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

Monday, 15 August 2011

Monday, 15 Aug 2011

(Yes, there is a gap for week commencing 8 Aug 2011, as I was just too ill.)

Had to do some shopping today because mother couldn’t go out, because of dizziness. OK, but I’ve been suffering dizziness, pretty much constantly, since 1973, but as usual, she chooses to ignore and invalidate my symptoms. The walking and carrying was just too much for me. When I got home I had to lie flat as I was overwhelmed by with nausea, dizziness, light-headedness, shaking from the exertion, and fatigue. New canvas shoes caused several blisters on my over-sensitive feet within yards, so I had to buy alternative shoes – in a charity shop – in order to be able to get home. This degree of sensitivity is excessive. 

Tuesday, 16 Aug 2011

Despite still feeling very nauseas and dizzy, took the train – could not have coped with the longer, more uncomfortable bus journey – and had to get taxis to and from the stations to keep another therapy appointment. Didn’t think I was going to make it home as I felt so sick and unwell.

Wednesday, 17 Aug 2011

Still feel very unwell with overwhelming nausea and dizziness. Cannot stand or even sit up without the symptoms becoming much worse. Today my stomach is considerably upset and mother was admitted to hospital and given IV antibiotics - for the same symptoms I have – which I later queried with them. Had phoned GP, who have seen many patients with the same symptoms recently and say that this is VIRUS* that’s going around. Was advised to rest and drink plenty of fluids. Duty doctor was going to call me in the morning for an update. Too ill to stand and prepare any food. Needed help, but, of course, none was available.

(*Antibiotics are no use with a VIRUS. The hospital was wrong and, on top of the chemo – that my mother denied she was having – proved fatal.)

Thursday, 18 Aug 2011

Thought I felt a bit better this morning, but I thought wrong. Dizziness and light-headedness is so extreme that I’m literally bouncing off the walls as I’m unable to walk or keep my balance. Nausea returned and now I have a feverish, gripping and randomly stabbing headache. This, in addition to the terrible stomach ache and upset stomach that left me feeling sick, weak and even more light-headed again. Had spoken to the GP this morning, who said rest as much as possible, but that they would need to see me if the symptoms returned – which they have, but I’m much too ill to manage to get to the surgery! Also advised to have as little contact as possible with my mother – not a problem, as I'm too ill to go out and have no means to get to the hospital anyway – to avoid reinfection. 

This virus also left me too unwell to continue with the diary.

Monday, 1 August 2011

Monday, 1 Aug 2011

‘Effin crap again. Still got flu-like symptoms and inflammation that is notable in my hands and knees. Pain levels are mega with shooting pains and spasms, especially in my thighs. Decided not to take pain killers (Celebrex/Celecoxib) this week as they barely touch the pain anyway, but are almost certainly contributing to an extreme level of constipation, which is itself crippling.

Tuesday, 2 Aug 2011

Overall feeling of inflammation, which is hands is very apparent. Neck ache, back ache, feel sick and exhausted just from making breakfast. Spending the day resting after counselling yesterday.

Wednesday, 3 Aug 2011

Utterly crap, without the crap. Severely constipated again, which is (literally) a severe pain in the rectum. Was overcome with severe sweating and nausea, when I simply tried to go to the loo. Thought I was going to pass out or throw up. Had to crawl back to bed to lie down. My back hurts and I feel very unwell.

Thursday, 4 Aug 2011

Snuffly this morning and have increased nausea again. Took another laxative last night and STILL no result. Hip and back pain is getting really bad.

Friday, 5 Aug 2011

Eleven hours sleep, relatively low pain levels (due to warm, dry weather) and finally went to the loo! It took a 3rd dose of laxatives and wasn’t really worth celebrating, but this is just one example of what happens with medications – for me anyway and perhaps for many people with myalgic encephalomyelitis (ME) – that we get all the side-effects (for example, pain meds causing constipation) and none of the effects: doesn’t kill pain – indeed, if you add the severe back ache, constipation headache and overall aches from feeling ‘poisoned’ as a result, all pain meds do is increase pain levels, exponentially. Seems incredibly ‘arse backwards’ to me (hence, gave up on them in the end). Still have the headache and now have the shakes from exertion, but it is a mild improvement.

