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Monday, 29 July 2013

Too Much Too Soon?

This weekend my dear old Mum came to visit to keep me company. Was so lovely to see her, I just wish I could have been in better health. She accompanied me on Friday for my hospital visit which went well as my skin looked brilliant and they were happy with my improvement. They'd like me to undergo some more patch testing in a few weeks time as apparently I was only given a standard test before. I didn't have the heart to tell them that during TSW patch testing isn't always conclusive but hey ho.

I definitely overdid it though... considering over the past week I've not left the house and only days ago was pretty much unable to get out of the bath. Not to mention the lack of sleep and the like. We went to the hospital, followed by a food shop and my skin definitely hated me for it. I had to run straight into the shower when we got back home to give back a bit of lost moisture. We went out again later for some food and I think the abundance of sun exposure was my downfall. That evening my face got very itchy and oozed profusely in the night. I did however get a decent sleep though believe it or not! First full night in about 3 or 4 weeks!

The next morning my face was blotchy but not as bad as it had been. I stupidly decided we should go to Meadowhall for a shopping trip as I figured being indoors it would be alright. I forgot to bare in mind that it takes 1 and a half hours each way and being a Saturday it would be busy. Whoops. We left the house at 8:50am and got back in at around 6:40pm. A mega day out and definitely over-ambitious. I kept falling asleep on the train and struggled to stay awake during the film we decided to watch when we got back.

I did however have a brilliant night's sleep that night and in fact spent most of yesterday falling asleep too, sleeping for hours at a time. I guess my body definitely needed it!

Tonight I'm back at work and next week is the mighty Bloodstock Open Air festival. Let's just hope that sleep is a healer and I can build up my tolerance for going out.

& Don't forget to enter my giveaway Silentnight hypoallergenic duvet and pillow set

Wednesday, 24 July 2013

Do or Die.

I want to thank everyone for your kind words and support <3 it really does mean the world to me! I appreciate and wholly value all the comments and messages you send to me, even if I am a bit slack at replying - sorry! :(


So literally an hour after writing my last post I decided I had better go to the hospital as my legs had turned bright purple and were cold to the touch which scared me as I thought my veins must have packed in! When I got there I ended up seeing a dermatologist I've never had the pleasure of meeting before. Basically she told me that my skin was akin to that of a burns victim and if she could she'd admit me there and then. She said I would die if I didn't get to grips with my treatment as I would lose heat and fluid rapidly through my skin. Being told you'll die if you don't use topical steroids? Just what you want to hear! Not.

She then gave me an ultimatum: I use topical steroids or oral steroids. No and no thank you very much. She said because I'd been scratching myself silly my skin had thickened so the TS wouldn't have a thinning effect... erm excuse me but can you actually see my skin? It is so thin that the slightest touch/ graze makes it pour with ooze and bleed. Yes, areas such as my inner elbows may be thicker but the rest of it certainly isn't! Oral steroids are definitely a no go as they result in herpeticum. The only other option I was given was to go back on Ciclosporin which I was reluctant to do as last time I ended up in hospital after a week of taking it with said herpeticum.

I was told to think about it over night and to see my own consultant in the morning. It was pretty much the same fight when I went to see her yesterday. She said she'd read all the articles on Red Skin Syndrome and didn't find them very credible. To which I retorted that there are support groups with rather a lot of users all going through this very same hell, and I've witnessed people come out the end of it cured. She was having none of it though.

I ended up coming out with Ciclosporin and a higher maintenance dosage of Aciclovir to prevent the herpeticum. She also gave me a drug called Plaquenil, primarily used for malaria patients but has shown to improve inflammation in the skin, which after having read the side effects... just no. I've never heard of a drug with the ability to change your hair colour before... what the hell?! It also lists serious risks like eye problems and even heart attacks as a common side effect if you accidently take too many. No. I was also fobbed off with a topical steroid - Cutivate which she assured me was fine to use because it is one of the newer types and has less side effects. A quick Google search revealed that it is a Class 3 potent steroid (out of 7 classes) and she wanted me to wet wrap it! HA! No!!

Anyway, I've woken up today and had a mass shed and my skin inflammation has calmed down a little. I can only attribute this to the Ciclosporin which I've only taken 3 doses of so far. I see my derm again on Friday so I hope my skin has returned to a healthier state so that we don't end up having a stand off over me not having used the topical steroid.

Fingers crossed eh?


