

Saturday, 25 Jun 2011

One of THE worst pain days ever: neck, back, hip, legs … my hands are weak and throbbing with pain. Everything hurts and I am so fatigued I can hardly move and when I do, just the shortest walk (to the kitchen) feels like an extreme exertion and just makes me want to lie down again.

Sunday, 26 Jun 2011

Neck and back really painful again. Legs can hardly carry me. Just getting breakfast wore me out. Was only able to recline all day: could not have mustered the physical energy to do anything.

Monday, 27 Jun 2011


Hell would be more comfortable than the heat and humidity mix in Britain right now. All my joints are groaning and feel swollen. Back and neck hurt. Hands hurt and are throbbing with pain. Couldn’t find a position that was comfortable in bed again last night and consequently didn’t sleep much. My skin is sore everywhere. My toe joint is throbbing with what I can only assume to be gout (this was diagnosed, back in the early 90’s, in Tenerife, tested with high uric acid levels) – this time I certainly haven’t been provoking it with a rich diet nor excess alcohol! The skin on that joint is so sore that I can’t touch it nor put it down, nor let it touch the bedding even. Shoes would kill me. All over allodynia pain is severely heightened again, including a sensitive spot on my belly button (the site of one stitch following a laparoscopy carried out in 1986 – that simply will not heal.)

Tuesday, 28 Jun 2011

Neck ache, back ache and knackered, as usual. Pain in lower legs, ankles and feet – the latter feel as if I’ve walked miles – just from a short walk yesterday.

Wednesday, 29 Jun 2011

Legs don’t want to work, knees swollen, neck hurts and I feel like I’ve been run over by a steam roller again – but then that’s all the default position. Stood for a bit too long – like about 2 minutes – and this made me feel sick and shaky. Had to lie down again to recover and stop the feeling overwhelming me.

Thursday, 30 Jun 2011

Didn’t get to sleep until 4:30am and woke up at 9:15am, so I’m absolutely knackered. Again. Knees feel like they’ve walked miles and are very sore and painful. Also have an awful headache and feel strung out from the lack of sleep. Yet I have to go out to appointments again today – which will mean recovery is going to take days again. Neck is making painful crunching noises. The usual problems walking to counselling appointment – was exhausted by the end of the road, let alone half way – and my shoes ripped holes in my feet again.

Tuesday 31 May 2011

ME Symptom Diary: May 2011


Sunday, 1 May 2011

Everything feels swollen again this morning, especially knees and extremities. Weather dull. Hip pain was bad again. Back pain.

Monday, 2 May 2011


Just tired and stiff this morning, but only feel averagely crap. Of course, if I actually tried doing anything, that would be a different matter.

Tuesday, 3 May 2011

Woke up knackered and too early because of the mornings getting lighter, with my hands swollen, joints cracking, with severe pain again in my hip, back and neck.

Wednesday, 4 May 2011

More stiff and achy again this morning, which I attribute to it getting particularly cold indoors yesterday. Energy levels will be fine, as long as I don’t expend any.

Thursday, 5 May 2011

Pain levels up again this morning. Think the weather must be on the change. Headache, stiff, but otherwise not too bad for fatigue. YET. Went out in the afternoon to counselling session. Collected the balance of prescriptions from chemist and one or two items of shopping. By the time I got home my shoes had ripped painful holes in my feet, which were sore and blistered; my knees and hips were screaming in pain and my back felt broken. Could hardly walk.

Friday, 6 May 2011

Worse than usual reaction to outing, with severe pain in neck, back, hips and hands. Sore throat and feverish headache. Took a cold and flu powder and went back to bed to lie down as I felt so sick. Couldn’t even manage to sit up.

Saturday, 7 May 2011

Pain (despite meds) and headache, along with nausea, aches and feverishness – still. Just want to lie down as I feel so unwell. And did. Another day written off.

Sunday, 8 May 2011

Weather has turned cold and damp (as predicted) and the pain and stiffness in my knees and hips is excruciating. I’m tired, I feel sick and can only lie down. Had a painful attack of IBS in the evening, which made me weak and sore. Went to bed.

Monday, 9 May 2011


Humidity still very high after weekend storms, which has caused another huge increase in pain level (despite meds – what's the point is of taking them?) in neck, back and hip. Very stiff and painful to walk. Writing is very painful even.

Tuesday, 10 May 2011

Pain kept me from deep sleep and woke me up early, because weather is humid again. Pain persists despite medication. All joints sore, feel swollen and are clicking painfully.

Wednesday, 11 May 2011

Woke up knackered, with a headache, pain in my neck, back and hip and the feeling that the day is going to go downhill from there. 

Thursday, 12 May 2011

Didn’t get to sleep until 5am, so today I’m not more more than ‘the walking dead’, but have to go out to an appointment in the afternoon. (This is the regular conundrum: it was a counselling appointment, so not only was there the physical demand of getting there, but there were also the emotional and mental ones. Especially if I wanted to actually benefit from it. However, it’s absolutely impossible to do that on almost no sleep, but also impossible to control or foresee what sort of night I will have or how unwell I will be on any given day.)

Friday, 13 May 2011

Bad night with exhaustion and pain from outing yesterday. Legs and feet worst, along with back and neck pain. Woke with sore throat, headache and feverishness.

Saturday, 14 May 2011

Couldn’t get to sleep until 6am. Woke with a bad headache, sore throat, swollen glands and an increase all over of aches and pains.

Sunday, 15 May 2011

Woke with sore throat, catarrh, stiffness … Last night was itching all over my torso like a flea-bitten moggy. This morning I feel bruised even if a cat steps on me.

Monday, 16 May 2011


Really bad today: so weak I can hardly pull myself up off the bed nor sit up. Woke up with headache. Still itching. Joints all cracking.

Tuesday, 17 May 2011

Rain forecast, confirmed by the mega-high level of pain in my hips, legs, back and neck – all of which woke me early. Utterly exhausted. Can barely sit up. Getting up out of bed difficult as I’m too weak and trying to do so hurts my wrists. Can’t even pull myself into a comfortable position, but can’t stay upright because thus causes extreme nausea and overwhelming need to lie down. Certainly could not think. Could not walk further than the bathroom this morning. Nevertheless, had an appointment at the optician in the afternoon and this totally exhausted me. Came home and fell asleep. 

Wednesday, 18 May 2011

Bad pain last night and this morning after outing yesterday, especially in hip, back and neck. Neck in particular from the jolting of the bus – I’d gone by bus to save walking as I was so exhausted already, but the bus really is too painful. Can’t even get comfortable in bed I’m in so much pain.

Thursday, 19 May 2011

Pretty crappy: woke up with bad pain and my movement is restricted as a result, particularly in my hip. Could hardly walk and then in an unnatural manner. Pain and stiffness in neck and shoulders persists from bus ride on Tuesday. Had to go out to a counselling appointment in the afternoon. Was very tired after outing, but more in pain in neck than usual, despite meds, which is still as a result of the bus journey on Tuesday. Really can’t manage buses.

Friday, 20 May 2011

Pain in neck and hip – usual reaction after and outing. Voice croaking from talking yesterday, as well as headache, aches and feverishness. No alternative but to lie down and rest.

Saturday, 21 May 2011

Sore throat, exhausted before I start the day, stiff and sore joints. Neck, shoulders and back still hurt  from Tuesday’s bus ride. Wrists affected also, by which I mean they are painful, but also do not have any power. 

Sunday, 22 May 2011

Just average day: weak, stiff, achy and, despite sleeping reasonably well, too exhausted to get up and do things. In the afternoon, managed to begin on sorting stuff.

Monday, 23 May 2011

Pain in neck increased again. Also very tired and have a sore throat again this morning. Reacted badly to the little activity I did yesterday, sorting stuff.

Tuesday, 24 May 2011

Only walked to the local Post Office and back yesterday, but woke up with the sore throat, feverishness, headache, pain and spasms in leg muscles that normally come after a much longer outing. Also being stressed out by mother’s constant melodrama and attention-seeking behaviour. Today the world was about to end because her hospital transport hadn’t arrived when she was ready. This was accompanied by highly dramatised exclamations of “Oh, I hope he hasn’t forgotten me” and “What am I going to do?”, while quivering her bottom lip and turning on the crocodile tears. Nothing, you say? Poor old dear, you think? She would want you to believe that I'm the one being unreasonable and unkind. NO. She knows what she’s doing. This is everyday. Besides she was ready ages before she needed to be and the lift wasn’t even due to arrive for some considerable time then, so he wasn’t late, so there wasn’t a problem in the first place. Pointed this out to her, but she feigned (became snotty, nose in the air, refused to respond ...) not being able to understand that logic. And jeez, it’s hard to be sympathetic when she disregards, denies and brushes off my illness and is clearly using these relentless melodramatic outbursts to ‘prove’ – at least in her own head – that she is SO much more unwell and important and deserving of sympathy.

