Vivid dreams last night. Sleep intermittent but not disturbed by pain. Woken initially at 0600 by Marko, again naturally at 0830, then slept through til woken by telephone call at 1215.
Chest pains today excruciating, almost constant, concentrated around solar plexus, sternum and just below left breast. Also stabbing pains in ribs. Pain in head also bad, seems to be connected in a physical way to chest pain in a structure that extends down from heart to back and bottom of left rib cage and up to the top of my head. Particularly bad when I try to walk anywhere. Seriously thought I was going to black out on the way back from Sainsbury's and had to stop and cry a bit twice. Nearly called someone on phone to ask for help (from the car park).
Despite feeling sick most of the day have eaten a fair bit - egg sarnie, pilchards on toast, an apple and a yoghurt.
Big black blob was back yesterday and when I looked in my eye it really did look as if a piece of the iris had broken off and was floating in the pupil, down at the bottom, only to be seen when pupil quite wide. It doesn't stay in the same place in my vision, but is always to the lower right of my visual field. Very prominent yesterday, and also initially today, but it has gone down. Blob always accompanied by eye irritation that feels like being in a very smoky atmosphere.
Legs not too bad today, but turned purple and blotchy when I got out the bath - first time. Scary. Spasms in hands and shoulders are back. I ache badly today.
If I just sit down, things ease up. Moving around exacerbates things immediately and intensely. Going outside is excruciating in my chest.
Vision not good. Eyesight is hurting my head. It almost feels like the optic nerve is bruised. Quite weepy, but only in short bursts and when I feel stressed at all - even if the stress is only having another 10 yards to walk.
Had a moment or two today, about 20 minutes, on the first trip to the shop, thought I had been transplanted onto another planet. Everything looked far too vivid and completely alien.
Did mean to be more regular with this, but....
Thurs and Fri morning last week were actually pretty good. Only a couple of teary moments, quickly over. Quite fatigued, but went into town and bought a hat and a fleece sleeping bag liner then carved a pumpkin. Keeping busy helped and I had Samhain to look forward to. Nausea only slight, didn't get hugely out of breath, only minor chest pains.
Fri afternoon got fairly stressed, feelings of pent-up nervousness and irritability got worse over course of evening. Began to suffer claustrophobia and feelings of near-panic. Had a couple of glasses of mulled wine, as I have not yet taken any meds. Eventually collapsed and was vomiting. Incredibly dizzy and weak. Did not sleep well.
Next morning, Sat, felt dire. Weak, trembly, nauseous. No chest pain but short of breath and tremendously sore head. Pushed myself to help stack logs. Cleared head and nausea although tired quickly. Hadn't eaten since some thin soup Thursday evening, and felt able to keep down a couple of baked bananas.
Apart from weakness, dizziness, slight sore head and partial failure in legs and left arm, with hand spasms, no real pain and these symptoms seemed relatively mild. They didn't have the intense negative emotional effects. Got better into Sat evening. Enjoyed myself. Wow.
Did not sleep at all - more likely due to sleeping arrangements.
Today has been brutal. Woke from light doze with horrendous confusion, already near to emotional breaking point. Snapped at Marko over nothing, got really worked up over minor things. Felt numb yet intensely fragile. Very weak, sick, ached everywhere, deep down. Rib pain back. Burst into tears once this morning.
After Andy left this afternoon was overwhelmed by a feeling of being abandoned. Cried for a little while then went to Sainsbury's. No chest pain, but nearly couldn't get over the slight rise on the footbridge. Had to stop several times on the way back. All afternoon - about 3 hours intensely - felt like a pressure cooker. Huge pressure in chest. Wanted to cry but couldn't. Finally just burst. Collapsed behind sofa and sobbed until it hurt, massive sobs, went on for about an hour. Tremendous feeling of isolation. Sat down and I must have fallen asleep. Woke up with face crusty, incredibly cold, shaking. I hurt all over but felt emotionally spent. Brief moment of feeling suicidal. Not that it's not worth living, but there is too much for me to cope with and the pain will kill me anyway. Feel very, very alone.
Bad emotional symptoms seem to be preceded and accompanied by extreme feeling of cold, shaking, intensifying pain and weakness and sensation of pressure in chest.
It has been a peculiar week. Monday was awful. I spent the whole day freezing cold on the sofa in my fleecey sleeping bag. I didn't feel well enough to drive and Marko had Tuesday off so we drove over Tuesday morning. Tuesday was a non-coping day and I spent most of it feeling stressed and snappy. Didn't sleep well at all.
