The start of month 2 was quite difficult with the ooze. My face was particularly bad. Swelling had reduced, but my upper lip, chin and jaw line drove me bonkers. The crawling sensation would not let up on the jaw line until it was rubbed (took a lot of self-control to not use nails)
For a few days this was terrible at night. Night time is not something you look forward to in TSW it brings on anxiety as itching and oozing get worse. One night in my half asleep state I rubbed at my jaw and chin and cheeks, all of a sudden it was like someone had painted my face with what felt like wall paper paste, it caused a bit of a panic as in the dark I imagined my face had finally fallen off.
No, it was just ooze…… mmmm nice. It had dried into a layer of crust by morning after I peeled myself from the pillow. I tried viscopaste wraps on my face after some tips from my fellow red skinners (thanks ladies). They can be left for a day under bandages on other body parts but a maximum of 90 mins on the face. This did help to dry up the ooze. The temptation to rub or pick at the crusty bits is overwhelming but if you give in fresh ooze would appear. Ian got some scented plug-ins for upstairs to reduce the dreaded ooze smell, I must say it helped a bit.
Inspired by ‘orange is the new black’…. Sanitary towels have more than one use! I found the sanitary towel method really helped. I ended up wrapping a bandage around my head with a sanitary towel stuck to the inside of the bandage so that the towel would rest against my cheeks, chin and jaw. This soaked up any ooze and discouraged sleep-itching of that area a bit, mentally I felt better and slept better knowing it would be soaked up and I wouldn’t have to peel myself of the pillow.
The dreaded red sleeves reduced to pink from red but remained crazy itchy, feet and hands are still pretty bad at this point, I use viscopaste wraps or sudocream. I bought some cotton gloves to rock the mime look. I find I don’t itch as much with the gloves on as they are covered, I don’t feel as self-conscious out and about with gloves on although people probably wonder why you have gloves on in summer. It is better than when I went to the shops without sporting my marcel Marceau/ Micheal Jackson look, people try and pass you your change in a really awkward way to avoid touching hands. It makes me feel like someone with grey-scale in game of thrones, princess Shireen, I sympathise.
I got a bad cold at one point which meant the sodding asthma came back, I really hope it disappears again soon. A cold is a pain in the arse when your upper lip is always crusty with little cuts and oozing, as our noses are a hive for staph bacteria, it was probably this that led to me needing antibiotics after my derm did a swab and it came back as staph. I am trying out colloidal silver to try and prevent it happening again. Just don’t want to turn into this smurf guy so I only using it sparingly when oozing.
The course of antibiotics led to me missing 1 weeks methotrexate dose, I missed a second as I threw up a few hours after taking the dose. Who do you ring when you are fainting on the floor and throwing up in a pan ? yes, your mum, even when she lives in France. Apart from the pan-barf incident otherwise the methotrexate has been okay, just wish it would hurry up and do something.
Most of the time I manage to stay strong about the tsw thing, but some days it gets to me more than others. Apparently the sound of my crying is the worst thing for Ian as there is nothing he can do or anyone can do to help me. If I think how long this could potentially take (at least 3 + years possibly), living this half- life, it breaks me. Emotionally it is hard, you feel stuck and like you are missing out on so much.
I had a really bad morning where the itch just wouldn’t stop it drove me to tears, my friend came round even though I just wanted to crawl into a hole and scratch myself into oblivion, she took me out for a walk, the itch stopped, the redness reduced on my face so much! I feel so much better if I get out and about. TSW has also made me realise how many lovely cool friends I really have.
Positives this month …… red sleeves more pink than red