Health Boards
Mon-03-10-2011, 10:42 AM
Hi, hoping some people on here might be able to offer some words of advice or support.
Yes, I want to rip my skin off. Or burn it. All of it. I've had this plague for nearly 4 years now, I'm a woman in my mid 30's. it's everywhere and it just keeps getting worse. I've had both forms of light therapy - TLO1 and PUVA which were unresponsive, use dovobet all the time, and xamiol all the time. As best patches fade but never all of it. I was offered the next set of tablet treatment but I won't take it as it can cause cancer (which runs in the family any way) and infertility. I'm so at the end of my tether now with it, it has sytematically ruined my life in 4 short years and now I can feel a real depression coming over me having been made redundant earlier this year and recently separated from my husband. I'm getting to a very real mental state of thinking 'What is the point of it all, I can't live a normal life with this thing, it's never going to go away. I won't ever be able to have a normal relationship where I'm comfortable'.
I don't enjoy anything. I'm miserable all the time because of this. Every single day I wake up thinking what's the point even about very basic normal stuff, you know, 'What shall I wear today?' Who cares? There's no point. Wear the same as every other day. All I can wear is long trousers and long sleeved tops or jumpers (that have to be white due to scalp plague). Anything in contact with my skin is painful or itches like mad unless I moisturise top to toe every 2 hours. This plague is in every fold of skin so no matter how many times I wash or moisturise the skin splits, turns to a delightful paste and smells of rotting flesh (I am a very clean person but it does this anyway). I am a picture of femininity. Not.
I have to force myself to leave the house which causes so much anxiety I often talk myself out of it.
People I see don't 'get' what it's like and I often get a cursory and polite 'your skin's looking better' I usually nod and reply with a 'mmmmmm', but inside my head is screaming at them 'no, obviously it's not better. It's just as bad as last time I saw you so shut the fu*k up'. Or worse, for example if I hear people talking about how they have nothing to wear, in my head I want to scream at them 'try living a life knowing you will NEVER. EVER., be able to wear a skirt, or cropped trousers, or a vest, or a t-shirt EVER again or ever go to a special event or get dressed up and then see how limited your wardrobe looks. Just be grateful you self-centred and insensitive git'. (ok, that's probably more one for the girls).
I can't go on a night out with friends or family as it just throws up the question, what can I wear. Jeans and a cardigan like every other single day
of my life. I hate the school run, the other Mums just stare.
Think that's one of the worst things about this plague, people think it's something worse or something contagious and they stare. They never ask. Maybe it would be better if they did. On public transport it's a nightmare, I daren't hold onto a hand rail on an over crowded bus, people physically lean away from me as if they're going to catch it. And, after a hot day in an office, with every skin fold pasty and l'eau'd'rot in full effect, it's no joy getting on an even hotter bus packed to the rafters where you're inches away from people on all sides. I waited over an hour once for a bus that wasn't full (busses arrive every 8 minutes or so).
I know this is a genetic thing passed down through the family but I can't forgive the person who gave it to me. If they knew this ran in the family they shouldn't of had children. If I had known about it and that it was hereditory and that I would get it, I would not have had my daughter (really). I didn't get this plague until after she was born. If I have passed this on to her I'll never forgive myself either.
People say, 'you've just got to not let it affect you'. How? Please tell me. How do I do that when it is a constantly in my face taunting, 'look at the life you could of had!'
Another thing I get a lot is 'you've just got to get out in the world and take each day at a time' Again, HOW????? And my personal favourite 'there are people in the world with worse things that this'. True. Very true, but that doesn't mean my experience of this is any less real or valid.
If there's a knack to just accepting it? Please tell me. I'm just not one of those people who can just put two fingers up to the world and say 'this is me, if you don't like it, that's your problem'. I would love to know how people on here have come to terms with it. How do people live normal lives with this disease when it affects so many things on a day to day basis.
Here's a list of things I can't do now, some of which are day to day things and others are 'that would be a nice thing to do once in a while but I can't because of the plague' kind of things....
1. I can't take my daughter swimming. (breaks my heard because she always asks me if I'll be able to take her when my skin is better to which I have to say 'yes' because she's desperate for me to go with her even though I know it'll never be better enough to do it.