Cried a lot when I took Marko to the us on Wednesday morning. Chest pains and leg weakness got pregressively worse. Drove back to MK to play pool and was very wobbly and tearful. I had to decline to play the last game and had to go to the loo at one point because I thought I was going to be sick.
Cried some more that evening and went to bed early. I was in quite a lot of pain and took a prothiaden for the first time. Took about an hour to kick in and then I went straight from feeling achey but okay to having sharp, stabbing pains coming and going all over and feeling so dizzy and heavy in the wrong places that I had to keep my eyes open so I wouldn't be sick. That lasted about half an hour until I dozed off. Sleep intermittent and I woke the next morning feeling absolutely terrible.
Had a meeting with supervisors at 11am, found it very difficult to get up the stairs; felt short of breath and bad pain in my legs. Throughout the meeting I felt as if I didn't have the energy to participate properly, and was trembling a bit. I nearly started crying with frustration when they said I looked better, and was quite stressed by having to discuss an extension to my PhD and how we were going to handle it.
Drove back to Oxford Thursday evening and had another crying episode going through Bicester. Was very tired and cold the rest of the evening. Went to Sainsbury's, and on the way back had to stop several times. On the footbridge I had to stop and hold onto the rail because it was suddenly like there was an earthquake and I thought I was going to fall over. Marko insisted that the bridge hadn't moved, but it felt like the bridge was moving up and down quite violently. Took another prothiaden before going to bed. Still didn't sleep very well. Was very cold.
Went into town this morning, which was very tiring, and have been cold all today. Have been wanting to cry for some hours now but have been unable to. The fireworks have been making me very nervous and jittery. I now have quite bad chest and head pains and my feet feel numb and tingly at the same time.
I have had a few episodes of vision problems this week, particularly on Thursday morning and also on Wednesday lunchtime. Still having muscle spasms in my fingers and occasional numbness. The numbness is accompanied by a sort of cold tingling so it is like I have sensation but it's all internal. The burn I got last weekend is healing slowly. Had some quite bad stomach pains this week - got some now - and have been more irregular than ever. On Thursday it was almost every time I went to the loo. The tic in my eye was really bad last night. I've been having some really clumsy moments and sometimes my arm will have moved without me telling it to so I knock things over. I had a small, despairing, suicidal period on Wednesday night, but have generally felt more emotionally exhausted than anything else. I have felt rather like a fractious baby; crying because I'm so tired and uncomfortable all the time.
Don't feel too bad emotionally right now, but I actually find myself getting more worried in the moments I do feel relatively normal. It almost feels like I'm scared I'm suddenly better, like I don't want to get better, and it's almost a relief when the pain starts again. I don't know why I'm scared of feeling better, but I think it's something to do with the fact that I'm still trying to come to terms with being ill, and I'm just not ready to cope with being better again. Not just like that. It's just so difficult to cope with anything. Even when I'm coping I feel like I'm only doing so on the outside and what I really want to do is go to bed and have someone I love bring me tea and give me a cuddle and pay attention to me. At the same time I get fed up with myself for feeling like that and then I get stressed.
I want to get better, but I feel like I want to get better myself, in my own time, and not just subdue the symptoms with chemicals. I dont want to take the drugs in case they make me feel better, beause I know they can only make me feel better and whatever this is will still be lurking underneath. I'll feel better and be expected to go back to how I was before, but I feel that there would still be something very wrong. I want to get better, not just feel better, and my body seems to be telling me that will take some time.
I am taking the prothiaden though, becasue I don't want to feel terrible all the time. I just don't want any artificial improvement. Still no word of my follow-up appointment at the eye clinic or for MRI.
Felt awful this morning. Yet another restless night and now the prothiaden seems to be having no effect at all. Extreme nausea, weakness, very very cold, a fair amount of pain and blurred vision.
After an hour and a half I decided I could not miss a day at the Stones and drove up there. I was very jittery and had trouble concentrating. Saw Tom hitchiking in the opposite direction. Stopped to say hello and nearly burst into tears when he asked me how I was.
Got to the Stones and nearly collapsed in sheer frustration when I saw the mess in the hut, knowing that I didn't have the energy to tidy it up, and just fed up having to clear it out all the time. I was in a lot of pain and absolutely freezing, so I checked the circle and then phoned Karin to tell her I wouldn't be out there today. Felt a bit better knowing the place was ok, but awful leaving it.
