In The News: Exchange Magazine (March 2013 Edition)

Yesterday I received a copy of the National Eczema Society's quarterly magazine for members 'Exchange'. The magazine is produced every three months to keep the charity's members up to date with news about the charity and the latest in management and treatment advice for the condition. I was fortunate for my 1000km challenge to be featured on the front cover of their latest issue.

Officially now a cover model...

The magazine also includes an article on the London Marathon, in particular on the runners who have chosen to run for the National Eczema Society. Today I was interviewed by a reporter from The Lincolnite, a local online news outlet, about my challenge, my motivation behind it and exactly how I will go about completing it,  I expect the article to go online in the next couple of days.

...and also a centerfold.

I have also been in contact with my old University, the University of Lincoln, about how they can help support and publicise my challenge. Finally, the local village newsletter have confirmed that they will be able to run a piece on my challenge in their next issue.

So far this year I haven't been on a single 'training run', aside from the running I'm doing at the weekend the rest of my running has been to and from work. With the London Marathon around seven weeks away I have decided to take my training up a level and this past week I have reintroduced strength training twice a week to work on my core strength. 

Today, after my interview with The Lincolnite I opted to go on an impromptu speed training session during my lunch break. Living in Lincoln with its many hills does occasionally have its advantages, such as today when I utilised a series of hill sprints (Motherby Hill, Steep Hill, Spring Hill and Victoria Street) into my run. It has been a while since my last hill sprint session, and it kind of showed, but with the weather slowly getting better I hope to reintroduce them back into my training. 

So steep they named it...'Steep'

GUEST POST: Documenting the Eczema & Changing up the Diet!

From March 1st I'm going to start documenting my skin via photographs every morning when I wake up to every night before I go to bed. By doing this I'll be able to show you all, and myself, just how my skin goes during the day. At the end of the month I'll compile them all and make a gif image to show you what happens to my skin over the course of a month.

I'm also looking to fine tune my diet somewhat as I haven't been able to shake the bad habits off since Christmas time. I still have a tonne of sweets and the like in the cupboard but I'm just going to ignore their existence for now ;) I've also noticed that I'm starting to put on a bit of weight again, not really a lot, but my size 8 trousers (I don't even know how I even got down to wearing an 8?!) are beginning to get a little tight on the old tum. Everyone bangs on about the benefits of healthy food in eczema patients so I'll get back onto the wagon, even though I'm not entirely convinced it fully helps me, seeing as I suffer primarily from environmental allergies but if it makes me healthy then that's good.

If anyone wants to drop me in any recipe ideas that'd be fantastic! We tend to eat the same things over and over and it can become a bit tedious. From what I can tell the only things I can't have are spices and possibly eggs as I've (only sometimes) flared when having had egg sandwiches and pancakes, and definitely flared from eating shop bought birthday cake and quiche. Although recently I was alerted to this article: 'House dust mites could be a cause of food allergy' which was a very interesting read seeing as I know that I am extremely allergic to dust mites and flour was found in the birthday cake, quiche and pancake. Funny huh?

139.89 - 160.97KM: The Stubborn Runner and the Quest for the Improbable PB (Sleaford Half Marathon)

I'm really not sure how to start this post. At some point between the fourth and fifth mile I was struggling both physically and mentally and my mind began to drift away from the race towards the contents of this precise blog post. I was thinking how I would have to write about unrealistic expectations, lack of preparation and how not to expect a PB from every race. However, somehow, after my worst race to date of this 1000km Challenge I am sat here having smashed my PB by around 7 minutes and achieved my target for the entire year of running a Half Marathon in under 1:40:00.

PB potential? Unlikely

At the beginning of the race I had already decided that today I was going to go for a PB. Common sense would have suggested to save the PB attempt for next weekend at Silverstone, a course I am both familiar with and one that is both fast and flat. Unfortunately for me common sense rarely prevails, those that know me can attest to the fact that at times I can be quite stubborn, so when the race started I set off with the aim of 7:30 minute miles.

I had started the race fairly far back in the group, so most of the first mile was spent trying where I could to get around those runners in front of me that weren't running as fast as I wanted them too. This proved to be an unnecessary use of my energy, a bit more organisation would have seen me start the race in front of these runners anyway. After the first mile the doubts about today being a good day for a PB attempt began to sink in, for some reason I had got it into my head that the course was flat and all on road, so to be faced with hills and off road sections took me by surprise. My pace began to slow as I was reluctant to push everything into a race where I was unlikely to come close to my 1:46:23 PB and I decided to save the PB attempt for Silverstone.

Extremely erratic pacing

Around the 5 mile mark something happened. Whilst I am reluctant to label it as 'hitting the wall', as it was only a Half Marathon, a distance I am more than familiar with, I was certainly having trouble getting over the curb, so to speak. Groups of runners were coming past me at regular intervals, I was experiencing one of the most intense stitches I can remember having and the mouth piece on my hydration bag even fell out. It's safe to say I was experiencing my worst race so far this year and I just wanted it to be over. I'm still not sure what, but something pushed me on and I began telling myself the easiest way to make the misery of this race end is to get my arse over the finishing line as soon as possible.