2. I will NEVER be able to wear a t-shirt or a vest out in public again.
3. I will NEVER be able to wear a skirt/dress/cropped trousers in public again.
4. I can no longer wear my hair in a ponytail due to it being so bad on my scalp.
These things alone are enough to fu*k your life up, imagine never being able to wear a t-shirt again in hot weather. I literally have anxiety leaving the house now and have to make sure I'm covering it all up with my boots, jeans, long sleeved t-shirt or jumper or cardignan which is most delightful in 30 degree heat.
5. It fu*king hurts. No matter how clean or how moisturised I keep it it hurts. Every. Single. Day. Sitting for more that 5 minutes, standing, walking, sleeping.
6. I can't sit in the garden. It's over looked. I used to be a really outdoorsy person, not anymore.
7. Can't go on holiday. Anywhere that might need skin exposure due to heat ot activity. Unless perhaps a secluded holiday if such a thing exists. I know I wouldn't enjoy it. The mere thought fills me with dread. Might as well stay at home and be secluded here. (cheaper). Unfortunately that means my daugher won't ever have a holiday which hardly seems fair. More guilt.
8. Can't play team sports - can't wear shorts or t-shirt.
9. Can't go to the gym - same as above.
10. Can't think, hey it's my birthday, lets get the girls together and go for a spa day or out for a meal.
11. Can't join in on friends hen do's or birthday days out as they usually involve the above.
12. Can't have a love life.
13. Can't get a hair cut. - Probably manage 2 a year after weeks of mental preparation and hours of crying beforehand. Same with the dentist or optician or seeing the Doctor, anything that involves someone being close to my head.
14. Answering the front door. It has to be a very VERY good day for me to answer the front door. Usually just sit very still and hope they go away.
These things might sound like materialistic things but they're really not, they're normal everyday things which you take for granted until you can't do them anymore.
Maybe I should just suck it up and get on with it like people tell me to but I just can't seem to get past this.
Before this, I was a happy, out-going, confident person and fun to be around. Really.
Would burning the skin help? Would it come back? I'll consider anything. Honestly.
Sorry for being depressing. Someone help me, please. Any advice will be gratefully received.
JustJess
Yes, I want to rip my skin off. Or burn it. All of it. I've had this plague for nearly 4 years now, I'm a woman in my mid 30's. it's everywhere and it just keeps getting worse. I've had both forms of light therapy - TLO1 and PUVA which were unresponsive, use dovobet all the time, and xamiol all the time. As best patches fade but never all of it. I was offered the next set of tablet treatment but I won't take it as it can cause cancer (which runs in the family any way) and infertility. I'm so at the end of my tether now with it, it has sytematically ruined my life in 4 short years and now I can feel a real depression coming over me having been made redundant earlier this year and recently separated from my husband. I'm getting to a very real mental state of thinking 'What is the point of it all, I can't live a normal life with this thing, it's never going to go away. I won't ever be able to have a normal relationship where I'm comfortable'.
I don't enjoy anything. I'm miserable all the time because of this. Every single day I wake up thinking what's the point even about very basic normal stuff, you know, 'What shall I wear today?' Who cares? There's no point. Wear the same as every other day. All I can wear is long trousers and long sleeved tops or jumpers (that have to be white due to scalp plague). Anything in contact with my skin is painful or itches like mad unless I moisturise top to toe every 2 hours. This plague is in every fold of skin so no matter how many times I wash or moisturise the skin splits, turns to a delightful paste and smells of rotting flesh (I am a very clean person but it does this anyway). I am a picture of femininity. Not.
I have to force myself to leave the house which causes so much anxiety I often talk myself out of it.
People I see don't 'get' what it's like and I often get a cursory and polite 'your skin's looking better' I usually nod and reply with a 'mmmmmm', but inside my head is screaming at them 'no, obviously it's not better. It's just as bad as last time I saw you so shut the fu*k up'. Or worse, for example if I hear people talking about how they have nothing to wear, in my head I want to scream at them 'try living a life knowing you will NEVER. EVER., be able to wear a skirt, or cropped trousers, or a vest, or a t-shirt EVER again or ever go to a special event or get dressed up and then see how limited your wardrobe looks. Just be grateful you self-centred and insensitive git'. (ok, that's probably more one for the girls).
