4 Years TSW

Hi everyone, I feel I owe you a post and an explanation as to my whereabouts!

Can I just start with saying thank you so, so much to anyone who has asked after me, anyone who has taken the time to email me, comment or message me on other social media. I am so grateful for you all <3 For those who have gotten in touch with me who wanted answers I'm so sorry I've been unable to supply them. Life at the moment is pretty hectic.

I've been wanting to post for a long time but never quite knew what I was going to say. My 4 years TSW anniversary was May 22nd, I was looking to post then but just didn't have the time or the will. It was only really this morning when I woke up a lot earlier than anticipated that I happened to look at a message on Facebook and discovered a whole section of unfiltered messages that contained an overwhelming amount of unread messages, dating all the way back to 2012! I am so annoyed that I've only now just been alerted to them and I can only but apologise for not getting back to you. I will say as well though that I don't add people I don't know to my personal Facebook account - if you want to talk to me I'd prefer it you emailed me. Alternatively I guess I could make a Facebook group...

So anyway. How am I? How is my skin?

I'm doing really good at the moment. I've landed a full time job in the city, which means hourly commuting each way. I'm in the process of buying a house, and have been since November so you can only dare to imagine the stress that I've been under! That is actually another reason I didn't want to post yet - I was hoping I could update from the new house but hey ho - life just doesn't always follow a plan.

At current my skin is pretty good. Dry, but good. I'm still taking Ciclosporin for now but I hope I can come off eventually or even start on Dupilumab, we will see. It hasn't been plain sailing though, when I first started at my new job I had a horrible flare which was really quite embarrassing after being good for a few months and having to meet new people. It keeps coming and going but it's bearable and I also put it down to the stress that comes with the house buying! Not only has my skin been bad but I've also been experiencing other unexplained health issues as well which we're currently trying to figure out. Stress is a funny old thing.

Another thing I wanted to mention is heat - it's really hot in the UK at the moment and I'm OK. I can deal with it now. I no longer come out in a full body heat urticaria rash, I'm starting to feel more confident that that is a thing of the past and was fully related to topical steroids, but until I flare again I'm not going to say that for definite.

There are moments that have me stopping and thinking, things now that I've been taking for granted, that I couldn't even dream to do when I was in the deep grasps of TSW and it's just astounding to see how far I've come. I have a full time commuters job, I can tolerate heat, my skin no longer comes off in gigantic flakes that compare to sunburn peel, I don't have to vacuum my bed, I can take a 5-10 minute shower and be ready within an hour. I can stay at other people's houses without thinking of myself as a hindrance or worrying that my skin or routines will be an issue. I'm no longer housebound. Touch wood I've not had a skin infection or a herpeticum outbreak, in fact I can't even remember when I last had one!

The only things that are still problematic for me is the aforementioned dry skin but even then it's not really that much of an issue - it'd just be nice to have suppler skin but dry skin has always be an issue of mine since day one. I'm also not yet confident I could live with a cat but I think that could be due to lack of exposure, I only spend time with cats once every couple of months so it will be hard to build up a tolerance, but gone are the days of full body rashes and acute asthma attacks when I so much as dare to look in the direction of one. I also still suffer from dermatillomania but I feel now that my skin has cleared up there's not as many imperfections for me to pick at, but of course the tweezers still come everywhere with me! I also don't wear make up but I'm cool with it... that's the other thing, when going through such a traumatic illness you just start accepting your appearance for what it is. In my early 20s before the onslaught of TSW madness I used to wear make up every single day and when I became so ill it was a travesty, but over time you just accept that it's your face. It'll do.

And now onto the eagerly awaited awkward photos (that's the other thing, it's been so long since I've taken photos of myself I just can't haha!):

I decided to take photos in a changing room because the lighting is always different.

Ignore the scab on my chin... it was a spot but dermatillomania and that...

I woke up like dis

Awkward flabby tummy pic

So as you can see, dry but currently rash free!

Hope everyone is well and I promise not to leave it so long next time.

Also I was emailed about this giveaway to share with you all which we can use to celebrate my 4 years of being steroid free!; Win some Dermasheets for your bed worth $270!

Good luck!

32 Months TSW

Hi everyone,

How the time flies! It has been roughly 3 years since I set up this blog in order to spread awareness of severe eczema, then learning of steroid induced eczema or 'Red Skin Syndrome' and in this time I have had a staggering 330,000 blog views. Your kind emails and comments also mean the world to me as I am humbled to learn that my blog has achieved it's aim of spreading awareness and showing people that they are not alone in this. I am truly grateful for the opportunities that have been opened up to me and for those of you who share your own experiences with me to show that I am not alone.

Thank you.

In other news sorry I have been AWOL recently. I work full time now and find it hard to find the time and energy to write on here. But I am still here! Although something scary happened on Christmas day morning. My Google account was 'hacked'. 2 weeks of trying to get hold of Google later, to discover that Google had just decided to change my email address, thus locking me out of my whole account. Cheers Google! Never mind... It's all resolved now!

