National Eczema Week: My Other Half & I

This week (14th-22nd September) is National Eczema Week! As you're already aware, my other half, Shane Nicholl is already underway raising funds to support the National Eczema Society in order to further research into this often debilitating condition. You can take a peek at his progress by clicking on the links at the top of my blog and if you're feeling kind, why not help him by donating a couple of quid, no matter how small, it all adds up to aid this fantastic cause.

I don't mean to brag in any way whatsoever but I feel truly blessed to have such an awesome man in my life, who understands the extent of my sufferings and despite all the disgusting habits and processes that coincide with having a skin condition, he still sticks by me and loves me for who I am. He has gone out of his way to selflessly raise both money and awareness to help not just me, but others who suffer horrifically from the umbrella heading of "eczema" of which so many skin conditions fall under.

At the time that we first met I had no idea that we would end up having a romantic relationship as I didn't think that anyone could possibly be interested in pursuing a relationship with me. Sure, I still had people that were vaguely interested in me, but if they had seen the extent of my sufferings and all the habits that tie in with it they'd run a mile, thinking I was disgusting and not quite understand why I did what I did.

When you have a condition such as this, you find ways to mask it and cover it up so that no one would know the extent of your sufferings; spending hours upon hours preening the skin to perfection, being told by professionals to use copious amounts of steroid cream to keep it at bay, and to literally remove the dead skin with a pair of tweezers and cover red, blotchy areas with tinted moisturiser in order to look "normal" and feel comfortable in your appearance. The cracks would show sometimes but for the majority of the time I was able to hide it well, (before it became exceptionally bad and make-up was no longer an option) and it wasn't until I created this blog that I was met with aberration from many friends who had no idea that eczema could be so cruel. They didn't realise that my skin would shed so profusely, nor the extent that I went through to hide it.

The year of 2009 was when the whole bravado kicked off and I was to have very little or no respite from the beast for the next 4 and a half years. Meeting Shane later that year was like a breath of fresh air. Despite him not really having a clue about eczema he didn't really question how abnormal my habits were, from the peeling of dead skin with the aid of tweezers, to the full body application of moisturisers at various intervals during the day that would take ages to sink in to allow me to dress, to the hours spent laying down in the shower for relaxation... he really didn't question any of it, he just accepted that this was my life and took it upon himself to work with it rather than against it.

As time went on and my skin got worse and worse, despite seeing a dermatologist on a frequent basis for help, Shane still stuck by me offering his love and support, cheering me up on the days where I felt utter despair and like life wasn't worth living. He made it worth living and gave me the strength to carry on going, to fight against my body and to see that I was worth more than I thought. In fact, it was his seed of an idea that got me into blogging and so earlier this year, this very blog was born so that I could help others like Shane has helped me.

As cheesy as it may sound everyone needs a rock like Shane in their life, whether they're battling with an illness or not it helps you knowing someone has your back and that you're not alone in this struggle that is life.


I love you Shane Nicholl.

(Shane & I, Sept 2010 for my 21st birthday in Paris. Was on Ciclosporin at that point, hence make-up, the ability to wear necklaces without causing reaction, wearing black, dyed hair and stretched ears!)

P.S. My humblest of apologies that this post is overflowing with cheese :p

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 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!

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.

All The Cake

Wow. What a fantastic day today has been!

The sun has been shining, putting us all in a lovely mood which has been absolutely brilliant for the Bake Sale we held today to help promote Shane's 1000km Challenge in order to raise money for the National Eczema Society. We made a whopping £152.72 which couldn't have been achieved without the help of others donating their baked goods - so a big thank you to everyone who has taken part - we are incredibly grateful for your support!

The layout of this table changed a lot over the 6hrs we were there, including further cake donations!

It was also lovely to see a turn out of other eczema sufferers and to have a chat about our conditions sharing our tales of both woe and hope. I'm just so pleased that people have taken an interest in our cause as eczema as a condition tends to go unrecognised in the wider scheme of charities, especially given its debilitating nature in a large number of individuals.

My friend pictured above, Hannah, who blogs over at The Retired Bridgeburner, came to stay overnight to help us man the bake sale. It's been lovely having her here and I am beyond grateful for her assistance and indeed putting up with me complaining about being extremely itchy and flaky ;) Come back soon, Hannah! She is a huge tea and cake fiend like us, so of course despite being surrounded by cakes for a bake sale we had to bake some for ourselves! We also had to have a trip to Bunty's Tea Room which was a pleasure as always. People who have never been to Lincoln should always go to Bunty's as it is a part of the city experience! 

