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Tuesday, 24 December 2013

Topical Steroid Withdrawal Month 7

So Sunday 22nd December marked my 7 months of topical steroid withdrawal.

My skin is still pretty much like it was last time I took photos and it may actually be a little worse in some areas compared to then, however my skin is still pale. There is no profound all over redness which is how it used to be on a near-constant basis. I am just covered in scabs and the only redness is from the skin directly surrounding those so I can't really complain.

My face is a little pink but that's just from rubbing at it. It isn't very noticeable and I no longer get questioned about looking too hot or sun burnt so that's a plus.

As I said previously life is pretty swell. I was trying to remember in the car on the way back from a little social gathering with Shane's brother and girlfriend, the last time I actually had a whole day off to be housebound. These days were essential to me about a month ago as I felt I constantly needed days to recuperate to allow my skin to recover for leaving the house, but these past few weeks I've been so busy and not felt I needed time off. It's bloody good.

This past week alone I've worked 30+ hrs  and even gone out after work for social events. Before that just wouldn't have been possible, it would have to be one or the other or neither as I would have had to take a shower and take time out to recover. It seems I no longer need to.

Don't get me wrong - I still get itchy as hell and have to go to bed earlier than anticipated some nights to avoid mauling myself to death, but I'm happy and no longer feel so disadvantaged.

I think the fact I did work so many hours this week proves that I can hold down a full time job. I'm so excited for next year and just starting afresh. After having lived like a hermit bound to this stupid condition for the past 5 years it's definitely needed!

I have a hospital check up on Jan 2nd with my derm. I haven't seen her since August but I can only imagine she'll take one look at me and gloat that my arms and legs aren't healed due to not using steroids. She can sod off quite frankly.

Hope everyone manages to have a good Christmas, you all deserve to!

xx

Thursday, 12 December 2013

December Skin: Day 205 TSW

How is everyone?

I'm not gonna lie, life is fairly decent right now. I'm working 5 days a week with ever increasing hours as the Christmas period gets into full swing. I feel busy and quite satisfied that I'm able to do more for myself and others. I am however still getting random flaring and lots of dryness. I took some quick photos this morning but they're not very good at pointing out the red bumps on my face so you'll just have to take my word for it that I have an itchy, red, bumpy face. Oh and there's a coldsore on my lip. Bloody thing!! That just randomly decided to pop up during my shift at work on Monday and is still lingering despite me taking Aciclovir daily. At least it is only isolated to my lip which is a very good thing, as we're all more than aware of my history of eczema herpeticum!

Face.

Leg.

Excuse the mop and bucket in this photograph. I just wanted to show you quickly that my legs are still going, and I'm still picking. Stupid girl! Both legs are the same.

Arm.

Now this is the biggest surprise. The photo is a bad depiction but my arms look just like my legs right now. They're absolutely covered in scabs that just won't go away!! I've tried not moisturising them but find I still scratch away at the dry skin, and moisturising them but I'm still scratching away... I just can't win. They and my face are the biggest sources of annoyance right now, especially when I catch customers staring at them as though I have the plague. I need me a new job! 

Overall I'm not bothered what people think of the way I look. I've covered this point a lot throughout the time of my blog but I reached a plateau earlier this year, around the time that this blog came into fruition and I just couldn't care less about how my condition may appear to others. I learnt that this is me, I can't help the way I look, I have an illness and if you don't like my inability to wear make-up and the lack of embarrassment I have of myself then please go away. You're not helping, you're just being judgmental of something you know nothing about.

When you do find yourself bound to illness you learn to cherish the smaller things in life and that all of the superficial stuff is exactly that, it just isn't worth dwelling on. Rant over. Haha!

Friday, 6 December 2013

Eczema/ Chronic Illness & Friendships

I've touched upon this issue in the past and I've recently read more posts on the subject so I thought I'd talk about the topic in more detail as it has been playing on my mind for a few weeks now. This was tough to write but I felt it was necessary even as just some form of release for my own sake.


I of course don't have fleas but the sentiment still stands


Living with a chronic and debilitating illness can be very lonely indeed. Especially so when in one moment you're living life as intended; working hard, playing hard, having a laugh with friends and going on all manner of adventures, and in the next breath you've suddenly become so riddled with illness that you are restricted by what you can now do.

I've found out first hand the devastating impact that this can have on friendships.