I bet you're all dying to know how my skin is? Well it still isn't exactly great. My face, neck and arms have recently flared and I think the trigger is stress related. I mentioned that I'm now working full time - it's still within the same company but it's in a different department and I'm learning a hell of a lot. There's only 2 of us in the department and my colleague had a week off after Christmas which was probably the worst time for her to disappear. Needless to say I struggled immensely, and hence the result is that my skin is a bit of a mess. But that was weeks ago now, I hear you cry. Yes it was weeks ago but now that I no longer have the adequate time to heal (read; laze around and do nothing), it's going to take a little bit of time. It is however slightly better today than it was though.

Rashy, dry and wrinkly!

Yes my brows need sorting. But I have some!! & I'm also noticing more baby hairs on my head :)

Splits on my eye lid creases

I am now officially vegan. Shane and I have seen the light and don't want to consume any more dairy - I stopped eating meat months ago. We even enjoyed a vegan Christmas, at both of our parent's houses and it was glorious.

My next step is to try to incorporate more raw fruits and vegetables into my diet, but it is hard to think meal-wise what I can eat for lunch at work. I work from 7am so am hardly in the mood to make meals for work. I've been enjoying the night before's left overs or pitta breads and hummus with tomatoes and spinach but I want to try to get away from bread and consume more vegetables instead.

I've been snacking on fruits - kiwis, blueberries, bananas, oranges and apples but find they don't sustain me for long. I can't take huge portions of these things either because I don't have much time to eat them and we're forbidden to eat at our desks so that's a bummer. I would take salads but the prep thing is the only thing holding me back - I haven't actually tried it but I imagine it wouldn't taste so fresh making it the night before? I don't know.

Breakfast is usually a variation of overnight oats or smoothies so I'm definitely getting my quota of fruits in there. I just need more during the day. Also considering probiotics now. Something I've been thinking  I'd try for ages but I don't want to pay an arm and a leg for them. Does anyone have suggestions of good but cheap ones?

A Brief History From Memory

Hey guys,

I've got this written in my FAQ but not many people read it so I thought it was worthwhile posting it here. It's just a brief low-down of my eczema/ skin condition journey. Obviously there is a lot more to it and this is from my ever dwindling memory rather than from doctors notes but it is a pretty accurate account of what has happened to me. It's also not the most coherent but helps to give a better understanding of the complexity of my condition and why I have gone on to develop an addiction to the medications - I just used too much! It is also quite likely I've forgotten to include something. But here we go:

• Childhood - Hydrocortisone. Oral Prednisolone (for asthma). Had chicken pox twice in the space of a year.

• 2001/2 - Betnovate scalp lotion (first started to use hair dye)

• 2003-2005 - all of the above treatments and various moisturisers when needed for small patches that developed on face.

• Nov 2005 - Stressful event resulting in huge allergic reaction affecting face, neck, arms and chest - All the above + Eumovate, Betnovate

• April 2006 - cleared up and returned to small insignificant flares on face and neck. Just used Hydrocortisone and Eumovate

• July 2007 - Heat induced urticaria developed when on holiday in Spain.

• 2006-2009 - Hydrocortisone/ Eumovate

• 2009 - Was given steroid to treat rash on face, within a few months spread all over my body apart from legs. Used Dermovate, Eumovate and told to use as much as I wanted/ like a moisturiser. Had patch testing and IGE testing. Oral steroids. Coal tar, yeast cream (not to be used on face but was told to by derm), Potassium Permanganate. Protopic. Developed red/brown patches of skin on my neck and elbow flexures that were as hard as a scab and really painful. Couldn't move my neck. Was given a cream when I moved to Lincoln but can't remember for the life of me what it was. Was bloody brilliant though.
• Developed severe allergy to the cats at my mum's and was hospitalised a few times when I went to visit, despite having lived with them my whole life!

• Jan 2010 - Immunosuppressant Ciclosporin whilst using steroid creams.

• August 2011 - started to get high blood pressure so had to come off Ciclosporin. Was given several rounds of oral steroids when steroid creams wouldn't help.

• April 2012 - had round of Oral steroids and developed eczema herpeticum after never having a cold sore in my life.

• Tried Ciclosporin again to no effect.

• Visited Allergist/ Immunologist for another perspective but was just ridiculed and humiliated and told "you just have eczema".

• Tried various diets to no avail.
• September 2012 Tried immunosuppressant Mycophenolate Mofetil to no effect.

• October 2012 Tried immunosuppressant Azathioprine to no effect.

• December 2012 Tried immunosuppressant Methotrexate had no effect but started losing hair so came off it in Feb 2013.

• Light therapy which just made my skin look sunburnt, minus my white nose so knew it wasn't a true burn.

• Tried Ciclosporin again to no effect but remained on it for some time. Found out about TSW.