Wednesday, 25 May 2011

Woke up with sore throat, exhausted and with pain in neck, back hips and legs as if I’d been on a major outing again and I’d only been as far as the local Post Office again yesterday.

Thursday, 26 May 2011

Bad pain and stiffness everywhere as weather turned to rainy and windy. Hurt my wrist trying to get out of bed. Legs barely work. Headache. Counselling appointment in the afternoon and the walk was difficult – not to mention wet - and was glad to come straight back again. Went straight to bed, exhausted.

Friday, 27 May 2011

Pain in hip and neck mostly, along with general stiffness and aches after outing yesterday, as well as exhausted after waking at 5am. Have been waking earlier and earlier lately because of the light mornings, despite blocking the glass above the door and buying a screen. These only help a little. Had to take some more items to the Post Office and do some shopping in the afternoon. Took the bus there – BIG mistake – and taxi back, but this was still exhausting and caused a lot of pain in my legs.

Saturday, 28 May 2011

Shoulders, back and legs all hurt and knees feel swollen. Arms and hands hurt. Writing hurts. Joints all clicking painfully. Headache. Exhausted. Woke up early. Nausea. Coughing, choking and wheezing with tightness and pain my chest again – this latter several times this week, but particularly bad this morning. Pain in my knees is excruciating. Every time I stand up, I feel overwhelmingly sick and have to lie back down again.

Sunday, 29 May 2011

Hands, neck and knees were worst affected with pain this morning. Bad attack of IBS again today has put me back in bed with a sore stomach, weak and general malaise, as well as back ache.

Monday, 30 May 2011


Lovely (sarcasm) Bank Holiday weather: drizzle, drizzle and more drizzle. My joints are clicking and banging, painfully and I’m sore as f*ck all over. Unable to move all day, so I lay down. Baked some cakes from a packet mix later.

Tuesday, 31 May 2011

Everything just really hurts this morning. I feel extra tired and have that drawing pain in my lower legs again – which I attribute to blood pooling there and which had probably happened because I dared get out of bed a couple of extra times yesterday and especially baked cakes. Despite this, had to take some parcels round to the post office. These were large, but not heavy, so I took them on a trolley, but this was still too much effort, too exhausting and too painful.

Saturday 30 April 2011

ME Symptom Diary: April 2011

Bristol Dental Hospital
cc-by-sa/2.0 - © Thomas Nugent - geograph.org.uk/p/2597942

Friday, 1 Apr 2011

Rough night with pain – from outing yesterday – worse in neck, shoulders and upper back, but as ever, also notably increased in hip, knees and feet. Also exhausted and would prefer to spend the day resting to avoid a crash, but have a doctor’s appointment, so must go out again. Discussed medication and got repeat of Venlafaxine and Lyrica  [Pregabalin] – I hate it, it does zero for pain and the side effects are intolerable, but I have to show that I’ve given it long enough – plus a 2 week trial of Celebrex [Celecoxib], but if this is continued, then we also have to add protection against gastrointestinal complications (ulcers, I guess). If there is one thing that seems wrong on every level, it’s taking one drug to prevent harm from another drug. [Still, GP wouldn’t prescribe anything whatsoever until Rheumatologist made suggestions and, this is working down her list.] We had also discussed the idea of injections for the spondylosis, but I insisted that will not happen, as it would be hard to reverse if I had a bad reaction / side effects from those.

Saturday, 2 Apr 2011

Everything hurts. Neck worst and I’m exhausted. Bad night with vivid dreams again. Can’t stand at all. Pooling in legs with accompanying pain in my ankles and an overwhelming sick feeling as soon as I do. Spent entire day reclining or lying down, unable even to concentrate on TV.

Sunday, 3 Apr 2011

Woke up too early again – because of pain. Ran out of energy entirely by mid-day. Another day written off. Made it as far as the shop to get a sandwich (always hope a walk improves circulation), but even that short walk jarred my neck and hip and sent me horizontal to recover from the exertion. Leg pain really severe.

Monday, 4 Apr 2011


Still suffering after yesterday’s outing. Had only been standing for a few moments when the pain in my ankles and lower legs started. The now ever-present stabbing pain in my right hip was cranked up a gear and then a different stabbing begin in my already swollen and stiff knees. At the same time my head began to ache: a cross between stabbing and throbbing and, an overwhelming wave of sickness rose up and over me, bringing with it an even more overwhelming immediate need to sit or lie down – which I was obliged to do for the whole of the rest of the day.

Tuesday, 5 Apr 2011

First day of taking Celebrex [Celecoxib]. Made me tired, but did significantly reduce pain so that I was reasonably comfortable reclining. I sense, however, that this benefit will only work so long as I don’t do anything. In any case, I was too subdued (read: drugged) to concentrate on any activity.

Wednesday, 6 Apr 2011

Had a really bad, throbbing headache (migraine) this morning. Felt sick and could not stand bright light. Had to close the curtains, lie down hold my head. Could not take anything for it as I’d already taken the Celebrex, however, that wasn’t working on the pain (in my head or anywhere else) today either. Spent the morning lying down because of this headache. Spent the afternoon being unable to get up. By early evening I couldn’t even manage being reclined and had to lie completely flat and totally gave up on the day. 

Thursday, 7 Apr 2011

Not enough sleep. Pain and notable weakness in both hands and feet this morning. Left knee was very swollen and stiff last night and I could not click to release it, so the pain remained constant. Pain and burning in hip, despite medication. Counselling session in the afternoon was good, but lots of homework (that will be impossible to manage). While I was out, had to go to the station to buy my train ticket for next Monday. Walked home because it was nice weather, but I shouldn’t have done this as the pain and exhaustion afterwards was extreme. Exhaustion affected my balance so much I was bumping into walls. Have bruised and hurt my right arm and shoulder on wall in hallway.

Friday, 8 Apr 2011

Neck, back, hips, knees and feet all sore from yesterday’s walk. Bad headache again. Sore throat and feverishness – the usual post-exertional flu-like symptoms of malaise.

Saturday, 9 Apr 2011

Not too bad today, but I’m making sure I don’t take advantage of that to overdo anything. Just hip and neck pain at a bothersome level. 

Sunday, 10 Apr 2011

Despite sleeping reasonably well, despite being careful yesterday, woke up this morning with back ache so bad I thought it was broken; severe neck pain and hip pain and then I started going dizzy and getting chest pains as soon as I stood up. Can’t win.

Monday, 11 Apr 2011


Had to be up at 5:45am – when anything before 10am is way too early. However, I had an appointment at 10:20am at the Bristol Dental Hospital, which is THE ONLY NHS dental hospital facility for the entire of the south of England, 80 miles away in Bristol. Requiring someone with myalgic encephalomyelitis (ME) to make this journey for any appointment is entirely unreasonable, but what choice did I have? They gave me no choice either, other than the morning appointment and my dentist wouldn’t treat me without me seeing them. Snookered. 

So I caught the 6.51 train and, to be fair, made it in good time and with minimal stress, but there is no doubt that it made me utterly and totally exhausted. It was particularly difficult to deal with and I certainly couldn’t cope with understanding what was said at the appointment or properly advocating for myself. By the end of the day, I could hardly walk and the pain in my legs and feet was unbearable. Fortunately, I had somewhere to stay nearby (without this, frankly, I couldn’t have gone to this appointment at all), but got there and crashed, falling asleep on the sofa. Began to get a migraine type headache in the afternoon, but just had to hope it wouldn't develop as my hosts had organised for us to eat out.

Tuesday, 12 Apr 2011

Definitely did too much yesterday. The impact of the pain was reduced by getting a good 12 hours sleep, but the post-exertional malaise, sore throat, and flu-like symptoms were as bad as they ever get. The migraine came with extreme nausea and a tight band around my head. Couldn’t stand to read, nor look at a computer screen. Got up to get water to take my medication, but had to lie down again immediately and hold my head to stop the pain. Slept for most of the day, on and off. Got up to eat some dinner, but went straight back to bed again.

Wednesday, 13 Apr 2011

Still got the migraine that began developing on Monday. Had to take a Beechams, plus 2 more Paracetamol in addition to the Celebrex, but dare not take more or anything else. Cannot shake this, nor the accompanying nausea. Feel too ill to sit up again and cannot read, look at the computer or even TV. Slept for a short time during the day, but mostly just had to lie flat and try not to be too aware of my symptoms. Back back and hips were so painful, there was little chance of that.

