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!

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

Photo of Eczema Skin 5 Months Topical Steroid Withdrawal

I've had a few people ask how I'm doing lately so I figured I'd give a brief photo update.

Overall my skin is remaining white, it's just very dry and does go the palest shade of pink after rubbing on my face. I'm covered in tiny little wounds from scratching but they're so tiny and it's really just from the dryness that they've occurred. My skin is thick enough now that it doesn't cause weeping when I give it a good old scratch, just tiny nicks here and there that scab over and I naughtily pick them off.

 You can see the dryness is predominantly on my eye area and cheeks. My lips have been horribly dry too. You can also detect the skin flakes on my t-shirt. Yum! Oh and my eyebrows are becoming a little bit sparse again but I reckon that's because the skin isn't moisturised enough to hold in the hairs so when I have a scratch because they're so brittle they fall out easily.

Closer version

Closer side view

Mostly white tummy/hands except for some naughty scratching which has created the aforementioned small scabs. I haven't had matching hands for a while now so this is nice to see. My hands were also covered in hard skin last month which took ages to get rid of and although they're dry as a bone the skin feels relatively normal.

There still isn't much difference occurring in my legs. I just can't leave them alone :( I'm so bad. Telling the world about my picking habit obviously did nothing mentally for me. If it wasn't so cold right now I'd parade around in shorts so that everytime I caught myself in the mirror I'd feel ashamed.

But there you have it, a mini update from me! I think I attribute the dryness of my skin to the cold weather. It has been extremely windy and in fact we were down in Portsmouth this past weekend when the winds were a good 30mph. That obviously has done nothing to revive my poor skin.

Hope everyone is well :)

My Eczema Story In Pick Me Up Magazine

Hey guys,

Just thought I'd let you know that I'm in the most recent issue of this week's 'Pick Me Up' magazine which came out yesterday. It's only 68p so grab a copy!

After having written the newsletter for Talkhealth last month I was approached by Pick Me Up to include my story in their magazine. A proud moment! Hopefully my condition will strike a chord with many other eczema sufferers all over the UK and in turn they may look into Topical Steroid Withdrawal if it is the next path they need to take.


*for obvious copyright reasons I'm only showing a small thumbnail of the magazine to show that I have been featured.

Painting Over The Walls To Hide The Cracks

Shane used a brilliant phrase in his post last month entitled "What If Everything You Thought You Knew Was A Lie?" describing how Doctors tend to paint over the cracks rather than fixing the problem to get to the root of the cause.

From my own personal experiences I come up against this all too often. Earlier this year when I decided to stop using topical steroid creams and immunosuppressants, I was met with a tonne of aberration from my dermatologist. Even now, after switching derms I still have a stand-off battle when I tell her I'm still not using the steroids, it's almost with spite and malice that she retorts; "Oh of course you're not." as she then rolls her eyes to the back of her head. What she seems to be failing to understand is that I'm not steroid-phobic. I genuinely feel that the treatments I have been given over this 4 and a half year period have done me more harm than good. I'm now worse than I ever was and I can only think to put it down to the prescribed medications after finding nothing other than cats and dust mites that I am severely allergic to (which only happened after my period of stress - I was never that allergic).

When I told my former dermatologist of my findings regarding Red Skin Syndrome and Topical Steroid Addiction he seemed happy enough to want to find out more at my next appointment, but I now realise he only agreed to read them to keep me sweet. The next appointment came and he didn't even bother to look at Dr Rapaport's papers. He told me they bore no credibility. Yet even when I argued that he should take a look at my own blog and read up on the blogs of fellow sufferers who had come out the other side cured he told me that he didn't like all this "technology business" and didn't use computers.

Erm what? You're a doctor living in the 21st century. It's basically your right to use a computer to find out what's going on in the current world!

