month 3 (June) update…… 3 months closer to healing!

Sorry it has been such a long time between updates but month 3 saw the start of some improvements.

Body hair – Ian said he could cope with the skin ( thank goodness), but he couldn’t cope with the body hair. Yes during tsw I stopped shaving everything because it was too sore. Poor Ian was engaged to Chewbacca. On a day I wasn’t as uncomfortable I decided to shave my legs. After I got through the layers and layers of hobbit hair I found……..Some normal skin! Yes, under the wookies’ winter leggings normal looking skin had appeared on my lower legs, They look a lot less grey/pink than they used too and are actually not dry , they actually felt kind of soft!! Who would have thought that underneath all the hair ( that was now probably clogging the drains instead) some improvements would happen !!  lots of leg touching  and showing off my calves to any one that would look ensued after ‘ the big shave’

smooooooth legs

The body temperature control issues seem to have settled this month and oozing almost gone. It has enabled me to do a lot more. I used to get one ‘better day a week’ now I get a lot more. I started being able to ride cheddock a few days a week, if I get a bit hot I still get itchy I try an cool down still on the horse as if I got off the itching fit would take over, pretty sure the yard probably has me on cctv scratching my back/ arse/ in the tack room. I’m soooo attractive. Sweating does make me crazy itchy but I think exercise is important to healing. ( yes, riding is a sport , no riders don’t just sit there lol ) With topical steroids you do not sweat like a normal person. The fact that my body is starting to sweat again must be a better sign. I feel better mentally after I have ridden too, TSW makes you feel stuck in some ways just waiting.. and waiting . With my horse I can work on improving things all the time so I feel as if I’m progressing at least in one part of my life. Horses don’t care  what you look like and thankfully people on the yard don’t either as they all know what is going on. A few of my fellow TSWers were talking about ‘rebounding’ which is a way of trying to encourage lymph fluid to move around the body (using a trampoline) Lymph doesn’t flow like blood, I hope as Ched is pretty bouncy he helps with getting my lymph fluid moving. I do feel a lot of the most itchy areas fit with areas of lymph nodes. With going off on the sick and being stuck in the house / bath for a few months I was not so ‘ goal orientated’ with my horse once I could get out again. I was just pleased to be around him what ever he did. He was often spooky pre TSW. Once my attitude had changed so did he, he became more reliable and was doing things with ease that I used to find difficult.

Feet and ankles are still my worst areas and shed like crazy. It is my hands holding me back from going to work again as they are not strong enough and full of cuts. Ian bought a PS4 and a few games to occupy me a bit in the hope I scratch less. I started playing ‘The Witcher’, a massive game that will take ages. It definitely helped with the boredom. Have to say though the creepy crones are definitely my hand twins.

my hand twin

knuckles

wrist

Adverts about skin products are pretty annoying too, the one with the ‘in shower’ moisturiser. Really?! It must be so hard to have to spend 1 minute after the shower moisturising your nice normal skin that people really need to do it ‘IN’ the shower?! Im going to have sooooo much time once I don’t spend most of the day worrying and taking care of my battered covering I call a ‘skin’. Hopefully I ll be dancing around out of the door in silky clothes one day ‘loving the skin I’m in’ until then adverts like this are going to annoy me.

Face moisturiser advert was by far the best ( sarcasm alert! ) ‘because impressing the woman in the mirror is the most important thing’ Pretty sure even non TSW people have other more important shit to worry about in life. The woman in my mirror ran away screaming like 3 months ago and put a bag on her head.

Venus razors advert ‘wow’ this one really struck a chord with me – ‘because beautiful, smooth skin goes with everything.’ FFs Venus guess I should just bin all my nice clothes for the next 2- 4 years then. Guess that means I should only wear a haz mat suit for casual days then, thanks Venus. Brrrrilllliant, guess nothing goes with my skin, awesome!

what Venus thinks I should wear, because minging skin doesn’t go with anything apparently

Went for a nice walk round Alnwick gardens and managed to embarrass my friends a bit, it turned really cold so ended up looking like a wierdo wearing the picnic blanket. Apparently picnic blankets, bandages and hair bands will not become a fashion staple, but hell, I’ll take comfort over style any time these days.

I watched the eventing in my first month of withdrawal under a duvet shivering and itching thinking it would be a long long time before I could spend a day out like that walking around. I was so happy I managed to go to Bramham horse trials with friends only 2 months later in my month 3 tsw. I was so pleased my skin let me have a day like that walking the cross country course all day, and so pleased the weather was good as if I got rained on that would have been crazy itch.

face still rashy at beginning on month

face at end of month, much better

I think moisturiser withdrawal is starting to pay off a bit. For the first time in years the middle of my back, and lower legs do not feel dry after a bath. Really hoping this continues and other parts of me catch up. I still use a bit of jojoba oil or almond oil on my face and hands for mobility. Moisturiser withdrawal is easier on body as you can put clothes on and forget about it. Not as easy on face and hands as they are on show and move a lot more.

It has been a bit more sunny in the north east so I decided to try get a bit of sun for an hour or so, skin seemed to cope well unlike the few months previous to tsw and the crap way my skin behaved with light therapy before I started TSW. In the later stages of TSW sun is meant to help with healing, I think when I was severely erythrodermic pre TSW that was definitely not the time to try.

Bras- throughout TSW I haven’t been wearing bras, I’m flat chested enough to get away with it. I cant imagine how  difficult TSW must be for well endowed women, i After some peer pressure from my horsey friends I decided to go and get some really attractive sports bras, as I was told if I don’t, I will end up with spaniels’ ears /fail the pencil test and have empty socks for tits when I’m older. Changing rooms during TSW are pretty scary. There is a mirror in there obviously, and the worry that you  will leave some skin behind when you take your clothes off…. But.. it was fine and I actually looked at my back for the first time and month and realised it looks pretty freaking normal !!

Positives for this month…. Definitely feeling better and more positive…. Lower legs feeling good…. Managed to do some serious hair removal and was ok…… back almost feeling normal…didn’t leave a pile of skin in a changing room….. riding horsey more too.