Tuesday, 24 September 2013

Month 4: Noticeable Improvement

So this Sunday just past I reached the 4 month mark of withdrawing from topical steroids. Things are going pretty grand. My skin has been pale for the past fortnight now which is always fantastic to look like a relatively normal human being. However I am still periodically becoming covered in pus filled bumps which I can only assume is the MRSA still rearing its ugly head. It appears to be on a daily basis but the spots seem to disappear just as quickly as they arrive. I've found to try to combat them, as I mentioned in my previous post, is to not moisturise. I think this stops the bacteria from spreading because the moisturiser typically makes the skin hotter and thus inhibits bacterial growth.

I did see my derm nurse this past Friday and I've been given a further 3 months course of the antibiotic which appears to be relatively safe in terms of the side effects etc. It's given to those who suffer from acne and is also used to treat malaria, sexually transmitted infections and is also used for those who travel to prevent them getting nasty infections like ticks and gut rot... some nice trivia there for you. I think MRSA is one of those ones that can take quite a while to overcome so I'll just sit it out.

I'm sorry for the poor quality of the images. I think my camera lens must be covered in grease, as is everything in my life. Anyone else with a skin condition who has to use moisturisers will understand the annoyance of this.

Full length image. Yay looking pretty pale.

I keep scratching my arms, especially my wrists and hands which is a bit of a nightmare but the skin here as you can see is very dry and dryness = itchiness. Can't win can I?

My legs are still really horrible, covered in scabbing which gets soooo itchy! You can see at the top where it's a bit bumpy too due to over-scratching. You can also see the "sleeve" on my feet. But it's not so much due to Red Skin Syndrome, but more so because of the discolouration that has been caused from scratching too much.  

It has spread onto the tops of my feet, just as it has on the tops of my hands. It's so frustrating because those were the two places where I never ever had dermatitis during this journey.

Tummy has a few dots that keep filling with pus now and then but otherwise is really pale and not bothersome.

As mentioned in my last post - I have eyebrows! I've never had proper thick eyebrows and these are rather like my Mum's where they're sparse yet thick in size.

& I thought I'd include my face for good measure. Looks relatively smooth and pale :)  and no Photoshop involved! and my hair is also thickening slightly. I haven't had really thick hair since around the age of 12 so I don't expect miracles but this is certainly better than it was at the beginning of the year.

Tomorrow I have my MRI scan to make sure everything is alright in that head of mine after the suspected mini stroke I had last month. I've never had an MRI scan before so I hope it's not too scary.

Happy healing everyone!

Thursday, 19 September 2013

An Update On My Topical Steroid Addiction

Some changes I've noticed recently:

  • My hair is growing back in. Since earlier this year when Methotrexate made me lose a lot of my hair and then deciding to withdraw from steroids  my hair has taken ages to grow back in properly. My eyebrows have also grown back in again, they're still relatively sparse but they're the thickest they've ever been, as in width-wise. Although I know that this will probably change again when I enter another flare.

  • Prior to TSW I would come out in horrible hives virtually every day, this doesn't seem to have happened in the months that I have been off steroids. How odd. I suppose that now that my body isn't craving the steroids as much as it was it has been able to level out and the acuteness of the flares don't really occur as often, if at all.

  • When I went to visit my Mum and the cats this weekend, I didn't even need to reach for my asthma inhaler! Now, whether this was a fluke or my allergies have diminished slightly, this is a huge achievement. When I would go to her house before, within the hour I was on my way to A&E with an acute asthma attack, needing a nebuliser and my skin would have blown up big style; blotchy, oozing and eyes swollen shut. I stopped using steroid inhalers before I went into withdrawal. I was always very naughty at taking my brown inhaler morning and night and would often lie to my nurse practitioner of my regularity in taking it. She moved me onto a stronger steroid inhaler earlier this year because of how often I would take my Salbutamol inhaler. I only ever used it once and that was in front of her. Now, I only use the Salbutamol one occassionally. Usually only on a night time before bed, but I think that is habit more than anything.