Edit:

Just to prove how awesome Ciclosporin can be... in only 2 doses

1st image taken yesterday with flash, 2nd yesterday without flash, 3rd today

Monday, 22 July 2013

Red Skin Syndrome Journey - 2 months

Currently on a downwards spiral. It just isn't improving at all. The majority of this weekend has been spent soaking in the bath as I just can't stand the itchiness that ensues merely an hour or so after I get out. My glands are more swollen than ever and the full body oozing is constant now. Sometimes I am able to pass out from exhaustion but other times I'm tormented by the itch and the ooze...

Outside I can hear birds chirping, kids playing and music being blasted out whilst people make the most of this rare opportunity of sunshine which doesn't last very long here in the UK. I'm sat with blinds closed to ensure that the neighbours don't get a peak at my raw nakedness. Raw being the operative word really.

This morning I got in touch with my GP who has prescribed me a higher dosage of the antibiotics I've just tapered down on from my hospital stay. Not really happy about this as I'm sure they would be at least working in some way against the spread, but she didn't want to prescribe me any alternatives. Ho hum. We also talked through my medication as there is a lot that seems to be missing from my repeat prescriptions and she wasn't phased at all when I told her I was no longer taking the steroids. Wow. At least they're off the repeat now anyway.

I'll put a cut in for the photographs I just took because they might be a bit embarrassing for people who know me in person. I'm not ashamed of my body though and these are strictly to show people the suffering I am enduring.

NSFW


Saturday, 20 July 2013

Bit of a rant

Being ill is so tiring. I'm just getting worse and worse :(

Sadly Shane left yesterday to go to his sister's for a race tomorrow towards his 1000km Challenge. I thought I could cope but I really can't.

I tried Sudocrem on my weepy legs after being told that it was good to stop the ooze as it's an astringent which helps to dry up secretions. Unfortunately it seems to have made the ooze worse. Just my sodding luck. However I am slightly worried after examining my legs where the ooze is at its worst... there appear to be bumps or palpules under the skin's surface and I'm terrified that it might be eczema herpeticum. I'm taking Aciclovir so it wouldn't be able to fully fledge itself and I've been so, so excruciatingly itchy that it has made me pause for thought; is it the result of over-scratched skin or the dreaded EH?...

I'll be going to the dermatology department on Monday morning for sure to get some guidance about it. I'll also require a sick note from my GP as I just can't go on like this. I went to work yesterday and only managed to last 2 and a half hours before putting my hands up and admitting my defeat. It's just too damn hard right now. With the constant bathing and showering, moisturising, heat and lack of sleep. I really am at my wits end.

Does anyone else find that when they moisturise so much it then makes the skin flake off into greasy balls which then makes you itchier than ever? It's a tough decision to make; do I dry up like a prune and experience itchy, flaky skin, or do I moisturise the problem and end up with greasy, flaky, itchy skin? The answer seems obvious but I just wish the itch would go away.

Wednesday, 17 July 2013

Exhausted.

I'm absolutely exhausted, both physically and mentally. It's all becoming a bit too much to bare right now.

The past week has been such a challenging one; constant moisturising throughout the day to better my skin, to have all my hard work undone in less than an hour of sleeping. I give up. I'm defeated. My skin is weeping incessantly. It started on my neck, chest and face, as is its wont, but has since spread to my legs, arms and now my back and tummy. Literal full body weeping. I've been a bit concerned regarding my legs because they look worse than they ever have but I don't think there's any infection present as the areas aren't burning hot as they would be typically. I think this is just a side effect relating to the TSW but it's really wearing me down.

I wish I could induce myself into a coma for the next couple of weeks just to get some decent sleep and not have to constantly pack my body with tissue to stop the ooze. The heat obviously isn't helping matters either.

Photos are a little on the sparse side this week, which you'll agree is very unlike me! I've just been too consumed with the itch and the ooze to even want to take photos. So these are from the last fortnight.

 
1. Classic red skin vs. white palms. They were far redder than pic shows
2. Morning mayhem - look at all that tissue in the bin! (and floor...)
   
3. "Elephant" skin
4. Purple leg due to scratching

5. Donning my Dreamskin head mask.

All I can smell right now is ooze and it's driving me crazy. The smell is truly awful. It reminds me of rotting. Bork.

The Dreamskin mask isn't doing anything for me at the moment. It's supposed to help regulate your body temperature and help to heal by relieving itching and improving skin hydration but because I'm oozing so profusely it just ends up binding itself to my face.

