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Tuesday, 29 January 2013

Have You Tried This, Have You Tried That

I know people are trying to be helpful but it becomes tiresome to keep reiterating myself to various different people. That was also the idea behind creating this blog so that I could just let people read for themselves about my condition.

My favourite is when random strangers ask you if you've tried [insert name of over the counter medicines] and when you sigh and say yes the smug look they beheld vanishes. Often these same people will be the ones who go "I know what that is, it's eczema" and you're like "yes, well done! Have a pat on the back, matey!" As I say, I know they're just trying to be helpful but it really isn't helpful for me. It's comparable to telling a person missing a limb that they're missing said limb. 10/10 for observation ;)

From this, I thought I'd talk about some of the conditions I do have and how they can sometimes conflict one another.

OK, so as the name of the blog suggests, I suffer from eczema. But not just one type, oh no, that would just be too simple for my body. No. I have a whole host of dermatitis conditions. I suffer from atopic eczema which as it suggests means I in turn suffer from atopy in general. Everything from hay fever to asthma to rhinitis comes under this heading.

I also have urticaria which manifests itself when heat is involved. This means exercise is usually out of the question, as well as being too hot generally whereby that meaning having too many layers of clothing on, or even on a summers day, I will, and do, suffer. It means for me that hot countries are completely out of the question. I went to Spain with my Mother one July and spent the whole time in sheer agony, covered in hives and not being able to get cool. It was a nightmare. Similarly, going to the gym and even walking up steep hill in Lincoln is somewhat of a task for me, whether it's a winter or summer's day because the heat will get me.

Allergies are another one of my pitfalls. I am severely allergic to dust mites. So much in fact that a proper reading couldn't be given because it was so high. This means that I find even household cleaning a chore and was even given a certificate by my dermatologist to say that I'm not allowed to do any household cleaning for 1 year. Jealous much? My asthma worsens and I come out in a rash, which then turns into eczema because I scratch it so much. It has also meant that I have had to reassess my career choice. My plan was to become a textile conservator, where I would clean and prevent long term damage to historical objects... Yes. You can see where this is going...

Cats, dogs and in fact any fur bearing animals are also out of bounds with my allergies. Annoyingly enough, I grew up with cats and looking back I did have a constant runny nose but that was all. Now, if I were to go to my Mum's house I would end up in A&E with an all-over body rash, an asthma attack and swollen eyes. It usually weeps too. Yum.

Patch testing also revealed an allergy to chromate but I don't appear to have had any problems with sitting on leather couches or wearing a leather jacket so I'm a bit skeptical. But it would make sense in terms of being a green dye within textiles, as I suffered A LOT when making a dark green dress for my Foundation Art year. I'm bloody proud of my efforts though!


Modelled by my lovely friend

Seborrheic dermatitis is another one. A lovely flakey one. And more recently I've developed hand eczema also known as dyshidrotic eczema. Apart from the soles of my feet, there is not one place that hasn't been affected by eczema. I also have Neurodermatitis in which I scratch all the time just because it has become a habit.

And as you can see from some of these conflicting conditions, it can make it hard to treat. I have found that steroid creams and slathering white soft paraffin all over is my best concoction to date. It REALLY helps me. Also sleep helps me too oddly enough. Even if it's just napping.


I hope this gives you all some more insight into some of what I go through. I could talk about it all day so I'll be sure to post about my coping mechanisms at a later date :)


Monday, 28 January 2013

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!

Sunday, 27 January 2013

Eczema Herpeticum

I intend to write a series of posts on how I have been personally affected, what has helped me, and just general things relating to it.

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Last year was horrible for me. I have no idea how I managed but I got through University, where I did a very hands-on course in Conservation & Restoration of Historic Objects... not exactly an eczema sufferers first choice, but alas, we all have our passions and hobbies - mine are just bad for my health!

In 2012 I developed the dreaded eczema herpeticum, not once, not twice, not even thrice but quadruple times!!! For those who aren't in the know, eczema herpeticum is essentially when the herpes simplex virus attacks and spreads throughout the eczema. It can be seen to be a dermatological nightmare and hospitalisation is often required if it is not caught at an early enough stage. In some cases it can even lead to death.

 

The first time I contracted it was after I'd taken a course of steroids to help with a severe bout of eczema, in April. So as you can see my skin is remarkably clear on that front (yay!) but not so great with the herpes simplex which you can note had reached my eye. 


This was the fourth time I got it, in October. One night I just had an excruciating pain behind my ear that hurt so badly I couldn't sleep. My lymph nodes were also rather prominent and I had just assumed it to be eczema at the time. But no, as you can see it has the characteristic blistered pustules. It stayed confined to my hair and neck that time thankfully!

As a consequence of having had the virus I am now on a permanent course of Aciclovir tablets, 400mg, twice a day. It also means that when my eczema becomes severe and infected I can no longer rely on steroids as a "quick fix" because the result will be this. As I have been infected with the virus I will probably have outbreaks from time to time which is just something that one has to kinda, well, get used to. Though I was rather upset by a remark from an ignorant woman who said under her breath with rather a lot of malice,  "oh God, I don't want what she's got!!!" which really annoyed me because all she'd get is ONE measly bloody cold sore. Not a whole face full of them.

But aside from that my advice is, if you suffer from severe eczema stay away from people with cold sores. Unluckily for me my partner bestowed this upon me as he gets coldsores from time to time. Tut. But I love him so I'll let it slide... xD

Saturday, 26 January 2013

Hello!

It's about time that I made a blog about my eczema as I've been saying I'd do so for a long while now! So here we are... I have eczema.



Me on a very good day

My name is Jenny and I have had eczema, asthma and hay fever since birth. I had been able to mostly manage my conditions by taking a steroid inhaler and applying hydrocortisone when it flared up. However it wasn't until the beginning of  November 2005 that my life turned upside down and I developed a somewhat severe form of the condition. It was around this time that my Grandfather died and I met my Father for the first time. Certainly not a good time for any 16 year old girl that's for sure.

The day of the funeral my skin had become inflamed, covered in weeping sores. My eyes were incredibly swollen and my asthma had worsened rather dramatically. I was in so much pain, it was unbearable and everyone stared at me which didn't exactly help matters! That night I was rushed to A&E as I had an asthma attack and my skin looked and felt infected. They kept me in hospital after administering shots of antihistamines to try to relieve the skin and I have to admit, it was one of the most horrendous hospitals I've ever been to... but that's another story.

It took around 6 months to recover from that episode and it returned to a more manageable state up until January 2009. Since this time, there has barely been a day where I have had respite of the illness. I have tried everything from steroids, various moisturisers, antihistamines, wraps, protopic, immunosuppressants, hypnotherapy, and so on and so forth. We have however discovered that I don't only suffer from eczema but also urticaria, sebhorreic dermatitis, alongside a number of allergies including dust mites of which measured so highly that a precise measurement couldn't be obtained! I'm also severely allergic to fur bearing animals, especially cats with saddens me greatly as I grew up alongside them, and am now no longer able to visit my Mother's house.

So yep, there's a brief intro to my condition. I hope to help other's with their own illnesses and to raise more of an awareness of severe eczema!