Driving back I got the web-cam effect really badly. It felt like someone was squeezing my optic nerves - in both eyes, and it was as if the lag was in my neck and shoulder muscles, my awareness of my head position, as well. Felt very dizzy, sick and frightened. Was cold despite the heater and four layers of clothing. My arms and hands semmed very pale, almost translucent, as if I could see through them. Legs were very weak and sore. Cried a fair bit on the way back, and then some more after I got back.
Was fairly miserable all afternoon. Managed to get to Sainsbury's and back without stopping, but it was very hard, especially up the steps. For some reason I had a craving for chorizo and ate until I felt sick. I still feel sick now. The trip gave me a very bad headache, in a sort of cage across the top of my head.
Went to the video shop a couple of hours later and it seemed to take forever. Had trouble picking my feet up properly, ended up sort of shuffling. Feet became very painful, cold and tingly. Legs ached.
Feet still cold and tingly. Headache not so bad. Chest pains went away for the afternoon but I now have a really bad stabbing pain on the left side, below the breast by about three fingerbreadths, underneath the tips of the ribs there. Feel stressed, jumpy, and all the fireworks aren't helping. Hands are very itchy and my eyes (both of them) are still sore. I was very pale when I got up and my eye was bloodshot but it doesn't seem to be now.
Feel tired, deep-seated tired, the sort you can work through and do because you know you can't sleep. Have had pretty bad abdominal pain the last couple of days.
Bad day today, one of the worst. Only thing I didn't have to deal with today was actual vomiting.
Was too weak to get up before 1430, and then the effort and the pain reduced me to tears. Chest pain, headache, pain in my limbs, intense tiredeness. Muscle spasms in hands began almost immediately and continued intermittently all day. Incredibly cold, despite 4 layers of clothing and the fleecey sleeping bag.
Vision was bad most of the day. It hurt my eyes to look at things and I felt the pain in the back of both of them. Had bad muscle spasms in my shoulders and neck. Everything else feels very tender still.
At about 1800 had a really bad spasm in my right shoulder and lost the use of that arm. Right hand was much warmer than the left and swelled and darkened slightly. I could still just about move the fingers and the arm wasn't floppy, it was stiff. This lasted about 30-45 minutes.
Cried for most of the day. I just hurt, inside and out. Became very confused and couldn't understand at first why it had got dark outside. I got quite scared. More fireworks.
Became quite numb and sort of detached about 2000. Arm was still very weak. I tried to doze, but couldn't. Had a bath just after 2100 and I couldn't tell how hot the water was until I climbed in. Nearly scalded myself. Felt a bit better after that, but I was still very wobbly, weak and cold.
Stomach pains have been back today, and I got fairly depressed in the afternoon but couldn't think of anyone I felt I could call. I did ring Marko just after my arm went, and that helped a bit, but I was very frustrated and stressed trying to make some hot chocolate to warm myself with only one working arm and it was almost too much for me to bear.
Feel kind of spaced now, miserable in a numb kind of way. Still in quite a bit of pain but it's not as distressing as it was before. Marko is back now, which helps. Still can't bring myself to take any medication for the pain, although I was desperate enough earlier to consider taking a couple of diazepam in an attempt to sleep through it. I didn't, and thinking about it I couldn't have anyway because I left them at Silsoe.
Today has been quite painful and I have been terribly tired and miserable. Chest pains around the ribs have been particularly noticeable. Web-cam effect noticeable but not as bad as Saturday. Have been too tired to cry, although I nearly did on the phone to Andy at lunchtime and again on the phone to Marko tonight.
Took me a long time to get going today. Stomach pains have been quite bad and I have been quite nauseous. Lost feeling and movement in my legs when in the computer room this evening and was stuck there for longer than I wanted to be out. Have had bouts of synaethesia these last few days.
Haven't felt as cold this evening. A couple of times have even felt too hot. Very bad pain in my left wrist, on the point of the bone on the outside. Hands spasmed earlier and turned bright red. The pain got bad and I started getting confused and lost. It happened while I was talking to Marko too, and it seemed that my speech was slurring and I couldn't get the words out properly. They seemed to be stuck deep inside my head somewhere, where I couldn't even think of them properly.
Terribly, terribly tired and nauseous now. Bad pain. Going to bed. Try the cocodamol, see if I can get some sleep.