I keep going through phases on a night time wondering if being fully clothed would be better or if being naked would work more in my favour. Neither seem to show any improvement, though at least when naked my clothes don't stick to me and get coated in smelly ooze. I am going through towels like crazy though. A large and small one for after my shower, one on the couch, occasionally one between my legs to help stop itchiness when I'm laying down, one on my bed on a night time. Wash, wash, wash. Ooze, ooze, ooze. Cry, cry, cry.

Saturday, 13 July 2013

Silentnight Double Duvet & Pillow Giveaway!!

Hey guys!

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

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

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



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



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


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



Good luck :D

Wednesday, 10 July 2013

Festivals & Topical Steroid Withdrawal

So in just 4 weeks time Catton Hall in Derbyshire will be making it's fields accessible to thousands upon thousands of heavy metal music lovers - myself included. However despite having attended since 2006 this is the first time in my life that it may in fact be an impossible feat.

In previous years, although my skin has been horrific, I've still at least been able to manage the whole weekend. This year however, I am hoping and praying that I'll even be able to attend. After the year I've had I think I deserve just a little bit of happiness.


Me last August, the very last time I had a good skin phase...

At the moment I'm having a hard enough time just trying to get dressed to leave the house to go to work or hospital, let alone having the capability to hang out at a 4 day festival. I've taken many precautions though, as I did last year, but will have to be much more thorough in imparting my words of wisdom to myself this time round.

Last year we managed to bag a hotel about a 25 minute drive away from the festival site which seemed to work for us as my camping days are seriously over. This year, we've managed to do better still and bagged ourselves a hotel which is literally 5 minutes from the site. I'm sure the short drive will be a god send if I cannot take it any longer and need to submit to the shower.

I'm also on the look out for a more appropriate hat to shelter myself away from the over powering sun. Hilarity ensues...


I know it's a festival, but just no. Haha!

I will also need to find a skin-friendly sun cream as I'm having a hard time applying anything that isn't paraffin based right now. Also fully covering myself up is not really a feasible option if the weather is how it has been this past week. I'm one of those eczema people that cannot bare for my skin to be covered up or it makes me feel even worse, especially in the heat we've had and with my urticaria-like symptoms.

I know to make sure to drink a hell of a lot of water, even if it does mean visiting the disgusting portaloos more often. I will also possibly bring hand soap as well as the anti-bacterial gel just to ensure that I am as clean as clean can be.


Have you considered going to a festival or similar event in your stages of TSW? What kind of precautions would you take?

Friday, 5 July 2013

The Great Ooze - My Skin Is Crying

This is getting on my nerves now.


The constant ooze is driving me insane. It's been this way since Sunday and shows no signs of relenting any time soon. Once again the camera isn't picking up the grazes to their full extent but I can assure you that I am really red and sore.

I've never had ooze quite like this before. Usually it comes on after a mega scratch fest, it'll last a day or 2, dry out and I'll have never ending flakes but this is something of another sort. I'm not even touching it and my skin is just cracking open, weeping incessantly throughout the day and night, never quite drying up.

I'm physically and mentally exhausted from it.

Monday, 1 July 2013

Topical Steroid Withdrawal Insanity

Today I had the morning from hell. I can't even begin to exemplify how much pain I was in. I ended up going rather crazy, enduring moments of actual psychosis because I couldn't stop scratching, I couldn't stop hurting, and I couldn't get any hot water to relieve my torment.

Somehow during the moment of sheer insanity I managed to snap some photos. The camera has made them look quite tame in comparison to how I actually was. My skin was yellow from dry ooze yet weeping near-constantly over skin that had gone rock solid like botox. It was a pretty grim sight.





The rest of my body is covered in softer red blotchy skin, bar my arms which are like leather and show the typical bright white palms versus the red arm, shedding like crazy. I think the reason I'm not bright red all over is down to the antibiotics.

My wrists have swollen today. My Mum instantly drew to the conclusion of cellulitis but it's not edema based, they've just lost their definition. Suppose it's from over scratching and wearing tubegrips. The weeping on my face is slightly odd in that I look as though I'm completely covered in grazes but that's where the skin has been weeping. I haven't scratched these areas so the graze is a bit scary.

Luckily I now have 3 days to recover til I'm next needed at work so I hope to God I start seeing some improvements somewhere soon. I know it's gonna take a while seeing as I'm only just over a month into withdrawal but I really need to work.