Topical Steroid Withdrawal Staph Infection

Just when I thought I was doing well I get knocked down with a horrible cold and then today I wake up to a probable staph infection. I think stress is definitely the factor in this circumstance, what with the move coming up. Grumble.

I still have some doxycycline left over from when I had MRSA, at least a full courses worth so going to start taking that and also not use moisturiser for the day. Not sure how I will fair tomorrow at work without any but this needs nipping in the bud ASAP.

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

Eczema & Dermatillomania

I must start this post first off apologising that my posts are becoming less and less, but it's because I feel as though I don't have much to talk about recently. My blog started off in its infancy as a blog to inform people about my severe eczema and to help them, and other fellow sufferers, relate to the debilitating nature of the condition. As time went on I found out about Red Skin Syndrome and I was getting illnesses pop up far too frequently for my liking and so this here blog took the form of a journal.

Not a great deal has changed since my last entry regarding my skin, it is still rather pale, however the scabs on my legs have dramatically spread and look even worse in their appearance because I just can't leave them alone. This is why I would like to turn to the subject of Dermatillomania.

Dermatillomania is described as an obsessive compulsion of skin picking. It is much the same as Trichotillomania (hair pulling) where the compulsion becomes too much and despite knowing the consequences, such as creating ugly, raw and even scarred, disfigured skin, it just can't be helped. It brings a sense of relief to pick at the skins irregularities and is even a pleasurable experience.

I, myself have been picking at my skin since the beginning of my severe eczema phase (Jan 2009). Prior to this I had strange habits such as cutting individual split ends from my hair for hours and hours. Skin picking is not a habit that can be easily broken, much like scratching the all-consuming eczema itch. Having eczema primarily means that I will always have scabs to pick and dry flaky skin to attack with tweezers, it's just part and parcel of the condition. I know I won't be alone in my skin picking habit, as I know of many others with eczematous skin who do the same.

I wanted to talk about this because I am having a lot of trouble breaking the habit of picking at the scabs on my legs. Skin picking has always been something I've done as a way to relax and is one of my coping mechanisms. I have been known to spend hours and hours just picking and tweezing away at my skin and I even have urges at various points in the day to just go home and pick. When I'm out away from home there's always the thought in the back of my mind about how I will go to town on my skin later on. It's a bit like a dirty little secret because I like the experience of just sitting there picking off all the dead and irregular skin but if people knew what I did, and I have told some of my friends, they would be horrified and disgusted.

I realise how I'm basically destroying my skin and making it even worse because it just isn't being given the time or the means to heal naturally but I just can't help myself. It's like an addiction. It has been compared to self harm because you're fully aware of what you're doing to your body but the compulsion for relief is just too much.

I've decided to publicly create this post because I feel the more people who know about this, the more I may feel embarrassed that I am causing myself harm. I've been taking measures to not use tweezers on my legs, to keep them covered up, and if they do become itchy to allow myself to scratch if I have to just to quell the itch, otherwise it just becomes all too consuming and there's no stopping me. I will literally go to town taking every single scab off, making it bleed and produce proteinaceous fluid so that it can form new scabs. Sadly if scabs are picked off too much it can cause scarring and larger areas to form.

I said in a previous post how one of my life goals was to be able to freely wear shorts next year without tights or leggings. Let's hope I can leave my legs alone to actually fulfill that.

Does anyone else suffer from this annoying little quirk? Please comment and let me know :)

Buy Tickets, Win Prizes (Shane's Charity Raffle)

It's taken me a grand old age to draw a winner for the Silentnight giveaway but I am pleased to announce that the winner is - Victoria Androsova! Well done miss, I have now passed on your details!

In other news: Shane Nicholl is holding a raffle that will be drawing at the end of this month! Prizes include: a family ticket for Jorvik Viking Centre in York, Valerie Patisserie Treatbox, Gift box from Lush, £20 voucher for Asda, a pair of tickets for any show at the Glee Club in Nottingham, a meal for 2 at Vodka Revolution, Family passes for Burghley House & Doddington Hall, Gym passes... etc. 

For a full list of prizes go to: http://runshanerun.co.uk/raffle

Tickets will be £1 each and can be bought either in person from me or Shane or you can donate to his Justgiving page: http://www.justgiving.com/shanes1000km providing your name and ticket amount so that we can contact you and put a ticket(s) aside for you.

The draw will take place on Sat 31st August. The winners will be contacted via Facebook or email/phone. A full list of winners will be shown on Shane's webpage.

Thanks guys, and good luck :D xx

P.S. We would be grateful if you could spread the word!

P.P.S. The majority of the prizes are based in the Lincolnshire area.

Documenting My Skin 14/3

So I can't be bothered to keep doing single installments of my days throughout the month so I'll let you wait until the end to show you the full montage of images displaying my skin. Though I have to put my hands up and admit there have been a couple of days where I've simply forgotten to snap an image because the camera hasn't been in reach/ been too tired and what not.

I thought I'd include a few pictures of how my skin was this morning though. It doesn't really show close-ups of the entirety of my face, which admittedly was rather grim, but it does give you an idea.





