Living With Eczema Book

As you are aware I endeavour to spread awareness about eczema and how horrible of a condition it can be. I was contacted in the summer of last year by Mei of http://eczemablues.com/ to share a picture of my eczema for a book she was co-authoring with her daughter's doctor, Professor Hugo van Bever. Of course I said yes as I love to do anything that may help others.

The book is finally out and is incredibly interesting and detailed as it is split into 3 parts; Learning about Eczema, Living with Eczema, and Eczema and Beyond. The first chapter discusses the basics of eczema and gives an in depth insight into eczema as a condition and why eczema occurs. This then leads on to the second part which details diagnosis, triggers, prevention, treatment and adult eczema. Finally, the third part looks at future research and the things that don't work. Between each chapter we are also faced with questions asked by Mei to Professor Hugo who answers all the things we've ever wanted to know about eczema.

It is a factual book that is written professionally yet can be understood by all and the pictures used are really helpful in giving a better idea of how eczema presents itself. However the only problem is I think there was some confusion when selecting images as the photograph that was used of me was inserted under the eczema herpeticum heading. I don't actually have herpeticum in that picture so it is a false interpretation of what it looks like. I actually had MRSA there.

Image used to depict herpeticum is actually MRSA

Eczema herpeticum with secondary cellulitis infection

For those wondering, yes it does cover the topic of steroids and also steroid phobia, but it is fair in saying that people should not be frightened of them so long as they are not misused. I definitely did, and was advised to misuse them, hence my topical steroid addiction. It also includes a table featuring the potencies of common corticosteroids and another to advise on their application. It does detail numerous other treatments also.

Aside from the photograph issue, I think the book is excellently laid out and written and will be an asset to those who live with eczema and also for those who don't but want a better understanding of the condition.

Thank you Mei for allowing me to help your project.

Book cover

For more information please visit: http://eczemaqna.com/

Healing Scars The Natural Way

Yesterday I managed to catch some sun on my legs in an attempt to heal the scars left over from picking at the scabs from my bout of MRSA last summer. Hopefully I can keep it up by going outside on a regular basis. Typically it's all overcast and misty today though!

Has anyone else been basking in the sun?

Eczema Herpeticum (Round 8 for Reals)

So as mentioned yesterday after I was having such a good time, my skin had to perk up and remind me that I'm not out of the woods just yet. Eczema Herpeticum round number 8 (this time it is number 8 because August's bout turned out to be MRSA) has decided to renounce itself.

It started on Sunday evening when I got in from work, just in the outer corner of my eye. By yesterday morning my eye had gunked itself shut (mmm!) and I was left with an unsightly pink and bloodshot eye. The fact it had done that filled me with dread as I knew instinctively that it was definitely herpeticum that I was dealing with. I had my usual shower around lunch time and as the skin on my face was particularly uncomfortable and dry I decided to moisturise the rest of my face, completely avoiding my eye area. Of course that didn't seem to matter in the slightest as the moisturiser then acted as a catalyst of which to spread the bloody disease across all regions of my face. I'm my own worst enemy.

Poor gammy eye

I decided to go in to work anyway as it would take my mind off the widespread tingling sensations and volts of pain that come with its territory, regardless of the fact I knew I looked disgusting and children would cry and mother's would scream in sheer horror. Obviously that didn't happen and no one said anything or flinched away from me so that boosted my morale somewhat. As it was nearing the end of my shift I looked at myself in a mirror (oh vanity!) and saw that the pustules were more widespread and oozing fluid so that it looked as though I was sweating heavily. Simply delicious!

Oh, I'm so attractive with my gammy eye!

When I got home I immediately went into the bathroom and began to dab at the oozing pustules with tissue, making sure to use a new section of tissue every time to avoid the spread. This seemed to work a treat as today although my eye was still gunked shut and my face is drier than dry the pustules are dessicated so are unable to spread further hurrah!

Luckily on Sunday night when I had an inkling that it could be herpeticum I sought out some left over 800mg Aciclovir tablets from my last bout and was able to take those. I have since been to visit my GP this morning to get a proper lot in which I can finish the course.

Go away herpeticum you're not welcome!

Rambling Ramble: 5 Months TSW

This coming Tuesday will mark 5 months off topical steroids. :)

Not a great deal has changed in the last couple of weeks. I'm still getting the scabbing on my legs and I just can't leave it alone because I'm a silly thing! I also have patches on my arms, torso and back that I keep having a go at but hopefully they will begin to clear up again soon. My face is also a source of annoyance. For a good month now it has been pale albeit dry but definitely vastly improved, this past week I have had small pustules popping up all over my face again, just like how it did during the MRSA outbreak. I'm still taking the antibiotics for it so hopefully it will calm down soon. I'm not sure if these spots are occurring because of the said MRSA or because I started using moisturiser again.

