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.

10 Months TSW

Today will mark my 10 month anniversary of ceasing the use of topical steroids. My skin is still crazily up and down, day in day out, hour by hour, but it isn't stopping me from living so I can't complain.

As you saw from my previous post I have been trialing various lotions and potions to see if they make any substantial difference but nothing seems to really improve my condition. My skin is perpetually dry. In fact the other night I had a horrible itch fit where I was bright red and just could not stop the insane itch, which I was thinking must have been induced by an uptake in moisturiser and so the next day I went moisturiser free. It was manageable. I didn't bother taking a shower or washing myself at all and in fact did some exercise too to try to get some sort of oils going. Exercise was fine and the sweat didn't irritate... I was just very smelly by the end of the day!

The next morning however I looked like a porcelain doll who's face had cracked into a thousand and one pieces. The skin had become taught and wanted to come off in large flakes. I showered to help it along but I just couldn't cope because the dry, tight skin was worse to me than the itchy red skin so I caved in to using a tiny amount of moisturiser. I seem to be on the up again, though incredibly flaky but as I say, I can't complain too much.

I haven't had a day off work on the sick since the beginning of September 2013. That's more than 6 months ago! So I can only commend my body for letting me get this far. Sure, it will take time to fully recover and heal, to be able to wear black clothing again, to wear a bit of make-up, and possibly even dye my hair but I have come a hell of a long way in these 10 months.

I have an appointment with my derm nurse in about a week and a half, I know she'll nag me because the skin is still so dry but I haven't been to the hospital now since January 2nd so surely that must say something in its self? I'll also be told off for not taking my medication strictly but I don't feel I need it any more... she says... until the next mega flare... But no, I'm sure I'm fine.

I'm also interested to see what the summer weather will bring. Last summer and every summer prior to my TSW, I practically died from the heat. I was suffering from heat induced urticaria which has definitely lessened more recently. I can stand to be in the kitchen for longer periods cooking food standing over the hob. Sometimes I will overheat but it is a billion times better than it was initially.

Oh I should mention that I also reached 100,000 page views on Sunday just gone and celebrated with a gorgeous pina colada cocktail! No alcohol has touched my lips since August 2012 because I felt it aided my itchiness what with its dehydrating nature, so this was quite the celebration. I can report that I didn't get itchy afterwards and my skin was alright - Yay! I doubt I will be drinking much these days if at all because I am accustomed to it, but it's good to see that I didn't have the adverse affects I've been so cautious about.

So yes, thank you to everyone who has visited, commented and sent me kind words over this last year. Your support means so much <3 and I'm glad I have been able to create a resource that benefits others who also suffer from eczema.

Happy healing!x

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?

Sore, Red, Dry, Itchy and Oozy

In my last post a lady linked me to her video that she had created about her experiences with this "Red Skin Syndrome" that is brought on from Topical Steroid Withdrawal. I was quick to show some of my immediate friends and family as she explains it all so, so well and her story is extremely similar to mine. I also like her comical way of putting the video together. It made it that much more "real" and there's definitely no pussy-footing about (no pun intended Miss Kitty Fantastico!) she gets straight to the point.
So please take the time to watch this, it really is interesting!

In news of how I am today, well I'm not good really. I only woke up at 11:30 which is hugely late for me but the truth is I've been avoiding getting up because it just feels all too raw and painful today. It's all because of last night's antics and frustrations. I came home from work expecting to be able to have a nice relaxing bath and the hot water stopped being hot when I'd only filled a small amount of the tub so sitting there on the bathroom floor in a state of itchy frenzy, with no one to support me I had a bit of a break down. It  took about an extra 40 minutes or so until I could run my bath. 
It will sound beyond trivial to some that I wasn't able to bathe as and when I wanted to but it isn't because I want to, it's because I need to for the sake of my poor skin. If I don't pander to the needs of my skin as soon as I can life just doesn't feel worth living.

Is My Medication The Cause Of My Eczema?

Been doing more thinking about this "red skin syndrome" malarky to try to solve the mysteries of when did this happen, and more importantly, how did this happen?

