Hello and welcome! Congratulations on making it to my new blog, Fighting the Itch! My intention here is to create a place to document my journey literally fighting the itch. I suffer with severe eczema. Now I know what you're thinking. 'Oh yeah! I have eczema, in the creases of my elbows, or the backs of my knees!'. When it comes to me, yes, I do have it in the creases of my elbows and the backs of my knees....and my hands and face and legs and arms and back and stomach and feet and neck and well pretty much everywhere. In combination with this eczema I also have the worlds driest skin. Literally, I do not understand how I am not a little pile of dust its that dry. But yeah, I want to document my progress as a way of seeing how well I'm doing (hopefully!) and also as a way of helping the people around me understand what its like to live with. As with many illnesses, it can affect me physically but also mentally, and its not always so easy to see or explain to people that although yes, I act fine and I seem fine, a lot of the time underneath my clothes I'm sore, Itchy and in pain. I think people forget that in fact the skin is an organ, that we need to live, and let me tell you that it sucks when it doesn't do its job properly.
Recently, with the start of my new treatments, I turned to the internet as most do to find out some more information. I really enjoy finding peoples blogs to read about their experiences as a sort of personal way of gaining information, rather than just the medical side of things. I found when I tried to do this, there was very little, if not zero information on the new treatments, and this bothered me. I couldn't stop thinking about all the other people who have probably done the same thing as me and have been left disappointed. So I figured why not start one myself so I can be that person to all of my fellow sufferers, and people going through the same thing as me.
I should do as most people do and start at the very beginning (Its a very good place to start....sorry I couldn't resist). So I've had eczema for as long as I can remember. My mum says its since I was six weeks old, and she would know! So really its been all I've ever known, 'normal' if you will. My brother also suffers, although not at the same severity as me, and so does my Auntie. So again, I think I always just thought of it as 'normal'. As a baby (bless my poor parents for having to do all of this) I was wrapped up In bandages to sleep and slathered in this cream and that cream on a daily basis. When I was younger It was that severe that even simple things like putting shoes on became painful, as my feet would split open during the winter. I always remember having to wear my slippers to school on occasions as I couldn't bear to put my school shoes on.
Over the years my skin improved at a very slow rate. Another memory I have, was being told by the doctors that eczema is known to clear up every seven years as that's how long it takes for every cell in your body to renew (I don't actually know if this is true!) But I remember anxiously waiting for my seventh birthday, and waking up to find that nope, my skin was still exactly the same. The disappointment was real. This didn't stop me slightly hoping when my 14th birthday came around that it could happen to me. Again no such luck. Now I'm 21, I've accepted that its just in my genes, and it always will be. I'm stuck with dry, pink, wrinkly skin!
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Left- During a flare up, Right- 24 hours
after starting steroid tablets |
So anyway, back to it. I got up to the age of about 15 managing with GP care, and with moisturizers and the occasional use of steroid creams. It was here that I saw a deterioration in my condition and got referred to a specialist. I visited the specialist once every two weeks for about half a year until my skin improved. Once again I got back on track, managing with the same level of care as previously.
This brings us up until the beginning of this year. After Christmas I saw vast deterioration with my skin, suffering from flare ups daily. This really began to take its toll, and after numerous visits back and forth the GP he admitted he did not know how to advise me any more, so said he would refer me to the specialists again. Whilst waiting for this referral I was put on a heavy dosage of steroid tablets to control the flare ups. Obviously this wasn't the best for my body or a long term solution so I had to wean off them, finding my skin went back to the exact same condition as before.
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Left- During a flare up, Right- 24 hours
after starting steroid tablets |
Meanwhile my mum called up the specialist only to find it would be a four MONTH wait, something I just couldn't do, so we weighted up our options and decided to go private. This was the BEST THING we could have done. (If you are ever lucky enough to be able to do this, I would absolutely say go for it, we paid for one consultation and the rest of my treatment was then through the NHS, so free!) I was given a consultation within weeks, and offered all kinds of new treatments we didn't even know about previously. I was admitted to hospital the day after the consultation for a week in order to get my skin under control. Luckily my skin responded well to the constant treatment of creams, lack of stress, and rest, and I was able to leave after five days (thankfully, as there was no WiFi?!).
On my last day in hospital I started light therapy (UBV). I'm not going to go into explaining this in depth here, that's another post but
here's a link if you want to know more
Light therapy is known more commonly for treating psoriasis, but has been known to improve eczema, but takes longer to show results. So far I have had five treatments, and a combination of the LT and the new moisturizer and steroid creams, I have not had one flare up since leaving hospital (touch wood!)
So yeah, that's where I'm up to now. I visit the hospital three times a week for the therapy for three months, with the entire treatment lasting 36 visits. It is a treatment that requires commitment and effort to travel to the hospital that regularly, but honestly I am so willing to do it if it keeps my skin at the condition its in now.
I hope this post helps people understand a little more what its like to have had eczema my whole life, albeit it is rather brief, other posts will go into more factors in depth.
Keep fighting the itch,
Soph x