Flying Visit

Hi folks, I’m back after a long absence. I know it seems like I keep repeating myself when I say that things here have been hectic, but yet again this has been the case and time has caught up with me. So please bear with me.

Going back to May (yes, I know...), on Sunday 23rd May my father in law took part in the Walk for Skin in Manchester (in association with the British Skin Foundation), to help raise money for the Ichthyosis Support Group (ISG). Also taking part was Katrina Hughes, her partner Kevin Tuohy and their daughters, Abbie, Ellie and Hannah. Ellie is 3 years old and like myself has Bullous Ichthyoids (EHK). It was a great day, the weather was perfect if a little too hot for me, so there’s no way I could’ve done the walk myself. Ellie was a star though, she completed the walk along with her family in the heat and she did fantastically, far better than I ever could have.







To show our support, myself, my husband, my mother in law, my Mum and our good friend Joanna went along to meet them all at the finish line at The Lowry. We al had a lovely chat at the end and are keeping in touch which is great. My father in law raised £140 for the ISG and Ellie’s just giving page continues to exceed her £500 target, which is fantastic. I’d just like to take this opportunity to say a big thanks to my father in law for taking part in the walk for skin it means a lot to me. Also a big thank you to the Tuohy family and a big well done to Ellie, she truly is her Daddy’s little warrior. Big thanks should also go to everyone who took part in a walk for skin event all across the UK.

In other news, we have recently moved house. To cut a very long story short and without going into too much detail. We were not happy where we were living. It was on a main road, we had major problems parking our car (we had no drive or garage and added to that the fact that we had national express coaches parked outside or very close to our house virtually every night for weeks on end, it was ridiculous to be quite honest but there was absolutely nothing we could do - although I did put in a complaint to National Express about the situation and all I got was a reply telling me that the vehicles I mentioned - including their registration numbers - didn’t exist on thier records therefore must not be National Express coaches LOL how do they explain the fact that they had the usual ‘National Express’ logo all over the sides of the coaches and the 540 London as they usually do in the front idiots!! Anyway.... Enough of that lol). Also where we were living it wasn’t all that safe for our little boy especially now he is toddling, being on a main road and all that, and there are other reasons we weren’t happy there too but I won’t go on. Anyway, where we’ve moved to now is much nicer, much quieter, we have a lovely garden and our own drive. There’s even a lovely little park next to the house for Daniel to play on which is great, and he loves it so far.

Also since we moved, Daniel has celebrated his first birthday which was lovely. We had a combined birthday/housewarming party for him at our new house and all our family and our good friend Joanna joined us to celebrate. Everyone had a good tie especially Daniel which is the most important thing.



Hopefully it won’t be too long before my next entry. Until then..... Thanks for reading

Back to School

Well, I’ve done it, just started two courses with the Open University yay! The courses officially started yesterday (Sat 1st May) and I’m very nervous but at the same time very excited. I’m studying ‘Listening to Music’ and ‘Shakespere: an introduction’. It’s been a few years now since I did any studying, in fact the last bit of studying I did (completed the courses in full) was with the OU in 2004. Back then I did two short courses in sciences ‘Studying Mammals’ - based on the popular tv series with Sir David Attenborough, and ‘Global Warming’. That was back when I was really interested in conservation and animal behaviour. I still have a keen interested in these subjects, but now time has gone on and I really feel it’s time to seriously knuckle down and aim for a degree.

After thinking long and hard over a long period, I decided to follow my heart and study towards a degree in Arts & Humanities, or maybe an open degree where my subject area will be more varied). I know it’s going to take time and patience and that it won’t by any means be easy, but those of you who know me well will know I’m a determined soul and will give it my best shot.

There are so many subjects I’m interested in though, and over the years since leaving school in 1994 I’ve done many various college courses including media studies, business administration and sound engineering to name but a few. But if I was asked where I would like to be job wise in a few years, I think I’d have to say either as a sound technician in a theatre, a charity fundraising officer or teach music in some way (maybe teach music to children with special needs). I also wouldn’t mind trying my hand at writing, I know I’m not that good a writer as I know I tend to ramble on and on a bit in my blogs and they can be a bit long but..... I’m sure I can learn these skills as I go along with my studies. I hope to complete a course with the OU in creative writing at some point too. But alas, I’m starting from scratch at the moment, and so have to take things step by step.