I had previously stopped bothering to keep an eye on my pace as my hopes of achieving a sub 1:40 Half Marathon had long gone, however a quick glance at my watch on the 10 mile mark showed 1 hour 15 on the clock. With only 3.1 miles left to run and 25 minutes between me and my 1:40 target I knew that my dream was still on and I began to dig deep.

On track for a PB you say? Awesome

The next three miles were the easiest three miles of the race and when I turned the last corner onto the home straight and saw 1:39:00 on the clock a smile broke across my face as somehow I had managed to cross the line in sub 1:40.

It is easy to ignore the negative points from a good race, but although I destroyed my previous PB today's run will go down as a bad race with lots to learn from. Firstly I should have paid much more attention to the course profile before the race, so I knew what to expect and didn't find myself having to desperately rethink my strategy halfway round. My diet needs cleaning up and in general I need to start taking more care of my body. My breathing needs strengthening too, I am typically a mouth breather and cold weather like today makes it even more difficult to breathe through my nose. Although this year I have started running with a hydration bag, I'm finding it awkward to drink from as using it blocks my only oxygen supply. I do have a Power Breathe, which I have fallen out of the habit of using which is going to need to form part of my routine again.

Underused and unloved

Today was a reminder that this year is very much about reaching the 1000km by the 31st December in as best shape as possible. As the saying goes, 'it's a marathon, not a sprint', hopefully despite my PB today I remember this next weekend.

Distance: 21.08 km | 13.1 miles
Time: 01:39:34
Official Time: 01:39:39
Average Pace: 04:43 min/km | 07:36 min/mi
Goodie Bag: T-Shirt, Banana, Eat Natural Bar, Bottle of Water, Flax Seed, Feroglobin and Joint Ace.

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View my run:

GUEST POST: Light Treatment & New Treatment As Of Today 22/2/2013

Since having to abruptly end my course of immunosuppresant, Methotrexate, last month due to hair loss, and the fact that it didn't appear to be working, I have been undertaking light treatment therapy.

For years the dermatologists told me I couldn't try it out because it wouldn't benefit me in the slightest and I'm now beginning to believe it. But when you've tried out all available treatments ranging from the steroid creams, wet wrapping, protopic cream, antihistamines, avoidance, hypnotherapy, immunosuppressants etc. etc. it all becomes a bit wearisome and so gaps that have been missed need to be filled, or at least given a go in this case. We are literally clutching at straws now that I've tried out all the immunosuppresants available so light treatment had to be considered even though we knew there would be risks such as contracting eczema herpeticum again, but thankfully that hasn't happened!!!

So I had my first session at the end of January. I was in there for 21 seconds on what I was told was a  dosage used for babies. The most horrible part of the treatment is not being allowed to moisturise beforehand. So you're literally getting up, putting clothing on, having your treatment, all whilst feeling absolutely awful and dry and just yucky and bordering unbearable. Of course as soon as my treatment is done, I'm racing home and getting in that shower. Bliss!!

...But anyway, my first session wasn't exactly brilliant. I had my session at 11:30am and by the middle of the afternoon my face felt like it was on fire. It was so tight but I didn't really think much of it. An hour or so later I passed a mirror and saw that my skin was SO red on my face and neck. But it wasn't symptoms of sun burn which is one of the side effects, as my nose was completely unaffected, no, it was my urticaria.

Annoyingly, the pictures I took were on my unreliable phone. So I was in fact at the time, much redder and much more flaky & the contrast on my nose was ridiculous.


          

They told me not to completely rule out the treatment and to try again the following Monday on an even lower dosage for a mere 17 seconds. It didn't seem to be as bad this time, my face didn't flare like it had before, but the dryness of my skin was second to none. I was having to moisturise my face literally every 5 minutes because the absorption was just plain ridiculous. I've only been for a few sessions and this is still happening now. I'm going through a heck of a lot of creams and antihistamines. The skin on my neck actually wept the other night (all over my bedding, yum!) and is generally sore and so very, very dry.

So this morning I went to see my dermatologist to see what the next step was. I'm now back onto immunosuppressant, Mycophenolate. Last time I took this I was only on it for a week as around this time I had suspected glandular fever, tonsilitis, eczema herpeticum and just generally going through a horrible time. Back then I thought the only way to stop these reoccurring infections was to stop taking the immunosuppressants as they do just as they say, suppress the immune system. So hopefully I'll get some respite this time around!

Has anyone had any success with light treatment? I'm very interested in those who suffer from symptoms closer to my own and how it worked/ didn't work for you? Those who it didn't work for, what did you do next?

GUEST POST: Eczema and Beauty Products

Following on from my previous post I thought I'd talk about beauty luxuries that people without skin conditions take very much for granted. This was provoked by someone underlining some of the things they themselves have had to give up, and a lot of the things I, myself have never actually been able to use or very seldom use.

