So here I am. At month 18 and flaring all over the place. The question if this is still TSW goes through my mind every day. It is very hard, I sleep like 4 hours a night. Most of the time after two hours of sleep the scratching begins and it takes hours. Hours of itch and pain! After that I can FINALLY sleep. I want to stay in bed a day and night, but I try to stay out of the bed from 12:00 pm till 0:00 am. If I stay longer in bed, I sleep until 18:00 pm and I feel like a total zombie. Waking up is horrible. My skin feels very wet and painful. I want to stay in bed!! But I know that it is not good to sat in bed for more than 12 hours. I hate the way the skin gets hot the moment you are going to sleep! My sleeping scedule:
- 00:00 am - going to bed
- 00:30 am - sleep for one or two hours
- 02:30 am - waking up with itch, it is itch time!
- 09:30 am - after itch, pain and scratching I can finally sleep
- 12:00 pm - waking up MISERABLE
Then I try to keep my eyes open for the next 12 hours. Yes, it is torture!
I actually think that this is my worst flare ever! Every little wound or spot huirts like hell and is very oozing. When it dries, it becomes very itchy. My legs hurt so bad, that I couldn't walk for 3 days without horrible pain. My neck has an open wound for almost 2,5 months. I actually think this is my longest flare ever. It all started to inflame on April 5th and the flare is still here! Being ill from TSW is a very nasty thing.
I really hope things will get better in the future. I have a doctor now who put me on a diet with a lot of vegetables. I diet my whole TSW time, but this is time it is almost only vegetables. No inflammatory food!
We have had a lot things planned, like concerts, going to the beach, but we had to cancel it all :( With TSW is like you don't have a life anymore, you are just surviving.
O my, and I almost forgot to tell about the smell of the skin! That is just terrible. It smells like iron or metal and it is really bad! Oozing spots with these smell? I hate it!! Sometimes I scratched my neck open and I smell this horrible smell again!
The point is that I never really understand where flares come from and how it comes that sometimes you have a break for 1,5 month and then suddenly it comes back very aggressive.
I SOOOOO BAD WANT MY LIFE BACK! And don't want to cancel everything! I want to live again!
- 00:00 am - going to bed
- 00:30 am - sleep for one or two hours
- 02:30 am - waking up with itch, it is itch time!
- 09:30 am - after itch, pain and scratching I can finally sleep
- 12:00 pm - waking up MISERABLE
Then I try to keep my eyes open for the next 12 hours. Yes, it is torture!
I actually think that this is my worst flare ever! Every little wound or spot huirts like hell and is very oozing. When it dries, it becomes very itchy. My legs hurt so bad, that I couldn't walk for 3 days without horrible pain. My neck has an open wound for almost 2,5 months. I actually think this is my longest flare ever. It all started to inflame on April 5th and the flare is still here! Being ill from TSW is a very nasty thing.
I really hope things will get better in the future. I have a doctor now who put me on a diet with a lot of vegetables. I diet my whole TSW time, but this is time it is almost only vegetables. No inflammatory food!
We have had a lot things planned, like concerts, going to the beach, but we had to cancel it all :( With TSW is like you don't have a life anymore, you are just surviving.
O my, and I almost forgot to tell about the smell of the skin! That is just terrible. It smells like iron or metal and it is really bad! Oozing spots with these smell? I hate it!! Sometimes I scratched my neck open and I smell this horrible smell again!
The point is that I never really understand where flares come from and how it comes that sometimes you have a break for 1,5 month and then suddenly it comes back very aggressive.
I SOOOOO BAD WANT MY LIFE BACK! And don't want to cancel everything! I want to live again!
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