Since having showered and moisturised my face is now lovely and blotchy. Sometimes I'm not sure which stage I prefer... the incredibly dry, tight and cracked stage that peels off and weeps with huge discomfort, or the moisturised blotchy stage where the skin feels red, inflamed, itchy and just as uncomfortable/ intolerable. There's no happy medium. When my skin is bad, it's bad.

Unfortunately I'm working today and doing a food shop straight after so no doubt I'll be a bit of a mess tonight, as I inevitably am after a day of work. Those who say they're "allergic to work" say hello to me, I actually am!

Adult Atopic Eczema

As an adult sufferer of severe chronic eczema it's often hard to feel accepted and to know that other people are suffering the exact same thing due to the fact that most people's view of eczema is only from knowing it in its mild form. From having that stand point, I find many people don't really understand just what people like myself are going through on a daily basis. I've had a number of people congratulate me on creating this blog because they have finally found someone who is going through the same thing as they are. This is of course great as it means that I've had people to chat about the various highs and lows, what medications to use, how they cope etc.

Of course we have fantastic resources such as the National Eczema Society to go to, but sometimes it's nice to know that real people understand your woes and your need to get better to fulfill what could be considered a normal life. Not only this, but I believe that being honest and open about conditions, like I have with including images of my skin on a daily basis, and divulging the facts of how I have been forced to adapt and cope is also helpful in spreading awareness and even to act as a hub of information for other sufferers to gain some form of solace from.

I find many websites and even health services are more aimed towards children with atopic eczema and what parents should be doing etc. Where are the websites and services for those who have adult eczema? Eczema that only became a severe form in adulthood? OK, I understand that as an adult I don't need creams to be applied and that kind of thing (well sometimes I do if it's somewhere I can't quite reach but I seem to be a lot more flexible now!) but I still suffer from the other associated things. I cry when it is too much to bare in terms of itchiness and soreness, I do get embarrassed about it when people stare and say things, I need to have many tasks performed for me in fear of exacerbating my condition and making it worse. When I'm in such a state I feel like an invalid. I need to be constantly reminded not to scratch and even have force used against me if I'm undergoing a mad scratching frenzy.

As an adult, I feel we need more support than ever. Being a child you're under the care of your parent who pays for you to live; they pay the bills, ensure food is on the table and all those sorts of things that a child wouldn't ever have to even contemplate because they are exempt from the grown up world. An adult with atopic eczema will have such a hard time, especially if others are misinformed of their condition. I have been very lucky that work understand to a degree that when I'm bad, I can't come in to work, but that doesn't mean that things like my end of year bonus and my sickness record aren't affected by my inability to go in to work. It's these little consequences that annoy me as generally I will find myself unable to work on the days that work falls, and by the time I've recovered enough it hasn't even been a week and so I lose out on sick pay. Money that is necessary to fund my existence.

You may be wondering why I haven't applied for benefits if this is the case. Well, in actual fact I have. But because Shane is working we aren't entitled to anything. We have to live in the house we live in because it is modern, clean and large enough to fit in our possessions. But houses like this come with a higher price tag which we frequently struggle with some months. Don't worry our bills are always paid on time but working in an overdraft every month isn't exactly ideal.

If I didn't have Shane to support me I'm not sure how I would cope and I know there are many sufferers out there who don't have partners to support them. It is for this reason I feel that adult eczema should be more recognised. As I've said before, eczema isn't always a little bit of itchy skin that can be remedied, it can be so much worse; a daily, weekly, monthly, yearly battle of trying to control and regulate. The skin is the bodies largest organ, so just take a moment to take in the fact that someone who is suffering quite literally from head to toe is going through a very tough time.

Giving Up Is For Life - Not Just For Lent

My friend Hannah found herself inspired by my blog and recently created her own to raise awareness to chronic illnesses in general, and to discuss her own conditions. You can find her here: http://theretiredbridgeburner.blogspot.co.uk/

She made a post yesterday talking about the things that she has had to give up doing or have restricted her from being able to do. Instead of writing a comment, I thought I would talk about things that have impacted my own life from having severe eczema.

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Socialising

This is one of the things that has affected me the most, and is especially bad during periods where I'm at my worst. It's also these times when you find out who your real friends are as when you're on your own for what feels seems like a constant basis you become incredibly lonely and this can be self destructive if you let it be. A simple "how are you today?" suffices, as although you know you'll probably not be alright, having someone asking means the world, as it means they're thinking about you.

Akin to this, when I am at my worst and unable to leave the house but have made plans for certain events, having to cancel can be excruciating. It causes worry on my behalf that I'm letting the other people down, which in turn makes me worse, but if I do go to these events when I am experiencing a flare I know that it will cost me days to repair myself again.

