Journal Entries
Looking at things positively
Posted Jan 29, 2007
I desperately wanted to go out this weekend just past, I hadn't been to Croydon for 2 weeks and all I had done was walk to the bridge on the green and back. My right leg and backside hurt too much to sit down though, so a wheelchair was not the option. So once we got the taxi into Croydon, we found a walking stick, they actually help, so that was fantastic!
I got some stuff from Lush, the lack of sleep, exercise and the painkillers are taking their toll, so I wanted to treat myself to make myself feel nice.
Oh yes sleep, it was bad when I was getting 2 hours a night, last night I didn't even get that. I can't think straight, its very difficult to do my daily walk and exercise and keep positive when I am more tired than I have ever experienced before. It is a side-effect of one of my drugs, another side-effect was to have blood-shot and swollen eyes, which did stop after 2 weeks, so maybe this sleep thing will settle down as well?
But I got out, thats the thing to focus on.
Being hopeful, maybe I will get more than 1 hours sleep tonight.
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Latest reply: Jan 29, 2007
Accepting disability - its not easy
Posted Jan 21, 2007
I have been trying quite a few prescribed drugs for the past few months. One worked really well, I began to be able to sit up again for longer than 10 minutes, but the side-effects after 2 weeks were too bad too continue.
The replacement however is slowly turning my eye red and very sore, so I am looking to come off it.
Another drug seems to make no difference at all, so I am re-starting the first drug again, with another drug to go with it, just to try and stop the side-effects.
Its all so daft.
I also have a tens machine.
Between the lot of them, I can now sit up for a couple of hours on a good day. I can walk a couple of hundred yards. I can sleep for usually 2 hours at a go and sometimes I have been known to get 4 hours in, but thats only with the help of the first drug, with the nasty side-effects.
Most of the time I cope well. I don't even have a diagnosis yet, but thought is leaning towards a neurological disorder. I have no idea though whether this is permanent, will get worse, or can be managed with drugs etc.
I get pain which makes me cry and tense up, but most of the time I cope. I accept and am happy just to potter around at home. I can do crafty stuff, read, watch tv. I am very very tired all day, but I can stay quite calm.
Sometimes though I turn into a bitch and I have no-one else to share this with but Moonglum. He gets the rough end sometimes. We share one room, so we have no space. He tries to sleep during the night as he works. I get only 2 hours sleep during the night, if only we had one other room.
I do not dwell on the fact that I cannot get out to a shop, I cannot get out during the day to speak to anyone. I get one small walk daily, its all I can do. I don't dwell on my plans, the places I would like to visit, holidays I cannot take. We can't even afford a taxi to take us to the local shopping centre once a week, so I stay home.
I dwell on having a roof, being warm, deriving pleasure from reading and writing and my crafty stuff, still singing when I can face it and try to feel grateful for that. I no longer feel that pain can be rewarding, after more than 2 years, I am so over that idea.
I never thought my life would end up like this, and I have no idea if this is it or whether it will get worse.
But I like to remind myself that I am lucky, sometimes though it is a bit hard to convince myself.
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Latest reply: Jan 21, 2007
realisation
Posted Jan 12, 2007
This article reminded me of my relationship to h2g2
http://www.timesonline.co.uk/newspaper/0,,176-2528339,00.html
These are the lines which made me understand
'Like many suicidal people, Hines had a plan: if someone noticed his despair, he would stop. “I’m crying softly to myself, waiting, you know, for that… for that angel to come down and tap me on the shoulder and say, ‘Hey, are you okay?’ And that in itself is just a grandiose kind of the psychotic nature of suicidal thought. That’s not how the world works. People don’t have telepathy.”'
I used to come here to be noticed when things were bad, just to be noticed helped more than most of you will ever believe. Some of you were always there, some of you had lives too complicated to be able to be there and thats cool. Some said I have everything all because I had a aprtner and therefore no reason to be down, some tried to cure me by making me accept their thinking. There were lots of reactions.
I'm in remission now, the last 7 years have been very difficult. Its a strange feeling for that to finally lift, maybe its clarity caused by pain?! Its Heaven after 7 years of severe depression, which started in 1999, for it to lift. It may come back, it probably will, but I believe I have the coping skills now to not let it settle so hard and so long.
We shall see.
I alienated many of you, some of you alienated yourselves. Many didn't believe me and thought I was lying for attention. I so, so was not lying.
But I really don't mind.
I have a lot to do now, in real life, out here. Gonna be difficult not being able to walk for more than 100 or so yards, but I shall keep on trying.
Good luck to me and all of you.
Discuss this Journal entry [13]
Latest reply: Jan 12, 2007
Help
Posted Dec 17, 2006
To quickly catch up, tomorrow is the 2 year anniversary of the latest episode in my bad health. Its been 2 years of trouble moving, walking, permanent pain etc etc. Sometimes it eases and I can get around by myself and buya nd carry things, more usually I cannot get around and carry stuff at same time. Moonglum has to help with a lot. He has a full-time job and also does whatever I need help with. If its a time when I cannot walk, then he does everything.
At present, I can walk a little, and if I take a few days break and do all the right stretches and exercises for those few days then maybe I can sometimes do a bigger walk such as goto Croydon, which is somethign I used to do everyday, now its a special occasion thing.
So today we went up there, to have a drink and goto M&S. I have to walk very slowly, take breaks and I always have a limp. A man walked into me and when I cried out in pain, he threatened to smack me, I felt very threatened and also very righteously angry.
On the way home, at the lights, I limped across slowly whilst the green man was on, whilst a biker revved his engine as loudly as it could go. As Moonglum is a biker, I know how you do need to rev a little, whilst idling, but never ever that much.
Still feeling angry at being told I deserved a smacking for utterly a sound of pain when someone walked into my painful leg, I made a '****-head' gesture. Stupid I know, but I had had enough. So the biker, folowed us down the side road and asaulted my husband. I was terrified that I had caused this and whether he had a weapon, luckily he didn't.
The police were called and took us home and said that we probably wouldn't hear from them again.
Now I am agorophobic already. I am panicking right now, I am manic. Sadly, I cannot talk to or look at my husband without anger coming up.
I don't know why this is happening.
I am expecting my back to seize completely at any minute, I am thinking of self-harming. But why has this driven myself and him apart? I cannot bear him touching me and wish he would just go away.
I know one thing, its not worth going outdoors if you have mobility problems, its better just to stay inside and stop living, stop fighting for a quality of life, cause I don't think its available.
Is this some shock thing? He needs sympathy right now and I can't give it too him, I feel such a b****. I don't know why this happening.
Discuss this Journal entry [41]
Latest reply: Dec 17, 2006
If anyone remembers Moonglum
Posted Nov 13, 2006
My husband that is, his mums cancer is back. Untreatable this time. I'll pass on any best wishes, if anyone wants.
Discuss this Journal entry [6]
Latest reply: Nov 13, 2006
Kaz
Researcher U182246
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