I can't go on a night out with friends or family as it just throws up the question, what can I wear. Jeans and a cardigan like every other single day
of my life. I hate the school run, the other Mums just stare.
Think that's one of the worst things about this plague, people think it's something worse or something contagious and they stare. They never ask. Maybe it would be better if they did. On public transport it's a nightmare, I daren't hold onto a hand rail on an over crowded bus, people physically lean away from me as if they're going to catch it. And, after a hot day in an office, with every skin fold pasty and l'eau'd'rot in full effect, it's no joy getting on an even hotter bus packed to the rafters where you're inches away from people on all sides. I waited over an hour once for a bus that wasn't full (busses arrive every 8 minutes or so).
I know this is a genetic thing passed down through the family but I can't forgive the person who gave it to me. If they knew this ran in the family they shouldn't of had children. If I had known about it and that it was hereditory and that I would get it, I would not have had my daughter (really). I didn't get this plague until after she was born. If I have passed this on to her I'll never forgive myself either.
People say, 'you've just got to not let it affect you'. How? Please tell me. How do I do that when it is a constantly in my face taunting, 'look at the life you could of had!'
Another thing I get a lot is 'you've just got to get out in the world and take each day at a time' Again, HOW????? And my personal favourite 'there are people in the world with worse things that this'. True. Very true, but that doesn't mean my experience of this is any less real or valid.
If there's a knack to just accepting it? Please tell me. I'm just not one of those people who can just put two fingers up to the world and say 'this is me, if you don't like it, that's your problem'. I would love to know how people on here have come to terms with it. How do people live normal lives with this disease when it affects so many things on a day to day basis.
Here's a list of things I can't do now, some of which are day to day things and others are 'that would be a nice thing to do once in a while but I can't because of the plague' kind of things....
1. I can't take my daughter swimming. (breaks my heard because she always asks me if I'll be able to take her when my skin is better to which I have to say 'yes' because she's desperate for me to go with her even though I know it'll never be better enough to do it.
2. I will NEVER be able to wear a t-shirt or a vest out in public again.
3. I will NEVER be able to wear a skirt/dress/cropped trousers in public again.
4. I can no longer wear my hair in a ponytail due to it being so bad on my scalp.
These things alone are enough to fu*k your life up, imagine never being able to wear a t-shirt again in hot weather. I literally have anxiety leaving the house now and have to make sure I'm covering it all up with my boots, jeans, long sleeved t-shirt or jumper or cardignan which is most delightful in 30 degree heat.
5. It fu*king hurts. No matter how clean or how moisturised I keep it it hurts. Every. Single. Day. Sitting for more that 5 minutes, standing, walking, sleeping.
6. I can't sit in the garden. It's over looked. I used to be a really outdoorsy person, not anymore.
7. Can't go on holiday. Anywhere that might need skin exposure due to heat ot activity. Unless perhaps a secluded holiday if such a thing exists. I know I wouldn't enjoy it. The mere thought fills me with dread. Might as well stay at home and be secluded here. (cheaper). Unfortunately that means my daugher won't ever have a holiday which hardly seems fair. More guilt.
8. Can't play team sports - can't wear shorts or t-shirt.
9. Can't go to the gym - same as above.
10. Can't think, hey it's my birthday, lets get the girls together and go for a spa day or out for a meal.
11. Can't join in on friends hen do's or birthday days out as they usually involve the above.
12. Can't have a love life.
13. Can't get a hair cut. - Probably manage 2 a year after weeks of mental preparation and hours of crying beforehand. Same with the dentist or optician or seeing the Doctor, anything that involves someone being close to my head.
14. Answering the front door. It has to be a very VERY good day for me to answer the front door. Usually just sit very still and hope they go away.
These things might sound like materialistic things but they're really not, they're normal everyday things which you take for granted until you can't do them anymore.
Maybe I should just suck it up and get on with it like people tell me to but I just can't seem to get past this.
Before this, I was a happy, out-going, confident person and fun to be around. Really.
Would burning the skin help? Would it come back? I'll consider anything. Honestly.
Sorry for being depressing. Someone help me, please. Any advice will be gratefully received.
JustJess