I chose Listening to Music, for obvious reasons - my love of music. And as for Shakespere, well I’ve always been curious about the subject but sadly can’t recall even studying him in school which I think is really quite sad - English was my favourite subject at school too. So, I’d like to give it a go and see what it’s like. I know at the moment it’s all a bit overwhelming, and it may take me a bit more time than the other students on this course to take things in, but I’m there for the same reason as they are, to learn. Hopefully we can learn from each other too. I must admit I did feel a bit intimidated and overwhelmed by the Shakespere course when I was reading the course website and lots of the other students were already talking ‘Shakespere’ and had said they’d already made a start on the course. I thought ‘ooo-eck, I’m going to be so behind here, I haven’t got a clue what’s going on’ but the more I read, and started to join in with the discussions the better I felt.

My only worry now is fitting everything in, my daily routine looking after my skin is a challenge in itself, but there’s also all the other usual every day things to do and of course my little boy to look after. I’ve had a brief chat with another student who has three children and is doing a degree in Child Psychology I think and has started the Shakespere course in addition. She’s been great in reassuring me it can be done, and I feel much better for that so thank you :-)

Anyway, onwards and upwards. Can’t wait to really get stuck in with these courses, I just hope my worries and fears about it all fade soon once I get going with it all.

Wish me luck :-)

Ichthyosis Awareness Week UK

From the 10th until the 17th April Ichthyosis Awareness Week took place here in the UK. Ever striving to do my bit to contribute to raising awareness of Ichthyosis, my friend Joanna and I decided to share our story of finding each other and meeting for the first time in 25 years, with two of our local newspapers. You may recall from a previous blog ’Long Lost Friends’ that I wrote about our story? Well we thought it would be a great way to help raise awareness of Ichthyosis.

Some of you may also remember another previous blog entry entitled ’Media Frenzy’? This was my take on coverage in the media of Ichthyosis in particular, and the way in which it can be sensationalised, stereo-typed, misinterpreted and misunderstood etc. Despite having strong views about this issue, on the other hand if, as I said in my previous blog, the story is gone about the right way and is told in an appropriate way with all the facts correct and it genuinely serves it’s purpose to raise awareness then I am all for it being published. The problem I have is mainly with the tabloid papers, who use shock tactics in their headlines to draw readers in.

Joanna and I both agreed to go ahead with our story for the local papers (The Bolton News and Manchester Evening News), in the hope that it would be written about in a more sensitive way. Of course as with any story told to the media there is always that risk of what you say being misquoted, misunderstood and/or exaggerated so much that it ends up not educating people (which I feel is the key to informing people and helping them to understand about our condition), but ends up scaring people away - I don’t know, maybe I’m paranoid but....

On 16th April, our story was published in The Bolton News. Unfortunately the story is not available online, which I was very much so hoping it would be so that I could share it with my online friends. I keep checking The Bolton News website but to no avail. So, if you would like a copy please feel free to email me and I will send you a copy in pdf file if you like (this is the only format we have it in at the moment, but if anyone can help us out to convert the file into a different file we‘d be most grateful). You can email me at: friends-of-ichthyosis@live.co.uk