Saturday, 6 Aug 2011

Severe headache, horrible cramps and pain around my butt end, severe backache and crippling nausea. Getting worried that my bowel may be obstructed. Severe pain in lower abdomen. Hip, neck and knee pain increasing again.

Sunday, 7 Aug 2011

Yay, finally! OK, I'll spare you the details. At least the obstruction cleared itself. Now headache has reduced. Neck pain still needs support and still light-headed and dizzy on standing.

Monday, 25 July 2011

Monday, 25 Jul 2011

Woke up about 4am with a coughing fit and couldn’t get back to sleep again. Excruciating pain in hip. Flu-like symptoms, feverish and snuffly. Exhausted and achy.

Tuesday, 26 Jul 2011

Generally crap with sore throat, headache from constipation and feverishness. Neck hurts, knees and lower legs throbbing with pain even when lying down. Severe nausea. Day written off.

Wednesday, 27 Jul 2011

Sore throat, sneezing, feel like I’m going down with flu. Hands and legs in pain. Had weird dreams last night (more weird than usual) and not great sleep.

Thursday, 28 Jul 2011

Finally went to the loo! Hope this relieves the headache and back ache. Hands and legs hurt. Exhausted.

Friday, 29 Jul 2011

Did I really sleep last night? Feels like I haven’t slept at all. Can’t stop yawning. Feel heavy and weak. Neck, hip, knees and feet hurt after outing for counselling appointment yesterday afternoon. Tried to have an outing to Christchurch, but this proved disastrous and I have to conclude that travel, particularly by bus, is really beyond my abilities. Could hardly walk at all. Had to lie down.

Saturday, 30 Jul 2011

Eventually got to sleep last night, but pain in my hip and down my right leg is off the scale this morning. The skin on my toe joint is still numb, but excruciatingly painful at the same time. Neck and back hurt even more than usual. Flu-like post-exertional malaise symptoms. Took a flu powder and slept all afternoon, as well as all night.

Sunday, 31 Jul 2011

Worse this morning. Prescription meds (Celebrex/Celecoxib) just not having any effect on pain. Pain in neck, back, hip, knees, legs and feet all agony. Hands and wrists swollen, painful and too weak to lift a cup. Have a cough that will not stop.

Monday, 18 July 2011

Monday, 18 July 2011

Poole Station
cc-by-sa/2.0 - © Gordon Griffiths -

Crap - in the literal sense - with yet another flare up on the dreaded IBS. Unbelievable pain, whole body spasms and unending “emission” over more than half an hour that left me feeling weak and unwell again. Hip nagging with pain again, so bad that I cannot sit comfortably, even reclining in bed.

Tuesday, 19 Jul 2011

So fatigued today - and I’m sure that yesterday’s IBS attack has had much today with today’s overall symptom increase – that I cannot even recline at any angle and need to lie flat. Feel too weak, feel sick and feel like I will keel over. Not that I can ever sit up, but this is definitely worse than the usual disequilibrium. Feel like a huge weight is pushing me down against the bed and I have no power in any of my muscles. Arms too tired to type. Neck and back hurt.

Wednesday, 20 Jul 2011

Appointment with the Pain Service today, all the way over in Poole, Dorset. Made it clear that none of the distraction techniques they had previously touted do anything whatsoever for my pain. And we agreed that ‘their time would be better spent with others they can help’. Well, obviously, what I really meant was that they’re basically a f*cking waste of my time and energy, but surprisingly, I managed not to say that in those exact words. Besides, the trips to Poole are far too much for me. The irony is clearly lost on them, but the fact of getting to a Pain Service causing pain, just makes it stupid. [Later, when they offered me a place on a course for managing Fibromyalgia – that would have involved daily journeys (way beyond my energy capabilities) and sitting all day, over several days/weeks in a chair (impossible, and I don’t even sit in chairs, at rest, at home), I did spell it out to them very clearly that what they proposed was not suitable for anyone with fibromyalgia, certainly less so for anyone with ME and would amount to deliberate harm and torture. And I told them where to stick it.]