I was talking on the phone to my Mum regarding when my eczema, asthma and allergies first started. She said my eczema started when I was a child, however she can never remember it being severe in any way, shape or form. It was mostly just sensitive, dry skin to which we stopped using bubble baths and switched to hypoallergenic products.

It was asthma that was most prevalent, often resulting in trips to hospital and taking oral steroids to help return my lungs to a more normalised state. I distinctly remember these times well. I would be at my Nana's house and she would dissolve the nasty little red tablets in some water in the "special medicine glass" to form the most vile pink fluid you will ever taste, which was always far too much for me to neck down, and would always proceed in me gagging. Memories to treasure, huh?

My allergies were also never really that bad. Although I did always have a snuffly nose and would produce more snot than is depicted as normal. Although I do distinctly remember picking up my friends' pet rabbit, and within seconds my eyes swelled shut and I was so itchy and sneezy and my asthma went mental. So never again did I pick up a rabbit. But I do remember going on trips to farms and picking up various animals and never having a problem. Same goes with cats. Misty was around before I was born. So I've always grown up with cats around me. In fact, my brother had gerbils too, to which I never reacted.

 

A face full of make-up, in my "Goth" attire, aged 15. Note the clear, pale skin :(

Fast forward a few years and I would often get small patches of eczema on my inner elbows, my upper lip and sometimes around my eyes. It was an annoyance, yes, but nothing that a bit of E45 and hydrocortisone couldn't help. I'm unsure as to whether my hormones played a part in this or not but I can't figure out what would have been the initial trigger.

Then we come to me aged 16 where I was faced with the awful situation of my Grandfather's funeral and meeting my biological Father for the first time in my life. I don't remember my skin being bad on the train journey down, though I do remember my asthma worsening as we changed trains on London Underground. I just remember the morning of the funeral the entirety of my face, neck, chest and arms were coated in a weeping, swollen rash which was so bloody itchy I couldn't stand it. E45 worsened it and from then on I've avoided it like the plague.

Now whether it was the stress of the situation that brought on the flare, my Grandad's extremely dusty home, the feather duvet's, the woolen carpet, or a combination of these things... I just don't know. It wasn't until the following day I believe, that I was admitted to hospital with an asthma attack. My skin had worsened so much and oozed and was burning and infected, covered in scabs that would just reopen and make me stick to the bed sheets.

It took around 6 months for my skin to return to normal after that, applying a zillion different steroid creams during this period. Then it returned to its "mild" form, not bothering me again for another 3 years. [Although it was during this "resting" period that I developed my heat urticaria. I came out in hives when on holiday in Spain and from then on whenever I got too hot would break out in hives.]

It was then in January of 2009 that it all kicked off again (for reasons I can't quite put my finger on...) and so I returned to using steroids, but this time more potent steroids. I was given oral steroids and antibiotics to prevent my reoccurring infected eczema. Unlike before where it was on my face, neck, chest and arms, it spread down my torso and then down my legs leaving no part of me unscathed.

I assume in the first instance of having eczema that it was down to a severe allergic reaction as why else would it have appeared on my most visible parts? I can only think that it was due to an airborne allergen... possibly the sheer levels of dust? The second time however, I really have no clue.

I have been in the same state since 2009 with only small breaks of respite. As I've mentioned before I've undergone all sorts of treatments, had allergy patch and IgE testing and nothing has really come to light properly, other than my obvious dust and animal allergies.

So could my eczema be a by-product of the steroids? Perhaps it was the steroids that caused me to get eczema to start with if I took them frequently for my asthma troubles. I just don't know and I need some answers soon.

Does anyone else who has suffered from Red Skin Syndrome have severe allergies? I need to help make a distinction I think.

Forever pondering...

Red Skin Syndrome

So today I'm in a state of turmoil and curiosity has finally gotten the better of me. I keep getting hounded by people telling me I have this "red skin syndrome" which to those not in the know, is essentially what happens when you've used steroids for years; your skin becomes addicted and completely dependent on the medication.