• Started TSW May 22nd 2013. "Eczema" spread everywhere apart from my toes.

• Had major super infection from eczema herpeticum and cellulitis in the eye so was hospitalised for a week. Came off Ciclosporin to try to speed up getting rid of infection.

• Went back on Ciclosporin but became incredibly poorly.

• August 2013 - Found out I had contracted MRSA from the hospital stay so ceased Ciclosporin. Started taking antibiotic Doxycycline for 2 weeks.

• End of August 2013 - Had suspected "TIA"/ "Mini Stroke"

• September 2013 - MRSA came back with vengeance so proceeded to take Doxycycline for 3 months as should have done originally.

• Skin stayed in a mostly good state until April 2014 though still had random bouts of herpeticum but not so extreme.

• April 2014 - Bad case of eczema herpeticum.

• May 2014 - Moved to West Yorkshire and skin became as intolerable as when first come off steroids. (Yearly rebound?)

• Was incredibly poorly until August 2014 when went back on Ciclosporin. Had 6 weeks off work.

• Ciclosporin helped for a month and then had recurring staph infections from October 2014 - May 2015.

• May 2015 - Last staph infection *touch wood*

• August 2015 - Been in a stagnant phase where I will randomly flare but be mostly clear. Eyebrows are back. Still on Ciclosporin but on a higher dosage. Came off birth control pill in May (had been taking for 10 yrs) and have gained a lot of weight. Waiting for hormones to level out.

So all in all we can conclude that I have been given far too much potent topical steroid creams to slather unnecessarily all over myself. Too many round of antivirals and antibiotics for my endless bouts of herpeticum (think we're around the 20x mark now?) and bacterial infections so my gut probably doesn't understand what's right or wrong any more. Far too many rounds of immunosuppressants and just too much in general for my poor old body to handle.I just hope my body will one day forgive me and that all the nutrients I consume will finally have some effect.

Month 21 Topical Steroid Withdrawal

Hi guys,

I didn't mean to go so long without updating. Here is something I meant to tell you about. A day or so after writing my previous post, I developed pompholyx/ dyshidrotic eczema on my hands and feet. I've had it on my hands once in the past, to which the GP misdiagnosed it and told me I had scabies (lolwot?) and of course it wasn't, though that's a story for another day... It was this bubbly eczema stuff which went away with steroids, but of course that was before my steroid withdrawal so I panicked a bit this time knowing I might be in a bit of a pickle.

I've had to really up the contrast for you to see as it is ridiculously difficult to photograph.

Basically I was given antibiotics, which did their job of clearing up the infection and was told to restart my Ciclosporin to control the rest of my skin and to help the pompholyx and that was that... Although of course it's never that. The pompholyx buggered off but the infection came back a few days after finishing the course. Urgh!!!

I rang up my dermatology nurse on Friday just to let her know it had come back and she wanted me to see someone, however there was no one available to see me and I didn't want to resume the antibiotics so decided to try something different. For the first day or so I did what I normally do and let my skin dry out to cease the infection from spreading. However it was so unbearably painful that I needed to try something. I filled the sink up with water, epsom salts and a few drops of tea tree oil and used a face cloth and just planted it over my whole face. It was fine until it all dried out again.

Later on I tried just putting tea tree oil straight onto a damp face cloth. Never again. Oh my good God! The pain! It's definitely one that needs diluting.

I then came up with the idea of mixing a few drops of tea tree oil in with my white soft paraffin, and sparingly applied it to the infected areas. It left my face a bit red but a bit later it had calmed down my face significantly and I was starting to peel all over. I repeated this all weekend, mass shedding occurred, and low and behold the infection has gone! Hurrah!! I'm still left with some spots and redness and stuff but as it isn't a systematic treatment, I do expect it to take a bit longer. I'm so chuffed though.

From now on I'm going to be adding drops of tea tree oil to my emollient when I need to use it.

Three cheers for tea tree oil!

Also apologies for those who have emailed me and gotten no reply, I've been pretty much AWOL and moping around feeling sorry for myself. Hopefully I shall be back on form soon.

Still Suffering

Really need to find the charger for my proper camera. My phone is crap at depicting rashes and redness. You can see it in some more than others. I give up.

Rash pretty much covers entire body.

Excoriations on neck

Topical Steroid Withdrawal Month 19.5

Over the past couple of weeks I had stopped taking Ciclosporin but my skin just wasn't getting better so I decided to use it again the other day as I need to be able to work. I'm pleased to say doing this has helped to kick-start it and it is working again.

My visit to the dermatologist this morning ended up being surprisingly fruitful. She wants to keep me on the Ciclosporin for a year and then I will need to come off again, which is fine by me. I enquired about blood testing for deficiencies which she gladly agreed to do and said Vitamin D deficiencies can be a huge culprit in eczema cases. This I already knew as I have taken the supplements in the past but it was nice to hear her say it.

