Analysis of an ME symptom diary

“I never travel without my diary. One should always have something sensational to read in the train.” ― Oscar Wilde

This year's diary definitely doesn't qualify as sensational! And it was only ever meant to be a symptom diary anyway, never intended for publication, but it has been a very useful process to type it up and analyse in retrospect. It has allowed me to identify trends, like what activities cause what symptom or payback, which is enabling me to plan what to avoid to keep symptoms bearable. 

Reading it back it's just a tedious and repetitive round of constipation followed by IBS; activity, followed by excruciating pain, lack of sleep and worsening post-exertional malaise (PEM). But, boring as it is, I'm sharing my experience in case it can be of use, from the process, or something that perhaps resonates. 

It sounds so easy to say avoid such boom and bust cycles and learn pacing. Quite another to achieve that in reality when, often, too much activity (that will cause unforeseen symptoms) is merely getting to the bathroom and back. It took many years and writing all this down and reading it back for the penny to fully drop for me, so I do understand why it's hard for anyone not actually experiencing it to grasp, but I do think a few more could at least try to have some empathy.

The biggest conundrum is if I wake up just tired, but only feel averagely crap. But this is the worst time, because when you finally get it right and reduce your stressors to the required level to not provoke unbearable symptoms, 'imposter syndrome' clicks in (undoubtedly worse due to medical gaslighting), we begin to think maybe we aren't that ill after all, then overdo it and go right back to the start all over again. Going through this process means I do that less now.

Anyway, here's what I've learned from analysing my 2011 Symptom Diary:

• My sleep pattern has it's own mind. Doctors and other health professionals bleat on about sleep hygiene like it's some universal panacea. It. Does. Not. Work. (There isn't really any evidence that it works either.) In my case, I sleep better with some low light and some noise (TV, white noise ...) and can't stand dark and quiet - I mean, to the point that it is mentally disturbing and nightmare inducing. And sometimes even that doesn't work. The only thing I can somewhat control, is to make sure that I don't do things on days where I haven't had enough sleep and am thus wired, strung out and already knackered. Easier said than done, because, in practice, that means avoiding making any plans. And pleasurable, non-essential ones are the first to go. During 2011, I had far too many medical and counselling appointments that, in retrospect, were often of little value, but which caused massive amounts of post-exertional malaise (PEM), with severity in inverse proportion to the amount of sleep. So, I guess the take-away here is to learn to say NO. Even to doctors and especially to other 'well-meaning' people. Accept and trust your body on this.
• Outings cause pain that prevents me sleeping as the pain in my legs often keeps me awake all night. Well, any activity causes pain and overactivation, which then causes lack of sleep, which causes the pattern to repeat. Walking any distance provokes this, yet I persevered for years because a) I had no alternative means of transport and b) under the misapprehension, based on 'expert' opinion that it would do me good. It certainly did not. All it did was keep reducing my baseline and what I could achieve, from which I have never recovered.
• Low light may be good. Light early mornings on the other hand are dreadful. Maybe this intolerance is more pronounced for me because I spent 16 years closer to the equator, in Tenerife, where there is a lot less difference in the length of day between summer and winter, but these seasonal swings in the UK are something I cannot seem to adapt to and which increase my lack of sleep in summer, which increases my symptoms and reduces my baseline. Even more.
• Any effort causes exhaustion symptoms such as breathlessness, shaking and feeling uncontrollably sick at the time and later post-exertional malaise (PEM) symptoms, which are flu-like with sore throat, swollen glands, feverishness, headache ... The only fluctuation is the amount of said effort that will cause this reaction cycle to start. Predicting or noticing what that point is, is the hard part, because it's a full-time job that requires attention, awareness and concentration that are, in themselves, activities that can cause exhaustion and payback. 
• Travelling to anywhere is exhausting, but not all methods of transportation are equal. It's not necessarily logical, but walking is not always the worst - or most exhausting - means if an alternative, like the bus, would involve lots of waiting and standing around that causes worse symptoms and greater excruciating pain. Buses, I've found, are impossible anyway because of the jolting. Trains are only acceptable if a seat is guaranteed. Car journeys are intolerable if they're too long, require me sit too upright or over poor road surfaces. 
• My system gives me no warning of IBS-like attacks, however, by analysing the diary, I can see that the majority of them tend to follow episodes of constipation. It isn't stress or exhaustion that's causing it, it's mostly medication, especially pain relief, or changes to my diet that are the worst culprits. Oh and THE WORST thing: Buscopan - prescribed by the GP for IBS. Irony at it's most surreal. Let me make the distinction here: I'm calling these 'IBS-like attacks' because there is overlap and they are like IBS. And GPs have diagnosed me with IBS twice, probably wrongly. What I think is the case is that these are gastric symptoms due to myalgic encephalomyelitis. That also means that a drug like Buscopan that is designed to stop the sort of stomach cramps that you'd get if you had, say, a stress-induced tendency to IBS, will, in someone with an already exhausted system - and this is my experience with it - simply cause the bowel to become virtually paralysed and unable to function. Then it 'backs up' causes constipation, even more headaches, nausea, until it 'explodes' again. The only things I can do to avoid this boom and bust cycle is to absolutely never take pain relief, not even a Paracetamol, certainly never take Buscopan, completely avoid binding foods like eggs and never, never, never deviate from my roughage-heavy diet.
• Of course, 'absolutely never taking pain relief', means the only method I have left for avoiding pain is to avoid all those activities or environments that would provoke or increase pain. 
• Ah 2011 was also the year I learned that I cannot tolerate a dental anaesthetic, which contained adrenaline. The hard way. Since then I have insisted a warning goes on the top of my notes. If a new dentist did not want to understand this, I would leave and change dentist. 
• A HUGE reason for keeping the diary in 2011 was because of the abuse and bullying I was receiving from my mother and certain people she had manipulated into continuing this for her. Being threatened with violence, verbally attacked and slandered were among the reasons I sought support and counselling, because I'd been pushed to the point of breakdown. She died in 2011, which, for me, began a process of recovery, from that at least. Every cloud, as they say.

