4 Years TSW

Hi everyone, I feel I owe you a post and an explanation as to my whereabouts!

Can I just start with saying thank you so, so much to anyone who has asked after me, anyone who has taken the time to email me, comment or message me on other social media. I am so grateful for you all <3 For those who have gotten in touch with me who wanted answers I'm so sorry I've been unable to supply them. Life at the moment is pretty hectic.

I've been wanting to post for a long time but never quite knew what I was going to say. My 4 years TSW anniversary was May 22nd, I was looking to post then but just didn't have the time or the will. It was only really this morning when I woke up a lot earlier than anticipated that I happened to look at a message on Facebook and discovered a whole section of unfiltered messages that contained an overwhelming amount of unread messages, dating all the way back to 2012! I am so annoyed that I've only now just been alerted to them and I can only but apologise for not getting back to you. I will say as well though that I don't add people I don't know to my personal Facebook account - if you want to talk to me I'd prefer it you emailed me. Alternatively I guess I could make a Facebook group...

So anyway. How am I? How is my skin?

I'm doing really good at the moment. I've landed a full time job in the city, which means hourly commuting each way. I'm in the process of buying a house, and have been since November so you can only dare to imagine the stress that I've been under! That is actually another reason I didn't want to post yet - I was hoping I could update from the new house but hey ho - life just doesn't always follow a plan.

At current my skin is pretty good. Dry, but good. I'm still taking Ciclosporin for now but I hope I can come off eventually or even start on Dupilumab, we will see. It hasn't been plain sailing though, when I first started at my new job I had a horrible flare which was really quite embarrassing after being good for a few months and having to meet new people. It keeps coming and going but it's bearable and I also put it down to the stress that comes with the house buying! Not only has my skin been bad but I've also been experiencing other unexplained health issues as well which we're currently trying to figure out. Stress is a funny old thing.

Another thing I wanted to mention is heat - it's really hot in the UK at the moment and I'm OK. I can deal with it now. I no longer come out in a full body heat urticaria rash, I'm starting to feel more confident that that is a thing of the past and was fully related to topical steroids, but until I flare again I'm not going to say that for definite.

There are moments that have me stopping and thinking, things now that I've been taking for granted, that I couldn't even dream to do when I was in the deep grasps of TSW and it's just astounding to see how far I've come. I have a full time commuters job, I can tolerate heat, my skin no longer comes off in gigantic flakes that compare to sunburn peel, I don't have to vacuum my bed, I can take a 5-10 minute shower and be ready within an hour. I can stay at other people's houses without thinking of myself as a hindrance or worrying that my skin or routines will be an issue. I'm no longer housebound. Touch wood I've not had a skin infection or a herpeticum outbreak, in fact I can't even remember when I last had one!

The only things that are still problematic for me is the aforementioned dry skin but even then it's not really that much of an issue - it'd just be nice to have suppler skin but dry skin has always be an issue of mine since day one. I'm also not yet confident I could live with a cat but I think that could be due to lack of exposure, I only spend time with cats once every couple of months so it will be hard to build up a tolerance, but gone are the days of full body rashes and acute asthma attacks when I so much as dare to look in the direction of one. I also still suffer from dermatillomania but I feel now that my skin has cleared up there's not as many imperfections for me to pick at, but of course the tweezers still come everywhere with me! I also don't wear make up but I'm cool with it... that's the other thing, when going through such a traumatic illness you just start accepting your appearance for what it is. In my early 20s before the onslaught of TSW madness I used to wear make up every single day and when I became so ill it was a travesty, but over time you just accept that it's your face. It'll do.

And now onto the eagerly awaited awkward photos (that's the other thing, it's been so long since I've taken photos of myself I just can't haha!):

I decided to take photos in a changing room because the lighting is always different.

Ignore the scab on my chin... it was a spot but dermatillomania and that...

I woke up like dis

Awkward flabby tummy pic

So as you can see, dry but currently rash free!

Hope everyone is well and I promise not to leave it so long next time.

Also I was emailed about this giveaway to share with you all which we can use to celebrate my 4 years of being steroid free!; Win some Dermasheets for your bed worth $270!

Good luck!

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!

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.

a Rafflecopter giveaway

Good luck :D