Saturday, 1 Jan 2011
To begin with, I’d slept through the New Year celebrations, because basically, I couldn’t be arsed. I felt so crap anyway, as I still had a stomach ache – it still feels like someone kicked me in the abdomen - after a painful attack of IBS on the morning of the 31st. Managed to check my meagre finances, pay the odd bill and “potter” a bit on the internet.
Sunday, 2 Jan 2011
Woke up too early, from not enough sleep, feeling utterly exhausted. By mid-morning I gave up. I couldn’t sleep, because I’d gone way beyond tired, but I couldn’t do anything productive, so I lay down to half watch [for watch read: it was on] some banal TV that I didn’t need to think about in order to follow. Today, I wrote this, but otherwise, it ain’t shaping up to be a much better day. In what way can I see any of these things improving in 2011? Frankly, I can’t.
Not the best of days and not the worst either. Got 7 hours sleep and was up at 8am, which almost gave me the idea that I could have a productive day, but did not feel well enough to go out and cancelled appointment to go to a group in the afternoon. I know I felt too crap even to write this diary on the day, and now I can’t remember what I did, so it cant have been at all memorable! Did arrange doctor’s appointment for Friday to discuss the Gabapentin.
Woke up with the stiffness and aches of being cold – not that I felt cold, just that the temperature had dropped to a level that increases my symptoms. Again had the sore throat, sniffles and feeling in my throat of having catarrh (though blowing my nose produced none) and the same type of headache – a vice-like, feverish headache – I used to get when I had fevers and recurrent tonsillitis as a child. It wasn’t even possible to raise my head up from the pillow without it feeling like my head would explode and I would throw up, for at least half the day. For the other half I was just exhausted.
Still suffering post-exertional malaise and unable to do more than recline. Even getting into and out of bed is difficult and feels like a major exertion. Talking on the phone caused me to start losing my voice and get a sore throat. If I tried to continue to talk, I just started coughing. Flu-like malaise and aches so bad I took a flu treatment to try to help relieve symptoms. Another day where I was unable to do any more than skim reading and not really concentrate on banal TV.
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| The wonderful Holly |
Monday, 3 Jan 2011
Managed 10+ hours of sleep last night, but, as is common, it was plagued by lengthy, vivid dreams with realistic and convoluted plots. Again, as happens a lot, Holly was with me in these dreams. We played, she bounded everywhere – like she did. It was WONDERFUL spending this time with her. It was DEVASTATING to wake up each day to the realisation that she’s gone and then re-living the unbearable grief. Woke with a headache, stiff and couldn’t get going until after the 2nd cup of coffee and really didn’t anything constructive after that. Updated the music on my MP3 player, which was not a great thing to in the evening, as the music stimulated me too much, so I couldn’t get to sleep until 3am.
Tuesday, 4 Jan 2011
Woke with the alarm at 8am, but was too knackered to move until 10am, having dozed in between. As we’re now back to the normal vegan diet, I actually don’t feel quite so bloody awful today. Nausea gone, so maybe I’m getting used to the Gabapentin too. [Spoiler alert: I wasn’t.] Better, of course doesn’t mean cured though, because I “just” feel as if I’ve been beaten and battered and flattened by a steamroller - a day where I feel that “if I take it easy”, I might feel able to do something in a few days. Exactly how one takes it any easier than being bed-bound except for loo and kitchen trips though, I can’t say! Did nothing productive and instead spent the day merely browsing fun and pleasant things and bought a few items on eBay to add some colour and cheer to my surroundings.
Wednesday, 5 Jan 2011
Only 4 hours sleep last night – music is great, but it’s too stimulating late at night – so I woke up feeling absolutely dreadful. Interesting article on Science Daily said the metabolic cost of a night without sleep is roughly equivalent to a 2 mile walk. Although it's hard to get across how severe the effects of something "as normal as" a two mile walk would be, in contrast, for someone with ME.]
But, I can absolutely equate to that. The [physical] stress of the missed sleep has left me feeling strung out, and has caused another cold sore, so I feel unwell generally from that. Pain levels (hip, neck and back) raised again. Concentration impossible, so I did nothing productive again, beyond writing one short email.