That is when I decided to switch to seeing another derm, who again seemed to be on my side in the beginning, but as you can see from my previous entries, she turned out to be just as sour. What is their problem? Sure I can understand that it must be somewhat frustrating to be told these creams that you've been telling your patient to apply liberally are in fact the cause of the problem, but to outright dismiss the idea when all other treatments have been exhausted? I think it would at least be worth a try, no?

I realise that this isn't all the fault of doctors however, as Shane stated in his post, there are some scary convictions relating to dermatologists particularly regarding why they chose the specialism; not because they have an interest in the subject but because of the healthy pay packet and more time off. That kind of heralds part of the reasoning as to why they seem to stick so vigilantly to their treatments of topical steroids and immunosuppressants. If you're not bothered about your patients with recurring eczema that only gets worse why not just chuck something stronger at it instead of addressing the cause of the problem. It makes me angry.

Sure, there are some derms out there who do care about their patients and not just from a medical perspective, they do genuinely care for their well-beings (look at Rapaport, Fukuya, and all other red skinners who have been provided with love and care)... however I don't think I've found one for myself yet.

I'm not disputing the jobs of the doctors as it must be really frustrating to see your patient failing to respond effectively to treatment, but at the end of the day us patients do rely on them to give us some form of hope. Afterall, they are the one that have done the years of medical research and have the experience of treating other patients with similar conditions.

On top of all this there's the whole idea of the pharmaceutical companies making their mega bucks by distributing their medications which are initially approved by the FDA, but later are found to cause deaths and other life-threatening illnesses that weren't listed on the insert. This is then decidedly covered up as they would lose a lot of money and it creates more media hype and stigma against them. To the average Joe, that's you and I, we have no right to know what we put in/ on our bodies. As long as the big guns are raking in money then the world can go round.

Sources:

• http://www.collective-evolution.com/2013/09/04/major-pharmaceutical-company-wants-to-block-access-to-clinical-trial-data-of-their-drugs-in-fear-of-profit-loss/#_
• http://www.bloomberg.com/news/2013-03-11/abbvie-sues-eu-regulator-to-block-clinical-trial-data-release.html
• http://www.pharmalive.com/transparency-abbvie-sues-ema-over-trial-data

It truly makes you wonder if anyone has your best interests at heart in wanting to get better or is life just one big scam? Ooooh deep!

Also as an aside: don't you find it ironic that the inserts for many of these prescribed medications state that side effects can consist of skin rashes, itching, hives, allergic reaction, dry skin, edema and so on and so forth? Just a tad ironic that they won't give credit to steroid induced eczema yet the symptoms are often listed as side effects. How would you know if it was a side effect if you're already using these treatments to cure the said symptoms listed...?

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

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!!

Day 97 of Topical Steroid Withdrawal

Didn't mean to let a week go past before updating my blog! I was going to wait until Day 100 of my steroid withdrawal which will be this Friday but I thought that might be a bit too long without a post.

I'm doing pretty well. There haven't been any ill effects from what happened last week and I've been going to work, fulfilling my contracted shifts and then some (an extra half an hour here and there) so I'm hoping and praying that my string of bad luck is letting up and I'm able to have some respite. My skin is still frankly a complete mess, I'm covered in scratches, my legs are scabbed and still suffering from the MRSA but they're a lot better than they were and I've paled quite a lot. My skin is really dry and has loads of shedding to do but that's all part and parcel of the healing process.


  My ankle keeps scabbing and I keep picking...   This only started over the past couple of nights. I've been scratching my thighs and scabbing is the result. Must file my nails again.   I have a lot of deep gouges like this. Hello saggy armpit - lol what the hell?!   My right arm is a bit of a mess. I look like I've been mauled by a cat! More of my right arm/hand. It is feeling easier to tolerate though so fingers crossed! I've had a good few days of relaxing with friends and forgetting about my problems which has been so beneficial to my state of mind. Good times are definitely what I've been needing! Don't forget Shane's raffle is drawn this weekend, which will be my Day 101 of withdrawal so if you're fairly local why not celebrate with me by purchasing a raffle ticket? Otherwise why not donate £1 or 2. It's for a good cause afterall and will cheer both of us up after our hellish few weeks. Help Shane reach half his pledged total - he's so close now!