Thursday, 21 Jul 2011

Not enough sleep last night as kept awake by the severe pain, especially in my legs, resulting from the outing to the Pain Service (you see they irony) yesterday. Have a headache and back ache as well as the usual post-exertion flu-like symptoms. Have to lie down and functioning option is not available again. Going out to counselling appointment in the afternoon had a particularly severe physical effect because I started out at such a low level of functioning.

Friday, 22 Jul 2011

Headache. Hips and knees hurt from walking yesterday, but at least I slept for a change – about 14 hours. But I had to go out yet again, this time to the dentist.

Saturday, 23 Jul 2011

Hips and knees hurt after outing yesterday, despite not taking taxis both to and from the station to reduce the exertion. However, my mouth is very sore. This was the treatment that had to be curtailed last time because I was too unwell, so this time I had no choice. My back hurts, and I have extreme fatigue – could hardly stand half way through making breakfast. Rest of day in bed.

Sunday, 24 Jul 2011

Knackered again. Woke up at 2:45am and didn’t sleep again until after 6am. Legs hurt. Headache from lack of sleep and from teeth. Neck pain is particularly bad. Rest of day reclined, supported.

Monday, 11 July 2011

Monday, 11 Jul 2011

Everything still hurts and it is going to take a long time to shake this level of exhaustion. A very painful IBS attack, with full body spasms, left me with dreadful stomach ache. Pain during the attack was so bad it caused me to cry out. Waves of pain washed over me, making me feel hot, sick and quite faint. Actually, felt as if I might pass out and fall off the loo. Had to hold onto the walls. Still felt very unwell, weak and tired, even after taking a nap.

Tuesday, 12 Jul 2011

Knackered. Neck hurts, shoulders hurt. Left shoulder feels swollen and stiff. Back is in agony. Hips hurt. Legs feel half-dead with pins & needles, knees are very sore and I feel sick. Nevertheless, had to drag myself out to an appointment for Myofascial Release (MFR).

Wednesday, 13 Jul 2011

This time I feel bruised everywhere after the Myofascial Release (MFR) yesterday and, sadly, it has had no positive results. Just did too much, with the journey, when I was already feeling ill. Neck and back hurt badly today, as does hip.

Thursday, 14 Jul 2011

Hip pain is flaring with a vengeance today, which is affecting everything else and making me miserable. Just can’t function – or even think – at all today. Had another very painful IBS attack in the morning, which added to and exacerbated all the other symptoms. Walked to an appointment in town in the afternoon and arrived sweating and unwell. Felt sick on the way and thought I would not make it and would pass out. Was unable to sit comfortably because of the pain. Others witnessed this can could see how bad my symptoms were.

Friday, 15 Jul 2011

Headache; neck, back, hips, arms, hands, knees, legs and feet all in severe pain after outing yesterday. Sore throat and all the usual post-exertional feverishness. Can’t stand – don’t have the energy and am light-headed and unsteady as soon as I try. Feel overwhelmingly sick.

Saturday, 16 Jul 2011

Neck, back and shoulders particularly painful today. Spasms in legs. Stomach ache and headache. Still feel feverish with flu-like symptoms. Feel incredibly unwell. Spent day resting.

Sunday, 17 Jul 2011

Woke up with pain in neck and shoulders, hips, legs, knees and particularly bad I lower back. Utterly fatigued and only able to recline with support.

Monday, 4 July 2011

Monday, 4 Jul 2011

Float before the Bourne Free Parade 2011

Every exertion – however minor, even going to the loo – is making me feel sick and causing me to shake. Each time I stand, I feel faint and overcome with nausea and have to lie down. Neck is grinding painfully.