I expected today to be bad, considering the pain I was in when I went to bed. Surprisingly, it hasn't been too bad at all. It was, largely, a coping day and I even managed to get some work done.
I was up by 1030, and although I have had constant soreness and intermittent severe pain in my ribs, it hasn't been as distressing as it can be. I have been cold and weak, and even the few steps up and down to the computer room were formidable, but I haven't had a really bad bout of depression.
Although I woke up quite early, I did sleep right through, about six hours straight, which is a lot for me in one go. I ached this morning and I still feel bitterly tired. My head has been uncomfortable rather than actively painful.
Haven't eaten for a couple of days now. I tried a sandwich earlier but got sick half-way through and had to give up. Had quite severe muscle spasms the last few hours, which eventually became painful enough to wake me from the doze I started at about 2100.
Right now my legs hurt quite badly and I get stabbing pains in my sides when I breathe in. Marko called earlier and my legs were so weak the muscles were trembling as I went down the stairs. I was even panting on the phone.
Have not had any episodes of confusion today but my vision is playing up again now and my eye smarts. My skin is very dry on my face and my hands and feet are very cold. Feel rather sick.
Have taken some painkillers because my ribs hurt so much when I touch them or lie on them I don't think I could get to sleep. Playing pool tomorrow, so I hope I am able to drive.
Starting to feel lost and weepy again, so I think it's time to go to bed before it gets really bad.
Going to bed did not help. The pain became quite bad and I became very alert, scared and nervous. I saw bright splodges with my eyes closed and nothing but darkness with my eyes open. People across the corridor were very noisy, but even after they stopped I kept hearing scrabbling in the corners even though there was nothing there and the lights flickered when I turned them on like I was in a cheap horror film. Spent most of the night feeling agitated. Had a couple of apparently waking nightmares. The cocodamol didn't really help at all.
Despite being awake, couldn't get out of bed until after ten. Was quite weepy, very, very tired and in a lot of pain. Legs hurt very badly and I felt sick. Was bad all morning, didn't feel like going to play pool, but went anyway when Peter cancelled and I found out Dave had taken the day off to play. We played late and I really enjoyed myself. I relaxed and felt quite happy for the first time in ages. I was still in pain but it didn't bother me so much, although I wouldn't say that the intensity decreased.
Things went downhill again this afternoon. Ended up crying in the computer lab and was in tears from the effort of getting home. Had to stop once on the steps up from the computer room and hold onto the rail to get my breath back. Had to stop twice on the stairs in the house. I've almost come to dread getting phone calls because of the effort of getting up and down the stairs, but I do still like getting them and having a chance to talk.
Was very cold all last night and have been this evening although I was ok during the day. Headache slight and intermittent although eye has been irritated. Stomach pains haven't been too bad.
Analysed some data this evening. An up and down day. Trembling now, tired but fairly alert. Going to try going to bed anyway.
Have just spent 12 hours in bed and slept for maybe 30 minutes. Pain bad all night. Head very bad now. I can feel the pressure cooker starting again. Tried getting up earlier and managed to sit up for maybe 5 minutes before pain and fatigue made me get back into bed.
Muscle spasms have already started. The 2 minute silence had me crying. I have work to do and all I want to do today is hide.
I'm so very tired. Vision is blurred. Crying even now and I can't stop shaking. Not cold at the moment but I ache so badly. At least I gpt my MRI and eye appointments through yesterday.
Bad patch last night where it felt like someone was trying to lever off the top of my head.
Not been a good day. I've been swinging sharply between feeling relatively happy and very miserable. I have been extremely tired and in a fair amount of pain all day. Vision has been bad and I have had a severe headache. Movement has been extremely difficult and made everything much worse.
Right leg went into spasm at about 8pm and has been getting progressively more painful. Right foot now tingly, bit worried about thrombosis but I expect it's just another muscle spasm. Foot cold, pulse in ankle fine. Hurts most in the hamstring at the top inside my thigh.
Been feeling very sick and had some moments of confusion about 6pm when I couldn't think properly and had great difficulty articulating things. Managed to eat some toast just now. First thing I've eaten since Sunday.
Extremely tired. Head very painful. Feel stressed and anxious. Don't want to go to bed because the last few nights have been dreadful. I'm back to feeling too tired to cry and am quite irritable. I'm hoping that spending the next couple of days with Marko will improve my mood.
Pain now primarily in head and leg but for most of the day I have also had bad chest pains, particularly around the sides of my ribs. I have been extremely weak. Have oscillated between being hot and cold - some correlation with my mood.
