3yrs Topical Steroid Withdrawal

Hey everyone!

Today marks my 3 year milestone of ceasing the use of topical steroids and other steroidal treatments. I won't say I'm healed... not by any means. But I am able to live life comfortably again and without much disruption.

My face and neck area are still my most problematic areas but they have been since the age of about 16. They were also the areas where I used the most creams and ointments so it makes sense really for it still to be over-sensitive and quick to react to potential triggers and allergens.

I'm still on Ciclosporin but I've dropped my dosage to 250mg, down from 350mg, and though my skin hasn't completely cleared up, as it did the very first time I used it, it's still helping me on the days where I do struggle.

I also had a cold sore this past week and decided not to take as much Aciclovir as I usually do, just to test the waters and see if it would spread and turn into eczema herpeticum. Luckily my prayers were answered and it didn't spread at all from my lip. It did however take longer to heal and I kept managing to knock off the scab, but my body finally seems to be helping itself out. My vegan diet still isn't perfect and there are still refined foods in there but I am choosing more whole food options where I can.

I've also started to exercise! This was a huge problem for me for years before I even discovered TSW. I mean I've never been into exercise as I was the fat, unfit kid at school who was self conscious and didn't care for getting hot and sweaty and then having to traipse around for the rest of the day feeling disgusting... but it got to a point where my skin just couldn't handle sweat. I had heat urticaria and it would sting, burn and itch like hell if I so much as became slightly too warm. So I'm pleased to say I can now sweat and do exercise. My skin does suffer sometimes, for example when I go out for a run, the elements are not usually in my favour and I find that the wind can cause my skin to flare and I then spend the next few days with a red blotchy face. This also seems to occur when I go to the gym and I'm wondering if the cause is because I'm being exposed to other people's skin bacteria? However exercising at home then jumping straight into the shower seems to be mostly fine for me. I'm hoping to improve on my skin tolerance the more I do it.

At the beginning of this whole saga, you may or may not remember that I became extremely allergic to cats, despite having grown up with them. This allergy has now diminished drastically and I don't think it's a coincidence that the lack of steroids has helped to rebuild and repair my broken skin barrier that was making me more susceptible to allergic reactions. I'm hoping in the not so distant future that I'll be able to get a cat. More time and exposure is required though me thinks.

Another thing that has happened, that I've talked about before - 3 years ago I had reached a point where I struggled to work my part time job. I struggled to put clothing on, let alone the ability to actually leave the house! I was a complete and utter mess. In July last year I built up my hours to 30 per week. In September I had upped them to 36 and I have managed to work a full time job without a skin sick day for well over a year now. It's staggering to see just how far I have managed to come. I no longer ooze. I believe the last time I had ooze was over a year ago too and that was actually because I had an infection.

This time in 2 weeks I will be at a festival in another country that is significantly hotter in temperature. I could only have dreamed of doing that this time 3 years ago, and finally it can be a reality. I am scared that my skin will relapse but I'll arm myself with antihistamines and the like, wear cooling clothing etc. and just have a bloody good time. I do deserve it after all. I'm not camping though. I think those days of being a smelly mess out of choice are well and truly over. No, we will be living it up in a 4* hotel, so if I do relapse then I'll have comfort. It is truly wondrous though to see how far my skin has come. When the weather became hotter here in the summer I struggled so much with my urticaria but thankfully now it seems to be something of the past. I can also eat spicy food now, stand in front of the cooker with the hobs blaring, and even wear layers of clothing! Miraculous!  

I also generally have more energy - whether this is due to my vegan diet, my uptake of exercise or my body finally having a break from healing my skin, I can't say. But it's bloody good stuff. My hair has also gotten thicker. Back in January 2012 I took Methotrexate which resulted in the loss of my already fine hair which I put down to having scalp eczema. Right now it is the thickest it has been for a long time, though of course my hair has never been massively thick, but I'm no longer embarrassed for having the skinniest pony tail in the world.

I can't remember when I last had to hoover my bed. I used to have to hoover it every single day, multiple times a day, as well as lay on towels to stop the ooze from staining my bed sheets; soak off dried oozy tissues that had hardened onto my face; constantly endure the metallic and pungent rotting aroma of the ooze; the sleepless nights; running a bath at 3am and spending the next 6hrs topping up the water and falling asleep in it just to get some respite... I'm so glad those days are behind me.

Some photographs from my skin hell journey over these past years:

 PRE-TSW

Weird triangle-nose face rash

Weird rash on thigh

Bruising on thigh from over-scratching

Same as 1st image but a different day

DURING TSW

Allergic reaction to staying round mum's with the cats

All greased up with my arms covered to stop scratching and ooze, and red rashes on thighs

A mixture of TSW/ MRSA/ Elephant skin

Swollen eye

During MRSA/ TSW period

The result of bad skin and skin picking compulsion (dermatillomania)

Rash

Eczema herpeticum and Cellulitis of the eye

Red sleeve 

MRSA/ TSW

Ooze

Leg sleeve

Development of Pompholyx

Tummy rash

Skin flakes

More flakes

Tight, hardened ooze and raw open wounds

Thigh rash

The tissue nightmare of constant ooze

Elephant skin

2014 - Thin hair

I have faith that my skin will get ever stronger. I fully accept that it will take years and that I may never truly heal because of the extensive damage that I have bestowed upon my skin, thanks to doctors and dermatologists who have misdirected me in terms of usage safety, but I will get there.

