Wednesday 24 March 2010

Catching up

I’ve got a bit behind with blogs this last week or so with not being so well. Basically, I had a bad cold and it really took it out of me. It’s been ages since I had a cold like that and it knocked me for six really. Started with my knee blistering, which cleared up then soon after the cold hit me. I’ve been generally run down though, very weary and had a blocked ear so I think it must’ve been a head cold. I went to the doctors and he prescribed me some ear drops which haven’t really worked and I’m still having trouble so it looks like I’ll have to go back to the docs Anyway...

While I was at the doctors getting the ear drops, my main reason for going was to get the results of my blood tests. I phoned up the week before to get the actual results and was asked to make an appointment with my doctor as there was a problem with my thyroid apparently. He explained that I am bordering on having an under-active thyroid. He said ‘bordering’ because it is not quite under-active but my pituitary gland is over compensating for the thyroid gland not functioning as it should, hence why I’ve lost weight etc over the last few months or so. The doctor says it would be pointless to treat it yet as there is a possibility that it could correct itself, so he wants to give me another blood test in two months to see how it’s going and we’ll take it from there.

The thyroid problem will explain a lot of things though, symptoms I mean. Generally run down, dizzy spells, tired all the time, loss of appetite (which is soooooo not like me!) etc. This has been going on for a while now, I know something isn’t right somewhere, and I‘d be lying if I said I wasn‘t starting to get worried - then again if you know me well you‘ll know that I worry about everything and anything lol . The doctor also said that the thyroid problem is a common thing after having a baby too which could also be the cause in my case.

In other news, just to update those of you who read my blog about my hospital ‘experience’ regarding having my bloods done. I’m pleased to say that I got a call to tell me that my complaint has been dealt with. The lady who rang from the hospital’s complaints department told me that the nurse in question had been spoken to about her attitude. I ended up telling my side of things over again because the lady from the hospital asked me a few questions to confirm a few things from my side regarding some things the nurse had said from her side of the story which weren’t exactly true (I wasn‘t impressed shall we say grrr...). I put it right though and told my side, and told them exactly how the nurse made me feel. The lady from the hospital was lovely though, we ended up having a good chat about things and she was very understanding. She asked me if I wanted to take the complaint any further and I said no. I just wanted to make them aware of what had happened, as I don’t want it happening again to someone else. I was also told during this telephone conversation that, notes were NOT taken about my condition etc as I assumed they did when I first rang the hospital to make the initial appointment for my bloods. I was under the impression that, as the lady I spoke to at the time asked me to spell the name of my condition, I thought she was making notes. I explained my condition pretty much from scratch which can take a while shall we say, as it was important I felt, that she and the staff there were made aware of what to expect when I arrived for my appointment. But it turns out that this wasn’t the case. Apparently all that was written down was ‘Uncomfortable with needles. Cream’ or words to that effect. So I said to the lady from the hospital complaints department, ‘so you mean to tell me that I explained everything, went through it all for nothing’ and she said ‘it appears so, and I apologise for that’. I made it clear that I wasn’t impressed by this. Like I say though the lady from the complaints department was lovely, and she said that the nurse in question would be spoken to again following that conversation on the phone. She apologised sincerely for the distress it caused me and ensured me they will take measures to ensure this doesn’t happen again. Oh well, it’s over with now onwards and upwards.

Saturday 13 March 2010

Media Frenzy

I thought this would be an interesting issue to write a blog about, as it’s something that’s been on my mind on a regular basis, not in the sense that I dwell on it, but just something that springs to mind now and again. Mainly when I see a feature in the media.

Several times now I have been approached by journalists asking if I’d like to share my story of living with Ichthyosis. There was once a time when I wouldn’t have hesitated, and I have already shared my story several times in the local newpapers, even a national women’s magazine. However, from the experiences I’ve had from sharing my story with such publications, I have learnt a lot about how the media works in both a positive and a negative way.

The way my story was written in these publications in the past was only an interpretation of my experiences. I was often misquoted, the explanations and descriptions of some aspects of the condition were inaccurate, exaggerated or completely misinterpreted altogether. Things were turned around to make the journalist sound good, to even make them sound ‘educated’ about the condition, yet they couldn’t possibly understand. Fair enough, they may well have done their research by talking to me but spending an hour with someone doesn’t make you an expert all of a sudden. I’m not saying that’s what all journalists tend to do, but I do find it’s what happens more often than not.

We are all well aware of how the media works in the sense that the more shocking the headline or story is, the more attention it will draw from the public. This may well be good from a sales point of view, but what about the overall affect/impact it can have on those involved - the people whom the stories are being written about. Sadly this is something I feel will never change, and something that nothing can be done about. By sharing any story with the media there is always the risk of it being blown out of all proportion.

The most recent approaches I’ve had from journalists have also offered money for my story. This is something I totally disagree with. When I share my story I like to think I do it for the right reasons, to inform, raise awareness and educate people about the condition. My story is just one example of what Ichthyosis can be like to live with, but there are so many different forms of the condition and even those with the same form of Ichthyosis I have (Bullous/BIE/EHK) suffer and cope with it differently to the way I cope and how it affects me. We’re all individuals at the end of the day... but we’re also humans!