We were both very pleased with the article, however we felt a better picture could’ve been used as the photographer took loads - and I’m sure Joanna agrees with me there ;-) The only problem I had with the whole article though was the title. I’m sorry if that makes me picky or fussy or a perfectionist or whatever, but the headline of the story was ’Old friends are united by rare skin disease’. For me personally the word ‘disease’ stands for an illness that is ‘contagious’ which is something Ichthyosis is most definitely NOT! Maybe I’m now the one misinterpreting things? I know people interpret things in different ways, but this is something that I’ve always felt uncomfortable about. I suppose somehow by calling my condition a skin disease, it made me feel like I was dirty somehow. Even today I still silently cringe when it’s called a disease. I have looked up the word ‘disease’ in the dictionary and it states “Disease - affliction, ailment, complaint, disorder, illness, infection, malady, sickness” so maybe it’s right to call it a disease, I just prefer to use some of the other terms such as disorder or condition. I also gave the reporter my website address: www.friends-of-ichthyosis.webs.com and the address to this blog but neither were printed in the article. But not to worry, the important thing is that the ISG website got a mention. I was hoping to try and get more people to view my blog, but I honestly don’t know if I have.

Like I’ve said before, and I’ll say it again education is the key and I want to do all I can to contribute to this. If it means a slight ‘misprint’ or whatever its a chance you take when sharing your story with the paper, it’s to be expected actually. So there’s no point really moaning about it afterwards - even though it sounds like I just have sorry folks. We are still waiting for our story to be published in the Manchester Evening News but still no joy. We were told by the reporter that it could be anything up to several weeks before it's published due to priority stories/coverage, so I suppose we’ve got to be ‘patient’ (story of our lives eh Joanna? lol). I’ll post about it in the blog though as soon as we know anything regarding that one ;-)

Along with the Awareness Week, there was the Ichthyosis Skin Relay organised by the Ichthyosis Support Group. During this event members of the ISG and committee travelled to various hospitals and dermatology clinics around the UK putting up posters and leaflets in their departments. I would like to take this opportunity to say a huge thanks and congratulations to all who took part. Your hard work is much appreciated and you know what they say... “Every little helps”

I've also recently been asked if I'd be interested in taking part in a possible tv documentary, I very much doubt I'll be taking part though as I'm not too keen on the idea and for various other reasons.

Thanks for reading

Treatments & Prescriptions

I thought I’d write a blog about prescriptions so that others can find out how we, as Ichthyosis sufferers go on as far as getting prescriptions are concerned, regarding our creams, emollients etc. Also in the hope that other sufferers might contribute their experiences via comments here, so we can see how different places/countries policies’ are regarding prescriptions etc. I can obviously only speak from my own experiences so here goes.

The amount of treatment/creams, emollients etc that I need is huge. Every day I need to apply creams to every inch of my body at least twice a day. That was the case when I was using Diprobase cream, which I had been using for several years up until a couple of weeks ago. I found that because I’d been using the same cream for so long, it became less and less effective in treating my Ichthyosis. In other words, I get little difference in the way of dryness of my skin once I applied the cream.

A couple of weeks ago, my routine changed and for the better I’m very pleased to say. I was prescribed two creams to try Dermol 500 (which contains an antibacterial agent/ingredient)

and Doublebase gel cream.

Through trying different methods of applying the creams over the last fortnight or so, I have found a method that works best for me. This method involves, showering/bathing using the Dermol 500 (Dermol 600 emollient in the bath) as a soap substitute, I then pat my skin dry once my skin has been rinsed. As soon as I get out of the bath/shower I then apply the Doublebase gel cream whilst my skin is still soggy. I then wait for about 10 minutes or so to allow the cream to soak in, before re-applying another coat of Double base (sounds like I’m redecorating lol). I then wait another 10 mins or so to allow the cream to soak in again, before I get dressed.

Using these creams, especially the Doublebase, my skin feels great straight after using it, and I also feel much better within myself too. I feel like I can move for a start!! When I’ve applied this cream, my skin feels really well moisturised, really clean and refreshed. I know that using these creams in the summer will help temperature wise too, because with Ichthyosis we can’t control our body temperature. The creams will help in that they will be cooling and refreshing once applied - however this coolness will not last very long at all.

Now unfortunately, due to the nature of my skin and the way it functions (or lack of functioning properly I suppose I should say), no sooner have I applied the creams I find that the second the air gets to my skin the drying process starts again immediately - even more so if there’s so much as a breeze outside. Therefore, I need to reapply more Doublebase again.

