Topical Steroid Withdrawal

So I haven't applied any steroid creams since Saturday 18th when I was in a bad way with the hot water not coming on when I was in my state of desperation. Eventually after I'd had my bath I liberally applied Hydrocortisone ointment as if my life depended on it. It hasn't  been an intentional thing as such to cease usage, but there is the niggling in the back of my mind that they are likely to be the source of all evil. 

However, since this time my skin hasn't really improved at all. Like I mentioned in my post prior to the Bake Sale, my skin has been going through all sorts, never following the usual pattern of red, weep then flake. Instead it has been doing all these things either at the same time or in whatever random order it feels like doing it. As you can imagine, this has resulted in me whinging and feeling like crap and the need to nap and generally relax. 

I also think I have a viral infection on my torso. Whether it is from the antibiotics I took, I have no idea but it's getting on my nerves as every part of me seems to have something wrong with the skin. My arms and back are dry and flaking, with deep gouges and scratches from attacking myself in my sleep; my face and ears are a mixture of weeping, red, dry and flaking skin, and in fact felt as though I had been stabbed in the face hundreds of times when I woke up yesterday morning... The backs of my knees are also awful but I'm putting it down to being overheated, and my thighs are also pretty bad right now. 

excuse my flabby tummy. I appear to have put on a bit of podge ;)

Backs of legs

Front of thighs

I'm fed up of the sight of my skin flakes every where and the constant hoovering. It just brings it all back to the old days. I feel bad for Shane that I'm having to depend so heavily on him just so that I can function and get through the day. I can see how much stress I add to his life and I just wish he didn't have to carry out this additional burden, given how much else he has to attain to. 

I'm seeing my derm on Friday so hopefully he decided to do some background reading... I am thinking about possibly giving Ciclosporin another go whilst I go steroid-free, though I am wary of it working for me as it didn't the second time round. We'll see.

Hope everyone else is doing good?x

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...

Same Old Itchy Story

After having had a couple of manageable days after such a long stretch of bad ones, I'm in a bad way again. I have no idea what has caused the flare this time but I do know that it came on at about 10pm last night. The right hand side of my face went bright red and so, so itchy. I smothered myself in emollient ointment, white soft paraffin, took an antihistamine and off to bed I went. I woke up after an hour of not so deep sleep to find my face to be soaking wet. It was absolutely drenched with weeping skin. Mmmm. I was so tired that I just took a tissue and stuck it to the entire area so that it would absorb to the tissue and not my pillow. This morning I've woken up and my face is a bit grim. So yeah, not sure what to pinpoint as the culprit... and this is how it always is. I make diaries to document things I've done/ become exposed to, food I've eaten and my mood but there never seems to be a pattern. :(


 
 

Haha excuse the state of my hair. There's bed hair then there's my hair. Mental.

Living With Eczema: Part 2

The thing that people don't seem to realise with eczema is that it really can be so severe that it is classed as a disability.

In my individual case, my skin gets so sore and weepy that I can't put clothing on because it just makes it all the more worse, in both the sense of heat, and also because it irritates and dries out my skin further. When the skin weeps it often dries with fibres stuck inside it, which is not exactly helpful to the wounds to have a foreign body lodged within them. So I find my best way to deal with a bad flare is to just spend the day being naked. This itself causes a whole array of problems with health and safety and the fact that I cannot leave the house, or generally carry out day-to-day activities. Walking about can also be difficult if it is bad on the backs of my knees and bending down and such is even worse.

It isn't just because of the fact that I need to remain naked that it causes problems. When I am in such a bad state (you must have seen videos of little children on Youtube crying because of the itching and pain) I am going through the exact same thing. I am in torment because of the itching and pain as at the time there is just no escape, once it has you in its grips, it has you good. It means I am unable to summon the will or the physical ability to do anything because it has such a hold over me. Now for many people who simply say, just don't scratch, or whatever... it just isn't that simple at all.

From what I can assume, and from how others have described how they think it is, a lot of people have the belief that it must be similar to a rash, or insect bite where you can't stop scratching it. In a way yes, it is like this, but at the same time it's so much more complex. Firstly, the itch isn't confined to just one area, it spreads like wildfire all over your body. Secondly, their scratching usually won't cause deep gouges, scratch marks, weeping skin or scabs; it will just remain as a red rash.

The other thing people, friends, acquaintances, even close friends, do not realise is how long it will actually take for me to get up and ready. I know I touched on this briefly in Part 1 but I didn't go into its full extent as much as I intended to. A day where I know I will have work, for example a 5pm-9pm shift, will have me waking up at around 8am, showering and spending the entire day slathering myself in moisturiser just so I know I can be comfortable in my clothing. That is an entire day completely wasted because of my extremely necessary routines which is incredibly scary to think about.

Coming home from work is no different. As soon as I walk through the door I'm in the shower, spending a large amount of time just laying in the bath tub trying to relax myself. I then cover myself in moisturiser for the rest of the evening and turn in for bed. The next day is either usually spent carrying out the exact same routine, or as a recovery day, where I will spend the day trying to preen my skin to a comfortable state for work the following day.

It ain't a good way to live, but it's how I have to live unfortunately. The days where I have to quickly carry out my routine are the days where I definitely pay for it later on. I generally end up spending days and days trying to recover again.

So there you have it. Those who don't have eczema or a chronic illness may consider yourselves so lucky that you are able to work a full time job and balance your busy social and family life. I know that I took it all for granted at the times when I was well enough.

x