This leads me onto the next issue regards to the media and their ‘shock tactics’. Whilst on the net over the last couple of days, I’ve spent a few minutes researching for articles about Ichthyosis and I found a few but not that many. One that did stand out for me which I found absolutely appauling was this one: **you may have to copy and paste the link**

http://www.samaa.tv/News17704-Baby_born_with_rare_genetic_skin_disorder.aspx

It’s about a baby born with Harlequin Ichthyoids (one of the most if not THE most severe type of Ichthyosis) and the report truly is appauling. They basically had the child on show like some sort of freak show it's shocking. I don't think I'll ever understand the media and their need for shock tactics, yes I know it brings in viewers and readers, but at the same time, who is most in the wrong in that respect? the people who put out the reports, those who write the articles or the people who read them? It's a fine line really, and it's something I feel will never change sadly. In a sense I suppose you could compare it to rubbernecking, or like when there’s been an accident on the road... Why is it that people still insist on going over to have a look at the gruesome scene despite the fact they know it will shock them? Maybe that’s a bad comparison I don’t know but it’s the only one I can think of off the top of my head - apologies if I’ve offended anyone with this.

I’ve recently shared this issue with my friend Carly (yes I do consider you a friend Carly, even though we haven’t known each other that long). She too has many of the same thoughts as I on many issues regarding Ichthyosis and the way it is portrayed in the media. She also pointed out to me how she finds that people who approach her, saying they saw something about Ichthyosis on TV or in the newspapers, and that by reading about it or watching it on TV they somehow assume they know ’everything’ there is to know about the condition, and assume there’s nothing else to know. They don’t realise just how wrong they can be in making such assumptions.

Carly’s blogs about her experiences of living with the Ichthyosis are truly inspirational (I know you probably hear that a lot from people Carly but it’s true, especially for fellow sufferers). Please feel free to read Carly’s blogs here: http://carlyfindlay.blogspot.com/ They are well worth the read, she writes so honestly and with great spirit and has a fantastic sense of humour. I’ve also learnt a lot from her blogs about the type of Ichthyosis she has too, as it‘s a different form of Ichthyosis than I have. She also tells me she’ll be writing a blog about the issue of the media too, so please be sure to check it out as I’m sure it’ll be a much better read than this one hehe.


Like Carly recently said to me though, our stories are best told by us and I totally agree. After all we’re the only people who really, truly know exactly what it's all about and what it's like to live with Ichthyosis. And what better way to do this than by writing about it in our blogs. That way, we have total control over what is said and it's in our own words to the final letter. Don't get me wrong, I'm all for raising awareness, as long as it's done in the 'right' way if there is such a thing. The way it is done is really important I feel. I’m more than happy to share my story, as long as it’s in my own words and told by me. Like I say, I’ve learnt a lot from past articles.

Just before I sign off from this blog, here are a couple more links to some newspaper articles for you to look at. Please if you can, take the time to have a look as I’m sure you’ll find them of interest. **you may have to copy and paste the links**

http://www.thesun.co.uk/sol/homepage/news/2872732/Fish-boy-stuns-Chinese-docs.html

http://www.mirror.co.uk/life-style/real-life/2010/03/04/netherton-s-syndrome-a-mother-s-story-115875-22086254/

http://www.itv.com/lifestyle/thismorning/healthandwellbeing/nethertonssyndrome/


Thanks for reading

Saturday 6 March 2010

Knees Up

Since the hospital visit on the 22nd Feb (including the days leading up to it), my leg hasn’t been too good. It started with a small blister on the side of my knee and was really sore, stung like mad and was really painful, even though it was only a small one. Funny how it’s always the small ones that seem to be the most painful isn’t it?...

Anyway, by the time I woke up the next morning it seemed to have calmed down and it wasn’t as sore. But by that same evening, another blister surfaced, this one was bigger and more painful and it felt like my leg was on fire where the blister was. This same ‘process’ went on for several days. Up and down, up and down. Just as I thought 'ah, it's calming down' it started again, can't always get my hopes up when it 'seems' to clear up. It doesn't always necessarily mean it's cleared up altogether if you know what I mean?

After my hospital visit/experience though, well I’m not blaming the whole incident for my bad knee, but it certainly didn’t help as stress definitely seems to be a significant factor in triggering off the blistering as well as general infection these days. My knee just got worse, not bad enough for antibiotics but let’s just say it was very painful and generally made me feel ill within myself, as the blisters often do. It was too painful to straighten my knee at one point.

I’ve posted a few photos of my blistered knee. It’s the first time I’ve ever shared such pictures of my condition with my friends, let alone the public (apart from a couple I posted on my website when I felt brave enough one day). Yes the photos to some people may be a bit graphic, but at the end of the day I and no-one else can control how my condition is or can be. It is very unpredictable, as are the blisters. I never know where, when or as to how bad they will be. It’s just a case of taking it as it comes and dealing with it as and when. I've never known any different, and the blistering is the norm for me all part of the Ichthyosis.

So, apologies if I offend anyone by posting these pics, but as I’ve said previously, I started this blog not only to keep my friends up to date with what’s going on in my life (to a certain extent), but also to share my experiences of living with Ichthyosis and to raise awareness. I therefore, feel it is very important to tell/show it like it is, so that people can better understand just exactly what it means to have Ichthyosis (in my case Bullous/EHK) and what is involved. I now also have a bad cold which I think has developed in response to the blister. Sometimes when I get a flare up of blisters it can mean a full blown cold will soon follow. Somtimes it can take a while to develop into the cold, sometimes as long as a few weeks, which is what has happened here I think. This winter has been really rough here in the UK this year, and I've found it difficult if I'm completley honest because it's really hit me hard as regards my skin. But hey-ho, tomorrow is another day :-) (the photos were taken on the 4th & 5th march 2010 by the way).








Thanks for reading