Tuesday, 24 December 2013

Topical Steroid Withdrawal Month 7

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

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

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

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

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

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

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

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

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

xx

Thursday, 12 December 2013

December Skin: Day 205 TSW

How is everyone?

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

Face.

Leg.

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

Arm.

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

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

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

Friday, 6 December 2013

Eczema/ Chronic Illness & Friendships

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


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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This explains it better than I did


Friday, 29 November 2013

Day 192 : Topical Steroid Withdrawal

Thought I should give you all an update as to how I'm doing seeing as my last entry was about my 8th bout of eczema herpeticum.

Well I went to see my GP as I stated I would on the Tuesday morning and was given 800mg tablets of Aciclovir, the usual treatment to rid the skin of the herpetic viral infection. Needless to say it worked and I was pretty much all cleared up by Wednesday evening. I'm glad it was short lived this time.

Last weekend we stayed at Shane's parent's house for a little break away as Shane had finally taken a week away from work. Believe me when I say he's needed it! He hasn't had a full week off work since he started the job 2 years ago and all the stress of this year with my health and his 1000km Challenge has pretty much taken its toll so this week was hugely needed for him.

It wasn't much of a break though as it was this past weekend that he hit his 1000km target at a half marathon in Norwich! But he isn't stopping there of course... oh no. Being a stubborn sod he's going to run another 5 races this year, including the marathon in Liverpool on New Year's Eve just so that he can reach his target of 52 races. Crazy! I will finally get to spend my weekends with him next year. I hope. If you'd like to sponsor him for his hard efforts and because he has gone above and beyond all expectations feel free to sponsor him http://justgiving.com/shanes1000km or check out his links in the tab at the top of my blog entitled "1000km Challenge". Thanks guys!

The first night of staying at his parent's house I woke up with a red, blotchy face. Eep! I honestly haven't suffered from that since around August time before I stopped the immunosuppressants and was diagnosed with MRSA so to suddenly wake up with it last weekend was pretty shocking. It got worse each morning and I think I can only attribute it to a washing powder allergy? It was only confined to my face, the rest of my body was fine, but given I wear full PJ bottoms, socks and a baggy t-shirt makes me think that is must be a contact allergen.

Frustratingly the red face hasn't disappeared just yet. I'm not waking up with it any more now that I'm back in my own house but by the evening it will be back again, due to being itchy and rubbing it, so I don't know if I may have awakened something in some way. Brilliant.

Anyway as always I hope everyone is well!

Tuesday, 19 November 2013

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!

Monday, 18 November 2013

Topical Steroid Withdrawal 6 Month Anniversary

I drafted the following post last week however I've woken up today with my eye closed shut with pus and the telltale signs of eczema herpeticum. I'm long over due I guess...


So next Friday will mark my 6 month anniversary of being free from using topical steroids. It will also be around 3 months of quitting immunosuppressants too.

A lot of changes have been happening over this past week. Changes I am so happy about and feel incredibly grateful and optimistic that next year won't be so tough. Next year surely has to be a good year!

I've been taking small steps to be more social, whether this be grabbing a hot drink with fellow colleagues after work, or getting out of the house that little bit more for a browse in the shops, or even picking Shane up from work, I'm doing it and it feels great! I've been making more solid plans such as arranging to attend my work's Christmas party and even paying in advance. For how I've been over the course of this year, I wouldn't have even dreamed of paying cash up front for an event just in case I needed to bail out but I do feel very optimistic that I'll be able to go regardless.

I've now been attending my shifts at work 4 times a week since my last bout of illness in the first week of September. I think this is an amazing achievement as I was off so often that my attendance percentage was sky high and I'd come to the red sheet of warnings far too often than I care to. Obviously my managers understand my condition so knew it was not my fault for needing to take so many sick days but it still stings to sign that final warning sheet, where normally 3 strikes and you're out is the usual procedure. My hours have been creeping up and I even asked if I could take on another day whilst it's the Christmas period. Luckily because it is only a part time job my longest shift only requires me to be there for 6.5hrs. The rest of my days are usually only 4-5hrs, if that but it's still amazing progress!