  • Since this whole full-body eczema malarky kicked off in January 2009 I found my only form of comfort was to slather myself in white soft paraffin. Having had MRSA recently and needing to allow the skin to dry out to stop the ooze, for the first time in that long while I have allowed my body to remain relatively dry. This is how I used to be prior to the eczema. I was able to have a shower and then not need to moisturise. I've been putting the thinnest layer of white soft paraffin on and even missing some areas on purpose that don't need it and eventually I'll stop using it altogether. They say dry and eczematous skin should be moisturised but I don't think this is necessarily true. I recently received an email from a blog reader telling me to come off the paraffin-based products altogether and I can see what he means. Applying any synthetic material to be absorbed by the body is a bad thing, especially when you think what else it is used for. It then makes you think after having withdrawn from steroid emollients, (initially used because the more grease the better right?) to speed up the process should you also withdraw from the paraffin based moisturisers? Food for thought anyway.

Hope everyone else is doing OK?

Monday, 16 September 2013

National Eczema Week: My Other Half & I

This week (14th-22nd September) is National Eczema Week! As you're already aware, my other half, Shane Nicholl is already underway raising funds to support the National Eczema Society in order to further research into this often debilitating condition. You can take a peek at his progress by clicking on the links at the top of my blog and if you're feeling kind, why not help him by donating a couple of quid, no matter how small, it all adds up to aid this fantastic cause.

I don't mean to brag in any way whatsoever but I feel truly blessed to have such an awesome man in my life, who understands the extent of my sufferings and despite all the disgusting habits and processes that coincide with having a skin condition, he still sticks by me and loves me for who I am. He has gone out of his way to selflessly raise both money and awareness to help not just me, but others who suffer horrifically from the umbrella heading of "eczema" of which so many skin conditions fall under.

At the time that we first met I had no idea that we would end up having a romantic relationship as I didn't think that anyone could possibly be interested in pursuing a relationship with me. Sure, I still had people that were vaguely interested in me, but if they had seen the extent of my sufferings and all the habits that tie in with it they'd run a mile, thinking I was disgusting and not quite understand why I did what I did.

When you have a condition such as this, you find ways to mask it and cover it up so that no one would know the extent of your sufferings; spending hours upon hours preening the skin to perfection, being told by professionals to use copious amounts of steroid cream to keep it at bay, and to literally remove the dead skin with a pair of tweezers and cover red, blotchy areas with tinted moisturiser in order to look "normal" and feel comfortable in your appearance. The cracks would show sometimes but for the majority of the time I was able to hide it well, (before it became exceptionally bad and make-up was no longer an option) and it wasn't until I created this blog that I was met with aberration from many friends who had no idea that eczema could be so cruel. They didn't realise that my skin would shed so profusely, nor the extent that I went through to hide it.

The year of 2009 was when the whole bravado kicked off and I was to have very little or no respite from the beast for the next 4 and a half years. Meeting Shane later that year was like a breath of fresh air. Despite him not really having a clue about eczema he didn't really question how abnormal my habits were, from the peeling of dead skin with the aid of tweezers, to the full body application of moisturisers at various intervals during the day that would take ages to sink in to allow me to dress, to the hours spent laying down in the shower for relaxation... he really didn't question any of it, he just accepted that this was my life and took it upon himself to work with it rather than against it.

As time went on and my skin got worse and worse, despite seeing a dermatologist on a frequent basis for help, Shane still stuck by me offering his love and support, cheering me up on the days where I felt utter despair and like life wasn't worth living. He made it worth living and gave me the strength to carry on going, to fight against my body and to see that I was worth more than I thought. In fact, it was his seed of an idea that got me into blogging and so earlier this year, this very blog was born so that I could help others like Shane has helped me.

As cheesy as it may sound everyone needs a rock like Shane in their life, whether they're battling with an illness or not it helps you knowing someone has your back and that you're not alone in this struggle that is life.

I love you Shane Nicholl.

(Shane & I, Sept 2010 for my 21st birthday in Paris. Was on Ciclosporin at that point, hence make-up, the ability to wear necklaces without causing reaction, wearing black, dyed hair and stretched ears!)