Thursday, 14 Apr 2011

Woke up at 4am this morning after the last 2 days resting. Was taken out to lunch and shopping, but this was really too much for me and I couldn’t enjoy it, but didn’t like to complain.

Friday, 15 Apr 2011

Knees hurt dreadfully today and am tired from such a – relatively – long day out yesterday. To be expected after a day out, though less than usual as I’d been taken out by car. Taken out to do yet more shopping this morning, which would have been OK, if we hadn’t been standing and waiting around. This began the pain in my legs again, so I was glad to lie down again in the afternoon.

Saturday, 16 Apr 2011

Travelled home from Bristol on the train. Neck and knees were painful this morning. Neck, back and shoulders suffered most from trying to manage my bag (basically, I can't manage). Had to walk home from the station, which taught me that I would never be able to manage a shopping trolley too. Got in and crashed and didn’t even have the energy to unpack my bag.

Sunday, 17 Apr 2011

Back to normal: pain and stiffness everywhere and had physical difficulty getting out of bed and getting to the kitchen. Headache, sore throat and post-exertional flu-like feverishness. Pain in legs bad again after so much standing and sitting, as well as in hip, neck and shoulders. Joints clicking painfully again.

Monday, 18 Apr 2011


The better for deciding to rest yesterday with no items assigned from my to-do list. Pain and fatigue levels were tolerable today. With careful pacing, I could keep them at this level, PROVIDED I’m permitted to keep activity and stress levels down. This, of course, is impossible. The moment mother came home, the whinging – about matters that were of no concern or application to me – started. She constantly pushed open the bedroom door and interrupted my rest to tell me something I did not need to know and was of no interest to me. Where I had felt quite content, I began to feel incredibly stressed and began to develop yet another headache. This sounds like nothing here, but she is impossible to ignore, will not stop and it’s like some sort of drip, drip, drip torture.

Tuesday, 19 Apr 2011

Neck pain got bad again once pain relief effects ran out. It was not improved by sleep. Stress and melodrama from mother is definitely not helping.

Wednesday, 20 Apr 2011

Had trouble getting comfortable in bed last night. Everything feels tender and bruised. Hip and leg pain particularly troubling, preventing me from finding a relaxing position in order to be able to fall asleep. Wrists, hands and feet all feel weak and painful today too.

Thursday, 21 Apr 2011

Incessant coughing with chest pains – coincides with weather warning for asthma. Glands swollen in neck and sore throat. Pain in hands still disabling. Legs and feet still painful. Everything is an effort, physically due to the pain lack of energy. Counselling appointment in the afternoon, so I had to walk there and sit for a long time. Can only hope that the benefits of the counselling will outweigh, but just getting there does cause considerable pain and fatigue in the following days.

Friday, 22 Apr 2011

Didn’t get to sleep until after 4am because of the pain caused by the outing yesterday. Cats still wanted breakfast at 9am, so I wasn’t able to get enough sleep. Spent the day doing nothing, slowly, as I was too tired and strung out even to be able to move, much less concentrate.

Saturday, 23 Apr 2011

Slept OK last night, once I’d remembered meds at about 1am, but still wasn’t able to get enough sleep to make a difference. Whilst pain is a little better today, I’m still exhausted and extremely woozy.

Sunday, 24 Apr 2011

Woke up early – why, on a Sunday? This means my meagre energy will run out that much earlier. Hip is uncomfortable. Bad headache with disturbed vision.

Monday, 25 Apr 2011


Yesterday couldn’t keep awake and felt like I was going down with something (flu-like – usual post-exertional malaise). Woke up today aching all over, sore throat, splitting, feverish headache, swollen glands and a COLD SORE. Couldn’t stay awake and fell asleep after I’d struggled with just two hours of semi-consciousness. Woke up for lunch, then went back to sleep again in the afternoon. Woke for a short time in the early evening, but was ready for bed again by 8pm. Felt really unwell, so being asleep was really the only way I could cope with it.

Tuesday, 26 Apr 2011

Slept all night last night, despite sleeping for much of the day yesterday and the day before, but still feel flattened and unwell. Ache and hurt all over and still got the sore throat and feverish headache that always come with Herpes (Cold Sore). Had trouble getting comfortable – legs and foot tender and joints all felt swollen and wanted clicking to release them. Despite this was able to sleep all night.

Wednesday, 27 Apr 2011

Woke up at around 10am – which is perfect for me – but feeling exhausted. Once more I have the sore throat, swollen glands and feverish headache – everything I used to get with tonsillitis, except the pus on the tonsils. Feel generally unwell like with the flu. Ache all over. Joints still feel swollen. Hands tender. Feel nauseas and shaky as soon as I stand up. BUT, I had an appointment with the GP in the afternoon, so was obliged to drag myself out feeling like this. Worst experience of the day was in the Post Office (after I’d been to the doctor). Only one window was open and the employee behind it was chatting, endlessly, to a friend. Even though there was no queue, other than myself (the only reason I even dared risk this), she completely ignored me and the extra wait on the feet caused immense pain in my lower legs.

Thursday, 28 Apr 2011

Ultimate cruel irony: pain meds today are not working against the extreme pain caused by having had to go out yesterday to get my pain meds! Woke up with pain in my knees and lower legs, as is normal after any outing, but I do think it has been made much worse by that standing incident in the Post Office. It is a classic case of society causing disablement. Really need someone to do these jobs for me, or I need someone to push me around in a wheelchair so that I can visit these places. And, it isn’t lunch time yet, but I’m exhausted already, strung out; my eyes are hurting badly, I’m unable to concentrate and have yet another headache. Despite which I have to drag myself out once more for a counselling appointment in the late afternoon that I won’t be able to concentrate at either.

Friday, 29 Apr 2011

Post-exertional crash after the succession of outings is so bad, I couldn’t even update my diary for this day.

Saturday, 30 Apr 2011

Dreadful backache today. Woke up stiffer than usual and my hands were swollen and my rings tight. Joints also felt swollen all over and were painful. Any movement is excruciating.

Monday 4 April 2011

A morning ritual

I’d only been standing for a few moments when the pain started in my ankles and lower legs – from the blood pooling as my heart is unable to effectively pump it upward. The now ever-present stabbing pain in my right hip is cranked up a gear and then a different stabbing began in my already swollen and stiff feeling knees. At the same time, my head began to ache; a cross between stabbing and throbbing, with a bit of compression thrown in for good measure and an overwhelming wave of sickness rose up and over me, bringing with it an even more overwhelming immediate need to sit or lie down.

The discomfort is so severe, it causes me to catch my breath and I have to concentrate hard to hold on just long enough to get my cup of coffee. The pain in my neck and back were already severe, but as I held the cup under the spout, my arm and shoulder started to go weak and hurt. It seems like it takes an eternity. It feels like torture. These days I use cups and saucers, not because I’m posh, but because after I’ve had to stand to get the coffee, I shake too much to carry it without spilling some. My balance is off, so I walk into walls and doorways and the increasing weakness in my arms makes even the smallest items too heavy.

Now that I’m lying down again, I’m having difficulty focusing my eyes, focusing my thoughts, composing these words – but I want to get it down immediately so that I capture the true horror – and I’m shaking even more from the exertion. Not a particularly marked shake, but still a discernable tremor in my hands. More apparent, to me, is the feeling that my brain is “shaking” – I assume this is actually pulsations as my heart overworks to get blood to my brain – inside my head, making me feel all the more sick and unsteady.

Yesterday morning it was sunny and so I decided to walk round to the local shop and get a sandwich for lunch. It’s only about 400-500 yards, but I get about a quarter of the way these days and wish I hadn’t started. It feels like climbing Everest: it seems to take forever, but I push myself on reluctantly, every step jarring my neck and sending sharp stabbing pains into my hip. I always get home exhausted. Yesterday was no exception. I ate my lunch. I didn’t even have the energy to eat the treats I’d bought myself too before I had to lie down, but I was in too much pain and beyond tired to be able to sleep, so I just had to lie there and try to find a comfortable enough position.