Throughout the day, every day, I need to apply the creams anything up to four or five times a day (depending on how often I need it, and how my skin is at the time). Yes, this can be a tedious and time consuming task, but the benefits of how good the creams make my skin feel makes it worthwhile to me. I don’t mind my new routine. Now I’ll be honest, it’s not easy having to keep applying the cream throughout the day especially fitting it in around everyday life and looking after my young son too, but I’ve accepted that this is my way of life. Personally, I think that once you ‘accept’ things the way they are, it’s then much easier to adapt and work with it rather than against it - if that makes sense?

As I need to apply my creams so often, I’ve found I am using one 500g tub of Doublebase in just 4 days. Therefore, regular repeat prescriptions are necessary. Thinking about it, the need for these creams is just as essential to me (or any other Ichthyosis sufferer for that matter) as any other medication is essential for anyone with a serious illness. Basically, cream is my oxygen it is my lifeline I need it to survive. I know that sounds a bit dramatic and some may think that’s taking it a bit far.... But think about it...... It’s true! Without the creams to keep any kind of moisture on my skin, well it just doesn’t bare thinking about. I have gone without cream on just a couple of occasions throughout my life, and let me tell you I paid for it!!! The agony is unbearable, skin splitting in every crease, hardly able to move especially the joints. The only way I can really describe the dryness is the feeling of chalk dust - you know the feeling of chalk dust on your fingers when you get it on your hands? Well imagine that but 10 x worse and on every inch of your body and you’ve pretty much got the jist of it.

Back to prescriptions though, when I need more creams, I need to go into my Gp’s surgery which is in town (only about a mile away so not far). I drop off the prescription slip there with the items I need ticked off the list, then I have to wait 48 hours for the prescription to be processed and signed by a doctor. I then go back to the surgery 2 days later to collect the prescription and take it to the pharmacy which is downstairs in the same building, and wait however long it takes for them to process the prescription (I’ve had to wait around 1 hr 45 mins in all for one lot before now). Then sometimes when I go to collect my items they don’t always stock it, or enough of it and I have to go back once it’s in stock - which is a bit frustrating when you really need the stuff and you’ve already been hanging around for God knows how long, make your feet sore by having a little walk into town to pass the time while you’re waiting, only to go back and find they don’t have everything and have to go back again etc. But hey-ho this is the norm for me, this is the procedure I have to follow as it’s the same as everyone else and I respect that. I’m writing about this just to inform people this is what I have to do every time I need more creams. And this whole proceedure I have to go through every two weeks, which is how often I need to order a repeat. I don’t know why though, but I feel so uncomfortable having to order so much stuff so often, like I’m a nusciance. I shouldn’t feel like that I know, but I do. It’s really difficult to explain. I’m sure there is more I could talk about regarding this subject, but I feel I’ve said enough this blog is too long as it is lol sorry folks. I just feel it’s important to let people know exactly what it is we have to do every day of our lives... Just to live pretty much, putting it bluntly. Speaking of which I need to re-apply some cream now, skin’s getting a bit tight and ‘chalky’.

So.... What is the proceedure where you live? Do you have problems? Is stock supplies a problem? Let us know, share your experiences. Don’t forget you are more than welcome to share your experiences on my website too at www.Friends-of-ichthyosis.webs.com

TTFN!!!

Mind's gone blank & New treatments

Been wanting to write a blog for ages, well I say ages, just since my last blog entry. But for some reason, despite the fact I have plenty I could blog about my mind has gone totally blank and I have no idea where to start. Who'd have thought... me with nothing to say lol oh well...

It's been a bit of an up and down couple of weeks, but mainly ups I'm pleased to say. Starting with last week, I had a couple of blisters on my right leg on the inner calf and just behind my ankle (not that you needed to know that but....). Here's a couple of photos of the blisters.... I know I've said this before but I'll say it again. Some people may find the photos a bit... er... 'graphic' and I've got to admit I've always been wary of letting anyone see my skin when it's bad - one of my weaknesses, I care too much about what other people think really - but the whole point of me doing these blogs is so that it's an opportunity for me to show people exactly what it's like to have Ichthyosis (Bullous) and it's so difficult to explain when you can't 'see' me. So photos is the best way, and really I wouldn't be 'telling it like it is' if I didn't show such photos. So apologies in advance if the pics offend anyone, but hey ho this is the norm for me as regards my condition, it's the way it is and there's nothing I or anyone else can do about it so....