The typical symptoms of this are:

1. Red burning skin, hot to the touch, that spreads over the entire body, despite it originating in smaller places with extreme itchiness that cannot be satiated. 
2. Skin that weeps and oozes.
3. Eczema type rashes that spread over the skins surface.
4. Hives/ Urticaria.
5. Difficulty regulating body temperature with freezing hands and feet and you may often suffer all-over body chills.
6. Extremely dry skin that sheds like crazy and needs to be vacuumed daily.
7. The skin is so sensitive that you can become allergic to basically everything.

Now, I'm quite a stubborn person in that when I know I probably wouldn't be able to make something work I'm reluctant to give it a go, however the symptoms are so similar to what I'm going through I'm just at a bit of a loose end.

The only way to stop an addiction is to go cold turkey, no steroids can be administered whatsoever to give the body a chance to recover and cure itself. Many people who undergo this withdrawal find that depending on how long they've taken steroid medication it can take months and even years and years to finally come into remission. They also find that they will need to take a large chunk of time off work because it is virtually impossible to attend.

I'm already fully aware of just how vicious eczema can be as I've spent massive portions of time off from work, university and college in the last few years because my skin is just uncontrollable, inhibiting me from being able to get dressed and even the ability to concentrate. You can see in my archived posts, specifically the ones entitled "Living With Eczema" just what I have had to go through. I'm not sure if I would want to relive all that on a longer term basis because I really have done so much to pull myself out from that pit of depression. I don't want to endure it again.

My only problem is it's been bad enough to try to rebuild my sick record from having all the time off. My employers know the extent of what I go through but I just wouldn't be able to function without my job. Shane and I struggle enough to pay our bills as it is with barely a penny left over to enjoy ourselves, so without a job we'd be in short, screwed.

So this is why I'm in a state of turmoil. I'm not sure I would be able to give steroid withdrawal my full commitment, and I definitely wouldn't be able to give up my steroid inhaler, but I must say that it does seem likely that it is what I have.

At the moment there are only a couple of doctors who believe in it (based in America I think...) and I have mentioned it to my dermatologist in the past but he's just shaken it off. It is only a recent finding so I'm not too sure on the credibility, though no doubt I'll get loads of you telling me that it does work. Yet, if this were the case, why don't more doctors believe in it?

You can read more about it here.


Images of Kelly Palace, before and after, pinched from the ITSAN website.

Summer Days: Eczema (Warning: Deep Post)

So the sun is shining, the last couple of days have been serene and beautiful... but I'm not allowed to enjoy it... according to my skin anyway!

I envy those people who's eczema gets better in the sun shine weather. Mine just gets worse and worse. Everything about the sunny weather just destroys me. The heat is too much that I get itchy and irritable and come out in hives; the abundance of UV rays means high factor sun cream which dries out my poor skin; not to mention the emergence of insects that act as irritants! It's bad enough to near-constantly feel as though I have millions of tiny insects crawling all over my body, but to have it actually happen makes that sensation all the worse!

I find myself tearing my poor skin to shreds because I just cannot get comfortable. Summer is literally hell on earth for me but I wish it wasn't. I want nothing more than to enjoy soaking some of the sun up through my Vitamin D deficient skin but those times are just distant memories, what with now taking immunosuppressants that make the risks of getting the likes of skin cancer that much greater.

I yearn for my youth for when I could paddle in the sea on a summers day, without feeling the sheer agony of sea salt driving itself into fresh wounds; for reading a good book in the sun trap that is the garden; for going on sun lit adventures; and most earnestly to just feel god damn comfortable in my own sodding skin.

I miss being normal.

I think that's what makes it worse for me. I've always had eczema but I've never suffered from it as much as I suffer now. It was always manageable and easy to rectify. Life gave me a taste of what it is to live but I have so many regrets that I've taken the life I had prior to this for granted. I'll never get back these past few years of my "prime" where I could have really made something for myself. We are only on this earth for a blink of an eye after all.

In short: you can't miss what you've never had, but if you were lucky enough to experience life beforehand make the bloody most of it. Life is too short.