My neck and back hurt too much to sit up or even recline at a low angle. I had to be flat enough with just one pillow to support my neck and try to lie on my side so that I can still, just, watch TV on the Laptop, albeit that it appears at a 90 degree angle from true. It doesn’t really matter what’s on. But the pain in my legs has become so severe that I can’t lie like that. The pain in my knees, which feel swollen and almost like bruised, mean I cannot rest one leg on top of the other. The pain in my foot is so bad that I can’t bear to even lay that on the bedclothes. I try another pillow, another angle, dangling it off the side … nothing works. If I find something acceptable for my foot, it pulls on my hip joint and makes that even more painful. The painkillers I’ve taken make no difference. So I spend the rest of the day in a sort of trance, just trying to stay in a position that doesn’t hurt too much. I’m still not aware of what was on TV.

At about 8.30 p.m., I get up to get a cup of tea. I feel too ill and can’t stand long enough to get food, so I don’t bother. I come back to bed, take my medication, which means I will be able to get some sleep. That was my whole day.

Saturday 2 April 2011

Laziness versus Pacing

Laziness versus Pacing

It suddenly struck me when I saw this LOLcat image that this is how others view us. Pacing: stopping well short of what you might be able to do to avoid exhaustion and flares is extremely important to sufferers of fibromyalgia and ME/CFS. My occupational therapist at the Pain Management Centre had spoken to me about it, saying I should aim to do half or two-thirds of what I think I can manage and gradually work up towards doing more. [No I shouldn't, but ...]

She says I need to pace better (how, exactly?) when I mention the 1 mile walk that is too much for me, but for which there is no alternative as it’s a mile to town, a mile to the bus stop, a mile to the train station, a mile to the doctors’ surgery … This means I can only go out once in a while, for essential appointments, which send me hurtling into mega-flares, then rest for days / weeks, rinse repeat.

All of the rest of the time, at home, I’m either too exhausted to do anything, or I’m pacing well below my capabilities in order to save up some energy for the next outing; not fun ones, mostly just hospital and doctor’s visits.

This latter is called “laying around” to anyone else. They think it’s laziness.

They should try to live a day with the amount of pain and fatigue we have: they wouldn’t be pacing, they’d be demanding the euthanasia pills!

Thursday 31 March 2011

ME Symptom Diary: March 2011


Tuesday, 1 Mar 2011

Woke up feeling like I hadn’t been to sleep. Sore throat and feverishness; burning, gnawing pain in my right hip; have a really bad headache with shooting pains right up the right-hand side of my head and that is not responding to 440g of Naproxen. Hot and cold like flu symptoms too. Neck pain worse again, probably from lifting and pulling the trolley with the portly feline yesterday.

Wednesday, 2 Mar 2011

Awake half the night – woke up at 1:30am, then again shortly after 3am – when I was then wide awake. Played games and watched TV waiting to get sleepy again, but it wasn’t until 7:30am that I was able to get back to sleep again. So then slept until mid-day, but woke up feeling like I’d been run over by a truck. My entire body is utterly fatigued, feels heavy and sluggish. It’s taking supreme effort just to get to the kitchen and back. Pain in my lower legs is increasing again. Also woke up with a severe, pounding headache. Dare not take any further pain relief, as that a) doesn’t work and b) has once again made me severely constipated, adding to the pain. Have also got a sore throat again and the patch of tender skin on my right foot is especially sensitive.

Thursday, 3 Mar 2011

Actually slept through the night! Woke up only averagely knackered with mild to middling aches and pains all over. Also seem to have half a brain today, but am resisting the temptation to resume activities, because it would soon take me back to agony and exhaustion. But, have been able to make a couple of short phone calls and answer some messages. Spoke too soon … by lunch time, as soon as I got up, I felt light-headed and unsteady, so back to the default position (reclining), rather than fall on the floor again, which is what would happen if I were to push myself. Also experienced some chest pain again, I thought it best to remain resting to prevent that becoming worse. Chased the chemist over prescription delivery. It seems they had judged me fit and not worthy! 

Friday, 4 Mar 2011

Slept, but had been dreaming so vividly and busily, I woke up absolutely knackered from all the activity. My knees are particularly uncomfortable today, as well as the usual neck, hips and the rest. Burning and tingling in hip again. Extreme nausea and physical fatigue. Feel like my back is broken and cannot manage to sit up without listing and need carefully placed cushions to support me, yet it is now even painful and difficult to move those cushions into position.

Saturday, 5 Mar 2011

Woke up fatigued and achy, but a better day than of late. Actually the first not-so-bad day of the year so far, which is not that great.

Sunday, 6 Mar 2011

Really couldn’t wake up this morning. Feel like I’ve been flattened by that proverbial 10 ton truck again; limbs heavy like lead, movement feels like it’s through molten concrete, dragging a heavy weight. Snuffly and achy with cold.


Monday, 7 Mar 2011


Had to get up early, which took supreme effort. Really needed more sleep and found it difficult to get out of bed, but had to take the boy [Balu] back to the vet again. Could not stand at the bus stop and had to sit on the roadside, as I felt dizzy, light-headed and sick. Every step of walking hurt – like a knife stabbing into my hip joint. Got home exhausted with burning pain right down my right thigh. Knees ache. Back feels broken. Neck pain off the scale. Mega headache. Really couldn’t do anything in the afternoon and had to lie down until beyond 7pm. Had to fight to stay awake until a reasonable time to try to avoid starting a cycle of insomnia. Lasted only until 9pm is and couldn’t even concentrate on banal TV.

Tuesday, 8 Mar 2011

Woke up early, long before 8am, though I dozed again, but had slept very lightly all night and woke up with tired, sore eyes and feeling strung out like I’d pulled an all-nighter. Hip pain is unbearable again, as is neck pain, mostly from the cold and the jolting of the bus and just having spent some time not reclined and supported. Knees stiff and sore from the walking yesterday and back still feels broken.

Wednesday, 9 Mar 2011

Lyrica [Pregabalin], which I started on Monday night with just 25mg once a day, rather than the twice a day as prescribed, because of my tendency to to have severe reactions to drugs, totally knocked me out last night. Slept heavier than normal, but had to remove a 10 ton elephant off me before I could move this morning. So, either I can’t function because of pain and poor sleep, or I can’t function because I’m drugged up to the eyeballs. 

GROSS ALERT: Discovered a small piece of loose scab and removed it from inside my navel. This is the first time this raw, sore incision – from a laparoscopy in 1986 - has ever formed a scab in 25 years, which gives you an idea of what I really mean when I say that I heal very slowly.

Thursday, 10 Mar 2011

Slept too heavily last night and woke up in much more pain and stiffness than usual, neck pain particularly. Site of scar on navel VERY sore today and constantly itching.

Friday, 11 Mar 2011

Major attack of IBS this morning with considerable pain. As usual, as soon as I thought I’d finished, along came another ‘contraction’ and off it went again. Was on the loo for 45-60 minutes. This left me feeling weak, exhausted and unwell. Stomach as sore as if it had been kicked and bruised. [As ever, any pain medication causes constipation and my system gets into a vicious cycle of boom and bust and the end result is more pain, not less. It seems a pointless exercise to me.] Tried some ‘easy’ isometric (not moving) exercises for my neck. Kept it to just 3 repetitions, holding just for seconds, but this still caused an awful increase in pain around my neck and shoulders.

Saturday, 12 Mar 2011

Felt crap again [pun intended]. Had to get up in the night, but also woke up too early, despite still being very tired. Can’t stop yawning. Joints stiff and painful. Hip burning. Dizzy every time I stand up.

Sunday, 13 Mar 2011

Pretty crap again. Weather humid, so stiffness increased, stabbing pains in joints, as well as their usual soreness. Headache and pain in left kidney that always resurfaces any time I’m particularly tired.

Monday, 14 Mar 2011


Woke early, but feeling like it was mid-day – this is probably because of the mornings getting lighter, so I must see about doing more to black out the room, or I’ll spend the whole summer with severe sleep problems again. Also had very vivid, active dreams again, so I woke up feeling physically tired from all the “exertion”. Very achy, especially in my knees. Severe burning pain in hip and thigh again. Had to take the cat back to the vet again for a check up and hurt myself badly trying to carry him on my back. Had to ask for a glass of water in the vet as I felt so unwell. Severe neck pain. Was unable to move once I got home.

Tuesday, 15 Mar 2011

Woke up early again. Pain and numbness in hands and feet. Neck pain WAY off the scale from yesterday’s exertion. Today was the first day of taking Lyrica [Pregabalin] in the day time. It made me totally spaced out and unable to stand up. Had to spend the entire day laying down because of this and because of post-exertional malaise. Fell asleep in the afternoon and did not wake up until early evening. Reaction is not quite as bad as it had been with Gabapentin, but I still don’t see the point of spending life as a zombie, for little or no benefits. Pain in my legs is still utterly unbearable and this seems to be an effect of the Lyrica reported by others (which again, seems to render it counter-productive).