I've never been a massive socialite but I did have good friends surrounding me that I could trust and have a laugh with.

At the point that I first became extremely ill, back in January 2009, pretty much out of no where I found my condition rapidly worsening despite my and the dermatologists best attempts to deter it. It was an extremely difficult year. I was in the final half of my hectic Art Foundation course, specialising in textiles and costume and had a part time evening (18hrs a week) job in a supermarket working the produce section.

I had a good group of girl friends of whom I would go out with from time to time, as well as other friends who had gone off to University but who I would go and visit. My illness became so debilitating that I could no longer get dressed and was forced to stay at home, unable to attend college to see my friends and only sometimes managing to get into work/ restricting my duties. It was like this for a few months and I found myself becoming more anxious, stressed and upset at the situation.

Fast forward a few months and although my skin was still a complete mess I managed to have more good days where I could see my friends. I relished these days and was so happy that although my confidence had been knocked I had people I could fall back on to boost me up.

In September I was finally well enough, despite still having extremely bad skin, to go off and attend University. Here I made some good friends and also met Shane. Life became manageable for the next few months, I had a routine that was working for my skin and even the new stresses of Uni and socialising weren't enough to stop me from having a good time. I finally felt as though I was perhaps "normal" again. Just with flaky, dry, eczematous skin.

January 2010 came round, a whole entire year since my bad eczema first properly began. I went to see the dermatologist at Lincoln hospital as I hadn't now seen the one near to my home town for around 4-5 months and needed some attention regarding my skin. I was given Ciclosporin and it really did help me. I still had some bad days but when my dosage was upped enough I became invincible. I could now do all sorts of unimaginable things such as going the gym, drinking with little itching, I even went home to see my Mum and the cats and my skin didn't flare one bit. My asthma did though. I was then taken off that magical drug as my blood pressure began to rise. It never worked in the same way again.

My skin started becoming really bad again. It was affecting my social life and even University. There were some subjects relevant to my course that I was unable to fully take part in because of my severe allergies, such as gilding because of the rabbit skin glue used and also the animal fur brushes to apply the gold leaf itself.

I found myself having to pick and choose events relevant to my own interests which made me become very selfish indeed. I would go on nights out, knowing that I would regret it as soon as I came home but I would only do it to my own expense. Looking back, you can't help but be selfish with a condition such as this as you know that if you do do something out of your comfort zone it will have severe implications later on for your skin, but now I feel so utterly horrible for ruining my own social life and pushing others who cared away from me.

I began to fall into a deep depression due my condition. Life was miserable. I started to become snappy at others for my short comings and in turn lost great friendships. I felt misunderstood because people didn't seem to understand the full nature of my condition and why I had become how I was. They didn't seem to realise I was in the midst of depression and it only made everything so much worse and I blamed myself. It didn't help that I decided to move out of my student house and in with Shane for personal reasons, such as being able to roam around naked without worrying about my housemates seeing me, they just saw it as me abandoning them and it just all spiraled out of control.

In my last year of University I started to attend counselling/ CBT sessions to boost my morale. They worked for me for the most part and I'm no longer in that ditch of depression but I do still struggle to maintain friendships but that's still really down to my condition. It's difficult to socialise with others when you're stuck inside the house all the time unable to get dresssed. Shane of course has been my rock in all of this. He has experienced all of my highs and lows and been there for me through thick and thin. I think because he has seen me as I am through the entirety of this he is more understanding than anyone else could ever be because he has literally witnessed it all: the state of my skin, my moods, my lowest points, my inability to maintain relationships and so on and so forth. He just gets that I am incapacitated and that I can't help it.

I think it takes someone with a great sense of commitment to fully understand the nature of an illness even if they themselves are of good health. I can understand why a lot of my 'friends' are no longer there for me, other than me turning into something of a bitch to some of them who I needed most... of which I'm incredibly sorry for, if I could turn back the clock believe me, I really would.

I also find that people are scared of the unknown. I found some of my other friends drift away from me and I can only assume it is because they are scared and they just don't know how to be there for me when times are rough.

Finding out about Topical Steroid Withdrawal has given me hope that I won't always be stuck with such a debilitating condition. I will be able to have my life back and in fact have already started to get some of it back, albeit slowly.

Next year when I'm better I want a fresh start.

This explains it better than I did