For the first time today I actually ad to question whether I really should have been driving, but was okay after a short time.
Finally got some sleep last night but it doesn't seem to have helped much. Pain has not been too bad, but I am still getting twinges in ribs, head and hips. Have been very weak and slow. Legs tremble on stairs.
Sore throat is threatening to come back. Feels uncomfortable now. Could hardly talk when I got up at 1pm. Vision was bad all morning, having some trouble with motor co-ordination. Feet have been cold and tingly all day. I feel quite cold now.
Tinnitus is bad at nights at the moment. Still haven't managed to eat anything substantial. Feel quite nauseous. Been teary a few times today, but for the past few days I have found it very difficult to cry. I feel the need for that release but there's a dullness inside me that puts a block on it. I'm worried that this is the medication - I'd rather have crying fits than this horrible, pent-up, numb sort of nervous anxiety. I still get depressed and miserable but I can't purge myself of it. It just sort of subsides when I can't maintain it any longer and goes back to lurking. I've noticed my mood swings have been increasing in frequency - I used to be up and down over the course of a week or more, but now Im more changeable than the weather.
I'm not sure whether I feel an improvement or not. The physical pain is certainly getting worse and more constant and widespread. I have not, on the other hand, had another long-lasting fit of suicidal depression, but then that came after a particularly tiring and emotionally taxing couple of days.I don't feel any better in myself. I feel I am learning to manage being ill and I'm no longer so scared of what is happening - mainly because I know things are being done. I feel subdued, like I'm running out of energy to react to what is happening. I'm very worried at the thought of the medication suppressing and deadening my reactions to things that are still happening.
At the moment I feel very tired, cold and unsure of myself and how I feel. I don't actually know how I feel. Hollow, perhaps, might describe it. Hollow, tired and numbly anxious. And trembly. Not better, anyway, just like I've had an okay day.
Right now I think I'd be relieved if I could have another massive fit of crying.
Strange day today. Pain constant but somewhere else. Muscle spasm in right thigh back. Very weak, cold, tired. Went to bed late last night, almost 4am. Woke at 8. Couldn't get out of bed til after 2pm. Stumbled to Sainsbury's, stumbled back. Spent rest of day in 2 sleeping bags, utterly freezing. Stairs difficult, thinking difficult. Have become preoccupied with problematic finances.
Feel like I'm zoned, like most of me has switched off. So cold. On the verge of tears but unable to cry. Motor co-ordination less than good. Feet don't work properly. Vision not too bad but eyes hurt. Very nauseous. Hungry but food makes nausea worse. Have not actually vomited.
Yesterday not too bad. Out at the Stones. Happy-ish but tired and cold. Legs ached badly by end of today.
Chest now sore like someone standing on it. Hurts now, right side of centre. Head sore. Don't really know what I'm doing. Feel quite depressed, thoroughly miserable, but also detached in some ways. No energy to be truly depressed. Feel unable to cope, everything seems too much for me.
Horrible dreams last night. Neck and shoulders stiff and painful all day.
Another horrible insubstantial day. Head has been uncomfortable with occasional blinding spasms. I have been particularly photosensitive today. Generally uncomfortable but nothing specific. Extremely tired. Eyes have been sore all day. Knees painful. Legs very weak.
Didn't sleep very well last night. It was dawn before I fell asleep. Leg pains became progressively worse last night but had gone back to a general ache this morning.
Have been getting sharp, stabbing, longitudinal pains in my long bones, also in my joints, specifically hips, knees and wrists. Neck and shoulders very stiff and sore today. Muscle spasm back in top of right thigh. Can't extend right leg forward. Hip seizes at that point.
Extremely cold, sick. I feel sick in my head which is very odd. Fingers feel stiff, numb and tingly, also very weak.
Emotionally I feel achey, sore, tired and miserable. I don't think I've felt achey emotionally before. I feel like everything is all screwy and the nervous signals are getting mixed up inside my head. Had a bad, a really bad bout of depression late last night.
Still haven't been able to cry. I really do just feel too tired and sore for anything.
Loud noises difficult to handle right now. Tinnitus has been quite bad today, worse than usual, making my head hurt. Feet so cold they hurt.
I'm really finding this difficult to deal with right now. Everything hurts so much. I'm very worried about my work. Even when I'm there I can't concentrate properly. I don't want to give up for any length of time but I can't seem to get on with the things that I need to be getting on with.