Wednesday, 16 Mar 2011

Woke up early again, stiff and with pain and numbness in my hands and feet again. Once more, felt knackered before I start – I mean, I always foo, but more so than normal – and before I took the Lyrica again in the morning. Once I had taken it, I was a non-functioning zombie yet again with no choice but to lie down and hope to stay awake until a reasonable time. Pain and stiffness in my knees and ankles at night was particularly bad. The Lyrica also seems to be making me constipated again and has increased stomach pain.

Thursday, 17 Mar 2011

Another crappy day: Woke up tired and stiff, but wasn’t so bad until I took Lyrica. Since then I can hardly stay awake and am very light-headed, staggering and swaying whenever I get up. Pain in neck and shoulders is still unbearable except when relined, supported. Tried to open a bottle of vinegar, but did not have the strength and this caused severe, shooting pains up into my neck. Earlier had brushed cat and swept a small area of carpet, but had to lie down afterwards and was sweating profusely and shaking from the exertion, which took until late morning to subside. Hands and wrists painful again. Writing hurts particularly today. Have mystery inflamed scratch on left arm that I don’t remember getting. Burning pain in hip and upper thigh again.

Friday, 18 Mar 2011

Forgot to take medication until late last night, so couldn’t get to sleep. Woke later than I have been doing, in compensation, but woke with the mother of all headaches, with terrible neck pain and extreme nausea. Had to lie down as this was unbearable and it also made me extremely sensitive to light – if I looked towards the window or computer screen it made me even more nauseas. The headache only began to go in the afternoon. Had to go to the local Post Office, but because of the “stupefying” effects of the Lyrica, I was swaying and staggering around the streets like a drunk, being absent-minded and getting in people’s way in the shop and also found it difficult to make my purchases, count money, etc. Felt very confused and vulnerable. As well as being intolerable, this is too dangerous and I won't be leaving the house under these conditions again.

Saturday, 19 Mar 2011

Didn’t get to sleep until around 3:30am and today my knees feel like they’ve walked a couple of miles or that I’ve not been to sleep at all and are so painful and clicking and feel as if they’re swollen. Had to keep stretching my legs out in bed as they cramped up in pain. House cold again, so my thighs went into spasm as soon as I went to the kitchen – this usually only happens out doors in winter temperatures. Neck still too painful to sit unsupported. Ankles, like knees are stiff and clicking. Hip pain with nerves burning again.

Sunday, 20 Mar 2011

Yesterday, put my hands down beside me to push myself up into sitting position and my left wrist just gave way and bent back on itself with a mighty crack. Super-mega painful. Today the pain is worse and I have no power in it. Can’t lift coffee cup or turn a tap. (Can’t put support on wrist as it caused my skin to split last week.) Neck painful, as usual. Dizzy on sitting up, as well as standing.

Monday, 21 Mar 2011


Eating breakfast, my entire face hurt. Stiff, painful and tired when I woke up. Although pain generally helped by Voltarol (Diclofenac) gel, there’s a sharp, stabbing pain in my left wrist if I try to use it, even to try to type even a few words. I also have a severe headache and a sore throat again. Put one load of laundry in the washing machine and a packet mix into the bread machine and just these minor activities in combination with making breakfast (cereal) and going to the loo (not even washing) have caused me to shake from the “exertion”. This is along with extreme nausea and overheating with excessive sweating. Had to lie down with the fan on for most of the rest of the day to try to subdue this.

Tuesday, 22 Mar 2011

Had trouble getting to sleep last night. Still woke early this morning: too early, not enough sleep to be functional and feel so tired that I’m already fighting to stay awake and semi-upright. Woke with headache, backache, neck ache and a burning, aching, twinging in my hip, thigh and right down my right leg. Ankles and feet also painful. Then I got a sharp, shooting pain in my left chest – severe enough to require breathing to control it. Pain in the wrist still stabbing too, which is made worse if I try to use it, which is pretty much any movement at all. Had an appointment with Dorset Pain Management Service today. Walk to the station was excruciating: sharp pain in my hip every time I put my foot to the floor. Arrived sweating and fatigued, balance gone and unable to walk straight. Noticed that I was listing towards the edge of the platform and staggered involuntarily. [This has to place me in danger from falling, as well as from attack / abuse from people who will perceive me as drunk.] On the plus side, the meeting with Mrs Das was good: she does not think I need psych help [Well, nor did I for pain / fibromyalgia / ME]. She says I’m balanced and have my life in order! 

Wednesday, 23 Mar 2011

Pain, especially in my legs, kept me awake last night and got me up early this morning. [As is always the case when I’ve had to go out and have walked any distance.] Possibly the worst pain I have ever experienced after an outing and certainly the most generalised. Impossible to describe, but overall aching, with a feeling that every single joint is swollen and every single muscle is pulled, with random shooting pains in muscles, joints and head. Headache, sore throat, feverishness. Back and neck are both in major pain. [You’re not missing the irony here that this was from an outing to a Pain Management Clinic?] Today had an appointment for a Counselling Assessment (it wouldn’t have been my choice to have them on consecutive days), so I got a taxi there. Appointment went well, but was emotionally very tiring. Walked back to the town centre, but this was really too far for me and served to wipe me out entirely. Once I got home, I ceased up entirely.

Thursday, 24 Mar 2011

Woke up too early – because of the pain – after dreaming too vividly during what seemed to be very light and non-restorative sleep. Headache, overall pain, burning aching and stiffness. Feel too tired to undertake any activity today. Even just standing up makes me dizzy, exhausted and nauseas. Was still dizzy and nauseas lying down. Had to make myself a nest of pillows [more like a padded cell] because I felt like I was falling, even when I was lying flat and wasn’t moving. Couldn’t even watch TV, because the moving pictures gave me a headache and made me feel sea-sick. Went to sleep in the afternoon and didn’t wake up until 7:30pm, but still managed to sleep through the night. Pain levels remained high, but I was so exhausted, I was able to sleep through them. Also had feverishness and a sore throat – took a flu powder to hopefully help reduce these symptoms.

Friday, 25 Mar 2011

All the usual aches and stiffness and woke up too early, too tired, yet again. One source of additional discomfort is that I have become constipated again. Considering the amount of fruit and vegetables I eat, plus psyllium husk supplements, this is a considerable worry, as well as a major discomfort. As well as generating more headaches, I am always aware of an increase in overall aching and stiffness, as though my body is harbouring poison (toxins), which, I guess, is pretty much what it is doing. Became too tired to do anything even remotely constructive quite early in the day.

Saturday, 26 Mar 2011

Didn’t get to sleep until 5am. Was very tired and strung out, but just did not feel sleepy. Only went to sleep in the end, because I was utterly exhausted. Woke up around 10am, which is not enough sleep, in a lot of pain. From experience, I know that I could crash very painfully and quickly once I have reached this state, so I know it’s important that I pace myself very carefully to avoid a long-term crash. Had another mega IBS attack. [Always follows a few days of constipation, which is why I work very hard to avoid it and the boom and bust cycle.] At one point I nearly blacked out – my vision certainly greyed out and I became light-headed – from the severe pain.

Sunday, 27 Mar 2011

Feel like I’ve got a fever with gripping headache, sore throat, going hot and cold, heightened aches and pains (in BOTH hips and burning in thighs), light-headed, dizzy and unsteady on standing, with extreme nausea and shaking, as if from exertion. Last night was drifting in and out of consciousness, with waves of overheating, pain and nausea. Had to breathe to keep control of it, but it was so bad, I really thought I might need emergency help. Feel really unwell today. Had to get on the floor in the kitchen, because I nearly blacked out again. Light-headedness continued all day. Could not sit up because of this level of sickness and because of severe pain in back and legs.

Monday, 28 Mar 2011


Slept better last night with both Lyrica [Pregabalin] and Melatonin (supplement), but pain levels still high in neck, back, legs, feet and wrists. Headache is intermittent [that’s a rare and distinct improvement]. On Jan 8th, I wrote that I wanted to change the bed, clean my room and sort my wardrobe. I am YET to do this and haven’t yet had a day where I could stand or had the energy to do so. And today isn’t going to be that day either. Whilst I'm able to accept that this is just the way it is and it would not worry me alone that the mess is, inevitably, building up, once more I am being put under pressure, because my mother makes a point of being disapproving. She isn’t able to – or does not wish to – comprehend that I simply cannot do what she wants, when she wants, just because she wants it. And making that obvious, constantly, does nothing whatsoever to help.