Hope everyone else isn't suffering too much. Happy healing!

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

Rambling Ramble: 5 Months TSW

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

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

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

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

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

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

xx

Month 4: Noticeable Improvement

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

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

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

Full length image. Yay looking pretty pale.

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

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

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

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

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

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

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

Happy healing everyone!

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

All The Cake

Wow. What a fantastic day today has been!

The sun has been shining, putting us all in a lovely mood which has been absolutely brilliant for the Bake Sale we held today to help promote Shane's 1000km Challenge in order to raise money for the National Eczema Society. We made a whopping £152.72 which couldn't have been achieved without the help of others donating their baked goods - so a big thank you to everyone who has taken part - we are incredibly grateful for your support!

The layout of this table changed a lot over the 6hrs we were there, including further cake donations!

It was also lovely to see a turn out of other eczema sufferers and to have a chat about our conditions sharing our tales of both woe and hope. I'm just so pleased that people have taken an interest in our cause as eczema as a condition tends to go unrecognised in the wider scheme of charities, especially given its debilitating nature in a large number of individuals.

My friend pictured above, Hannah, who blogs over at The Retired Bridgeburner, came to stay overnight to help us man the bake sale. It's been lovely having her here and I am beyond grateful for her assistance and indeed putting up with me complaining about being extremely itchy and flaky ;) Come back soon, Hannah! She is a huge tea and cake fiend like us, so of course despite being surrounded by cakes for a bake sale we had to bake some for ourselves! We also had to have a trip to Bunty's Tea Room which was a pleasure as always. People who have never been to Lincoln should always go to Bunty's as it is a part of the city experience! 

RUNNING FOR A CURE - Charity

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

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

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

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

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

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

Don't Let Them Bring You Down

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

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

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

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

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

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

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

I'm just a little flakey

Just thought I'd show you all what I've been contending with for these past few mornings. Delicious flakes. Mmmm!


 
And a beautiful close-up...

 
"Oooh that's a keeper!" I think Gold Member from Austin Powers would be having a field day.

Eczema and Beauty Products

Following on from my previous post I thought I'd talk about beauty luxuries that people without skin conditions take very much for granted. This was provoked by someone underlining some of the things they themselves have had to give up, and a lot of the things I, myself have never actually been able to use or very seldom use.

Make-up, perfumes, nice smelling beauty products including bath bombs, shower gel, bubble bath, shampoo/ conditioner etc. etc. are all things that people generally spend so much money on as a means to make themselves feel good. Most of the products listed are my body's idea of hell, especially if applied directly to the skin. In the past I have been able to get away with some brands of make-up and still use some of them now, providing it's just on the eyelashes/ eyebrow area but as I said in my previous post, my skin burns and weeps now if I try to apply some of the products I used to use. Perfume is another one I try to get away with as it just smells lovely. Instead of applying to the skin I will just spray it from a very close proximity onto my clothing.

The other things such as bubble baths, bath bombs, shower gels etc. are things I've pretty much never experienced because I know the effect they will have. Well, other than using "Matey" bubble bath as a small child but my mum realised it was pretty rotten to my skin so that ceased instantly. People used to find it weird when I said all I washed with was water but in truth that is all that was acceptable for my skin. Nowadays I will use Hydromol as an additive either slathered on in the shower or put into a bath as an aid to my drier than dry skin.

Shampoo and conditioner can also be a nightmare just to those with sensitive skin, so you can perhaps imagine just how bad they would be for an eczema sufferer, especially with added ingredients such as lanolin (also found in many other beauty products) which derives from sheep, a notorious allergen for sufferers. The only brands I've been able to use in my life are Vosene, L'Oreal and Pantene Pro V. The likes of Fructis and Head and Shoulders have had such an adverse affect that I would never contemplate using them again, even if the ingredients have probably changed within the last 15 years! Better to stick with the safe ones if you manage to find them!

It is frustrating also when someone who doesn't know you well buys you one of the above as a gift and for fear of being ungrateful you just have to accept it and give it to someone else. Nowadays if I have a Secret Santa or whatever I'll tell whoever is organising it to tell my Santa not to bother buying them. Better than having a wasted gift though isn't it?

I do sometimes see beautifully made-up people and wish I could have what they have. Nice skin, being the bottom line. So that I can wear make-up to enhance my features, smell nice and truly feel indulgent.  My idea of 'indulgence' is to lay in the bath tub with the shower on my feet and to just relax and smother myself in Hydromol, but this isn't really indulgence, rather than something I have to carry out every day just to cope and survive.

How do you indulge yourself?

Edit: I would only use different products if I was having a prolonged flare-free period, yet as it has been more than 6 months since my last 'clearer skin episode' I dare not use anything that could make my current situation worse. But thank you for your given suggestions, I may try them in the future! :)