Symptom Diary

07/02/2000 - 07/08/2000
07/09/2000 - 07/15/2000
07/16/2000 - 07/22/2000
07/23/2000 - 07/29/2000
07/30/2000 - 08/05/2000
08/06/2000 - 08/12/2000
08/13/2000 - 08/19/2000
08/20/2000 - 08/26/2000
08/27/2000 - 09/02/2000
09/10/2000 - 09/16/2000
09/17/2000 - 09/23/2000
09/24/2000 - 09/30/2000
11/19/2000 - 11/25/2000
11/26/2000 - 12/02/2000
12/10/2000 - 12/16/2000

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Saturday, August 19, 2000

13:02  Pain still there, most particularly in head this morning. But it is always better when I wake up, get steadily wrose through the day. Still stiff - have managed to get up the stairs once without crawling, don't know if it will last. Lower back still painful. Not quite so weepy but then Marko here, I am not alone. Mary here also, so have to keep a good face on for her anyway. Plan to try getting out of the house today, but worried I won't even be able to make it as far as Sainsbury's.

 

Friday, August 18, 2000

11:18  Am reduced to crawling up the stairs. My lower back is on fire, and it turns out that the consultant Karin recommended has retired from the NHS and sees people privately now. And only sometimes. It feels today like the entire thing is hopeless. It hasn't hurt this much before, not for this long. The pain kept me awake last night, when I wasn't dreaming vivid, incredibly vivid dreams. My eyes burn, I'm weepy, I am having tics and spasms, abdominal cramps. My kness are so painful and stiff and weak I have put the braces on just so I can get to the toilet. It feels like something has infected my skeleton and my bones are crumbling away. Everything takes a huge amount of effort because it hurts too much. My skin is terribly sensitive to pressure, the skin across my shoulders is burning and they feel compressed, tight.

I don't know how to cope with this and I'm still too wary to go to the doctor in case he tells me it's all in my head and I'm just depressed and tries to put me on anti-depressants.

 

Thursday, August 17, 2000

10:41  I thought, I really thought, it would be better today. I didn't think it could continue like yesterday.

But it's worse. It's actually worse. And I can't stop the tears because today I'm alone and yesterday I wasn't and I don't know how to cope.

11:51  You know when you hit your elbow in just the wrong place and the pain shoots along your arm so you gasp and it goes weak and you can't work it? That's what this is like, but the pain shoots along all my limbs, through all my bones. It's in my jaw, in my ribs, everywhere. My joints feel swollen and stiff but they're not. it's not quite as intense as that first shock of pain when you hit your elbow, but it's the lingering intensity of the pain that comes just after, and that's enough, when it goes on for days. The pain stops things working and I really can't cope with it any more.

 

Wednesday, August 16, 2000

10:51  Yesterday was bad, really bad. Brain terribly confused, weepy, back pain awful. Seemed to lose big chunks of memory. Would occasionally forget what I was doing and who I was and stand there staring blankly for a few seconds. Words difficult. Breasts incredibly tender today, every movement feels like they're going to be ripped off. Joints all very stiff and sore, feel like giving up, sitting in a corner and weeping. Skin itchy. Vision painful too. Head tender. Skin cold but hot inside.

I can't understand what's happening to me today. I can't seem to get a grip on my surroundings. I haven't lost context entirely but it all seems superficial, like the colour of the wrappers in Quality Street. You don't eat the wrappers. A box full of wrappers only tells you what sweets used to be there or should have been there. I have things to do today and it seems like a different world. Out there.

Crying again now. I can't take this pain much longer, I really can't.

20:17  Pain is exquisite. Today I feel so ill I wonder if perhaps I am dying, and the pain is so bad I worry that I am not. Too much of today spent semi-conscious, trying not to cry and whimper. I have a fever and I am trembling badly. Strangely my appetite isn't completely gone, but a mouthful or two is enough to make me nauseous. I don't know what to do. I feel like I'm at the end of my ability to cope.

 

Tuesday, August 15, 2000

09:33  Been sick this morning, pain so bad. Shaky and hot. Not very happy.

 

Monday, August 14, 2000

21:24  Hurt all over. Been unconscious/sleeping for about three hours. Shaking, shivering. Look pale and drawn. Teeth hurt, mouth dry. On weak tea. Brain confused, vision wobbly and a bit warped. Coccyx constantly flaring hot and painful. Terribly lonely. Also vaguely anxious about contact with people, like there would be too much static and my head would hurt too much like it did today with the coachload of German tourists I ended up having to struggle in German with. Too much static. Been hot and sweating too, possibly coming down with something. Hope not.

22:22  Notes taken during the day:

Odd day today. I almost feel I am wearing my body. It's stiff, very stiff across the shoulders and I feel a distant frustration that it does not hang the way this distant person expects. The joints don't move freely enough and it is not tall enough. The neck doesn't sit correctly, the pelvis seems to be out of alignment. It's too rigid, too fixed. It occupies the wrong amount of space in the wrong way. The head is the wrong shape, the field of vision too narrow. Every so often I find myself rolling my shoulders back or cricking my head round or twisting in a certain way as if I can break whatever is constricting my movement. Perhaps spiders feel this way when it is time to shed a skin.

Dizzy and tired. Muscles in hand and arm so weak can barely hold the pen. Woke up with a split tongue this morning. Really should go to the gym today. What I actually want to do is go home and go to sleep again, but I don't know how much the tiredness and pain and weakness is a direct result of not going to the gym for two weeks.

 

Sunday, August 13, 2000

11:52  Now I have PMT to add to my list. My breasts feel huge and heavy and I'm a bit puffy all over. The pain got bad in my limbs last night. It seemed to start as a tiny ball in my pelvis and lower back and roll down into my legs, which started throbbing and aching like they were about to start cramping. Then it happened again, but rolled upwards. My feet swelled up and turned rather red and I began to feel extremely tired. My words got rather slurred, apparently I was speaking incredibly quietly, and I had trouble finding the words. I had that problem all day yesterday. Spent too long playing charades trying to get Marko to work out what I was trying to say. When I cycled into town I was slow and stiff.

Slight headache this morning. Pain deep in my chest, but nothing serious there. Legs are still achey and I'm quite stiff. The hot weather is not doing me any good at all. I get quite sick just because of the heat.