She also suggested taking my IgE levels again for cats, dust, pollens etc. in view of referring me onto an immunologist for desensitisation. I am so bloody happy. Not once when I asked about this in the past at my previous hospital was I told this would be possible so it is nice to have that avenue to venture if needs be. However I am also keen to find out my test results now that I am nearly 20 months into my TSW. Before quitting steroids I used to have acute allergic reactions and was even given an epi-pen as a precaution as it was unknown as to whether I would go on to develop anaphylaxis. However I noticed as time went on during my TSW I could stand to be around cats and have more exposure to allergens without rushing to A&E.

I also asked about Dupliumab which is what my previous derm wanted me to trial but I was fed up of being a guinea pig. I only really mentioned it to keep her well off the steroid route but she appeared to be happy with this option though the hospitals in this area aren't trialing it as of yet but I would be a suitable candidate if it came about.

When she examined me she asked what I was using topically as my skin is currently very dry. I told her white soft paraffin only, to which she asked about steroid use. I said my skin seemed to have become addicted and they weren't working for me any more and to my complete surprise she said "Yes, that can happen." What?! This is the same lady who said the complete opposite last time I saw her. No doubt she'll say differently again next time I see her but even still!

I have come away feeling very happy. I know derms are the enemy but today she seemed to be on my side and I left unscathed apart from being stabbed in the arm of course.

Happy days :)

Here's a silly unflattering pic I just took to showcase the paleness:

For reference this was me the other day:

Happy New Year Red Skin Friends!

Wow. It has been an entire month since I last updated this blog.

Let's start by saying Happy New Year everyone! I hope this year will be good to all of us going through topical steroid withdrawal, and to those who haven't started the journey yet, I hope this is the year you see sense and potentially save yourself from long term pain of steroid addiction.

I figured I would reflect on and talk a little about what 2014 had in store for me so that I can look back and see how far I have come.

The start of 2014 was great. I was in a good place, my skin was pretty decent. I was able to wear black clothing, go out with my friends more, work more full time hours and not have to worry about my skin.

This soon changed. The start of the year my other half was in a bad place mentally and we needed to get out of Lincoln and find him a new job where he could relax and feel appreciated for all his efforts. I was also yearning for change as Lincoln had become a bit stale and I felt ready to move on and go forward with life. He found a fantastic job in Leeds, and off we moved at the end of April. However even though I did not feel at all stressed as I was excited for the change, my body had other ideas and off again started the pain and misery of my second full body flare. I was gutted. I wanted good change, to finally get on with my life.

I believe it has to do with the change of environment but there is little you can do until your body naturally adjusts. So pain was endured and I had to begrudgingly take time off work. After a trip to the doctors where I was given an antibiotic that I had used numerous times in the past I woke up the next day having had an allergic reaction. I was shipped to hospital only to be told it was 'just my eczema' giving me grief. Even though it was obviously an allergic reaction given my face and eyes had completely swelled up, just as it does when I am faced with allergens. Funnily the swelling went away after I had ceased the usage.

I was then sent to the dermatologist to continue with treatment that I had received at Lincoln hospital which turned out to be a nightmare having to start from scratch as they didn't seem to be able to locate any of my previous notes. There was a big family wedding coming up in August and I needed something to control my skin, so after a lot of arguing that I wasn't going to use steroidal treatment we agreed to put me back on Ciclosporin even though I was apprehensive because it had failed to work the last time and I ended up with MRSA in 2013.

The Ciclosporin worked its magic, but only for a short period. By the end of October my skin gradually became worse and worse and I dealt with more and more infections. I'm still in this place now where I don't know when my next infection is going to occur but I feel it could just be around the corner. I have a follow up appointment next week with the dermatologist which I am not looking forward to but I will see if it is possible to carry out blood work for deficiencies.

There has been one excellent thing though. I actually went home to my family for Christmas this year and it was great. My brother also has a cat and I didn't appear to react for the entire duration of the day. I did however start to get sneezy at my mum's house but all in all I was ecstatic that I could stand to be there at all.

I really hope this is the year things start to look up for me. I would ideally like to be doing a different job that doesn't involve me dealing with members of the public on a daily basis, as this is contributing to my endless infections, despite my precautions to use hand sanitisers and the like. I feel an office based job would be better suited for my recovery and much less stressful overall. Yet without the relevant experience and my awful absence record I'm still going to be stuck for a long while yet. Ho hum. My absence will only get better if I have a better suited job so it is a bit of a vicious circle right now. I feel stuck in a rut and want to broaden my skill set and be able to lead the happy life I had intended.

I hope everyone else is well and I endeavour to update more frequently again.

Everything For Eczema Bamboo Pyjama Giveaway

Some time last year the lovely Gail from Everything for Eczema got in touch with me to ask what I'd like to see in adult pyjamas, specifically designed for eczema and allergies with a speciality in topical steroid withdrawal. I suggested having leggings with feet and also some form of gloves/mittens attached to the sleeves so that if would be difficult and nigh on impossible to scratch yourself with them on.