I'm quite scared.
Today not good, last night dreadful. Went to bed, was bitterly cold for several hours, even after getting into sleeping bag underneath 2 duvets. Finally fell asleep after dawn. Woke late, about half nine. Had to get to doctor's appt at 1250. Staggered into car, had a difficult drive over.
Tried explaining recent developments to doctor. Feel like I've been labelled as having ME from the start. Doctor said it is quite possible I don't have it - said he'd be surprised if it turns out to be that. Didn't know whether to be happy or not.
Thinking very difficult. Headache quite bad. Cried in the doctor's and later when I went to see the nurse. Great difficulty producing sufficient thought to articulate. Brain seems to keep shutting down.
Tinnitus ok today, vision ok, walking not terribly difficult. Getting out of breath quickly though. Rib pains back now. Stomach pains had earlier. Now haven't really eaten since Saturday night (baked potato). Felt so nauseous today that I didn't buy any real food, just milk. Got some bananas just on the offchance. Occasionally look at them dubiously.
Crying has been odd - I tremble and tears come but it's not proper crying. Trembling significantly more pronounced in right side, doctor noticed. I think he asked me if that was a good thing, but that makes no sense and I may have imagined it.
Still feel scared, anxious. Desperately want Marko to call. He probably has and no one bothered to tell me.
Motor co-ordination not especially terrible but hands cold and stiff and sore. Feet cold and tingly. Absolutely exhausted. Feel totally unable to cope, reacting badly to slightest stress. Doctor says I have to avoid all stress.
Yeah, right, as if.
Marko's snoring last night tasted of crispy brown chicken skin. I want to go home.
Need to fill in yesterday's this morning. By the time I got around to it yesterday my brain had shut down and I couldn't string two words together, never mind wield a pen legibly.
Yesterday was in fact a relatively pain free day. I was absolutely exhausted, having failed to get any sleep at all on Tuesday night, and bitterly cold, and my motor co-ordination was poor, but I wasn't in any real pain.
That was my second day of feeling relatively okay physically. I almost want the pain to come back today because it's an easier symptom to cope with. It's more concrete, it's something I can point to.
Went to bed early, about 2200 because I thought I was going to fall asleep on my feet and my brain wasn't working, but I couldn't sleep at all. I tossed and turned all night. Wish I'd thought to look for the Leonids.
Started aching badly about 1am. Discovered that my lower right leg had lost feeling. Felt rather sick. Eyes hurt.
Head quite bad this morning. Eyes still hurt. Very tired. Haven't eaten since Saturday, still feel sick. Annoyingly, I now feel weak and ill without any real symptoms to list. I just feel terrible.
The last couple of days or so have been odd. I haven't really known how to describe them. I have felt almost normal, but peculiarly so, as if I haven't really been here. I've been fairly fuzzy, but not in a cotton wool way. Pain has been almost absent. Headache has come and gone, sometimes in the space of a few seconds. I've not lost feeling at all, but my sense of touch - sense of everything has been dull. Keep finding new cuts and minor burns on my hands.
Web-cam effect has come back mildly a couple of times. Still haven't been able to eat or sleep much. Vision has gone completely out of focus a couple of times. Been cold, despite central heating. Trembliness has come and gone, but I haven't been as weak. Still slow, but not as slow. I thought I was at normal speed until I had to walk somewhere with Marko.
Began to feel very stressed and shaky and stressed last night about 11, but I haven't been too bad today although feeling very dull in hands. Been getting occasional muscle spasms in right hand.
Feels very odd not to be in constant pain, almost scary. I have the odd chest pain but not as bad as it has been for the past 2 or 3 weeks. Legs still restlessly achey at times, but the pain was my one concrete symptom and I almost miss it.
Had a couple of dizzy spells - quite dizzy now, getting trembly again. Synaethesia hasn't been as noticeable. Tinnitus not so noticeable either. I sometimes catch myself looking very pale.
Hand seizing up now, difficult to write.
Last few days have been peculiar. Pain stayed away until Monday night, although I was achey, weak and very weepy on Sunday. Monday was a pretty good day all round with only minor vision problems and disturbances, a few instances of synaesthesia and dizziness.
Tuesday morning was terrible. I had slept for only 2 hours, between 6am and 8am, and awoke in such severe pain I felt extremely nauseous and thought I was going to vomit. I did not, but this was more a result of stubborness. I was extremely fragile and had blank spots in my memory of the previous night which have still not returned. I began to feel a little better after a very short walk and a glass of orange juice.