Thursday, 6 Jan 2011
Slept from 2am to around 10:30am, but I don’t feel caught up from the lack of sleep the night before and thus, woke up feeling like I still needed a lot more sleep. It’s also raining (again), so pain levels have shifted up yet another notch and the effects of Naproxen – which isn’t much anyway – soon wore off. Trying to read with music playing made me feel nauseas [more than usual]. When I got up to go to the kitchen, I felt dizzy and lightheaded again. Had chest pains all afternoon and into the evening, which also left me feeling tired and washed out. Pain in my right eye again. And back to not being able to go to the loo again.
Friday, 7 Jan 2011
Fell asleep just after 10pm last night. Half-woke when alarm went off, but didn’t actually stir until 11:45am – 13.5hrs sleep in total. Caught up at last? Nah. Didn’t feel any more able to do anything; certainly no more energy than usual, although less nausea. And weather still humid, so pain levels still high, particularly in my hip. Back pain particularly bad too, which might be related to [sluggish] digestive function. Again. So, yet another day where I browsed aimlessly as I couldn’t concentrate sufficiently for anything more, nor had the energy to do so. In sum total, I only managed productive tasks – online, lying down – for a short while (maybe an hour). Yes, this is ‘normal’.
Saturday, 8 Jan 2011
So much for a good night’s sleep. Woke up at 4am and didn’t get back to sleep again until around 6:30. Took another Gabapentin in hopes that would help, but all it did was to give me stomach ache and pains in the chest again. Woke at 11:15 feeling grotty, not rested and with a major headache. I really want to change the bed, clean the room and sort my wardrobe, but I just don’t have the energy or ability to do it. [For the umpty-thousandth consecutive day.]
Sunday, 9 Jan 2011
Didn’t feel too bad when I got up at 9:45am, but as soon as I made breakfast, I was absolutely done in. Spent the rest of the morning lying down. Later, changed the bed. It took an hour and left me shaking with exhaustion from the exertion and unsteady, nauseas and hot enough to fear spontaneous combustion. Almost. Taking a shower after dinner was difficult to stand and balance.
Monday, 10 Jan 2011
Tuesday, 11 Jan 2011
Didn’t get to sleep until 4am, but slept until noon. Got my 8 hours then! Cats not terribly pleased to be getting breakfast at lunch time. Nevertheless, I’d felt particularly bad hip pain even while I was still lying in bed. This didn’t get any better (and probably heralds rain). Also my knees are painful and stiff, clicking badly if I straighten my legs, in the same way as they’d be after a long walk. Thus, yet again, didn’t think it the best idea to grovel on all fours to clean the carpet. It will have to wait again. Was able to do some stuff on computer and watch some TV. On the other hand, just writing this is making my hand hurt again. Put off going to Spanish Circle for yet another month because I didn’t feel up to it.
[A combination of cheap quality carpet (not mine) and a hoover that doesn't work (this is denied) mean that cat hair (my fault, of course) has to be removed by hand, with a brush, on hands and knees. It is ridiculous torture.]
Wednesday, 12 Jan 2011
Hum mm … hump day and another, where, obviously, I had neither the energy nor the motivation to write this [diary] on the day. Slept from 03:45 to 10:30am, which is still not sufficient to be able to confront the day with any reserves.
Thursday, 13 Jan 2011
Only 5 hours sleep meant I started the day wired and tired and everything just went down hill from there, as there was no way to find either the energy or the motivation to do even the simplest of tasks. Started a few, but finished none, so gave up to watch [loose term for it was on, not that I was really focussed on it] yet more banal TV, and anyway, there wasn’t anything even remotely interesting on. This is no existence, let alone life! Got 3 hours sleep in the evening – fell asleep watching TV – woke up at 10:30pm and wasn’t able to go back to sleep again until 3:30am, despite being too tired to actually do anything.
Friday, 14 Jan 2011
As always when I wake up in the middle of the night and therefore get sleep in more than one block, I woke up feeling as though I hadn’t slept and was done in even before I began. Had to do some photocopying and printing and just this minor exertion and need to be vertical caused me dizziness, nausea, extreme sweating and pronounced shaking. Had an appointment with my doctor. She repeated my prescription for Venlafaxine and prescribed Pregabalin (Lyrica) instead of the Gabapentin. Went to the Post Office. Delivered some forms by hand elsewhere. Got a few items of shopping and collected prescriptions. Walking got slower and slower and more painful. Even shop assistants noticed that I was exhausted. Yet another headache. Hip pain off the scale. Pain in lower legs. Pain in back. Neck needs support because of the pain. Usual symptoms after an outing.