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.

Buy Tickets, Win Prizes (Shane's Charity Raffle)

It's taken me a grand old age to draw a winner for the Silentnight giveaway but I am pleased to announce that the winner is - Victoria Androsova! Well done miss, I have now passed on your details!

In other news: Shane Nicholl is holding a raffle that will be drawing at the end of this month! Prizes include: a family ticket for Jorvik Viking Centre in York, Valerie Patisserie Treatbox, Gift box from Lush, £20 voucher for Asda, a pair of tickets for any show at the Glee Club in Nottingham, a meal for 2 at Vodka Revolution, Family passes for Burghley House & Doddington Hall, Gym passes... etc. 

For a full list of prizes go to: http://runshanerun.co.uk/raffle

Tickets will be £1 each and can be bought either in person from me or Shane or you can donate to his Justgiving page: http://www.justgiving.com/shanes1000km providing your name and ticket amount so that we can contact you and put a ticket(s) aside for you.

The draw will take place on Sat 31st August. The winners will be contacted via Facebook or email/phone. A full list of winners will be shown on Shane's webpage.

Thanks guys, and good luck :D xx

P.S. We would be grateful if you could spread the word!

P.P.S. The majority of the prizes are based in the Lincolnshire area.

Eczema Herpeticum No.8

Yup. As the title suggests in only 15 months I've contracted eczema herpeticum 8 times.

8 times!!!

I think it's time to do some digging around into natural ways of boosting my immune system seeing as though I am essentially crippled and broken. I don't want this to open an invitation to be plagued with people telling me to use this, that and the other high cost remedy... but I do openly admit that I need some help.

Once again I've rang in sick at work and toddled off to hospital to get seen by my derm. She's given me 800mg of Aciclovir to be taken 5 times a day in the hopes we can kick this in the face (my words, not hers). The thing that terrifies me is that I've already been taking Aciclovir, albeit at a much lower dose, but nevertheless it is already in my system. Just how much longer until I become completely immune? It's frightening to think about.

She's told me to avoid sun light at all costs, which I have been trying to do. I've only been outside in the sun driving around in my car or the train journey I endured last weekend and other than that have been trying to cover myself up walking quickly to places when I've got out of my car so I'm only in direct sunlight for a matter of minutes... I might have to don a burqa at this rate!

This seriously puts my festival next week into question... can I even go?! Yet on the other hand, yes I'll end up suffering by going with this but I'll end up suffering through going anyway so why miss out on an opportunity to do something that makes me happy? I sure as hell need it after the hell I've been through. 

Life lesson: don't allow yourself to get ill kids!

Hello, worlds most flattering photograph!


...& it's all over my body. Brilliant.

Too Much Too Soon?

This weekend my dear old Mum came to visit to keep me company. Was so lovely to see her, I just wish I could have been in better health. She accompanied me on Friday for my hospital visit which went well as my skin looked brilliant and they were happy with my improvement. They'd like me to undergo some more patch testing in a few weeks time as apparently I was only given a standard test before. I didn't have the heart to tell them that during TSW patch testing isn't always conclusive but hey ho.

I definitely overdid it though... considering over the past week I've not left the house and only days ago was pretty much unable to get out of the bath. Not to mention the lack of sleep and the like. We went to the hospital, followed by a food shop and my skin definitely hated me for it. I had to run straight into the shower when we got back home to give back a bit of lost moisture. We went out again later for some food and I think the abundance of sun exposure was my downfall. That evening my face got very itchy and oozed profusely in the night. I did however get a decent sleep though believe it or not! First full night in about 3 or 4 weeks!