These blisters are now almost healed now, which is good. I've recently had an appointment at a local dermatology clinic too which went really well I'm pleased to say. I haven't seen my own dermatologist for 4 years, so I've been discharged from there. I'd been a patient of my own dermatologist since the age of 3 too! I was doing ok though as regards my skin and I really felt nothing much more could be done and I was happy with the treamtents I was on at the time. I therefore didn't want to take up appointments that could be needed by others more than myself, another reason I stopped going.

The treatment I was using was Diprobase cream which I used for several years. But more recently I've just felt it wasn't of any great benefit for me. Especially with the really bad winter we've had this year here in the UK. The cold weather has really affected my Ichthyosis drying it out much more rapidly than it usually does (which is bad anyway). I felt it was time for a change and to see if I could possibly try something new (or something new to me anyway). I couldn't see my own dermatologist as I'd been discharged, so had to be referred to another clinic first to be 'assessed' which I thought was a bit daft, but me being me went along with it as I know it's probably their usual general procedure etc.

Basically, I saw the dermatology nurse at this clinic and I can't begin to tell you how good I felt after this appointment. The nurse was great, couldn't fault her, she was so helpful and has given me lots of sample creams to try also some cream to try as my main creams. She gave me Double Base and Dermol 500 to use as a general cream all over, also to use these while in the shower or bath as a soap substitute. I then apply the Double Base straight away as soon as I get out of the bath or shower (using Dermol 600 emmollient in the bath too), then wait about 10 mins before applying the Double Base once again. The results of applying these creams has made such a big difference, and I love the feel of my skin afterwards. I feel like I can move for a start lol the joints being the most problematic, as the skin is so thick it makes mobility restricted. Using these creams also makes me feel really clean and refreshed after applying them too - with the other cream I just felt like I was applying and applying and just getting clogged up in a way (it's hard to explain really). I know these new creams I'm using will also benefit me in the summer too, as they are lotions so when applied it will feel really cool and soothing.

The only problem I do have is that the effects from these creams doesn't last very long. I'm finding that I'm having to re-apply the creams several times a day, but I tell you what, it's worth it because the benefits of how it makes my skin feel far outweigh the actual process of applying, even though it is time consuming. It's a whole new routine for me and will take time to get used to, but I'm getting there.

To help try and retain the moisture from the creams, the dermatology nurse I saw last week has suggest I try a body stocking, like a bandage stockinette but for my body. A bit embarrassing, but hey who's going to know other than me that I'm wearing it. I'm currently waiting for the stockinette to be delivered to the pharmacy so I can pick it up, as it has to be specially ordered apparently eeek! no idea how long I'll have to wait for it. The dermatology nurse also said something to me that I've never had said to me before by a medical professional... she said that if ever I needed anything or if ever I was feeling low and my skin was getting me down, that I could call her. I honestly can't begin to tell you what a relief that felt. I really felt that she was genuinely interested in my condition and fully understood where I was coming from. That's not to say I didn't feel the other dermatologists I've seen in the past didn't do the same because they've only ever done what they felt best for me, and have helped me greatly I can't thank them enough for how they've helped me over the years. But to have someone, a medical profession close to my own age that I can talk to means a lot and has boosted my confidence believe it or not. And has given me the kick I needed to get my motivation going again.

I know something else too... I'm going to go through a hell of a lot of the creams too but that's going to be another blog entry all of it's own. I feel it's important to bring up the subject of prescriptions and what we as Ichthyosis sufferers have to do, use and the amount we need etc and the fact that different places have such different rules/regulations as regards prescriptions etc. But like I say, another blog.....

