Hi everyone, I feel I owe you a post and an explanation as to my whereabouts!
Can I just start with saying thank you so, so much to anyone who has asked after me, anyone who has taken the time to email me, comment or message me on other social media. I am so grateful for you all <3 For those who have gotten in touch with me who wanted answers I’m so sorry I’ve been unable to supply them. Life at the moment is pretty hectic.
I’ve been wanting to post for a long time but never quite knew what I was going to say. My 4 years TSW anniversary was May 22nd, I was looking to post then but just didn’t have the time or the will. It was only really this morning when I woke up a lot earlier than anticipated that I happened to look at a message on Facebook and discovered a whole section of unfiltered messages that contained an overwhelming amount of unread messages, dating all the way back to 2012! I am so annoyed that I’ve only now just been alerted to them and I can only but apologise for not getting back to you. I will say as well though that I don’t add people I don’t know to my personal Facebook account – if you want to talk to me I’d prefer it you emailed me. Alternatively I guess I could make a Facebook group…
So anyway. How am I? How is my skin?
I’m doing really good at the moment. I’ve landed a full time job in the city, which means hourly commuting each way. I’m in the process of buying a house, and have been since November so you can only dare to imagine the stress that I’ve been under! That is actually another reason I didn’t want to post yet – I was hoping I could update from the new house but hey ho – life just doesn’t always follow a plan.
At current my skin is pretty good. Dry, but good. I’m still taking Ciclosporin for now but I hope I can come off eventually or even start on Dupilumab, we will see. It hasn’t been plain sailing though, when I first started at my new job I had a horrible flare which was really quite embarrassing after being good for a few months and having to meet new people. It keeps coming and going but it’s bearable and I also put it down to the stress that comes with the house buying! Not only has my skin been bad but I’ve also been experiencing other unexplained health issues as well which we’re currently trying to figure out. Stress is a funny old thing.
Another thing I wanted to mention is heat – it’s really hot in the UK at the moment and I’m OK. I can deal with it now. I no longer come out in a full body heat urticaria rash, I’m starting to feel more confident that that is a thing of the past and was fully related to topical steroids, but until I flare again I’m not going to say that for definite.
There are moments that have me stopping and thinking, things now that I’ve been taking for granted, that I couldn’t even dream to do when I was in the deep grasps of TSW and it’s just astounding to see how far I’ve come. I have a full time commuters job, I can tolerate heat, my skin no longer comes off in gigantic flakes that compare to sunburn peel, I don’t have to vacuum my bed, I can take a 5-10 minute shower and be ready within an hour. I can stay at other people’s houses without thinking of myself as a hindrance or worrying that my skin or routines will be an issue. I’m no longer housebound. Touch wood I’ve not had a skin infection or a herpeticum outbreak, in fact I can’t even remember when I last had one!
The only things that are still problematic for me is the aforementioned dry skin but even then it’s not really that much of an issue – it’d just be nice to have suppler skin but dry skin has always be an issue of mine since day one. I’m also not yet confident I could live with a cat but I think that could be due to lack of exposure, I only spend time with cats once every couple of months so it will be hard to build up a tolerance, but gone are the days of full body rashes and acute asthma attacks when I so much as dare to look in the direction of one. I also still suffer from dermatillomania but I feel now that my skin has cleared up there’s not as many imperfections for me to pick at, but of course the tweezers still come everywhere with me! I also don’t wear make up but I’m cool with it… that’s the other thing, when going through such a traumatic illness you just start accepting your appearance for what it is. In my early 20s before the onslaught of TSW madness I used to wear make up every single day and when I became so ill it was a travesty, but over time you just accept that it’s your face. It’ll do.
And now onto the eagerly awaited awkward photos (that’s the other thing, it’s been so long since I’ve taken photos of myself I just can’t haha!):
So as you can see, dry but currently rash free!
Hope everyone is well and I promise not to leave it so long next time.
Also I was emailed about this giveaway to share with you all which we can use to celebrate my 4 years of being steroid free!; Win some Dermasheets for your bed worth $ 270!