I got down then made myself get up again emotionally. I could not let this thing beat me!
I had been dealing with this now since June and it was now November. I was due to see the Dermatologist again in very early January.
I had to turn down party invitations , meals out, Christmas plays, theatre trips. I could not cope in anywhere that was hot or even warm. My skin looked and still felt awful. Christmas was a dismal affair, I felt tired out and drained and just fed up with the whole thing really.
This was all on top of 6 months of pain, blistering, sore red skin and missing out on the summer, being unable to drive for a long time, unable to visit anywhere or anyone as my skin had been scaling off and flaking everywhere. Even if it hadn't been sore etc i would have been so embarrassed to be out like that.
My doctor had done his best. In addition to the steroids the dermatologist had given me. I had a lovely emollient cream and ointment which really helped the skin to keep hydrated and as soft as possible. I lathered that on several times a day. I had a special bath cream to soak in which also was very soothing and kept the skin very clean.
He helped me for when i got pain with the painkillers I had and the antihistamines which meant i could get some relief from the itching- and gradually the skin started to look and feel a bit better.
I was now off the antibiotics and had been Ok and free from any skin infections for several months. However we were all frustrated that although there was some improvement it was painfully slow and I was not better ....
I hadn't realised the emotional toll a skin condition can have on a person. I was tired a lot,sleep was fitful as I had to be so careful of where my arms were and my neck was so sore too and it was hard to find a good sleep position. I would get too hot and I felt awful and certainly not pretty at all. Even though I bathed once or twice a day i felt dirty(cracking,thickened, oozing skin does that to you !) and had to rein my self in from staying in the bath all day!
I cheered myself up over those past 6 months with visits from friends- they know who they are and they accepted me the way I was and the way I looked and were lifesavers for me in the long days I could not tolerate going out much.
I did not look in the mirror!
I watched comedy on TV anything to make me laugh and forget about my skin!
I couldn't work so I kept my brain active by learning about websites and reading when I felt up to it.
I slept a lot too, partly the antihistamines and partly that i was so very tired.
I meditated which helped me a lot to stay grounded and to know that I would beat this thing one day.
I loved to watch the wildlife in our garden, the birds feeding, nesting , flying going about their day connected me somehow..
The kindness and compassion of the doctors the nurses, the chemist even helped me to feel a bit better in myself. I was always content that I knew I could book to see them if i got worried or needed more help.
I developed an attitude of gratitude. I gave thank you cards to the medical people who helped me. Its hard to be scared and grateful at the same time, so i knew when they were having to do tests on me If I could keep grateful it would be easier.
Last but not least my husband was with me every step of the way....he was and is my love, my rock.
Some people commented that they were surprised I was not depressed but my answer to that is what would be the point?
Depression would not help me at all. I needed to be positive and hopeful and to keep going to look for answers with the medics. I never looked too far ahead, I lived in the moment. If I grabbed some happiness and joy from a day then that was just great! I knew I would beat this!!