The next morning my face was blotchy but not as bad as it had been. I stupidly decided we should go to Meadowhall for a shopping trip as I figured being indoors it would be alright. I forgot to bare in mind that it takes 1 and a half hours each way and being a Saturday it would be busy. Whoops. We left the house at 8:50am and got back in at around 6:40pm. A mega day out and definitely over-ambitious. I kept falling asleep on the train and struggled to stay awake during the film we decided to watch when we got back.

I did however have a brilliant night's sleep that night and in fact spent most of yesterday falling asleep too, sleeping for hours at a time. I guess my body definitely needed it!

Tonight I'm back at work and next week is the mighty Bloodstock Open Air festival. Let's just hope that sleep is a healer and I can build up my tolerance for going out.

& Don't forget to enter my giveaway Silentnight hypoallergenic duvet and pillow set

Another short update (including video from Jenny)

Hi Everyone,

I've got back from the hospital late again last night and am pleased to say that I saw another big improvement in Jenny's health.

She saw the dermatologist earlier in the day and was told that she is likely to be staying in until Friday, but will be visited each day by the dermatologist nurse or doctor for review.

There still remains the possibility that she will be held in over the weekend, in which case it will obviously be for the best, but hopefully I will be able to bring her home with me sooner rather than later.

Jenny is naturally becoming slightly frustrated at the prolonged stay, but appreciates it is for the best. Each nurse assuming that it is an allergic reaction isn't helping matters, but hopefully this event will help raise awareness of Eczema herpeticum across not just the nurses on that ward but others as well.

She has asked me to share a video which she recorded yesterday about her stay so far in hospital. Jenny also told me to mention that around 8 minutes in to the video when she mentions Eumovate she instead means Epiderm.

For those interested, I am posting daily updates on her recovery over at my Facebook page: https://www.facebook.com/runshanerun.

Thanks again for all your words of support and concern.

Shane

A quick update from Shane

Hi Guys, Shane here (Jenny's Boyfriend). 

I just thought I would provide you with a quick update on Jenny's condition on her behalf.

This morning Jenny woke to find that her face had swollen to almost twice the size it was last night and that the herpeticum was continuing to spread rapidly.

 

We went back to A&E as soon as we could where she was later admitted to hospital where she is staying indefinitely until it all clears up. She is currently receiving antibiotics and aciclovir via a drip. As it is there weekend and there are no dermatologists in we have to wait until tomorrow for some answers on why it was so severe this time round and when she is likely to be discharged.

I made a write up on this weekend's events on my running blog which you can read for more info here: http://shanes1000km.blogspot.co.uk/2013/06/48002-49619km-when-fear-is-your-only.html. 

Feel free to skip past the stuff about the race at the beginning.

Jenny will no doubt provide you with her story once she has been discharged, but for those of you who may have been wondering how she was, I'm sure there are many, I thought I would provide you with a quick update.

Thanks for caring,

Shane

Ciclosporin During Topical Steroid Withdrawal

I am truly overwhelmed with just how well received my blog is. Everyone I've spoken to or has commented has thanked me for making it... but thank you for reading it! Just overnight alone I've had 200 views! My blog views are growing by thousands week by week and it's just incredibly mind-blowing to see that people from all over the world are gaining some form of solace from my little piece of the internet. I feel like a proud parent :)

You're probably wondering how I've been faring this week? Well since starting the Ciclosporin for the 3rd time last Saturday I can confirm that it is indeed working! Hurrah!!! I still have some rashy and scabby areas but they are no where near as prominent as they were this time last week. I also had a really bad dehydration headache yesterday evening so that has probably contributed to the rash I have today that wasn't there yesterday but I have faith that it will disappear again just as quickly as it came.

It's also nice having that feeling where you can just physically feel your skin is improving. It's hard to put into words but you just know that it's getting better. Yay for Ciclosporin! Without it I doubt I'd be able to face the hard journey of withdrawal on my own.

I took a picture of my arm yesterday whilst waiting to start work to show a comparison of my arm from the week before. It's startling really, but shows with perseverance and the correct level of medication it can get better without steroid usage.

