Health Boards
Sun-18-09-2011, 19:17 PM
Lostintranslation wrote
I've spent all afternoon trying to work out how to tell the story of the emotional effect my psoriasis has had on me, I've never managed to express out loud the self-loathing, shyness and mental agony it has caused me over the years and I'm realising I can't put it all down in writing either.
We've all had bad experiences with the way people look at you, try not to touch you and so on and so forth and know how totally worthless it can make you feel.
All I can say is I tried to rebel against it in my late teens, tried to cope by being a typical bad teenager, messing up at school, drinking too much, sleeping around (always in the dark, always with half my clothes still on, usually extremely drunk). Needless to say that didn't really work.
I went through my twenties hiding under as much clothing as possible and struggling along, I was lucky enough to meet my husband who amazingly managed to see the person underneath the scabs and the flakes and then my daughter was born. I must add it wasn't all that severe back then.
Then I hit 30 and things went down hill fast. I had the worst erythrodermic flare imaginable and my joints (which had been behaving for a while) decided to stop playing ball. I just wanted to die, I couldn't bear to live like that, I had it all planned out. The only thing stopping me was knowing how much it would mess my daughter's life up if I killed myself.
The dermatologists at the hospital had decided to put me straight onto Methotrexate and put me in touch with fellow sufferers (I hate that word) and it was starting to talk to them and realise I wasn't alone and there were others who understood exactly what I was feeling that pulled me through the darkest part. One person in particular took the time to spend an entire night talking me out of suicide, he probably saved my life that night and I'll never be able to thank him enough for it.
So I started talking and the meds started working, gradually I realised just how close it was for a while. That still scares the living daylights out of me, knowing it's lying there underneath the surface. It took me about a year to get my head round it and learn to accept the guilt about what I almost did.
That's the basic story, now enough of the gloom, how do I cope now?
Firstly I made a vow to myself to never let the depression get that bad again, if I ever think I can't manage I'll be fighting for help in whatever form, I'll try anything rather than go back to that dark place.
I talk talk talk, not necessarily about psoriasis but often with other sufferers (that word again) and I try to laugh whenever possible, I really do believe laughter is a great medicine.
Some time back I realised part of my problem was that I felt useless, so I joined the UN online volunteering programme, it helps me keep busy and the feelgood factor of being able to help others is always a boost.
Now I also lurk on here with my whip, ready to welcome some in and whip others for misbehaviour
I try to look after myself and relax, tried meditation but I couldn't sit still long enough but I work hard to stop the feelings of self-hatred when they pop up, it's not easy but I'm getting there.
I've had a big breakthrough over the last few months, I don't really know why but suddenly I've stopped hiding, ok the meds I'm on are improving my skin which helps but it's still visible yet I'm finally getting my arms and legs out, I've even braved a swimsuit already it's easier than I thought and it feels amazing. Yes, people stare. You know what? I just stare right back at them.
I've spent all afternoon trying to work out how to tell the story of the emotional effect my psoriasis has had on me, I've never managed to express out loud the self-loathing, shyness and mental agony it has caused me over the years and I'm realising I can't put it all down in writing either.
We've all had bad experiences with the way people look at you, try not to touch you and so on and so forth and know how totally worthless it can make you feel.
All I can say is I tried to rebel against it in my late teens, tried to cope by being a typical bad teenager, messing up at school, drinking too much, sleeping around (always in the dark, always with half my clothes still on, usually extremely drunk). Needless to say that didn't really work.
I went through my twenties hiding under as much clothing as possible and struggling along, I was lucky enough to meet my husband who amazingly managed to see the person underneath the scabs and the flakes and then my daughter was born. I must add it wasn't all that severe back then.
Then I hit 30 and things went down hill fast. I had the worst erythrodermic flare imaginable and my joints (which had been behaving for a while) decided to stop playing ball. I just wanted to die, I couldn't bear to live like that, I had it all planned out. The only thing stopping me was knowing how much it would mess my daughter's life up if I killed myself.
The dermatologists at the hospital had decided to put me straight onto Methotrexate and put me in touch with fellow sufferers (I hate that word) and it was starting to talk to them and realise I wasn't alone and there were others who understood exactly what I was feeling that pulled me through the darkest part. One person in particular took the time to spend an entire night talking me out of suicide, he probably saved my life that night and I'll never be able to thank him enough for it.
So I started talking and the meds started working, gradually I realised just how close it was for a while. That still scares the living daylights out of me, knowing it's lying there underneath the surface. It took me about a year to get my head round it and learn to accept the guilt about what I almost did.
That's the basic story, now enough of the gloom, how do I cope now?
Firstly I made a vow to myself to never let the depression get that bad again, if I ever think I can't manage I'll be fighting for help in whatever form, I'll try anything rather than go back to that dark place.
I talk talk talk, not necessarily about psoriasis but often with other sufferers (that word again) and I try to laugh whenever possible, I really do believe laughter is a great medicine.
Some time back I realised part of my problem was that I felt useless, so I joined the UN online volunteering programme, it helps me keep busy and the feelgood factor of being able to help others is always a boost.
Now I also lurk on here with my whip, ready to welcome some in and whip others for misbehaviour
I try to look after myself and relax, tried meditation but I couldn't sit still long enough but I work hard to stop the feelings of self-hatred when they pop up, it's not easy but I'm getting there.
I've had a big breakthrough over the last few months, I don't really know why but suddenly I've stopped hiding, ok the meds I'm on are improving my skin which helps but it's still visible yet I'm finally getting my arms and legs out, I've even braved a swimsuit already it's easier than I thought and it feels amazing. Yes, people stare. You know what? I just stare right back at them.