On Wednesday I probably reached my biggest achievement of all. I was sitting in my craft room actually crafting! When we moved to this house one of the requirements was for me to have a room dedicated to all of my craft things (saying I have a LOT is an understatement!) and it's only taken me a year to be able to use it for its designated purpose. To also further this, the fabric I was using was shedding an awful lot of fibre dust and did I react? No! I'm literally over the moon <3

Also I've been able to start doing a bit of exercise. I am so unfit it is ridiculous! For years now I have been prisoner to the awful heat induced urticaria which is brought on by exertion, meaning exercise was nigh on impossible. Some how I've been able to do cardio, albeit not for long because I get so out of breath(!), but my hives appear to have been kept at bay. Sweating is still a little bit of an issue but I'm not scratching myself frantically as I would have been previously. It definitely feels a lot more tolerable.

I'm so, so happy that my life is slowly but surely getting back on track. Next year I'd like to achieve quite a lot before I hit the big 25; such as going abroad to maybe Norway or somewhere lovely I've never been, finally obtaining a full time job, moving away from this city, starting up a craft based business and finally being able to properly say thank you to Shane for supporting me and being there in my toughest times. Without him I really don't know how I'd of survived.

Life is getting easier.

Tuesday, 12 November 2013

False Advertisement Using My Photographs: Eczema Cures

So some of you may be aware if you are a friend on Facebook or a member of the ITSAN page that one of my photographs had been used to falsely advertise an eczema cure. I was alerted to this fact by someone who had come across the image and noticed it was being used to sell a product.

The website in question that used my photograph was attempting to sell a book relating to eczema cures without the use of steroids. However they took one of my images without my prior permission as a "before" picture and included an image of a different woman, who just so happened to be a brunette with blue eyes as the "after". When showing some of my friends the site they were able to deconstruct it and found that virtually none of the information was in any way truth. The image of the man supposedly writing the content for the site was in actual fact a stock image of a male model. A clause was also spotted that stated that the information on the site should be taken with diligence and "are unverified results that have been forwarded to us... and may not reflect the typical purchaser's experience, may not apply to the average person and are not intended to represent or guarantee that anyone will achieve the same or similar results."



This website is also full of viruses and other nasties so I don't recommend you click on any links provided to their site. After a choice worded email from myself my image has since been removed however the website is still up promoting lies and leading poor desperate people to buy from it.

Basically I would say stay away from VanishEczema.com and it's affiliated sites (Health Online Group) as they appear to only be working to create some serious capital and not in keeping your best interests at heart.

In the mean time you will be seeing some changes to this blog, including proper disclaimers and such. I have included one in the "About Me" section and it is actually law that any images taken by the photographer has full ownership of those photos, so that is something to bare in mind. Do not just take photographs without prior permission.

I hope everyone is well :)

Friday, 8 November 2013

Eczema vs. Weather

I just can't seem to win when it comes to what my skin can tolerate. With the weather patterns the UK gets, be it the cold, wind and rain or the hot, dry heat my body cannot cope! I just cannot handle the extremities of the two.

The majority of eczema sufferers I speak to say that their condition worsens in the colder months and becomes manageable or even restored back to its former glory in sunnier climates. This has never been so for me. I have battled with both the hot and cold - my skin gets no real respite all year round.

Winter vs. Summer


In the summer I am faced with prickly heat type rashes that are eczematous in formation and find myself suffering profusely because I just cannot get cool. These rashes can also follow on into colder months when wrapping up warm to go outside and  to protect the skin from the cold climate is refuted by the extreme heat of exertion or stepping inside a warm building such as a shop. The inability to dress appropriately for every possible temperature regulated scenario proves for a very hectic skin regime indeed.

I find that not only do I suffer from these rashes in the milder months but my skin will also crack and bleed due to the lack of moisture.

Going through Topical Steroid Withdrawal has certainly changed the way my skin acts for the better, but in some ways it is worse because of the unknown ways that the skin reacts to adjustments in temperature and humidity.