The day did improve from that brutally unpleasant start, although I did have bouts of nausea, dizziness, visual disturbance and olfactory hallucinations/synaethesia. Pain came and went, primarily in head and chest.
Tuesday evening I had a bad spasms in my shoulders and my right arm seized. It rurned purple again, although this time it was much colder than my left arm. It was not cramped, as it could be moved externally and was not rigied. It seized in a bent position and Andy noted a linear increase in resistance when trying to straighten it. I felt the seize at the bottom of the bicep and in the shoulder above the clavicle and also in the right side over the ribs. The arm was numb and without feeling for some time, perhaps an hour or more and for a long time I did not recognise it as my own and became quite disturbed and panicky.
Did not sleep at all on Thursday night. Felt sick again Wed morning with severe back pain and head pain. Was very shaky. Felt rather detached.
Have not cried much the last few days and have been generally able to walk further and faster than usual, although even a short walk of 1/4 mile can leave me panting and seeing black spots/tunnel vision. Have been very sensitive to bright light and loud noises. Have had hallucinations in peripheral vision and also in the form of bands of light [brightness] sweeping across my visual field as if bands of sunlight were passing by, like standing on sand below a rippled water surface.
My weight has now dropped significantly below 9 stone, perhaps as low as 8.5 stone. Normal weight 10 stone or more. Have been up to 11.5 quite happily before now. This is a large weight loss for me. Having trouble eating because of nausea, but also large loss of appetite.
Muscle spasms more noticeable on right side recently. Getting them in hand just now.
Feeling calmer emotionally, generally somewhat brighter. I'm not down all the time but I'm still having bad patches of getting overly stressed and occasional depression. Medium stresses like finances cause me huge problems. Tinnitus still noticeable but I am finding it easier, mostly, to get up - insomnia getting bad again. It wasn't easy this morning. Asleep by 4am, slept til 10am, couldn't get up til one cos lower half of body sluggish and unresponsive. Fingers very tired today. Shoulders and neck very stiff and sore.
Not really sure how to describe things. Friday was in hospital, got pretty stressed. Pain became pretty severe and I cried. Right arm seized. Eye examination clear, arm came back in car. It had turned purple again but I didn't lose much feeling and at no point thought it wasn't mine. Last two fingers took a lot longer to come back again.
Very tired that day, not a good birthday. Spent the night at rollrights but didn't get cold, although I had this zoned out time when I had to get awy by myself, although I don't remember much of what I did. Mind was blank.
Bad this morning (Sat). Lot of pain, very weak and dizzy. Didn't really sleep although I was quite comfy and not at all cold. Felt nauseous, but it was mild all morning.
Practically passed out at lunchtime. Nearly fell over, felt sick and sweaty and cold, vision going black and tunnelled. Arm seized again, must have come back while I was sleeping.
Went out, but had to come back after half an hour because I felt so bad. Now feel cold and weak and miserable. Bad pains around bottom of rib cage - skin excrutiating to touch, as if I've badly grazed myself. Legs weak, very shaky, particularly in right hand. Vision blurry. Been wearing sunglasses a lot cos eye hurts all the time. So very tired. Been quite depressed all day. Had some suicidal thoughts, bad briefly yesterday. The pain is so much and I feel very alone.
tinnitus not so bad but muscle spasms are and motor co-ordination has been pretty terrible. Got toothache now too. Worst of all is pain over kidneys though. Feels almost like skin has been scraped off. Getting difficult to write too because hand doesn't work properly. Thumb hurts. Back, shoulders and neck still very stiff. Very irritable.
Odd week. Been very listless and unmotivated, nervous abt scan on Friday. Sunday was awful, felt sick and weak all day. Had to stay in bed til 6pm on Monday because I couldn't move. Intense pain everywhere, esp. in back. Struggled into work on Tuesday, mainly cos of doctor's appointment. Was getting more and more depressed. Eventually collapsed again on Wednesday evening, in an absolute fit of suicidal despair. Apparently came back to Oxford rather than risk being alone, but don't really remember Wednesday night at all. I think my arm went at some point.
Next clear memory is being woken up by PBLH on Thursday morning and not knowing where I was or who he was, convinced I had clown the car up at Silsoe the day before. Took a few hours to really get my bearings. Decided I was too ill to go back.