Tuesday, 29 Mar 2011

Woke up in pain from head to toe. Cannot stop yawning. Otherwise, didn’t start off as such a bad day, relatively. Walked round to the local Post Office in the afternoon and, once again, felt dizzy and had trouble keeping balance and walking in a straight line. Fell asleep as soon as I got home.

Wednesday, 30 Mar 2011

Woke too early, too tired to concentrate. Pain in neck, hip and legs very bad again, made worse because of humidity (rain). Stiffness and shooting pains – random and in joints and / or muscles. Snuffles and sore throat and general feverishness as if I was going down with something, like flu. This is getting more and more frequent and although there are (as usual) no outward signs, I feel so unwell that all I can do is lie down to control it and wait for it to improve (hopefully). By mid-afternoon, I was even unable to recline. Constipated again! Don’t seem to have been able to get back to any normal (normal for me anyway) routine since Christmas.

Thursday, 31 Mar 2011

Woke up tired, achy and just feeling unwell – headache, feeling sick and queasy, feverish and trembling (that brain shaking in the head feeling), all of which is difficult to describe, but I can only cope with if I lie down. Once again, after a couple of days of being constipated, a massive attack of IBS this morning. Pain wasn’t quite as bad this time, but still required me to pant / breathe to deal with the strong contractions, like someone giving birth. Waves of malaise – which I can only say feel like waves of poison in my body – made me feel worse. At a couple of points, my vision narrowed in and I began to grey out and I felt myself swaying as I almost, momentarily, lost consciousness. As ever, the whole ordeal (onslaught, genuinely felt like I’d been attacked), left me feeling weak, tired and utterly wiped out. And, despite all this, had to go out to a counselling appointment in the afternoon.

Wednesday 30 March 2011

Duvet days are necessary rest not laziness

Duvet days are often necessary rest

"Today I'm in so much pain I just want to cry because nothing will mitigate it. The pain is so bad I feel sick. My head hurts. I feel like I have a fever. It hurts to rest my hands on the laptop to type this and it's taking me ages as I type just one or two phrases at a time, then it's too painful to continue or my mind loses the plot and I forget what I wanted to say. My arms feel heavy and weak, my neck and shoulders feel pulled, my back feels broken, the pain in my hip is more than I can bear, my knees feel swollen and it hurts to walk on them, the muscles down my back and legs feel pulled, making it hard to get up off the bed - but my wrists and arms can’t push me either - and it’s painful even to sit on the loo. My feet feel raw as if they’re blistered and have no skin on them and it's painful even to rest them on the surface of the bed. Every time I get up, my joints click and bang painfully, I feel more nauseous and hot and thirsty; I shake from the “exertion” of just getting to the kitchen and back and I feel totally exhausted." 

Just taking some light packages round to the post office caused this. This happens at least once a week and the effects can last for days, when the only thing I can do is lie down and rest and wait and save up my energies for the next outing.

My mother calls this “lying around” and even told the neighbours that, because that’s what they accused me of doing, when they accosted me and verbally abused me in the street. (And later threatened me with violence.) 

My mother thinks that I “lay around” deliberately for no genuine reason, because she is a narcissist [1] who has spent her entire life wheedling, manipulating and exploiting people and situations so she could get away with putting in the least amount of effort possible - in other words, by being lazy. It became obvious that she's judging me on her standards and projecting her own faults onto me.

She refused to read the information I gave her about fibromyalgia and ME/CFS, but then tried to excuse her ignorance, by saying that she did not understand what these illnesses were. When I said that the only thing I’d ever done wrong was to not complain enough so that she would understand, she jumped, eagerly, on my words and declared that this was it: it was all my fault.

Funnily enough, I don’t blame her for not “seeing” my disability, because in that sense she's only the same as the majority. Most people, if they don’t see a wheelchair and permanent paralysis or a missing limb, fail to see any disability. But we’re not talking about people who are only unaware when they pass an invisibly disabled person in the street, we’re talking about her own daughter. 

The evidence was there under her nose, she just chose not to see it.

Even if she didn't understand my illness, she could have asked. But she didn’t, she rushed to make wrong assumptions and then told people a bunch of untruths based on those false assumptions and when those people heard those things, that they assumed were true - which says they’re no better than her for accepting a one-sided view, without checking for themselves – but then they advised her against me, attacked and bullied me, based on that false information. She succeeded in creating conflict that made her the centre of attention. 

She also decided that I must be lying. It was an accusation she screamed and shouted at me, whenever she had either forgotten or chosen to forget something dreadful that I reminded her she’d said and she then tried to deny. 

It took me over 50 years to realise that she lied, constantly, pathologically.

When she finally seemed to accept that I've felt ill for years, the best response she could come up with when I've mentioned a particular symptom is to say that she has the same (or worse, naturally). No she doesn't. If she did, she’d be constantly whining about it. She certainly wouldn't be able to work two mornings a week, go shopping several times a week, do her own gardening and housework, all of which she does, only slightly slowed by the fact that she's 87. She simply won't allow me to be ill. She is ill, of course, and believes herself entitled to the best treatment and sympathy, just no-one else is … It would detract from her.

And to make her point even more pointedly, whenever we're in the same room – when she remembers – she huffs and puffs and makes moaning noises and grabs hold of the furniture and pretends not to be able to walk terribly well unaided. Strangely, when she thinks I'm asleep or can't see or hear her from my room, she does none of this. When she's outside or in other parts of the house, I hear her perfectly normal footsteps and the total lack of moaning or heavy breathing. 

She walks just fine out in the street. Hilarious how she seems oblivious to the fact that I’ve seen her there. All I can see and hear is an attention seeking child. 

At other times, when I mention how ill I feel, she will say nothing and walk away, offer no sympathy and no help. Won't even bring me water when I’m thirsty.

She once told me that, had she had the choice, she would not have had children. But, of course, she later denied having ever said that, like she denies saying anything that she KNOWS is horrible. It was no doubt deliberate and she probably thought that saying that she didn’t want kids would be hurtful to me, though curiously, it wasn’t. Some people are not cut out to have kids and shouldn’t be allowed to hurt and abuse them and she is one of those people.

Most galling, but also the most pathetic aspect, is her total abdication of responsibility: her false and ridiculous assertion that she did not have a choice. Of course she had a choice, even if that choice meant not having a marriage as she seemed to infer would have been the result of this so-called non-choice. (I’m sure it wasn’t as I’m sure she had my father well and truly manipulated.) But even it that were true, if not having a kid was so important to her, she’d have chosen that. But no, she chose insure her meal ticket, by dutifully producing a sprog, despite not wanting to do so and then trying to fool everyone, including herself, into believing that it’s somebody else’s fault that she became a “victim.” 

The victim card is one she continues to play. No one thinks the sweet older woman can be vindictive, menacing, and ruthless. Nor do people expect mothers to be so self-centred that they are willing to abuse their own children.

[1] I'm not bandying the term narcissist about, as seems fashionable. This is a professional opinion that has been discussed in a clinical setting. I also have evidence from conversation with my mother to believe that either she has been diagnosed, or at the very least, accused of it to her face by another person.

Monday 28 February 2011

ME Symptom Diary: February 2011

Perch style bus stop: utter torture and adds inaccessibility to disabled people.

Tuesday, 1 Feb 2011


Stood up for no longer than 2 minutes – probably less – while talking to a visitor at the door, which increased to pain in my lower legs, ankles and feet yet again. Standing ‘this long’ also made me breathless. Immediately after this ‘exertion’ I began shaking. This took maybe half an hour to subside, but didn't disappear until after I’d eaten lunch. Even so, the general malaise and nausea lasted right through into the evening. Tried to read a book today: can’t hold a book for any length of time, because of weakness and pain in my wrists; can’t support a book on my knees, because raising my knees increases the pain in my lower legs and feet; can’t rest the book on my stomach because of extreme tenderness from a laparoscopy scar (laparoscopy done in 1989) that just won’t heal and, can’t concentrate sufficiently for more than a paragraph or two. Gave up.

Wednesday, 2 Feb 2011


Tried to do a modicum of housework as mother coming home from the hospital today (hey, I tried!), but I had to do only small tasks then sit down again, as I became exhausted, breathless and began shaking from the exertion after only a minute or less, at the same time overheating and sweating profusely, becoming nauseas and my head began spinning. The movement – just walking around the house – also caused my hip pain to flare up and worsen again.

Thursday, 3 Feb 2011


Actually slept and didn’t feel quite as exhausted as usual when I woke up. Knees were very painful, stiff and felt as if they were swollen again, however. Energy did not last. By mid-day, gave up and was only able to half-watch banal TV again.