As the winter weather begins to settle itself I see a definite change in the way my skin is reacting. I have been attempting to go moisturiser-free as I found this to achieve better effects overall, yet now that the country is faced with harsh winds and bitter cold days I am finding that I can no longer cope with being so dry! However as I mentioned in a previous post, applying moisturiser to my face is causing me to breakout in small, itchy pustules- Argh!


How does your skin react to the extreme climate changes?

Wednesday, 30 October 2013

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 :)

Monday, 21 October 2013

Topical Steroid Withdrawal: Allergies

When my eczema first began to worsen and become a full body problem I was sent straight to a dermatologist to determine what had  caused this to happen after years of only having had dry and sensitive skin with the occasional rash. After being given prescription after prescription of stronger topical steroid creams, nothing was helping to ease the issue. As the skin first showed signs of inflammation and eczematous skin on my exposed areas (face, neck, chest and arms) it was decided that my problem was down to environmental issues. Blood was taken from me to determine what allergens were prevailing my ailment and the results came back as severely allergic to cats, dogs and dust mites.

Now, the thing that puzzles me most is that prior to this time I did not react severely when faced with any of these allergens. There were cats present in our household before I was born which have still remained to this day (not the same cats as that would be crazy having a cat that was older than 24!) as we are a family who are very fond of them. In a similar vein dust mites were the highest rated of all the allergens which is humourous given that I spent 3 years of my teens working as a cleaner where high levels of dust was present.

My Mum's beautiful mogs


Sure, prior to my eczematous epidemic I may have been a tiny bit allergic to these things, with the odd runny nose and itchy eyes, but this became disastrous. I suffered all summer long with little respite until I left home to attend University in the September, where my condition eased itself to an extent and life became "manageable" again. (Life with eczema is never manageable as even when your allergens are diagnosed the beast still rages on for no real reason, other than "it just does"... or so the specialists like to tell me.) Getting rid of the cats was not an option, and in fact I wanted my Mother to keep more as I didn't want her to be on her own and cats are my favourite animal afterall. When I returned home for a visit in November/ December time, just a couple of months later, all hell broke loose and I was hospitalised with a severe allergic reaction.

This continued until I was given Ciclosporin the following year, which I have previously detailed in this post. When I was forced to discontinue the drug I was back to square one with my allergies. They were still severe and I had to stop visiting my Mum at home; my home. I had to change my position at work; the warehouse and shop floor were too dusty and I was flaring all over the shop, quite literally!

Recently all this has changed.

When I stopped using the topical steroid creams in May of this year I had no idea what would be in store for me. A question on ITSAN's FAQ page struck me, it had stated that:

"Q: Why am I allergic to things that never bothered me before?

During topical steroid withdrawal, your body is very sensitive. After withdrawal, it will return to normal. Allergy testing during topical steroid withdrawal is inaccurate because your system is hypervigilant and reacts more than it normally would."


If this was true it could mean that in the future after withdrawal my life may not be so constricted. I might be able to actually visit friends and family who own pets, be able to carry out routine house cleaning, and generally return to a more normalised lifestyle. It also confirms that my allergies that were only ever mild prior to the eczema break out became severe because of the use of topical steroid creams.

Miss Kitty's blog post entitled "I am not allergic to cats" gave me further hope. Maybe one day I will even be able to own a cat myself.

See! I never used to be so allergic


Last month I visited my Mum. I figured I would probably have a flare so prepared myself for the worst. My skin didn't flare up and I didn't even take my asthma inhaler once! What was this madness, a crazy fluke?! I'm beginning to wonder what is going on.

This week at work a maintenance man took apart one of the tills that had been freezing through transactions to find that it was chock-a-block with dust. I didn't think to tell him that I had allergies and just backed away a bit as he blew it literally everywhere creating clouds of dust that hung in the air and choked me. Do you know what? I didn't need to take my inhaler that evening though my skin did flare later on but I think it was actually more due to the fact I was so dry after work as I haven't been moisturising.