Apologies for the long blog, didn't intend for it to be this long, but oh well. Thanks for reading, if you managed to get this far lol I really appreciate it :-)
Take care
Mel xx

Long Lost Friends

Well, what a couple of weeks it’s been. I’ve got behind with blogs etc again lately, mainly because I’ve been busy, but also by the time I’ve had the chance to write a blog I’m just too tired. Anyway, something happened over this fortnight and I’d like to share the story with you.

In 1982 my Mum was introduced to two families who had children with the same type of Ichthyosis as I have (Bullous Ichthyosis). One of the families had a young son with the condition and the other family had a young daughter with the condition. Even less was known about our condition then than is known now, and our parents thought they were alone in having children with this debilitating condition. That was until our consultant dermatologist introduced us in 1982.

As I was so young at the time of our meeting (I was around 4 years old), I can’t really remember much about it and therefore thought that I’d never met or seen anyone else with the same condition, until I attended the ISG (Ichthyosis Support Group) first National Day in 1998. Over the years my Mum often spoke of the families we met back in 1982 though, and she often thought of them and wondered how they were getting on. After this first meeting we sadly lost touch, and have since then been trying to find each other.

A couple of weeks ago, I received a message on face book from someone named Joanna, and it turns out it is the same Joanna that my family and I met all those years ago. We are thrilled to be back in touch with each other, and we also found out that after all these years we live not far from each other too. I replied to Joanna’s message straight away and since then we’ve kept in regular contact, catching up and have spoken on the phone a few times too. On Good Friday (2nd April) we finally met, and I can’t tell you how lovely it was to finally meet again after all this time. Now, this may sound daft to some people, but it felt like I had found a long lost sister. Even though we only met the once when we were really young, when we met on Friday it felt like we’d actually known each other all that time and hadn’t been out of touch (if that makes sense?). It was an emotional reunion for both of us as you can imagine, and we got on so well and found we have a lot of the same interests including the same taste in music (mentioning no names *cough* Darren Hayes & Pink lol)and we both love 80's music too.

We’re definitely going to keep in touch and I know we will become firm friends. We still have a lot of catching up to do, but we have plenty of time for that now. We now both have someone close to home who we can talk to, someone who understands what we go through with Ichthyosis. We are also planning to start our own kind of support group in the Manchester, Bolton and surrounding areas (as we know of a few more people affected by Ichthyosis in the area now too). In the hope that we can bring fellow sufferers together to share their experiences, offer support, information, organise events and meetings and generally just be an ear or shoulder for those affected by the condition. Just in case you haven’t seen it here’s a link to the website:

Ichthyosis Awareness Week is coming up here in the UK, and we will be doing our bit to contribute to that - but that’s another blog which will be coming soon.

I’d like to say a huge thank you to Joanna for getting in touch. I can’t tell you how happy I am that you did. You are a wonderful person and I am proud of you too. You may not realise or believe me when I say this but, you inspire me. Sorry to get all soppy but it’s true.




Thank you - Friends for life :-)

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.

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

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

Anniversary

I can’t believe it’s 12 months since our wedding day. Today is our first anniversary and blimey has the time flown. My husband and I had a wonderful day, spent with our loved ones and friends. Memories of the day will forever be in our minds and our hearts. And I’d like to take this opportunity to thank everyone who shared our special day with us, everyone who sent messages etc and to those who have sent messages today.

