26.5 Months TSW

Just a quick update from me! I'm still in my plateau at the moment. My skin isn't perfect but nor is it really troubling me. I flare from time to time but it has been mostly manageable.

Whether it be a case of the fact that I'm still on Ciclosporin, or purely just coincidence, the summer heat has been much more tolerable and easier to endure this year, though I do actively avoid getting hot and bothered just in case I induce an unwanted reaction.

Yesterday I came back from a few days away staying at a hotel and don't seem to have caused much damage to myself. Usually I end up scratching myself to bits when I stay elsewhere - whether this is down to a different environment or just something in my mind I don't know but I left unscathed and didn't keep the boyfriend up all night with my violent scratching episodes.

I do still have areas of blotchiness/redness but they really don't bother me right now. I just wish I could wear make up without the fear of my skin reacting.

Here are a couple of random unflattering photos I took in the car.

I do hope everyone else is doing good.

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

Topical Steroid Withdrawal: Allergies

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

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

My Mum's beautiful mogs

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

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

Recently all this has changed.

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

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


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

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

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

See! I never used to be so allergic

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

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

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

The fluffiest of mogs! (Image courtesy of The Retired Bridgeburner)

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

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

I truly do.

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!

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!!

Day 102 - The MRSA Rages On...

I think the MRSA has reared its ugly head again, or I've gone and got myself yet another infection.

I woke up fine yesterday morning, we did our raffle at 2:30 in the afternoon (well done to all the winners!), all was fine until 3pm when we went to leave for Shane's race and I just started feeling icky and itchy all over. An hour later I'm covered from head to toe in a pimply rash. Literally head to toe. Last night I took a recommended bleach bath hoping that would kill some of it off but it's even worse today.

I've been feeling feverish, and even a bath wouldn't warm me up until I filled it with scalding water. I've also been more asleep than awake today. Not good at all. Gonna pop along to my favourite place on earth tomorrow (hospital) to see what can be done. I think with MRSA you're supposed to continue taking the antibiotics until all sign of infection has gone, which despite looking good, it hadn't really... I was only given a 2 week course.

All I can smell is the acrid stench of ooze as though my body is rotting. I feel dreadful. :(

Sorry for not taking any close-up pictures of the pimples themselves but after my arm started literally dripping with ooze I ran up for a bath.

  Holding the tissue as I was trying to dab some of the oozing areas Ankle looks worrying again    Weeping knee and sexy skin... Gonna put the next ones under a cut: NSFW

Day 97 of Topical Steroid Withdrawal

Didn't mean to let a week go past before updating my blog! I was going to wait until Day 100 of my steroid withdrawal which will be this Friday but I thought that might be a bit too long without a post.

I'm doing pretty well. There haven't been any ill effects from what happened last week and I've been going to work, fulfilling my contracted shifts and then some (an extra half an hour here and there) so I'm hoping and praying that my string of bad luck is letting up and I'm able to have some respite. My skin is still frankly a complete mess, I'm covered in scratches, my legs are scabbed and still suffering from the MRSA but they're a lot better than they were and I've paled quite a lot. My skin is really dry and has loads of shedding to do but that's all part and parcel of the healing process.


  My ankle keeps scabbing and I keep picking...   This only started over the past couple of nights. I've been scratching my thighs and scabbing is the result. Must file my nails again.   I have a lot of deep gouges like this. Hello saggy armpit - lol what the hell?!   My right arm is a bit of a mess. I look like I've been mauled by a cat! More of my right arm/hand. It is feeling easier to tolerate though so fingers crossed! I've had a good few days of relaxing with friends and forgetting about my problems which has been so beneficial to my state of mind. Good times are definitely what I've been needing! Don't forget Shane's raffle is drawn this weekend, which will be my Day 101 of withdrawal so if you're fairly local why not celebrate with me by purchasing a raffle ticket? Otherwise why not donate £1 or 2. It's for a good cause afterall and will cheer both of us up after our hellish few weeks. Help Shane reach half his pledged total - he's so close now!