Last week

   

This Week

Hope everyone is having a good week xx

Friday May 31st

*Be warned that there are some potentially NSFW images in this post.*

So on Friday I went to hospital and ended up being there for 3 bloody hours!!! My appointment was at 10:40 but I wasn't seen until an hour and a half later. I then had to get my blood pressure done, go for bloods, a new prescription of Ciclosporin and produce a urine sample which my bladder didn't want to cooperate with. Because I was there for so long I was unable to have a shower before work, leaving me in a right old state. So as you can see by the images below, it was not pretty.

I suppose I should tell you what happened when I saw my derm. Well he told me he read a bit of the article I gave him on Red Skin Syndrome but didn't find it particularly credible - thanks bud! Luckily my derm nurse seems to find it intriguing enough to look into though, so I shall share these articles and blogs etc. with her. 

I've decided to give Ciclosporin a 3rd chance whilst I withdraw because there is no way I will be able to continue to go to work whilst flaring seeing as I'm finding it difficult enough at present with the state I'm in. I'm completely zapped of energy which isn't helped by the fact that I've had to go to work for 6 days in a row and won't get a break on my days off as they are filled with things that need to be done. Ugh. I need to relax. It takes so much effort to preen myself for a short shift at work and by the time I'm home I'm scratching myself to pieces. Really not nice.

Without further ado - here are the promised pictures. Don't be too freaked out by my near-nakedness.

(L-R) Body; Chest, tummy, arms; Tummy/ above underwear line

(L-R) Tummy; Back of knee; Breast; Arm

A truly grimacing sight. 

My belly is so ridiculously awful. It actually looks like an old woman's tummy due to the loss of elasticity. My poor skin.

I'm also pretty wound up today because some complete moron randomly reversed into my car whilst we were waiting at traffic lights. Luckily there's only minor damage but I'm still hacked off. I didn't have a straight thinking head, and even less so because I was dying for a shower so I didn't get his contact details for if anything does occur later on. I swear people just like to vandalise my car for the hell of it. Must have a retard magnet on it somewhere...

RUNNING FOR A CURE - Charity

So this Sunday my other half will be running the London Marathon which makes up a tiny 4-5% of his overall 1000km Challenge. He is running to help raise money and awareness for the National Eczema Society in order to pave a way into finding the inevitable cure for this horrible, and often debilitating condition.

1000km is one hell of a challenge! Many people run one 10k or one marathon NOT 1000KM!!! That's the equivalent of 621.37 miles which is around the equivalent of going from Plymouth (South of England) to Inverness (Scottish Highlands)! That is one hell of a way really isn't it?! Not to mention it would take 209 hours which is basically over 8 days of running non-stop. MIND BLOWING?!

Every weekend, come rain or shine, and even snow, he is lacing up his trainers and running anything from a 10k (worth 1%) or a half marathon or full marathon. He is now over 1/4 of the way there with 285.94km under his belt. However despite his best efforts has only raised a measley 22% of his £6000 target. Imagine how much research can be carried out with £6000?

In order to sponsor Shane you can donate as much or little as you feel appropriate to http://www.justgiving.com/shanes1000km or alternatively you can text "RACE55 £x" (£1-£10) to 70070.

Please help to spread his mighty, epic challenge. Thank you :)

Much love to any of you who do sponsor, it really is a worthy cause!

Don't Let Them Bring You Down

I must say that I have reached a stage in my life where I have managed to come to some kind of terms with the fact that I suffer from severe eczema. I've stopped giving a damn about how I look without make-up if I need to leave the house and I know I will never be able to wear or even do some of the things that I used to. This does not however mean that I have become completely immune to some of the comments and looks that people give when I'm having a bad flare.

Working within retail can be really difficult sometimes. You are faced each day with a plethora of customers, some kind, some not so kind. I get quite a few inquisitive remarks asking if it is eczema that I have, alongside some downright filthy looks when they see my hands and arms as I'm packing away their precious new items of clothing.