Tuesday, 5 Jul 2011

Woke up in the early hours with an exhausting and excruciating pain right in the centre of my chest. Couldn’t move. Could feel palpitations that continued, along with some pain and discomfort for most of the day. The fatigue was really crippling. Felt really ill. Had the familiar pain in my lower back (left kidney area) that has always accompanied symptom flares since the time I was rushed to hospital with this pain back in 1995, in Tenerife. The back pain persisted even when I lay down and was acute enough to be completely distracting and make me feel sick. Was so exhausted just from making breakfast that I could not even sit up afterwards. Rested until I had to go out to a dental appointment in the afternoon. Would have preferred not to go out at all while suffering this level of symptoms and, in hindsight, I should have cancelled because the dentist had to stop treatment as I was so unwell and also because the anaesthetic did not take.

Wednesday, 6 Jul 2011

Slept, exhausted, as soon as I got home from the dentist yesterday, but I was awake all night with the pain in my legs from the outing – even though I’d taken taxis at both ends to and from the station because I was so unwell. Now utterly shattered and strung out with all my symptoms flaring.

Thursday, 7 Jul 2011

Couldn’t sleep again all night last night. Assume this is a reaction to the dental anaesthetic, which had contained adrenaline. Dentist had asked me if I’d ever had a reaction to it. I can now say yes. It’s like coke or speed on steroids! Brain is racing and I have a severe headache, which seems to be a likely side-effect. Something else I will need to avoid in future. Also have bad back ache again. Had a counselling session in the afternoon and my mind raced through this and I had trouble focussing or making any sense, so again, in retrospect, I probably should have cancelled.

Friday, 8 Jul 2011

Stiff and in lots of pain after outing yesterday. Should not have attempted walking home, but cannot afford taxis for everything. Also because a thunderstorm has been forecast and the weather has become humid and oppressive again, which always elevates pain levels. However, I slept last night, which was an improvement. Still too ill to do anything except lie down and rest.

Saturday, 9 Jul 2011

Day of the Bourne Free Parade and my first opportunity to do something for mere pleasure in forever. Of course I’m not really up to it, but I was given a seat on a float, so at least I didn’t have to walk. Even so, I was still exhausted after the hour and had to come straight home. Was back by 3pm and fell asleep. Could barely move later to get food. Needed help.

Sunday, 10 Jul 2011

Everything hurts and I am exhausted. It’s a VERY high price to pay just for one hour of enjoyment yesterday. Was not even able to get comfortable lying down. 

Monday, 27 June 2011

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.

Friday, 1 Jul 2011

Usual post-outing problems with pain in legs and feet; back hurts badly, I feel feverish, have a sore throat and a severe headache with nausea. In addition, I feel too weak – as well as it being too painful – to sit up, so once more I have to spend the day lying down or at least reclining on the bed with my legs raised. Arms and wrists hurt too. I can just browse and look at pictures, but I cannot concentrate to read, type or do anything actually productive.

Saturday, 2 Jul 2011

Woke up with a bad headache, painful creaking in my neck and my legs are still suffering from Thursday’s outing. Exhausted. Neck pain and stiffness is resisting meds and I feel like I have a hangover (not a drop of alcohol has passed my lips since forever). Getting up to make food, I felt dizzy, sick and light-headed. The pain and stiffness in my neck is now referring down into my left shoulder, making my left arm weak and giving me pins and needles in my arm and hand (this is not the first time, this arm was affected like this for several months once in the past). Couldn’t do anything constructive today either.

Sunday, 3 Jul 2011

Neck has become really painful and uncomfortable again. Hip and leg pain with the burning feeling right down to the bone, has come back. I was exhausted just from making and eating breakfast.

Monday, 20 June 2011

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, 13 June 2011

Monday, 13 Jun 2011

Therapy dog

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, 6 June 2011

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, 30 May 2011

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.

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, 23 May 2011

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, 9 May 2011

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, 2 May 2011

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, 25 April 2011

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.

Sunday, 1 May 2011

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

Monday, 18 April 2011

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, 11 April 2011

Monday, 11 Apr 2011

Bristol Dental Hospital
cc-by-sa/2.0 - © Thomas Nugent -

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, 4 April 2011

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.

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. 

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!