Friday, 4 Feb 2011


Peeled one apple. Standing ‘so long’ to do this made me so light-headed and dizzy that I had to sit down. I’d slept OK, but I just could not move in the morning and just could not stop yawning. Was particularly stiff with flu-like aches all over.

Saturday, 5 Feb 2011


Ditto yesterday’s symptoms. Too unwell to do anything.

Sunday, 6 Feb 2011


Today hip and lower leg pain off the scale again. Was dizzy and light-headed as soon as I stood up out of bed. Nausea. Headache. 

Monday, 7 Feb 2011


Could not move this morning. Pain everywhere. Was tossing and turning in the night, trying to get comfortable, but every position hurt. Could not lie on hip (R/H), but could not lie on left as I could not place right leg on top of left because of pain in the left knee, nor place the left face of right foot on the bed because of the pain and soreness on the toe joint. Can hardly straighten up to walk. Hip, neck, back and legs are all in agony again. All joints are clicking and banging painfully. It hurts to move even to get out of bed or to rearrange and position myself in bed. It hurts to lift the laptop from bed to lap. It hurts to have laptop touching my legs and stomach. And I have a headache. By 3pm I could do no more: I mean I could not even manage a reclining position and had to lie flat to half-watch TV. Fell asleep in the early evening, but slept through the night as absolutely exhausted from the pain.

Tuesday, 8 Feb 2011


Woke up even stiffer today and could hardly shuffle, let alone walk and keeping balance was difficult. Left shoulder is frozen – it had been years ago in Tenerife, when my left arm was numb for months – with pain and weakness back in both wrists and hands. Could not even open a jar of honey (not even a new one), nor carry a cup and saucer. Pain in hip and legs still bad. Still hurts to have laptop on legs / stomach. Now also hurts to type or operate mouse. Starting to get deep pain in left kidney area again and to feel sick. Made lunch and was almost too knackered to eat it. Want to hoover the floor, but dare not expend the energy. It’s sunny and I need to go the Post Office and I would like to go for a walk, but I know that this would be too much for me today. There is a shaking storm going on in my brain and I can feel my pulse in my head constantly. I keep overheating for no good reason, feel as through I have a fever and am coming down with flu again – post-exertional malaise, this time without recent exertion.

Wednesday, 9 February 2011


Had real trouble waking and moving this morning and felt like I hadn’t slept. Pain in hip is radiating down into the top of thigh, burning a ‘fizzing’ feverishly. Both thigh muscles are tight in spasm. Knees sore. Joints clicking and painful. Everything sore: throat, muscles, skin, et al. Feverish headache, neck pain and nausea. Dull pain in kidney again. Once again dizzy and feel sick and have to lie down again immediately if I even try to stand up. Once again, can only accomplish small tasks that can be accomplished lying flat (which, obviously, is not much). 

Thursday, 10 Feb 2011


All the usual aches and pains and feverishness, plus mother bitching about what she ‘wants’ and says she doesn’t care that those things make life harder for me. She’s fed up with the ‘inconvenience’ of my ‘illness’. Then she said the latter is not the case, but her actions tell another story. [She refuses to believe I’m ill.] As usual, it would be hard to prove whether she was being ignorant or malicious, but whichever it is, the stress this adds for me only makes matters worse.

Friday, 11 Feb 2011


Accumulation of the last few days’ physical downs, plus the emotional stresses made this a day where I was unable to achieve anything.

Saturday, 12 Feb 2011


First day in forever that I woke up feeling half-human. All the usual aches and pains, and tired, as ever, but felt better than the usual really unwell. Of course it didn’t last! Standing for only a minute or so to throw some ingredients into a pan for lunch (plus the walk to the kitchen and back) were too much. Enough to reactivate the pain in my hip, pooling in my lower legs, breathlessness, headache and the usual overwhelming need to sit back down (before I fall down). By mid-afternoon, I had to lie flat and fell asleep. Woke up with a sore throat, swollen glands, feverish headache, aches, herpetic tingles ...

Sunday, 13 Feb 2011


Had to take constipation relief last night as I’d not been to the loo for a few days and the resultant headache was mounting. Reacted badly to that medication with a dreadful stomach ache. That had not happened previously. Today I couldn’t wake up and my joints are clicking painfully. Already feel exhausted before the day starts. Decide to rest so that maybe I will recoup some energy.

Monday, 14 Feb 2011


Cold, achy and joints clicking painfully again, with a sore throat. Walk to kitchen to make breakfast was enough to provoke pain in hip and lower legs again. Just that was enough to exhaust me for the day.

Tuesday, 15 Feb 2011


Woke up aching and snuffling again, with a sore throat like I’m coming down with flu or tonsillitis. Glands in neck sore and swollen again. Joints all clicking painfully again. Cold again in the house.

Wednesday, 16 Feb 2011


Today I was offered Cognitive Behavioural Therapy (CBT). I was most restrained and avoided swear words when turning the useless sh*t down. Not a good day. I’d woken up with such terrible pain and burning in my legs and such utter physical exhaustion that I absolutely could not move my limbs for some considerable time. My first thought on waking was that I really need to lie down. Of course, I was already lying down.

Thursday, 17 Feb 2011


At one point during the night I was lying down with my eyes closed and could feel, very markedly, every pulsation, in time with my heartbeat, running up through my neck and head. You know the images you see when your eyes are closed, well those were ‘jumping’ in time with the pulsations, just like the picture on and old analogue TV, when the horizontal hold went squiffy. In addition, I felt dizzy and nauseas. You know, the sort of dizzy and nauseas that you normally lie down to escape and recover from. Except, of course, I was already lying down, so there was no escape from the awful feeling until I eventually fell asleep again. This morning I woke with a stabbing headache and felt sick and shaky as soon as I moved. I have sensations of ‘brain shakes’ often, but never quite this bad. I stood for a minute or so, but immediately got severe pains in my lower legs and ankles, so had to lie down and elevate them. Woke with pain and burning in legs anyway, with the now customary painful, clicking joints and sore throat.

Friday, 18 Feb 2011


Woke up with feverish headache, sore throat and catarrh, along with aching muscles and sore joints. And very cold again. By lunch time severely sweating and overheating again. Got up only a minute or so at a time to print some pages and prepare 2 small packages for the Post Office and became breathless, shaking and feeling uncontrollably sick. Needed to lie down down again to recover from this. [Yes, I would be physically sick otherwise.] Must go to the Post Office as I have a hospital appointment on Monday [And couldn’t do both on the same day and can’t do outings on consecutive days either. And need to rest before the journey to the hospital …] Had to sit down half way through shower and was overcome with light-headedness and nausea. Same happened again when I got to Post Office counter, when I almost lost it and keeled over. Got home exhausted and had to lie down again, but then couldn’t move again for hours. Couldn’t even straighten up to walk to the loo and felt too exhausted and sick even to sit up.

Saturday, 19 Feb 2011


Woke up with the feverish headache, sore throat and catarrh again. The only thing I managed was some cooking a couple of minutes at a time, with rests to lie down in between. Tried to peel some apples, but did not have enough power in my wrists and the attempt was excruciatingly painful. Had to get help as was not able to complete the task. Even tried doing it sitting in bed, but still could not manage it. Managed nothing else today.

Sunday, 20 Feb 2011


Been having really bad dreams again. Last one, fighting a man who was trying to attack me. Woke up feeling like I’d been fighting all night. Even worse feverish headache, sore throat and catarrh again this morning, along with hard and swollen glands in neck, just as I used to get with tonsillitis [Had tonsillitis probably every other week when I was about 11-12, with swollen glands and constant, repetitive courses of antibiotics. Have since read that many children with ME present with this history, so this is probably where it began. I doubt the antibiotics helped my immune system.] Kept going hot and cold all day, as if I have a fever or flu. 

Monday, 21 Feb 2011

Same old, same old … Woke up with feverishness again. Shaky and nauseas as soon as I move to do anything. Neck hurting more than usual. Today, I had an appointment with the Rheumatologist. Decided to try the bus to get to the hospital. Sensibly took a soft collar to help avoid more neck pain. Walk to bus stop was too far and the seat in the bus shelter was more of a ledge and entirely unsuitable and just added to my discomfort. Even turning my head to be able to cross roads on the way to the bus stop or look for the bus approaching was unbearably painful and each time caused a severe shooting pain accompanied by more nausea. The long, jolting bus ride was tortuous. However, expecting the usual “we found nothing” result, I was quite shocked by the diagnosis of cervical spondylosis (arthritis of the spine). Mind you, because of ME and my usual issues with drug reactions, this will be difficult, if not impossible to treat. 