Scan Friday morning. Veyr peculiar. Saw flashing lights, felt base of skull get very hot, felt insects crawling over me and in my hair, had twitching in my right hand and smelled what I think was hot grapefruit. Certainly thought I could tell whereabouts the scanner was. Nurse said some people do feel it, but it wasnot usual and she had never heard bugs before.
Became numbly depressed, extremely so, later that evening. Very cold and shaky. Still cold and shaky today, vision playing up. Very photosensitive. Starting to feel sick now.
Have felt generally brighter, but thinking about it I am still spending a lot of time feeling really bad but the brighter moments are brighter. I can walk a bit further - I don't have to keep stopping on the way back from Sainsbury's, but I'm still getting out of breath and although I think I'm walking at normal speed when I'm with someone else I ealise I'm still really rather slow.
I don't know if I'm getting better. Pain has been not too bad generally this week. Not too many muscle problems. Brain has been slow though and my reactions have been down. Still rather irritated. Had a very stiff neck. Frequently nauseous. No actual vomiting. Still seeing things moving in peripheal vision. Synaethesia infrequent but intense. Throat often feels constricted which produces sick feeling.
Utterly despairing and dejected today. Been crying off and on since getting up, since before getting up. I really feel like I'm dying and can't understand why it's taking so long. Pain bad in chest and legs weak. Right arm very weak. Very cold, light hurts. Shaking comes and goes.
I really don't think this is ME, but I don't know what it is. Really feel I can't cope any more.
Bad week, awful week. No energy even to fill this in. Weak, right side weak. Severe pain, trembling, sickness. Confused a lot. Still photosensitive, having bad dreams about dying a lot. Can hardly hold the pen. Been very depressed and have been crying lots. Skin has been really bad, memory not working properly. Legs aching a lot, severe back pain. Cannot raise my head properly, neck been too stiff and sore for about 2 days now. Occasional arm spasms but no loss of sensation that was noticeable. Haven't really noticed synaethesia but I think I might just be getting used to it. Been dozing a lot but not sleeping well. Eating has been better but I still get sick. Sense of time has gone loopy and have been finding it very difficult to cope. Extremely worried about PhD. Getting very stressed, to the point of tears, over little things.
Numb sort of day. Cold, hands still not working properly and arm very weak. Can't make it do what I want. Stomach sore, back and shoulder spasms agonising. Got bruises on my spine. Very shaky and tired, feet very cold. Joints very stiff and sore. Digestive system playing up still. Loud noises painful. Feel very scared and nervous. Heart seems very loud. Can feel my pulse twitching in my ankles. Tinnitus very loud, eyes smart.
Getting difficult to find the motivation to fill this in. Seems so pointless. Doesn't seem to matter what symptoms I have, people have alrady decided what's wrong with me and I don't agree with them.
Pain not so bad at the moment. It comes and goes, mainly in chest and abdomen with frequent point headaches. Weakness in arms still thre, particularly right. Losing use of 2 fingers more frequently.
Having big problems with confusion. Stress sets off periods of intense emotional distress which I seem to blank out later. Really little things seem to set this off the most. Big things go straight over my head and I barely notice them.
eating a little better. Not feeling so sick so much but still getting nauseous and bilious, generally about an hour after eating, lasting between 3 and 12 hours.
Photosensitivity getting worse. Currently feel like I'm about to have or have just had flu. It's going around. Sense of time completely gone. Keep thinking things that happened months ago happened only yesterday. Having trouble with my memory. Keep losing bits of it. Confusion getting pretty bad too, particularly fist thing in morning, though not every morning. Tends to hit early-mid evening too, or when I'm tired/stressed. Tired/stressed most of the time.
Skin has got really bad. Looks awful. Dry, flaky and oily. Periods have practically stopped. Down to one half-hearted day now.
Can walk further now. Don't fall over so much. Synaethesia still popping up, also three flavours of hallucinations. Insomnia comes and goes. Can't sleep until utterly bone tired. Never feel like getting out of bed in mornings.
Still cold a lot of the time but not as cold as I was. Still too cold. Getting frstrated. Thinking about work, things I'd like to do - thinking about going walking and cycling againand not sure I'd manage more than half a mile. Still getting sick if I drink red wine.
About to get MRI results. They won't have found anything. Think i want to kill someone.
Stopped taking meds last Saturday. Wasn't helping and was feeling utterly frustrated. Low-level depression still there. Very lonely a lot.