She got back to me a few months later with a design that seems to be exactly what we need! They are made from bamboo, organic cotton and 4% lycra to make them easier to put on over sore skin. The bamboo also  has excellent properties. It makes the fabric super soft, breathable so it helps to keep the body temperature regulated, is more absorbent than cotton for excessive sweating, and also contains antibacterial properties. The pyjamas have been created in Europe by an organic manufacturer so all of the fabric and dyes used can be traced if necessary. After all, we are all going through bouts of intense sensitivity with our skin so this factor is very important! The labels are also on the outside of the garments so none of that needing to cut them out because they irritate the skin.

Sorry for the rubbish quality photos!

Yours truly modelling the pyjamas

The pyjama top has fold-over style mittens on the sleeves which I think are an absolutely genius idea because there is no way in your sleep-like state you can get these things off to attack yourself, unlike when wearing gloves or mittens where they easily come off and you find you've torn yourself to ribbons. They're not impossible to get off but you really have to think about what you're doing when you do flip them so it's fair to say you're pretty safe when you're asleep.

Sleeve turned inside out to act as mitten

Sleeve the hands-free way to show you how they can be transformed into the mitten

The bottoms have enclosed feet so there is no way at getting in there and tearing your legs and feet to bits so they are well protected. The waist has a draw string fastening as it was thought that elastic could be irritating to those with allergies. It also means you can wear them on your hips or waist and as tightly or as loosely as you need when your skin is sore.

The built in sock

Drawstring waist

These pyjamas have really helped to keep my skin in check when I have gone through my intense stints of itchiness and open sores.

They are a lovely shade of blue in colour and come in sizes ranging from an XS to XL which can be worn by all adults and even older children. There is a size chart that can be referred to on the website to ensure that you get the correct size. They are £59.95 for a pair, however it is a great investment because due the bamboo/cotton combo they are truly made to last and withstand the steroid withdrawal cycles.

Gail has been lovely enough to give away a pair of these amazing pyjamas to one of my lucky readers! A new pair that is, not the one's I'm wearing above!

For your chance to win please just fill in the widget below: it barely takes any time at all although it is recommended that you sign up to blogger so that you can leave a blog post comment and follow my blog!


a Rafflecopter giveaway


Also as an aside and if you are not a winner - I am not endorsed for advertising these beauties but I truly do feel they make a difference to our quality of life when going through TSW so go grab yourself a pair here and enjoy actually feeling comfortable! http://www.everythingforeczema.com/adult-eczema-pyjamas.html. It's also lovely knowing a company actually cares about us and sees TSW as being a valid condition!

Man's Steroid Reaction

I found this posted on the ITSAN Facebook page today. It is so compelling and I'm so happy to see steroid addiction might now get more recognition, especially because it showed a Google image search of other bloggers going through this horrific ordeal, that in turn may provoke others to do the same to read up on the condition.



Not everyone seems to be able to view the embedded version so here is a link to the website http://www.cbc.ca/news/canada/british-columbia/steroid-reaction-causes-b-c-dentist-to-question-prescription-1.2775404

It is however frustrating to see that the dermatologist is obviously aware of steroid addiction and just states that if he had weaned himself off he wouldn't have suffered the reaction. I suppose in one sense it's good to see at least one of them is aware of it and not just telling him it's just worsening eczema as every other derm seems to do.

Also it will be interesting to see if there ends up being some kind of epidemic with the steroids, seeing as there is currently some trouble with their manufacture. Will we be seeing a rise in red skinners?

Ever onwards and upwards!

Not Getting Any Better

So things seem to be getting worse and worse. This past weekend was good though. I decided that even though I was probably in no fit state, I still wanted to go on a coach trip with my Mum to Chester/ Liverpool which meant getting up at 4:30am to drive up north to hers, to catch the coach for 9am, to go all the way back past Leeds again to get to Chester. Joy lol. But we did have a jolly good time despite me not being in my best shape and feeling sorry for myself a bit. It definitely beats staying at home moping around alone anyway!

So yes, Mum came back home with me last night as although I wasn't great I was still better than I had anticipated so we had decided that we would have a shopping trip in Leeds. I also had a follow up dermatology appointment to attend this morning from my time in hospital the other week. However by the time we got home, there had been some road closures in the city centre and I got SO lost (thanks sat nav!) which resulted in me being completely stressed out and a little worse for wear and didn't think it had actually been a great idea to invite my poor mum back with me when I felt so hideously ill. But we persisted all the same.

So this morning: after getting completely lost and driving round and round the infamous ring roads of Leeds, I finally arrived, 40 minutes after my appointment slot. It turns out there was a long wait anyway so it probably worked out in my favour that I had been so late as I didn't need to wait too long to be seen.