Tuesday, 22 Feb 2011

Despite having been out yesterday, I went out again today to a talk to learn about myofascial release, in hopes that this may be able to help with my issues. The rheumatologist yesterday had said that I need to try to get the fibromyalgia under control in order to reduce the pain from the arthritis (not sure how). It was a good afternoon, but involved another, long, taxing journey by bus.

Wednesday, 23 Feb 2011

The result of two outings on the previous days – despite being relatively short and in any case merely for hospital and therapeutic reasons – was THE most excruciating pain all over, which showed no signs of abating all day. As well as unbelievable neck pain from the jolting of the bus journeys, all my joints were clicking painfully, my skin feels tender and bruised everywhere and my muscles as if strained. Was unable to get up even to make food as could not moved for the severe fatigue. Had to take a nap in the afternoon.

Thursday, 24 Feb 2011

Still feel sore and bruised all over from the outings. My joints all feel like they’re assembled wrong and I am still very fatigued – I mean more than normal. Unable to concentrate on anything. Staying on bed, as usual.

Friday, 25 Feb 2011

Feel absolute crap again. Still really sore overall and woke up with especially bad neck pain that continued throughout the day, making it once more impossible to sit up without cushions to support my neck to mitigate the pain, which does not respond to painkillers.

Saturday, 26 Feb 2011

Neck pain is not improving and is only partially relieved by immobilising it with neck cushions. Any movement, even light stretching, just causes an increase in the pain. My eyes are painful again and I am still more fatigued that usual. Pushed myself to fill in application for counselling.

Sunday, 27 Feb 2011

The neck pain still just won’t let up. I’ve tried gentle movements (exercises, stretches), but that currently just makes it worse. I’ve tried immobilising it, which does help, but only while I’m reclining  – it doesn’t give any lasting relief and means starting again from scratch every time I’ve had to move to go to the loo, whatever. Maybe amputation would help? I am so tired and yawning today, it’s as if I hadn’t slept. Cannot concentrate at all.

Monday, 28 Feb 2011


Tired and have a headache because I hadn’t been able to get to sleep until 3-4 am. Neck pain still troublesome and have pain in left kidney area that always happens whenever I’m short on sleep (most of the time). Had to take Balu to the vet this afternoon. Mitigated walking by taking the bus there and taxi back, but the outing was still tiring and has caused much more pain my legs, back, arms, shoulders, hip … Got home, lay down and was unable to get up again because of the pain and stiffness. Couldn’t even find energy to think or even watch TV.

Sunday 27 February 2011

Signs and Symptoms of Autonomic Dysfunction

An interesting, if long – but this merely reflects the number and complexity of symptoms we suffer – list of signs and symptoms of Autonomic Dysfunction (a.k.a. Dysautonomia). If you read through them, you’ll recognise many that you probably associate with your fibromyalgia, ME/CFS and even IBS, multiple chemical sensitivity and other related and overlapping conditions.

For my own purposes, I’ve stuck through the very few symptoms that I don’t get on this list. Honestly, seeing them all listed like this, even I don’t know how we manage to put up with them and function on any level at all.

Some of the listed symptoms are always present while others occur when a person with Autonomic Dysfunction has been standing or sitting too long:
  1. -Dizziness
  2. -Light-headedness
  3. -Vertigo (room spinning or the sensation of spinning)
  4. -Feeling faint (pre-syncope)
  5. -Fainting (syncope)
  6. -Chest pain or pressure
  7. -Excessive fatigue
  8. -Rapid heart rate (tachycardia)
  9. -Stomach pain
  10. -Intestinal cramping
  11. -Nausea
  12. -Vomiting
  13. -Retching
  14. -Exercise Intolerance: becoming short of breath on mild exertion, having chest pain or palpitations on mild exertion. Having excessive heart rate during or immediately after exercise.  Leg cramps or numbness of arms and legs during or after mild exercise.
  15. -Visible pooling in arms and legs: Deep purple-red colour in fingers and toes.
  16. -White appearance of fingers. Some present with white patches of skin on arms and legs.
  17. -Extremely cold hands and feet.
  18. -Numbness of hands and feet.
  19. -Muscle weakness
  20. -Muscle and joint pain
  21. -Tremors or mild shaking of hands
  22. -Frequent headaches or migraine headaches
  23. -Irritability due to decreased blood flow to the brain
  24. -Feeling anxious/Having panic attacks due to increased production of adrenaline
  25. -Mood changes
  26. -Forgetfulness
  27. -Inability to concentrate or remember (frequently referred to as "brain fog")
  28. -Inability to tolerate changes in temperature
  29. -Decreased sweating or excessive sweating
  30. -Abnormal deep tendon reflexes.
  31. -Basic neurological exam is normal.
  32. -Intelligence normal when receiving adequate cerebral perfusion.

Less frequently recognized signs and symptoms:
  1. -Insomnia
  2. -Disruption of sleep/wake cycle usually consisting of increased energy late in the evening and lowest energy level in the morning regardless of amount or quality of sleep.
  3. -Central sleep apnea
  4. -Need to sleep 12-14 hours in order to complete simple activities of daily living.
  5. -Anoxic or convulsive seizures that are not epileptic.
  6. -Frequent need to urinate at night.
  7. -Upon standing feels head is "heavy". This resolves with lying down or with walking around.
  8. -Decrease in (or absence of) lubricating tears in the eye.
  9. -Sensitivity to bright, florescent light and bright sunlight. Many patients report feeling pre-syncopal in large grocery stores and department stores that use excessive florescent lighting. Flashing lights and multi-coloured lighting can also produce symptoms.
  10. -Visual distortion: Television screens and computer screens can appear distorted, especially post-syncopal or pre-syncopal episode. Flat screens are recommended.
  11. -Distorted depth perception resulting in a feeling of unsteadiness. Often appears to be "clumsy" or excessively cautious when climbing stairs, reaching for an object, etc.
  12. -Other visual disturbances include a greying out or blacking out of the visual field; either partially or completely.
  13. -Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because they did not perceive anyone or anything next to them.
  14. -Frequent "bumping into things". Attributed to a combination of visual and depth perception deficits.
  15. -Noise sensitivity. Loud or beating sounds can cause pre-syncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds.
  16. -Sensitivity to odours, even pleasant smelling chemicals such as perfume. Odours such as cleaning products, gasoline, strong foods, etc. may cause extreme nausea, retching, vomiting, dizziness and headache.
  17. -Decrease production of saliva or excessive production of saliva.
  18. -Severe constipation and decreased gut motility.
  19. -Weight gain regardless of diet modifications.
  20. -Overall slowing of metabolism is common.
  21. -Increased metabolism (rare)
  22. -Excessive gut motility leading to chronic diarrhoea and weight loss. (less common)
  23. -Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain especially right after an episode or if the patient has not had enough sleep.
  24. -Decrease sensitivity to pain/touch in certain areas. If standing or sitting too long causes hands and feet to turn cold and blue, patient will have decreased sensation in these areas due to poor blood flow.
  25. -Taste and appetite changes. Fruits and other acidic foods may taste extremely acidic. Foods may taste differently if patient is tired, stressed, or post-syncopal episode.
  26. -Hair loss due to decreased blood supply to hair follicles.
  27. -Speech disturbances: Inability to finish an expressed thought, loss of train of thought, "spoonerisms", especially if up and about for 2 hours or more without lying flat and resting.
  28. -Comprehension difficulties. Inability to follow a conversation. May hear words but is unable to understand their context in the sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Losses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.
  29. -Memory recall deficits in long and short term memory. Improves with lying down and resting.
  30. -Abdominal migraines. Severe stomach pain triggered by large meal or by sitting or standing too long. Usually resolves if patient lies quietly.
  31. -Drifting to the right or left when walking. Most commonly patients report drifting to the left. Many patients report always fainting to the left as well. Appears to be unrelated to hand-dominance, but further research is needed.
  32. -Tend to have mild symptoms of Ehlers-Danlos, but do not necessarily test positive for the disease. This includes hypermobile joints, double joints, and soft, velvet-like skin that has little or no texture.
  33. -Often has another auto-immune disorder.
  34. -Family History of auto-immune disorder or symptoms that resemble autonomic dysfunction.
  35. -Appears to have more viral illnesses than general population. Often diagnosed with Chronic Fatigue Immune Dysfunction Syndrome.
(Via: Signs and Symptoms of Autonomic Dysfunction)