Saturday, 15 Jan 2011
Seven hours sleep – from 3:30am to 10:30am – isn’t terribly deficient, but still woke up beyond tired, with very little energy with which to confront the day. Otherwise [surprisingly after an outing] didn’t feel too bad – that is until I took my medications. Then I began to feel sick and dizzy. Had to get a stool as I couldn’t stand to make dinner. Was asleep by 8:30pm, because I was too exhausted and felt too unwell to do anything else. Will be glad to wean off the Gabapentin, because it has only done harm and no good whatsoever.
Sunday, 16 Jan 2011
Woke up at 1am and couldn’t get back to sleep until 6am. Simply couldn’t get comfortable as hip pain was spreading down and round the top of my thigh with a herpes-like tingling and burning right down to the bone. My knees felt swollen and stuck as well as painful. My lower legs hurt. The skin on my right foot is so painfully sensitive I can’t even put it down on the sheet. It is utter hell. Consequently, I am exhausted again today before I start.
Monday, 17 Jan 2011
Eight hours sleep (barring a few half-awake moments when the two fur people tried to raise me for their breakfast), all in one go and achieved without drugs. This is a first for months, but I won't expect it to be repeated. I decided to go “cold turkey” off the Gabapentin since I'd only been taking it for 2-3 weeks. I've also decided not to start the trial of the Lyrica (Pregabalin) until after I've given the Venlafaxine 3 months. After all, having waited this long for pain relief, what's another couple of months? Fell asleep at 8:30pm and woke up again at 10:30pm and was way awake again until 3:30am. Got another six hours sleep.
Tuesday, 18 Jan 2011
Cats were insistent about getting me out of bed at 9:30am. Still tired and not rested, because of getting sleep in two separate slots again. Fiddled around on computer, but did not have the ability to concentrate sufficiently to do anything constructive. Otherwise achieved nothing else today, besides eat.
Wednesday, 19 Jan 2011
Got the sum total of 2 hours sleep last night. Managed a nap of about 2 hours more in the afternoon and, in between, guess what I managed to do? Yep, nada, nichts, rien ... Nothing. At. All. Could barely follow a couple of episodes of ‘Bargain Hunt’. Consequently, pain levels, as usual in back, neck, hips, knees and lower legs are off the scale. The tenderness on the inside of my right foot (big toe joint) has also been increasing a lot again lately to the point that I cannot even stand to touch the bedsheets with it. Also, as is frequent when I’m super-exhausted, my nose is prone to bleeding and filling with dried blood.
Thursday, 20 Jan 2011
Took the cats out for a walk to the end of the house and back. [As you do.] Well, Kitty walked. Balu was dragged and carried, as usual. And just this minor exercise made me breathless, exhausted and left me feeling unwell from the “exertion”. By mid-afternoon I could barely sit up and had to lie down in the dark and quiet again. Dozed later, but didn’t sleep. Started getting a dull pain between my shoulder blades again, like I’d been hit and winded.
Friday, 21 Jan 2011
It’s been a very long time since I felt this close to actually puking, even though I feel a certain amount of nausea most days. I’m also shaking and just feel unwell. I’m also getting stabbing pains in my head, which are random and in all different locations – they feel like electrical impulses, which is probably what they are. Took Buscopan to quell IBS symptoms but still have an unbearable stomach ache. I’m also more confused and ‘foggy’ lately and think this all has something to do with when mother washed the kitchen floor with a highly perfumed, chemical product the other day. It made me feel ‘gassed’ or poisoned at the time. Went round to the local shop and as soon as I got back, I had another dizzy spell. Applied heat to stomach ache and fell asleep straight after dinner.
Saturday, 22 Jan 2011
Raw, sore stomach ache again. Tried heat, but it did not help. Just feel awful. Oh and it’s cold again, so hip pain in worsened and it hurts even to sit in bed.