The London Marathon - Raising Money For Eczema

This weekend saw my other half, Shane run the greatly prestigious London Marathon, his first EVER marathon! He did extremely well, running it in 3 hours and 47 minutes and for that alone I reckon is a major commendable achievement. After all, he isn't doing it for himself, he's doing it in order to raise money and awareness for those who suffer from this awful skin complaint in the hope of providing the National Eczema Society with the much needed capital to fund necessary research to finding the cure.

Despite not being in the best shape for this big run; lack of quality sleep and eating far too much rubbish due to his birthday being earlier this week, he's done amazingly and I am so proud of him. Next weekend he will be running the half marathon in Stratford though does have the option of running the full marathon if he wishes. It's probably for the best if he recovers though!

Please, please sponsor him >>> www.justgiving.com/shanes1000km

Photo after he'd crossed the finishing line.

Shane & I before the run. We weren't allowed to walk through into his area so this was goodbye until after the race.

After the race. The weather got out really sunny. It's hard to see here as my face is shaded but I'm actually very sunburnt.

Unfortunately because I take immunosuppressants I am much more susceptible to sun burn. It's my own stupid fault for not having sun cream to hand, but I'm yet to find one that doesn't irritate my eczema. I find that sun cream tends to have a drying out effect on the skin, so need to moisturise directly after application but this then defeats the object of wearing sun cream as the moisturiser acts as a grease, thus heating up and causing a cooking effect. Rubbish! Looks like I need to shop for a big floppy hat in the near future!

I will write up a separate post relating to some other issues I've thought up this weekend so keep your eyes peeled for those.

RUNNING FOR A CURE - Charity

So this Sunday my other half will be running the London Marathon which makes up a tiny 4-5% of his overall 1000km Challenge. He is running to help raise money and awareness for the National Eczema Society in order to pave a way into finding the inevitable cure for this horrible, and often debilitating condition.

1000km is one hell of a challenge! Many people run one 10k or one marathon NOT 1000KM!!! That's the equivalent of 621.37 miles which is around the equivalent of going from Plymouth (South of England) to Inverness (Scottish Highlands)! That is one hell of a way really isn't it?! Not to mention it would take 209 hours which is basically over 8 days of running non-stop. MIND BLOWING?!

Every weekend, come rain or shine, and even snow, he is lacing up his trainers and running anything from a 10k (worth 1%) or a half marathon or full marathon. He is now over 1/4 of the way there with 285.94km under his belt. However despite his best efforts has only raised a measley 22% of his £6000 target. Imagine how much research can be carried out with £6000?

In order to sponsor Shane you can donate as much or little as you feel appropriate to http://www.justgiving.com/shanes1000km or alternatively you can text "RACE55 £x" (£1-£10) to 70070.

Please help to spread his mighty, epic challenge. Thank you :)

Much love to any of you who do sponsor, it really is a worthy cause!

Running 1000km For Eczema Charity!

People don't really look at eczema as being a life changing condition. It just tends to be regarded a minor annoyance that may appear from time to time, usually in winter months or during times of stress. I want to make people aware that  eczema can be a debilitating illness and literally does take over; preventing leading what may be deemed a "normal" lifestyle as it can often make carrying out day to day activities impossible, or at best restrictive.

This picture basically sums up what a lot of people say to me when they notice I have eczema. It just shows a level of sheer ignorance on their behalf. What may work for some people, doesn't necessarily work for everyone. When I inform them that I see a dermatologist at LEAST once a month and that I'm taking medication that can cause other serious health problems because I've tried everything else they pretty much shut up.

We want to give the cause more awareness and to raise money to aid science in finding a cure. Eczema isn't always just a little patch of inflamed, itching skin in the elbow flexture, nor does it just occur in children. 1/5 children have eczema and 1/12 adults have it, but there is only a minority of us that will suffer chronically and find it debilitating.

This year, my boyfriend, Shane Nicholl, who has a keen passion for running, will be partaking in various races over the course of the year where he will complete 1000km in distance. He's told me it's his little way of showing that he would literally run to the end of the earth for me to see me get better :)

To follow his efforts you can find him on Facebook or on Twitter! :)

And to sponsor his page is: http://www.justgiving.com/shanes1000km

On the 3rd of Jan we were invited to do a radio interview on BBC Radio Lincolnshire and here it is...




& yes I should have written notes beforehand instead of regurgitating the same words and completely forgetting what I wanted to say! Better luck next time, eh? :p Shane completely nailed it though. Mr Radio Voice!