Since having become allergic to fur bearing animals this can also be difficult as well as it means I am unable to go to other people's houses for fear that I will suffer a severe allergic reaction. Many people don't seem to consider the idea that I may require hospitalisation if a reaction was to occur and so I tend to have to skip events or ask for a more neutral setting which can cause unnecessary stress on both parts. It's also a real shame because I love animals, especially cats :(

Exercising

I've never been big on exercise but having heat induced urticaria has made it so much worse. Even walking around can be difficult, especially if I need to go up a hill. (I'm looking at you Lincoln Steep Hill!) Even swimming, which I used to do a hell of a lot of as a child, is out of the question as the chlorine affects my skin something chronic. It actually feels as though I'm having acid chucked at me and the drying-out of the skin affect is tenfold. Not ideal.


Going to Gigs/ Festivals

This is another one that saddens me. I used to give my all, sing and dance along to my faves like a complete loon, often while getting drunk. This just can't happen any more. Gigs are such hot and sweaty environments as it is without adding extra annoyances to my skin. So nowadays I tend to be selective of the gigs I do attend. Not just because of the effects on my skin, but also the driving factor... I get so tired, not necessarily because of the medication I take, but because of the level of bad health I have anyway.

Festivals are also a complete no-go for me now. Or at least the camping side of them. I've been attending Bloodstock Open Air since 2006 with 3 of the years being bearably fine to not have a shower everyday. Since my eczema took hold I can't even go a single day without washing the build up of skin and such off my body. I was fortunate to find a cafe nearby that offered a shower, albeit a rather disgusting shower, but it was still a step up from the portable ones at the festival. The lady who worked in the cafe was completely understanding about my condition and allowed me to have my showers for free. She is a complete sweetheart and I always attempt to pay her a visit for a nice cooked breakfast!

It's not just the shower aspect that does me in, it's the heat and humidity of the tent that also messes me up and the fact that I can't stick to strict routines with my skin. I mean, it takes me hours to get ready when I'm bad anyway so to add all the festival factors into the mix just isn't possible.

I now stay in a hotel.

Intimacy

I find intimacy to play a huge part with my skin. The heat of another person, even just sharing a bed with me is often too much to bare. Luckily we now live in a large enough house that if I am having a bad turn, which seems to be at least once a week right now, then Shane has somewhere else to sleep.


Work

When I was younger I was pretty manic. I woke up at 6am every day, went to college for 9am, picking friends up on the way, where I did an intense Foundation Art course, finished at 4:30pm, and worked until 10pm most nights of the week. Now I'm lucky if I can get through a 6hr shift at work. It really saddens me that I'll probably never be able to carry out a full-time roll again as I'm not one to want to sit on my backside day in, day out. I want to be out there making my own pennies, getting the most from life... but it just isn't meant to be :(


What I Can Wear

Back in't day I used to be somewhat of a Goth. I used to frequent corsets and long floaty skirts, adorned in black and dark colours. I had black hair and a face full of make up. I miss that version of me. I was a shy girl but my clothes didn't say that at all. Ah well.

Nowadays, although I still have something of a penchant for black clothes I tend to avoid them unless I'm having a good skin day because the skin dandruff can be pretty damn embarrassing. I also find that I can't wear scarves or necklaces because they irritate my neck something chronic. Annoying because I have a massive collection of gorgeous necklaces that I just stare at in wonder and lust! I also have to avoid light or pastelly colours generally as these also highlight my condition which is annoying because they'd mask the dandruff!

I also can't wear much make-up any more. Liquid liner and eye shadows are certainly out of the question as they now cause burning and weeping of my eyelids. Foundation just clings to the flakes and exacerbates the situation so that is also a no-go plus I think it is better for the skin to breathe. Nowadays I will wear mascara, brow pencil and a teeny bit of eyeliner at the edges of my eyes, but even then sometimes I can't do that either.

Crafting

I absolutely love crafting. I have so many creative ideas that I'd love to carry out but can't. I have an entire room dedicated to crafts in the hope that one day I will be well enough to do stuff. When I am experiencing a flare up crafting tends to make it worse. Doesn't matter what I do, it just causes me to flare. So sad as I have dreams of creating a business fueled by handmade goodies... Definitely still just a dream :(

Cleaning

My dermatologist actually wrote me out a certificate last June to say that I am unable to carry out household cleaning. As you can imagine everyone has been wanting to photocopy that and put in their own name. But the things is, I would clean if I could. Hell, my first job was cleaning my school for nearly 3 years! My allergies to dust are so severe that it brings me out instantly. Recently I've had to stop hoovering because it has created more dust settlement.

Travelling

This one also takes it out of me probably due to the stress of the situation. It can take me days to recover. I'd love to go to America but I honestly don't know if I could do it without scratching myself to death by the time I got there. Similarly, hot countries are out of the question because of the heat induced urticaria. It often annoys me when people say they're dreaming of sun bathing on a beach in *please insert hot country of choice* because I know that would actually be my worst nightmare.

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Wow. This post ended up being incredibly more lengthy than was intended but hopefully it gives more of an understanding as to why I can't do certain things. If anyone needs more of an explanation I'm more than willing to give it. You can also see how my condition has completely warped my identity, who I was, and the steps I have had to take just to cope, and why I am how I am now.

If you're an eczema sufferer what things have you had to give up?