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.

23.5 Months Steroid Withdrawal Ramble

Hey guys, never fear - I'm still alive!

I'm nearing the 2 year mark! Things still aren't going brilliantly, I'm still having flares and such and still taking Ciclosporin but overall I don't have too much to complain about as I've been able to go to work and live life a bit. I believe it has been nearly 2 months since my last infection so that's pretty great going for me.

I have a dermatology appointment at the end of the month in which I was going to inquire about the Dupilumab trials/ other biologic treatment, but I'm still unsure as of what to do. I do however feel I need intervention in order to carry on with my job and such. My goal this year is to be working a different job with full time hours. I'm fed up of being ill and I want to get on with my life's ambitions, of which have had to be put on hold because of being poorly. Saying this, I'm not sure what my career goals are. I've been aiming towards working in an office environment as I think that will be better for my health, but all in all I'm at a loss as to what I want to actually do. I'd love to get into copy writing or some such but not too sure what the preferred route is into such an occupation.

My diet could be cleaner, as I say every time I write a post. I do my best to eat well and reduce my dairy intake, however in the last few months I've put on a little bit of weight which I must do my best to shift. Exercising vigorously has still been somewhat of an issue though when I have endured flares so I just do what I can... which admittedly isn't a lot.

At the moment my face is doing alright, though it was far better yesterday. My arms and chest need a little bit of work and the backs of my knees have signs of irritation but overall I seem to be doing alright. I've been mostly pale this week which is good news.

Also my little space on the internet is about to hit a quarter of a million views. That is quite frankly, insane! Thanks to everyone who visits and I'm so happy from reading your comments and emails that I have been able to help so many of you to know that you're not alone, and to even show people that they may not just have 'eczema' any more, you may be suffering from red skin syndrome/ topical steroid addiction. But I will apologise for being distant. I think I'm just going through a bit of a blogging rut, which many people do, but it has been nice to take time out and reflect.

I hope everyone is doing well!

Everything For Eczema Bamboo Pyjama Giveaway

Some time last year the lovely Gail from Everything for Eczema got in touch with me to ask what I'd like to see in adult pyjamas, specifically designed for eczema and allergies with a speciality in topical steroid withdrawal. I suggested having leggings with feet and also some form of gloves/mittens attached to the sleeves so that if would be difficult and nigh on impossible to scratch yourself with them on.

She got back to me a few months later with a design that seems to be exactly what we need! They are made from bamboo, organic cotton and 4% lycra to make them easier to put on over sore skin. The bamboo also  has excellent properties. It makes the fabric super soft, breathable so it helps to keep the body temperature regulated, is more absorbent than cotton for excessive sweating, and also contains antibacterial properties. The pyjamas have been created in Europe by an organic manufacturer so all of the fabric and dyes used can be traced if necessary. After all, we are all going through bouts of intense sensitivity with our skin so this factor is very important! The labels are also on the outside of the garments so none of that needing to cut them out because they irritate the skin.

Sorry for the rubbish quality photos!

Yours truly modelling the pyjamas

The pyjama top has fold-over style mittens on the sleeves which I think are an absolutely genius idea because there is no way in your sleep-like state you can get these things off to attack yourself, unlike when wearing gloves or mittens where they easily come off and you find you've torn yourself to ribbons. They're not impossible to get off but you really have to think about what you're doing when you do flip them so it's fair to say you're pretty safe when you're asleep.

Sleeve turned inside out to act as mitten

Sleeve the hands-free way to show you how they can be transformed into the mitten

The bottoms have enclosed feet so there is no way at getting in there and tearing your legs and feet to bits so they are well protected. The waist has a draw string fastening as it was thought that elastic could be irritating to those with allergies. It also means you can wear them on your hips or waist and as tightly or as loosely as you need when your skin is sore.

The built in sock

Drawstring waist

These pyjamas have really helped to keep my skin in check when I have gone through my intense stints of itchiness and open sores.

They are a lovely shade of blue in colour and come in sizes ranging from an XS to XL which can be worn by all adults and even older children. There is a size chart that can be referred to on the website to ensure that you get the correct size. They are £59.95 for a pair, however it is a great investment because due the bamboo/cotton combo they are truly made to last and withstand the steroid withdrawal cycles.

Gail has been lovely enough to give away a pair of these amazing pyjamas to one of my lucky readers! A new pair that is, not the one's I'm wearing above!

For your chance to win please just fill in the widget below: it barely takes any time at all although it is recommended that you sign up to blogger so that you can leave a blog post comment and follow my blog!


a Rafflecopter giveaway


Also as an aside and if you are not a winner - I am not endorsed for advertising these beauties but I truly do feel they make a difference to our quality of life when going through TSW so go grab yourself a pair here and enjoy actually feeling comfortable! http://www.everythingforeczema.com/adult-eczema-pyjamas.html. It's also lovely knowing a company actually cares about us and sees TSW as being a valid condition!

Kidding Myself?

OK so I admit defeat. I think I've been kidding myself that everything is fine and dandy, my skin is alright but the harsh reality is that it isn't. Right now I'm really struggling with it. I have widespread redness and I just can't stop scratching. I've actually reverted to wearing my Dreamskin pyjama tops to bed again in the hopes that I won't scratch myself silly. Yet despite my best attempts it doesn't seem to be working in my favour.

I am so upset that I'm back at this point. I do think the stress of the move has played a large role and it looks like stress will always go hand in hand with making my skin flare up.

Today I am having a moisturiser free day, laying unclothed sandwiched between a towel that I have laid out on the couch and a fleece blanket to keep me and my modesty warm. I'm so dry, itchy and flaky that I could cry.

On the plus lack of moisturiser = lack of redness.

My inner thighs 

Left arm

Chest

Close up of chest

Right side of face

Left side of face

Scabby, weeping, flaky ear.

The back of my right knee

Back of right arm, I've tried to capture the weepy bit which is shadowed at the top.

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?

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.

A quick update from Shane

Hi Guys, Shane here (Jenny's Boyfriend). 

I just thought I would provide you with a quick update on Jenny's condition on her behalf.

This morning Jenny woke to find that her face had swollen to almost twice the size it was last night and that the herpeticum was continuing to spread rapidly.

 

We went back to A&E as soon as we could where she was later admitted to hospital where she is staying indefinitely until it all clears up. She is currently receiving antibiotics and aciclovir via a drip. As it is there weekend and there are no dermatologists in we have to wait until tomorrow for some answers on why it was so severe this time round and when she is likely to be discharged.

I made a write up on this weekend's events on my running blog which you can read for more info here: http://shanes1000km.blogspot.co.uk/2013/06/48002-49619km-when-fear-is-your-only.html. 

Feel free to skip past the stuff about the race at the beginning.

Jenny will no doubt provide you with her story once she has been discharged, but for those of you who may have been wondering how she was, I'm sure there are many, I thought I would provide you with a quick update.

Thanks for caring,

Shane

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. :)

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.