P.S. My humblest of apologies that this post is overflowing with cheese :p

Wednesday, 11 September 2013

Skinny Skin Skin

I've reached another plateau of decent skin. My legs are still pretty horrendous, covered in patchy bright red scabs, but oddly they feel smooth like the rest of my skin so I'm not sure if they're just going to scar instead. It'd be just my luck if they do!

A lifelong aim of mine has been to be able to wear shorts outside sans tights/leggings. Last year I managed to lose a load of weight which made my legs a much better shape and I knew I wouldn't be scared to show them off. This summer however obviously hindered my chances of following through with my little goal because my legs have been riddled with infection and nastiness. This doesn't seem to be letting up any time soon, but now summer is seemingly over here in the UK, there's always next year to try to aim for.

I find it funny that it's only bad on the insides of my legs. The outside is pretty much unscathed. I wonder why it has manifested itself in such a way? Hmm.

(Sorry for rubbish phone pictures!)

Tomorrow is my birthday! I will be 24 years old which sounds scary to me. A lot of people don't realise I am this age so it's a bit of a shock for them too. If you'd like to be nice and celebrate my birthday with me you can donate a little to Shane's 1000km Challenge: http://www.justgiving.com/shanes1000km it'd mean so much to both of us! Alternatively if you don't like the idea of putting your details on Justgiving you can text "RACE55 £2" to 70070.

Oh and I also took a sneaky photo of my hospital file the other day. To put this into perspective, I've only been visiting this hospital since around Jan 2010. It's huge!

Hope everyone is well!!

Thursday, 5 September 2013

TSW - Reek of Putrefaction

So I seem to have gotten pretty much over the constant oozing. It was so vile and smelt worse than any other time I've oozed in the past. Absolutely rank! I actually felt nauseous whenever I got a big whiff of it which was near constantly. Blergh! Not to everyone's tastes but this song by death metal band, Carcass, has a pretty apt title, hence why I decided to use it... Glad the ooze has seemingly diminished now anyway.

I'm still really bad though, and up until yesterday it was still spreading like crazy through pus filled bumps. I still have a lot of them but have also endured a bit of peeling too. I attribute this to trying to keep my skin as dry as possible. It hurt like hell not moisturising the creases of my arms, legs and neck but I read somewhere that to stop bacterial wetness from spreading you must dry out the area. With the area being my entire body this has been no mean feat and I've had to surrender to sitting/ laying down in one position on the couch. Today I have finally allowed my body moisture so we'll see how this pans out.

Shane took a couple of photos the other night but despite the phrase "a picture speaks a thousand words" I don't think it does at all because it hasn't been able to capture the full extent of my sufferings. You can however see the skin has literally puckered though.  It was SO dry and cracked!

In other news Talkhealth Partnership, who I also blog for about my condition, got into contact with me asking if I'd like to write my eczema story for them to feature in this month's newsletter. Of course I obliged! So you can read that here: My Eczema Story on Talkhealth. I also have some other great news in the pipeline but I'll keep tight lipped about that until it happens.

Happy healing everyone!

Sunday, 1 September 2013

Day 102 - The MRSA Rages On...

I think the MRSA has reared its ugly head again, or I've gone and got myself yet another infection.

I woke up fine yesterday morning, we did our raffle at 2:30 in the afternoon (well done to all the winners!), all was fine until 3pm when we went to leave for Shane's race and I just started feeling icky and itchy all over. An hour later I'm covered from head to toe in a pimply rash. Literally head to toe. Last night I took a recommended bleach bath hoping that would kill some of it off but it's even worse today.

I've been feeling feverish, and even a bath wouldn't warm me up until I filled it with scalding water. I've also been more asleep than awake today. Not good at all. Gonna pop along to my favourite place on earth tomorrow (hospital) to see what can be done. I think with MRSA you're supposed to continue taking the antibiotics until all sign of infection has gone, which despite looking good, it hadn't really... I was only given a 2 week course.

All I can smell is the acrid stench of ooze as though my body is rotting. I feel dreadful. :(

Sorry for not taking any close-up pictures of the pimples themselves but after my arm started literally dripping with ooze I ran up for a bath.

Holding the tissue as I was trying to dab some of the oozing areas
Ankle looks worrying again 
Weeping knee and sexy skin...
Gonna put the next ones under a cut: NSFW