The dermatologist was the same man who had seen me at the hospital. He examined me and said I would need a course of oral steroids and topical steroids but obviously I wasn't having any of that! After we'd talked about my extensive and complicated history for a while I could tell he was only really interested in following normal protocol and refused to believe my topical steroid dependency. I told him about how my allergies had diminished when I stopped using them and he said that it was just coincidence. I think not.There was no changing his mind though. He was adamant that this was "just the nature of the eczema beast" and that I would always be fighting it. Eye roll.

I asked about going back onto Ciclosporin even though I'm now afraid of using any immunos because of the high risk associated with me contracting eczema herpeticum. He said he would need to test my bloods but he wanted me to go down the steroid route first. I declined and started to get into a bit of a tizz, in the end it resulted in me bursting into tears. He asked if I'd like to think on it for a while, so I was whisked off to another room to speak it through with my mum and one of the nurses.

I think we must have been sat there for about an hour just going round and round in circles. The nurse had to leave the room at one point and when she came back she said she'd spoken to another of the nurses who suggested it'd be a good idea to admit me to hospital so they could monitor me to ensure a herpeticum attack didn't occur. Although I think it would probably have been the best idea, I don't want to use steroid creams any more, neither do I want to risk putting my job in jeopardy by having any more time off. If I was allowed to be admitted with just the use of moisturisers I would probably have said yes, but as it is... I just can't.

After much deliberation I went back to the dermatologist and we came to a compromise and agreed that I would go back on the Ciclosporin, providing my bloods and chest X-ray came back OK. I would also be taking a maintenance dose of Aciclovir to prevent the herpeticum from returning. This seemed to satisfy him and steroids weren't pushed on me again thankfully. The only thing is I have to wait 3 weeks to be issued with the Ciclosporin so we'll see how I get on in the mean time.

I am in a really bad place again and definitely need some form of intervention right now just to get through this as I need to start getting my life back on track again. Stress is definitely the trigger for my skin and moving to Leeds certainly hasn't helped me in the slightest. I just hope I see some small improvements soon with my dead sea salts. Also I was wondering where people are getting their colloidal silver from? I've heard that sometimes a silver substance can cause the skin to change a bluey/silver colour and is posed under the name of colloidal silver and I'd hate to buy the wrong thing. You never know who is reputable these days!

Any ways, I hope everyone else is well!

13 Months Topical Steroid Withdrawal

Hey everyone, sorry for my lengthy absence. I'd been holding off on posting because I wanted to show you how my skin had changed for the good... only it hasn't... and yesterday it became its worst.

So the story goes, my eczema was getting worse and worse and actually became weepy in places, and so I suspected infected eczema. I already had an appointment Friday just past to get some more medication, but it was a nurses appointment and I soon found myself sorely disappointed that she couldn't help me. I went to reception and managed to grab a doctor's appointment as an 'urgent extra' and was told to come back in an hours time. I wasn't actually seen for a good hour and 40 minutes after my designated slot, so was rather annoyed that I'd wasted my entire morning waiting at the doctor's... but it was fine as I ended up being prescribed Flucloxacillin antibiotics to help out my skin.

I took 3 of these wonderful tablets and thought no more of it, as I happily drifted off to sleep that night. When I awoke on Saturday morning my eyes were swollen and my entire face puffed up, the eczematous rash that was only in some areas of my body had spread dramatically everywhere. I was worried. What the hell could have brought on an allergic reaction?

I decided to ring NHS 111 to get some advice as I figured the only new thing I had introduced was the antibiotics even though I have taken them a lot in the past. Despite the fact my breathing was unaffected she decided to ring an ambulance crew for me as she was worried that it could indeed be a drug allergy. I went off to hospital in an ambulance and was administered straight away with a cannula... which of course they struggled to get in! My skin was hugely inflamed and my veins completely hidden. They did manage in the end and it hurt. A lot.

I was then assessed by a doctor who was concerned about me and said that my treatment would be a course of oral steroids. I was devastated and worried about the risk of eczema herpeticum, of which we must all be aware by now that these suppressive drugs bring it out on me. He then went away to talk to a dermatologist who then made a plan to still issue me the oral steroids but to give me a back up course of Acyclovir. In the past despite taking a course of Acyclovir I have still ended up with herpeticum, and so I declined.

I could tell he was pissed off with having a difficult patient, so we ended up coming to a compromise that he would just issue me with a different strain of antibiotic and antihistamines BUT I would have to stay in the hospital much longer for observation purposes. I reluctantly agreed as what other choice did I have?

I was whisked off to a ward where I was kept for "observation" for 8 hours. Finally at the end of my stint, a doctor came to see me. He came to the conclusion that I was not suffering from a drug induced allergy but that it was just my eczema playing up. I didn't agree with him but allowed him to bring in the dermatologist who also wanted to assess me. He too agreed that it wasn't an allergy I was suffering from but eczema despite having seen the photo evidence from earlier in the day of my face all swelled and puffed up.