Sunday, 23 Jan 2011
Woke up stiff, achy, with painful throat and a headache. Pretty normal day then! Made a concerted effort to rest in hopes it would make me feel a tiny bit better and more able. It didn’t work, but then it never does.
Monday, 24 Jan 2011
Tuesday, 25 Jan 2011
Snuffling / catarrh symptoms again, though today they responded to Beconase, so it looks like my allergies have been activated again, probably due to doing a modicum of housework with a new carpet sweeper. Will ask GP for anti-histamine at next visit. Woke up with the same stiffness from cold – house is unheated at night – again with a feeling of swelling in my joints, especially knees. Exhausted before I start, as usual, with the feverish headache. Actually felt a little bit better than of late and managed menu planning. Had to go to shop for food as had no alternative. Walk made me overheated and increased pain in my hip. Had to wait in the Post Office and almost fainted. Undue pressure being put on my with questions over when I will do tasks. Keep explaining that I will do what I can, when I can, but that I have no control over when that is. Mother just won’t get it.
Wednesday, 26 Jan 2011
Didn’t get to sleep until 7am. Alarm woke me at 8am, phone at 10am, cats at 11am and other noises in between. Apart from feeling strung out, exhausted, pain levels and headache are off the scale. Can’t even lift head off pillows without feeling that it will explode. Nausea particularly bad once more. Having had to stand to wait (for just one customer) at the Post Office yesterday afternoon, the pain in my lower legs returned last night and continues today. [This pain is extreme and was the main reason I was unable to sleep.] Hip pain from outing also much worse than usual. Woman saw me stumble / waver while I was waiting. Told her I cannot stand, but she looked at me as if I were drunk. Once more the pain in the left side of my back started up – the same one that began all this in 1995 – dull, deep and sickening, as it always does when I’m extra exhausted. Then I started getting chest pains and tightening round the chest. No option but to spend the day lying down and resting once more. Another day where nothing was done, but where there was no possible alternative.
Thursday, 27 Jan 2011
Lower legs in agony from the short walk to the shop on Tuesday – even when lying down. Joints clicking, feel swollen and painful from cold. Knees and ankles worst. Right shoulder was stiff and painful. Felt dizzy and sick as soon as I got up. Right hip painful again with burning pain right down to the bone, in and around the top of my thigh, bruised pain on the underside and tenderness like from a fresh injury on outside of hip. Mother admitted to hospital with suspected gall bladder problem. Did washing up, cleaned work surfaces, toilet and swept hall and kitchen floor – before doctor and paramedics came. This activity, once again, aggravated the pain in my lower legs and hip, resulting in complete inability to stand up. Dr McLeod mentioned this, as she had seen for herself how I was struggling. Had a bath in the evening in the hopes of relaxing, but both house and water temperature were insufficient to be of any benefit.
Friday, 28 Jan 2011
Fell asleep, exhausted, around 9pm last night and, consequently, woke up at 3am. Didn’t get back to sleep until some time around 7am, then had the utmost struggle coming round at 11am when the cats were screaming incessantly for food. Cold again with all related aches and totally exhausted before I begin, but have to go out shopping. Have feverish headache yet again. First went to Post Office and would have caught bus to town, but could not stand to wait for 30 minutes. Thus, had to walk – slowly – but the further I went, the more pain in my hips and knees. Also too slow to keep warm, which caused my thigh muscles to spasm, which again increased pain that radiated to knees and hip. Was unable to do all I needed to do and had to abandon and get a taxi home. Was too exhausted when I got home even to make food. Sore throat again. Feel ‘fluey’.
Saturday, 29 Jan 2011
Another disturbed night, due to the extreme pain caused by outing yesterday. Did nothing, except watch some TV. Extreme post-exertional malaise, flu-like symptoms, sore throat and coughing as soon as I begin to speak.
Sunday, 30 Jan 2011
I’m reclining on the bed, I can’t sit up properly, because that hurts my hip. My legs are supported, up, on a wedge pillow to reduce the pain from the blood pooling in my calves and ankles, but I’m still in severe pain and have to move them constantly. The laptop resting on my legs is painful. My arms and wrists can’t stand to type for more than five minutes at a time. Writing is so painful I’m breathing as if I’m in labour. Neck supported, because it’s too painful and weak to support itself. [NOTE: in 2022, this describes ‘normal’.]