When this happens, you just have to think that we as people are ignorant and will judge by appearance. Everyone does it. Hell, even me. It's just within our nature as human beings to see something outside of the norm and to not completely understand it. However, it's what you do with your initial judgement that really counts. Some people will look away, some will be rude and stare and even comment, some will look at you sympathetically and others will ask you why you're different.

I don't mind explaining my condition to others, as you can see from the fact I've made a blog to promote awareness, I am more than happy to talk about it. I'm not embarrassed at the fact that I can't control my body, I just become agitated more than anything as I know that when I do flare I will get comments and questions that I know I will no doubt have to answer. A lot of other people I speak to are embarrassed about their eczema but they shouldn't be. You can't help that you're having a flare, it just happens. Sure, it's annoying as hell having to walk around with a blotchy red face but don't be embarrassed, you are you, you're much more than just the way you look.

Happiness is one of the key ingredients to living a less stressful life, and can even help to regulate your condition, and so it is paramount to not let people belittle you just because you have an illness that is difficult to control. If you are bullied because of your eczema then these people just aren't worth an ounce of your time. These people promote toxicity and need to be severed from your life else they will no doubt allow you to feel terrible about yourself. You don't need that. At the end of the day looks are just looks and don't really matter in the grand scheme of things if you are just able to alter your perception of life; beauty is in the eye of the beholder after all.

Basically, don't let people get you down about the fact that you're living with eczema. You're already going through enough of a battle with your condition to let these added extras bring you down. You are more than your condition. You are you and you can succeed.

I really hope this helps, not just eczema sufferers, but anyone who is facing a hard time with their appearance. :)

Learning To Focus On Positives : Life With Eczema

Sorry for the absence on my front. I know I owe a month in pictures and I will get round to it, really I will, it's just that it seems like a monumental task right now so I've been putting it off.

I've been thinking more and more about jobs. I'm an ambitious individual with the want to succeed but obviously my stupid condition dominates my life and so my dreams of a career in all things crafty are dwindling into the abyss.

I've decided to take a more rational approach with what I can do with my life whilst acknowledging my limitations but nodding towards more realistic possibilities. So, I'm not too shabby with my computing skills; most recently I've started up a little shop so am learning the very basics of business; I'm here in the blogging world and am getting to grips with getting my little spaces on the internet noticed.

I think I can have a life, albeit with limitations, where I can return to some form of normalcy. Hell I need it. As I said before, I'm an ambitious individual, I have ideas and I want to make a difference. Why on earth should I allow my condition to rule over me? I've worked so hard to have what I have now, why should I stop? I deserve to be happy! Happiness is paramount to leading a healthy lifestyle - surely it couldn't hurt to explore my other career options, even if they aren't exactly what I had planned to do.

A new era, a new approach to life, a new Jenny.

The Ability To Get Dressed & Eczema

Does anyone else's eczema prevent them from getting dressed?

My skin is so, so sore and weepy that putting clothing on will just exacerbate the situation and make it worse. I need to make sure my moisturiser has sunk into my ever-thirsty skin before I can even contemplate the idea of clothing because the sticky heat that it brings just sets off my heat urticaria, not to mention ruins my clothes! But even when it has been absorbed I still have to put up with the weeping skin sticking to my clothing and thus taking in fibres/ dust whatever the hell foreign body that shouldn't go any where near my wounds and for these reasons I cannot get dressed. I am a sticky, sore, weeping mess.

Today is a catch 22 situation. I need to go to see the doctor to get some antibiotics because my skin is so inflamed, burning and weeping that moisturising alone just isn't going to help and I suspect it is infected... but I can't get dressed.

I've rang my derm nurse at the hospital to let her know but there will be little that anyone can do for me because at the end of the day I need to be examined by a doctor, and I sure as hell won't be inviting them in for a home visit to see my nakedness in all its glory. It's a sad time when this happens because I know I need to go get help, but my body is cruel and won't allow me to go get these resources to make it better.

Stuck in a rut :(