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. :)

Reaching A Mile Stone: & How I Feel Today

Wow guys I've finally hit 3,500 views and it's only been 6 weeks. Thanks for coming to visit and please do share my blog around if you think it could benefit or even educate someone else :)

After a reasonably good day yesterday my eczema has decided to do that thing where it just randomly goes bad, swells, itches and weeps. I woke up this morning with my eyes swollen and massively encrusted in dry yellow weepy skin - yummy! But once again have no idea what to pinpoint as the culprit as I did have a reasonably good day yesterday and didn't eat anything out of the ordinary.

Today I'm having a recovery day, applying copious amounts of moisturiser, guzzling antihistamines and have pleaded with another colleague to cover my shift. He's such a star <3 but of course as I explained in my last post, means that I am losing out on money much needed. Never mind.

Check out this video I found on Youtube relating to allergies. It's so relatable and made me laugh xD

Have You Tried This, Have You Tried That

I know people are trying to be helpful but it becomes tiresome to keep reiterating myself to various different people. That was also the idea behind creating this blog so that I could just let people read for themselves about my condition.

My favourite is when random strangers ask you if you've tried [insert name of over the counter medicines] and when you sigh and say yes the smug look they beheld vanishes. Often these same people will be the ones who go "I know what that is, it's eczema" and you're like "yes, well done! Have a pat on the back, matey!" As I say, I know they're just trying to be helpful but it really isn't helpful for me. It's comparable to telling a person missing a limb that they're missing said limb. 10/10 for observation ;)

From this, I thought I'd talk about some of the conditions I do have and how they can sometimes conflict one another.

OK, so as the name of the blog suggests, I suffer from eczema. But not just one type, oh no, that would just be too simple for my body. No. I have a whole host of dermatitis conditions. I suffer from atopic eczema which as it suggests means I in turn suffer from atopy in general. Everything from hay fever to asthma to rhinitis comes under this heading.

I also have urticaria which manifests itself when heat is involved. This means exercise is usually out of the question, as well as being too hot generally whereby that meaning having too many layers of clothing on, or even on a summers day, I will, and do, suffer. It means for me that hot countries are completely out of the question. I went to Spain with my Mother one July and spent the whole time in sheer agony, covered in hives and not being able to get cool. It was a nightmare. Similarly, going to the gym and even walking up steep hill in Lincoln is somewhat of a task for me, whether it's a winter or summer's day because the heat will get me.

Allergies are another one of my pitfalls. I am severely allergic to dust mites. So much in fact that a proper reading couldn't be given because it was so high. This means that I find even household cleaning a chore and was even given a certificate by my dermatologist to say that I'm not allowed to do any household cleaning for 1 year. Jealous much? My asthma worsens and I come out in a rash, which then turns into eczema because I scratch it so much. It has also meant that I have had to reassess my career choice. My plan was to become a textile conservator, where I would clean and prevent long term damage to historical objects... Yes. You can see where this is going...

Cats, dogs and in fact any fur bearing animals are also out of bounds with my allergies. Annoyingly enough, I grew up with cats and looking back I did have a constant runny nose but that was all. Now, if I were to go to my Mum's house I would end up in A&E with an all-over body rash, an asthma attack and swollen eyes. It usually weeps too. Yum.

Patch testing also revealed an allergy to chromate but I don't appear to have had any problems with sitting on leather couches or wearing a leather jacket so I'm a bit skeptical. But it would make sense in terms of being a green dye within textiles, as I suffered A LOT when making a dark green dress for my Foundation Art year. I'm bloody proud of my efforts though!


Modelled by my lovely friend
Seborrheic dermatitis is another one. A lovely flakey one. And more recently I've developed hand eczema also known as dyshidrotic eczema. Apart from the soles of my feet, there is not one place that hasn't been affected by eczema. I also have Neurodermatitis in which I scratch all the time just because it has become a habit.

And as you can see from some of these conflicting conditions, it can make it hard to treat. I have found that steroid creams and slathering white soft paraffin all over is my best concoction to date. It REALLY helps me. Also sleep helps me too oddly enough. Even if it's just napping.


I hope this gives you all some more insight into some of what I go through. I could talk about it all day so I'll be sure to post about my coping mechanisms at a later date :)