ME Symptom Diary: November 2011

Monday, 7 Nov 2011

Yet another explosive attack of IBS this morning. What began, as ever, as a seemingly normal 'bathroom visit' – there is never any prior warning or indication – became a lengthy marathon with contractions/spasms and pain increasing in intensity until it made me cry out, involuntarily. By that point I was in so much pain I was feeling faint and thought I would pass out and fall off the loo! That’s not to mention the smell and the mess – you are so lucky there’s no ‘smellyvision’ – which make it impossible to even contemplate getting ‘caught short’ with this in a public or work place. The ordeal left me feeling weak and unwell and required me to lie flat for much of the day, until I had to go out, to keep a counselling appointment, in the afternoon – I'd rather have not gone out.

Tuesday, 8 Nov 2011

Yesterday’s outing took it out of me on top of the IBS attack, so much of today I had to rest. Was collected and taken out to a local group this evening and watched an interesting and informative film, but a couple of hours in an upright chair left my legs, back and neck in very severe pain that, later, prevented me from getting comfortable in bed and getting to sleep. When I did sleep, I woke up again early. Allodynia pain has flared up so much, making it too painful to put my feet in direct contact with the bed sheets. Yet again, this is too high a price to pay. 

Wednesday, 9 Nov 2011

Still felt unwell and tired. Woke stiff, but in less pain than I expected. Was not able to do much physically, but did finish writing some letters that have been waiting – for a day when I had the energy and cognitive capabilities - since September and took those and a couple of parcels to the Post Office. Phoned ‘former family friend’ – to not name this person – to cancel their intended (their intention) visit, which he turned into an argument. It’s clear he is not about to let facts get in the way of his ill-informed opinions (those only based on my mother’s lies). As the call was ended abruptly, I will need to defend myself in writing, but otherwise, want no contact with this person. It was a most unpleasant exchange, but I feel more sure of myself and thus less upset by his verbal attack.

Thursday, 10 Nov 2011

Difficulty waking up this morning, even though I slept reasonably for a change, which, under the circumstances, was a surprise – or, maybe not, now that I’m certain I won’t be dealing with certain bullies again. But I’m tired, strung out and nauseas. Having to push myself to eat. Neck pain and stiffness, with that grinding, crunching of bones sound, is particularly bad today. Felt sick, shaky and feverish after eating breakfast and had to lie down. Migraine headache building.

(Once more, too unwell to continue symptom diary on a regular basis.)

Thursday, 24 Nov 2011

Only slept about 4 hours last night, so woke up very tired and strung out. Received some post and deliveries, but was unable to move anything and just left all the items where they were (often do this with shopping). By mid-afternoon, I simply could not do anything, other than lie down, dozing. Yet another nose bleed.

Friday, 25 Nov 2011

Woke up in pain. My bones feel like they’ve been replaced with freezer ice as they're burning (like an Ice Burn) and my muscles are achy, taught and powerless. If I didn’t know better, I’d think I had polio. (Myalgic encephalomyelitis was called atypical polio - or polio by another name. Not surprised.) For some time this morning I really couldn’t make my limbs move, despite being desperate for the loo. Sore throat and very swollen glands. Knees feel swollen. All joints are clicking painfully. Food and coffee made me feel sick. Walking to the loo made me exhausted and shake from the exertion. Feverish headache and light is painful to my eyes. Legs and back are too painful even to allow me to sit. No choice but to lie down, even though I need (and want) to be doing things in the house. 

Saturday, 26 Nov 2011

Woke up with severe headache and nausea. Eating breakfast only made the latter worse. Catarrh, sore throat, and an ‘itch’ in my ears (like with an infection). Feel like I’m getting flu, although likely this is Post-exertional malaise (PEM).

Monday, 28 Nov 2011

Woke with a sore throat and a banging, feverish headache again. Joints very sore. 

(These are the last entries in the diary.)

ME Symptom Diary: 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, 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.

ME Symptom Diary: July 2011

Float before the Bourne Free Parade 2011

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, 4 Jul 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, 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, 18 July 2011

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, 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.

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.

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.

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.

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.