I'm sorry but I certainly do not agree. Eczema doesn't just cause you to have a swollen face! In all my time I have never ever had eczema that has made my face swell LIKE an allergy. Allergy does play a part in it. Oh well these people do get paid a lot of money to dish out the steroids afterall. Which is exactly what he did. I was sent on my way with a prescription for Eumovate to use on my face, Dermovate to use on my body and the Elocon afterwards. No antibiotics any more as they believe I never had infected eczema on Friday despite my weeping skin.

I'm not sure what my next move is going to be. Not steroids. I've come so far without them that it'd be a huge shame to start the whole steroid withdrawal again. But I really don't think my skin is going to fare well on its own.

I'm in a bit of a pickle really.

Oh and that cannula they put in? Yeah they never used it to administer anything. What a bloody waste.

I do still believe I did have an allergic reaction this morning and will be extremely wary of using penicillin in the future.

Me with poor swollen eyes

1yr Post Topical Steroids

So the day has arrived, it has been exactly one whole year since I ceased the usage of topical steroid creams.

Without a doubt it was definitely the right decision to make. My health was rapidly deteriorating and I was just becoming more and more ill with constant infections both of the skin and otherwise, an overwhelming tiredness that would force me to take naps and ever worsening allergies. I was a mess. In fact, it wasn't until August of last year when I discontinued taking immunosuppressants that my body finally stopped being so overwhelmed and my immune system could finally start to function again normally.

What I can conclude over this past year and why I think topical steroid withdrawal is the best thing to do if you realise your skin is addicted and your eczema is so severe that you rely solely on these "magical" creams, is that I am in a much better place than I was. I have had far fewer infections, I don't have the infamous red sleeves any more, my eyebrows have grown back in, less visits to the hospital, the way my face rashes (it doesn't have the appearance of looking fully sun burnt, bar my nose any more but instead tends to be blotchy if anything), being able to get dressed sooner after showering, no need for excessive moisturiser, my heat induced urticaria is a lot better and I can even eat spicy foods now without rashing... the list goes on and on but they are all I can think of right now.

My allergies have diminished dramatically. Despite having lived with cats my entire life, out of the blue I just became massively allergic to them and in just a few months, funnily around the time that I was uptaking my use of steroid creams, my allergies became so severe that within just hours of being in the same house as them I would break out in full body hives and have an acute asthma attack. I would always, always be sent on my way to A&E at the hospital whenever I visited home. Yet now, I can stand to be in the same room as the cats, we're not at picking up and stroking level yet, but I can and have lasted for more than 9 hours in their presence and my skin hasn't flared so ridiculously nor has my asthma been an issue. Remarkable.

I won't lie to you, I'm not in a brilliant place right now. I'm still flaring as I was in my previous post on my face, neck, chest, stomach, hips, arms and inner thighs but my back is pale and smooth, as are my lower legs and feet. I still have scars from the excessive scabbing from my bout of MRSA last year but these are becoming less and less noticable as time goes by.

I am however still able to go to work and get dressed and go out when I need to, but just recently I've been reverting to having some "recovery" days just to help my body along. The stresses of moving to a new city have obviously taken their toll and I am an overly anxious person who worries about every little pointless detail so it isn't any wonder really that I would be having a flare. I do however think my current rash has the appearance of a yeast infection so am taking a course of anti-fungal tablets, just in case, and hopefully this will get rid of it.

I must also make a point of how apologetic I am for not getting round to responding to your comments and emails, believe me I do read each and every one of them and am hugely humbled by your support and knowledge that my blog has helped you, but I just don't seem to have had a great deal of time to reply at present. It is definitely appreciated though and I thank you <3.

Being Busy Topical Steroid Withdrawal

So I've had an extremely busy week this week. On Sunday 23rd Feb we made the 2.5hr journey northbound to visit my family, of which I'm pleased to say I managed to drive all the way there AND back without asking Shane to take over! I haven't been able to do that for a very long time as driving can really take its toll on me. Especially in more recent times where I've been a slave to the itch and unable to concentrate on anything that requires lots of focus.

When arriving at my Mum's house, which was a little bit dusty because she'd just had a new boiler fitted, I found my skin react a little bit to the dust and the cats but my asthma was very controlled. I don't think I took my inhaler at all and I was there for around 7/8 hours. However, when staying at my Uncle's house that night I could not stop wheezing. I was taking my inhaler literally every hour (I know, I know that's improper use) and ended up having to take my steroid inhaler which I haven't needed for well over a year. It really upset me but my asthma was fine the next day so not sure if it may have been a delayed reaction to the dust and the cats or what. Very strange.

The next day we journeyed up to Edinburgh for a couple of days of much needed quality time away from everything. We had such a lovely time and got a lot done, including visits to various museums and even the zoo! My skin took a bit of a beating from the wind and sporadic rain, much to my annoyance, but it was more the fact that it had gone dry due to the weather conditions that I had a flare.

Looking a bit haggard but I was excited really!