I've also used it on the other areas to stop the dryness and they appear to have become even drier and itchier. There is a lot of talk floating about right now about the effects of paraffin based moisturisers and how they affect the skin barrier and in turn cause a secondary withdrawal. To me, it all makes sense, as paraffins are synthetic products so it is no wonder that our bodies reject its application, but it is then trying to find a natural moisturiser that will work that is the next step to undertake.

A few months back I was sent some natural products to try but was reluctant to give them a go because that was around the time that I was suffering from head to toe and kept being infected with herpeticum. Now I think I will try to give them a test drive.

In other news I went to see my derm nurse this morning for a catch up. I am pleased to report that I don't have an appointment for another 2 months! This is huge as obviously I was seeing them every 2-4 weeks to monitor my progress, and going in between visits when I was particularly bad and couldn't wait for my scheduled appointment. Prior to today I hadn't been to the hospital since Friday 20th September. Massive achievement :)

As ever, I hope everyone is having some respite from the evil TSW beast!

xx

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!

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!

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

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.

Good News & Bad News

So this time last week I was in a state of real anguish and turmoil; riddled with herpeticum that just wasn't getting any better and thinking that my chances of making it to the festival were incredibly slim, given that getting dressed and leaving the house were a massive feat in themselves. Fast-forward to Thursday and I felt significantly better, or at least well enough to venture out of the house and endure the trek to Derbyshire to stay in a Travelodge for the weekend.

The next morning, after little sleep (being right next to a busy dual-carriageway is not cool), my body had visibly improved a heck of a lot and I was able to go to the festival site!!


Ignore my miserable expression, contrary to how I've been captured I was far from unhappy!

I took many, many precautions and ended up with bags and bags of luggage to prepare myself for the worst if it were to happen... which it really didn't!  I packed my "Comfywrap" leggings and polo-neck tops to sleep in to collect the ooze and stop me from ruining the hotels nice, white, crisp bed sheets and many tubegrips to wear under my leggings during the day. Clothing-wise, whilst not wanting to deviate from the sea of black too much, as it would make me stand out even more than necessary, my choice of attire for the weekend was very "skin flake friendly". I wore a lot of white and grey to stop it from showing up too much. I also wore a hat and large sunglasses to protect me from the sun. I was fully expecting to get sun burnt because I wasn't wearing sun cream as I didn't want it to irritate my already irritated skin, but thankfully I didn't. Funnily a lot of my friends didn't seem to recognise me at first as I usually dress in "metal" attire with at least some make-up on, but everyone appeared to be over-joyed that I'd been able to give two fingers to my illness and make it.

I can't thank Lisa enough for allowing me to stay in the Rock Society tent to keep cool and out of the sun. She really was doing everything possible to accommodate me and make my life that little bit easier at the festival, and for that I'm truly grateful.

And now despite having a brilliant time watching bands and reuniting with friends I only get to see at the festival and being able to withstand the long days I'm met with a bit of a spanner in the works...

My dermatologist and I assumed that I had eczema herpeticum because of how the "vesicles" appeared on my legs and the spreading nature of it. After 4 missed calls yesterday morning and a rather serious sounding voicemail message from my derm nurse, who is usually humourous regarding my condition, it's safe to say that I was very worried. She eventually got in touch with me and told me the bacterial swab they'd taken had come back positive for MRSA. 

That's right folks. I have MRSA. Another one to tick off the ever growing list of infections I've acquired.

I can only assume that I contracted this during my stay at hospital as I hadn't really left the house to be able to come into contact with anyone. Then again, a vast amount of the population live with MRSA on their skin and up their nose so who's to say? It just makes me wonder if when I was really bad the week after coming out of hospital where my skin seemingly "split open" that that is what it was, and not Topical Steroid Withdrawal.

I'm now taking Doxycycline, an antibiotic that the infection isn't resistant to so fingers crossed it goes away soon.

What baffles me most about this is that my skin started to improve at the end of last week, surely if the MRSA was raging and probably fueling itself off the penicillin based antibiotics I was taking, why did I have improvement? It also baffles me that when you look at images of MRSA they tend to be of nasty boils and doesn't tend to present itself as it has in me. Odd.

When all you want to do is cry, you just have to laugh instead.

Edit: and no one I came into contact with should be worried unless you have a seriously suppressed immune system like me, with open sores. Many people live with the virus on their skin and it does nothing, it's only when it colonises and gets in through wounds (hello eczema) that it can turn nasty.