Make-up, perfumes, nice smelling beauty products including bath bombs, shower gel, bubble bath, shampoo/ conditioner etc. etc. are all things that people generally spend so much money on as a means to make themselves feel good. Most of the products listed are my body's idea of hell, especially if applied directly to the skin. In the past I have been able to get away with some brands of make-up and still use some of them now, providing it's just on the eyelashes/ eyebrow area but as I said in my previous post, my skin burns and weeps now if I try to apply some of the products I used to use. Perfume is another one I try to get away with as it just smells lovely. Instead of applying to the skin I will just spray it from a very close proximity onto my clothing.

The other things such as bubble baths, bath bombs, shower gels etc. are things I've pretty much never experienced because I know the effect they will have. Well, other than using "Matey" bubble bath as a small child but my mum realised it was pretty rotten to my skin so that ceased instantly. People used to find it weird when I said all I washed with was water but in truth that is all that was acceptable for my skin. Nowadays I will use Hydromol as an additive either slathered on in the shower or put into a bath as an aid to my drier than dry skin.

Shampoo and conditioner can also be a nightmare just to those with sensitive skin, so you can perhaps imagine just how bad they would be for an eczema sufferer, especially with added ingredients such as lanolin (also found in many other beauty products) which derives from sheep, a notorious allergen for sufferers. The only brands I've been able to use in my life are Vosene, L'Oreal and Pantene Pro V. The likes of Fructis and Head and Shoulders have had such an adverse affect that I would never contemplate using them again, even if the ingredients have probably changed within the last 15 years! Better to stick with the safe ones if you manage to find them!

It is frustrating also when someone who doesn't know you well buys you one of the above as a gift and for fear of being ungrateful you just have to accept it and give it to someone else. Nowadays if I have a Secret Santa or whatever I'll tell whoever is organising it to tell my Santa not to bother buying them. Better than having a wasted gift though isn't it?

I do sometimes see beautifully made-up people and wish I could have what they have. Nice skin, being the bottom line. So that I can wear make-up to enhance my features, smell nice and truly feel indulgent.  My idea of 'indulgence' is to lay in the bath tub with the shower on my feet and to just relax and smother myself in Hydromol, but this isn't really indulgence, rather than something I have to carry out every day just to cope and survive.

How do you indulge yourself?

Edit: I would only use different products if I was having a prolonged flare-free period, yet as it has been more than 6 months since my last 'clearer skin episode' I dare not use anything that could make my current situation worse. But thank you for your given suggestions, I may try them in the future! :)

109.84 - 139.89km: Blood, Sweat and Toenails (St. Valentines 30k)

When a course is described as challenging and undulating it is wise to heed the warning. The Stamford St. Valentines 30k, held each year on the closest Sunday to St. Valentines day, is a favourite for many runner's running a spring marathon because of its demanding course and timing. Another first time race for me again and the furthest I had ran for about 8 months, today was all about survival and maintaining a steady, constant pace throughout.

30km of pure undulating bliss

In the back of my mind I had set myself a target of finishing in under 2 hours 30 minutes, but this was third on the list of my criteria for the race. This would mean running the race at an average pace of 8 minute miles, something easily achievable, but as long as I was able to finish in under three hours I would have been happy with any time. When I reached the half way marker and saw 01:15:11 on the clock I knew that finishing in around 2 hours 30 would still be achievable, so I started to shift my priorities slightly. Veterans of the race had warned about making sure there was plenty left in the tank for the last 5km and the painful climb back up the same hills the race started on top of and this was still in the back of my mind.

With about 6kms to go a group passed me that I had passed some 10kms earlier, it was clear that they were holding back at the beginning of the race for the final push at the last 5km. I tried to keep pace with them, but they had far more left in their legs than I did at that point. Running with a hydration pack means that I often run straight past the water stations when I get to them, however when I saw the volunteers at each station with a gallon jug filled to the top with Jelly Babies I unashamedly made a beeline straight for them.

Despite the hills and punishing last 5km I managed to keep my average pace steady at around 5:00 minute/km and when I crossed the finishing line the clock had just ticked past 02:31:00, meaning I had missed my ambitious target time but was still a very satisfying result. A flatter course would have seen my time fall well under 02:30:00 and I'm now confident that at some point this year, even if it's not in London in April, I should be able to run a 03:30:00 marathon.

Running too fast for the camera

Whether it was down to hysteria, or the date and theme of today's run reminding me of exactly why I'm doing this but for the first time this year I ran with a smile on my face from start to finish, despite all the hills and pain. The course was signposted at every kilometre with heart-shaped markers, along with some kind of witty remark. A favourite of mine, and one that I could truly relate to read something along the lines of  "Don't worry about your toe nails. They're only cosmetic".  The poor little fella is still hanging on, but won't be for much longer.

Distance: 30.05 km | 18.67 miles
Time: 02:30:27
Official Time: 02:30:53
Average Pace: 05:00 min/km | 08:03 min/mi
Goodie Bag: Long Sleeve T-Shirt, Isotonic Drink, Shower Creme, Chocolate Bar and Love Hearts.

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First 10k Split: 00:48:15
Second 10k Split: 00:51:04
Third 10k Split: 00:51:08

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View my run:

GUEST POST: 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?