I was slightly worried about choosing where we would stay when I initially booked the trip. We don't have a great deal of money so I decided to just book it as cheaply as possible as after all a hotel is only really needed for its bed to sleep in. For this purpose I just decided to go with Travelodge as I know they're budget friendly and generally clean and uniform. However there have been instances where the room hasn't been 100% clean and this worried me a great deal when I was committing to book as I noticed they now allow pets to stay. They do charge extra to allow for the extra cleaning, but as I say, the rooms in previous hotels of theirs haven't always been spotlessly clean so I was a bit concerned but I am getting better so it wouldn't have resulted in a huge reaction, yet as I was trying to avoid such circumstances to make my stay as painless as possible it was a hindrance. For anyone with really severe allergies I probably wouldn't look to stay with them any more.

On the evening that we traveled back to my family I was very hesitant about going back to my Uncle's house because of how my asthma had been the previous stay, but I had nothing to worry about as I slept like a baby. Stupid asthma.

The following day we drove back home with one of my dear friends in tow, who was staying overnight with us so I could finally show her Lincoln. It was a joy to have her stay over, even if I was rather exhausted from gallivanting to Scotland and driving long distance. It might not sound much but when you've been pretty cooped up and housebound for a long time, having such a busy week can take its toll on you, but I am determined to keep the momentum going! In fact I only had yesterday evening to relax as today we are off to see Shane's parents for a race he is running tomorrow. No rest for the wicked!

I also should mention that I managed to share a bed with Shane too which is a huge thing, even if I do scratch a lot and he does breathe loudly through his mouth! Heh.

Hope everyone is doing alright!x

9 Months of Topical Steroid Withdrawal

So today marks 9 months of ceasing topical steroid treatment and about 6 months of completely stopping the use of immunosuppressants.

I'm not gonna lie and say I'm doing fantastically well but I can definitely say that my life is back and I am now able to do so many things that I previously couldn't do. I think my last update is nearly 2 weeks old and in that time my skin has gone backwards and forwards, which is why I didn't really want to collate another post to show you that it has regressed again as it gets pretty boring really. It is comfortable enough to live with and I think that's fine by me, especially going by what I was like this time last year! In fact when I say regression what I mean is my face has gone a bit pink and flaky, my chest and neck have some eczematic parts and my arms are scratched, but my skin is much tougher now so it's not as though I'm sloughing it off with every touch. I should be more grateful really.

So if we look back... showering and getting dressed could take hours and hours, on a bad day I wouldn't even be able to put clothing on! Nowadays however, I can be out of the shower, have a bit of moisturiser on and dressed within 30 mins. Not bloody bad if you ask me! I can also stand to do stuff after I've spent the day at work without having to run headlong for the shower, and even if I do need a shower after work, I'm pretty sure I can be ready to leave the house again shortly after.

Also the way my skin is physically is very different. I was thinking the other day that my skin doesn't peel off in humongous pieces as it used to. It was kind of akin to sun burn peel where you pull a bit and an entire sheet of skin comes off(!), I remember the satisfaction of pulling all of my eyelid skin off in one swift movement. I'm a delight I know. Yet now it's more powdery in formation and isn't quite as joyous I suppose. It's quite dandruff like again.

I'm now off work for 2 weeks to go gallivanting up to Edinburgh for a couple of days and also bypassing my family and the cats on the way there (and back) so it will be interesting to see how I get on.

I do hope that everyone is doing well!x

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!

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!

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!!

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.

Silentnight Double Duvet & Pillow Giveaway!!

Hey guys!

So earlier this year was National Allergy Awareness Week. During this time I was contacted by Smoking Gun PR to see if I would be interested in testing out a brand new Silentnight Hypoallergenic mattress containing a probiotic treatment called Purotex which is fully approved by AllergyUK. Purotex is a 100% natural solution releasing friendly bacteria whilst you sleep to combat the most common allergy triggers, namely dust mites. Read more about Purotex.

How could I say no? Anything that would give me a better night's sleep and stop me grabbing for my inhaler would surely be beneficial. I thought it might help my skin but when I received it was around the time I went into steroid withdrawal so unfortunately I'm unable to vouch for that aspect.

I didn't want to get rid of my other mattress as I'd only had it a year so there's a bit of a Princess and the pea type situation going on.

As a goodwill gesture, because it has notably improved my asthma, they are also giving away a Silentnight Deep Sleep Double sized 13.5 tog Duvet and Pillow Pair for one of you guys to win.

"Luxury Deep Sleep Duvet and Pair of Pillows designed specifically to envelop you with a feeling of warmth, snugness and comfort. With extra hollowfibre filling and with a channel stitched cover for the duvet to keep the filling in its place, a deep sleep comes naturally."

To enter all you have to do is go through the steps of the Rafflecopter below. Leave a comment below (all you have to do is register to blogger, it's free!) & "like" Shane's 1000km Challenge on Facebook. This giveaway is regrettably open to UK readers only.

a Rafflecopter giveaway

Good luck :D