4 Years TSW

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!):

I decided to take photos in a changing room because the lighting is always different.

Ignore the scab on my chin... it was a spot but dermatillomania and that...

I woke up like dis

Awkward flabby tummy pic

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!

Good luck!

11.5 Months Off Topical Steroids

Wow, sorry for my lengthy absence but I think I can be excused seeing as I'm now living in Leeds and only just got my internet back this morning!

The eczema herpeticum was short lived and only lasted for a week at most. The Aciclovir tends to do a decent job of kicking it in the bum and stopping it from progressing further. Since then though my skin has been suffering from a rash which has probably developed into an infection but I haven't signed up to a doctors yet so there's not a lot I can do about it other than try to manage it myself. I do think a lot of what I'm going through now is just from the stress of moving and starting a new job (first day tomorrow!).

I am having up and down days, most notably this weekend where I attended a family wedding and managed to last an entire 11 hours before I just had to succumb to the itch. My poor car is a bit of a mess now. Please hoover it Shane if you're reading xD but it was impressive nonetheless!

I missed informing you of my 11 months of steroid withdrawal which happened 3 weeks ago now but I will be coming up to a year soon and I'm not in the best shape, but I am still managing which is good enough for me.

Shane's phone seems to be rubbish when I want it to depict my redness but when I want to take a nice photo of the two of us I'm suddenly redder than ever!

NSFW so under a cut.

Hope everyone else is well?x

P.S. this is my 100th post!

Month 3: Mini Stroke

So tomorrow will mark 3 months/ 92 days of ceasing treatment of Topical Steroids. I'm not gonna lie, it's been extremely tough but in comparison to others also going through this, I don't think I've even scratched the surface (no pun intended!) with the withdrawal process. Sure, I've been through my own personal hell over these past few months but I'm not too sure as to whether I am going through the withdrawal as I should.

That won't make any sense whatsoever, but it does to me in that I seem to have undergone everything but true withdrawal. The week after I cut out the topical steroids and switched onto Ciclosporin, after one week of respite I was an absolute mess, riddled with eczema herpeticum and periorbital cellulitis; resulting in a weeks hospitalisation. After a week on the mend, my skin then seemingly split open of its own accord and then progressively spread throughout my entire body leaving me looking like that of a burns victim. The doctors were horrified and demanded I used some form of acute treatment to reduce the inflammation, otherwise I would likely die. I reluctantly transitioned myself back onto the Ciclosporin and after just a few days had what I thought was my eighth bout of eczema herpeticum. At this time I believed I was going through withdrawal with the added effects of immunosuppressive therapy but now after finding out I'd contracted MRSA I'm reluctant to believe it was true withdrawal at all; from leaving hospital weeks before.

My skin is still suffering and I think it's mainly down to the MRSA. The areas on my legs where the vesicles were previously present have now turned into huge areas of scabbing that keep shedding profusely and reforming as scabs or harder skin with periodical weeping, but not as widespread as once was. It's gonna be a long time before it has all gone; the infection may leave but the aftermath isn't pretty and will take time to heal. As for the rest of me, it's a mess but no where near as unmanageable as it was. I'm now able to go a full shift at work and the other night managed a trip to the supermarket afterwards.

And now I'll turn to another health issue I suffered only last night that I don't think is in any way related to my TSW. I've never had any problems with my health that weren't related to my skin or asthma troubles but last night was just a bit terrifying.

I suffered a Transient Ischemic Attack (TIA for short) which is essentially a mini stroke.

Yep, at just 23 years old I had a stroke. What the actual hell?!

It all started at approximately 10pm last night; we'd just got in from Shane doing a race at a place 45 minutes up the road, we'd stopped off for a Dominoes pizza as it was 9:30pm and we couldn't be bothered to cook anything at that time, and so returned home to scoff our faces (I must openly admit that a pizza is a treat for us and it isn't all that often we get takeaway because we generally can't afford to). After inhaling the pizza I needed to go have a shower. The second I got into the downstairs bathroom my vision started to go a bit funny and I couldn't focus on anything. I thought nothing too much of it though as I have had similar things happen in the past and proceeded to jump in the shower. Afterwards I got a couple of drinks to make sure it wasn't due to dehydration and covered myself in moisturiser, whilst still struggling with my vision.

I then sat down to my laptop as I knew it would be a long while before I'd be off to bed and I couldn't see the TV properly to warrant putting that on, so did my best to struggle to look at Tumblr and read some friends' statuses on Facebook. After a few moments I realised I couldn't make sense of simple sentences and just put it down to my vision giving me grief and making me unable to concentrate... but then I couldn't even type anything coherently that made comprehensible sense. I started trying to talk out loud to Shane but my words kept getting mixed up and I couldn't form a sentence. We both found it funny at first until I couldn't get my words out at all and then couldn't even get my brain to think in logic of how to even create a sentence in my head. I was reduced to stuttering and frustrated one word answers and pointing.

My first ever panic attack ensued and I was hyperventilating, crying, unable to breathe, nearly choking on my tongue and it was just horrible. It kind of felt like an asthma attack in that my chest was constricting but didn't have quite the same feel, which is hard for me to explain really if you've never experienced the different sensations of the two... After Shane could see me struggle to breathe he shoved an inhaler my way which I just chucked aside as I didn't need it, but it was too hard to communicate to tell him what was going on. I felt like a vegetable. Then suddenly I had a pins and needles sensation in my lower lip and down my arms. At this point my vision had returned but I was still hyperventilating and unable to talk.

Shane got onto the phone and dialed for an ambulance. When the paramedic turned up literally minutes later my breathing was controlled and he was able to carry out various tests. I still remained unable to speak, and even when bundled into the ambulance could barely utter a word. My thinking however was coming back so that I could think logically but all the words I wanted to say just stuck on my tongue. I then had a moment of sheer terror when the left side of my lip felt like it was falling, though when they looked at me there was nothing visibly wrong so I'm not sure what that was about.

When I finally got to hospital and in a side room my speech and comprehension returned! My bloods were then taken and I could read that the form the nurse had brought in with her stated something about a stroke. I honestly hadn't even considered that so that drove me into more panic. A stroke? Me? But I'm young!

They don't know what would have caused it as all my blood work and the testing came back fine. I don't have high blood pressure, I'm not overweight and I should really be at a low risk of these things occurring... but the point is it did occur. After 5 hours of waiting in the hospital I've been given an appointment to see a specialist to see what on earth could have caused this. The only thing I can think of is the pizza? Maybe it raised cholesterol momentarily? I dunno. I dunno how these things work.

But yeah, welcome to my life. My never ending bad luck life.