And just yesterday, the very thing that prompted me to type this post... I went to a friend's flat who has the fluffiest cat in history that malts like nothing I've ever seen before, cat fur EVERYWHERE! They'd forgotten to hoover before my arrival, but it didn't matter and it isn't something I'd expect people to do, why should they? Whilst I was there I think I only took my inhaler twice, sure my nose was running by the end of the day and I started sneezing but the fact is I was there from 8am until 5pm. That's an awfully long time to spend with one of my allergens, especially one so fluffy as this beautiful mog.



I will admit that I couldn't stop sneezing all the way home and couldn't sleep last night because my nose was blocked but considering I used to literally have to step into the same room as a cat and end up in hospital with a severe full body allergic reaction, just from having it look at me is saying a bloody lot.

I think withdrawing from the medication that was supposed to treat the eczema is the best thing I could ever have done for myself.

I truly do.

Friday, 18 October 2013

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


Friday, 11 October 2013

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.

Monday, 7 October 2013

Eczema & Dermatillomania

I must start this post first off apologising that my posts are becoming less and less, but it's because I feel as though I don't have much to talk about recently. My blog started off in its infancy as a blog to inform people about my severe eczema and to help them, and other fellow sufferers, relate to the debilitating nature of the condition. As time went on I found out about Red Skin Syndrome and I was getting illnesses pop up far too frequently for my liking and so this here blog took the form of a journal.

Not a great deal has changed since my last entry regarding my skin, it is still rather pale, however the scabs on my legs have dramatically spread and look even worse in their appearance because I just can't leave them alone. This is why I would like to turn to the subject of Dermatillomania.

Dermatillomania is described as an obsessive compulsion of skin picking. It is much the same as Trichotillomania (hair pulling) where the compulsion becomes too much and despite knowing the consequences, such as creating ugly, raw and even scarred, disfigured skin, it just can't be helped. It brings a sense of relief to pick at the skins irregularities and is even a pleasurable experience.

I, myself have been picking at my skin since the beginning of my severe eczema phase (Jan 2009). Prior to this I had strange habits such as cutting individual split ends from my hair for hours and hours. Skin picking is not a habit that can be easily broken, much like scratching the all-consuming eczema itch. Having eczema primarily means that I will always have scabs to pick and dry flaky skin to attack with tweezers, it's just part and parcel of the condition. I know I won't be alone in my skin picking habit, as I know of many others with eczematous skin who do the same.

I wanted to talk about this because I am having a lot of trouble breaking the habit of picking at the scabs on my legs. Skin picking has always been something I've done as a way to relax and is one of my coping mechanisms. I have been known to spend hours and hours just picking and tweezing away at my skin and I even have urges at various points in the day to just go home and pick. When I'm out away from home there's always the thought in the back of my mind about how I will go to town on my skin later on. It's a bit like a dirty little secret because I like the experience of just sitting there picking off all the dead and irregular skin but if people knew what I did, and I have told some of my friends, they would be horrified and disgusted.

I realise how I'm basically destroying my skin and making it even worse because it just isn't being given the time or the means to heal naturally but I just can't help myself. It's like an addiction. It has been compared to self harm because you're fully aware of what you're doing to your body but the compulsion for relief is just too much.

I've decided to publicly create this post because I feel the more people who know about this, the more I may feel embarrassed that I am causing myself harm. I've been taking measures to not use tweezers on my legs, to keep them covered up, and if they do become itchy to allow myself to scratch if I have to just to quell the itch, otherwise it just becomes all too consuming and there's no stopping me. I will literally go to town taking every single scab off, making it bleed and produce proteinaceous fluid so that it can form new scabs. Sadly if scabs are picked off too much it can cause scarring and larger areas to form.

I said in a previous post how one of my life goals was to be able to freely wear shorts next year without tights or leggings. Let's hope I can leave my legs alone to actually fulfill that.






Does anyone else suffer from this annoying little quirk? Please comment and let me know :)

Tuesday, 1 October 2013

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:


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...?


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

Tuesday, 27 August 2013

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!

Wednesday, 21 August 2013

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.



Sunday, 18 August 2013

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.

Tuesday, 13 August 2013

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.