When I think back over certain times in my life, I can honestly say hand on heart, that I never thought the day would come that I would get married. Of course it’s something I always hoped for, but meeting that special someone who loved me for the person that I am I thought would never happen. Going back to life as an Ichthyosis sufferer, having the condition can affect many aspects of your life generally. It can affect things that a lot of people take for granted, also things that many people generally have reservations about or are self conscious about. Having Ichthyosis can have a great effect on your confidence and social life for example. Constantly aware of people staring (of which I’ve had my fair share of and still do), being judged because of the way you look on the outside etc. There are some really cruel and downright nasty people out there. But I put it all down to fear of the unknown, in some cases curiosity yes, but overall, it’s down to plain ignorance. I personally would much rather someone came over to me and asked me about my skin instead of standing there gawping - if anything I feel sorry for the person staring, they make themselves uncomfortable because they don’t know how to handle it. It makes me really angry sometimes too, because I sometimes think, hang on a minute I’m the one who has to live with it shouldn’t I be the one feeling awkward? But the truth is, I don’t. I’ve accepted my condition, and that it is a part of me and the way I am. But it’s not ’me’, by that I mean I’m not going to let the condition take over my life. I have Ichthyosis ’it’ doesn’t have me - if that makes sense? Other little things I used to get embarrassed about when it came to letting anyone into my life so to speak, were things such as ‘How are they going to react when they notice how my skin sheds so much?’, 'how are they going to react when my skin breaks' - will all this put them off? You ask yourself so many questions, but at the same time I learnt to deal with it in my own way and told myself, if they can’t accept me for the way I am then maybe they’re not worth knowing quite frankly.

Anyway, back on topic lol Right now I feel very lucky, and very blessed. As cliched as it sounds, I knew as soon as I met my husband we would be together. We’re a great team, and he’s accepted me for who I am ‘warts an’ all’ so to speak. I won’t go on too much about the details, as a lot of it is personal, but what I will say is that I am so grateful, for everything he is and everything he does for me. We also have a beautiful son, and again we are so lucky as there was a 50% chance that he too would inherit my Ichthyosis. He is clear of Ichthyosis and both he and my husband are my world.

Sorry for getting a bit deep and soppy but I just felt it was appropriate to talk about this as it’s our anniversary.

Thanks for ‘listening’ and most of all thank you to my hubby for everything!!!

Done & Dusted

Well, as talked about in my last blog entry I went to my GP's today regarding the dreaded blood tests. To say I was a bit nervous was a bit of an understatement really, but I knew I had to go in there with an open mind. I wasn't waiting long when I was called in. I began to tell the Dr about what had happened, right from when I had tried to get the bloods done at his surgery last week.

As ever he sat and listened to me, like he always does - like I said in my last blog I feel I can really talk to my GP about anything and not feel uncomfortable or embarrassed and I can say what I really think or how I'm really feeling without him judging me. As I was telling him what had happened, I almost got upset but managed to hold it together and his reaction... well let's just say he wasn't impressed.

He advised that I make a complaint about Monday's 'episode' and he was quite disgusted at the way I'd been treated. In his own words he even said "We all have off days, bad days, but we most definitely shouldn't bring it into work with us, especially where patients are involved. We should most definitely not take it out on our patients". He totally knew and understood where I was coming from, because he gave me the chance to explain things fully. He then said he'd try to get some bloods, which I didn't mind. I showed him the arm that the nurse tried last week, where the bruise was and where the nurse on monday tried to get bloods from even though it was VERY painful for me but she wasn't listening grrr... - I said to him "this is where the nurse tried to get the blood last week but couldn't and it left a bruise" and before I even said anything else about how the nurse at the hospital treated me as regards that he said "I'm not going to even attempt to get it where there's a bruise". I then went on to tell him how the nurse at the hospital was with me as regards that arm and he just kept shaking his head, he couldn't believe it.

Anyway, he tried the other arm, I just closed my eyes, turned away chatted at about a million miles an hour about nothing so to take my mind off it and in the needle went. Although the blood was a bit slow at first it was soon over within just a few minutes. I was completely fine. Now whether it was because I knew my Dr and he was fully aware of my condition, and I just felt relaxed with him I don't know. But I tell you what, I certainly felt more relaxed and was really quite chirpy afterwards :-) I was quite proud of myself if I can say that lol

He gave me contact details of who to complain to, and he has told me that if for whatever reason I need to get bloods done again I should request the he does them and he'd be happy to do them for me, which is reassuring :-) He even apologied and I told him not to as it wasn't his fault. I said I didn't really want to get anyone into any trouble but he told me by complaining about the nurse I wouldn't be, it's not my fault and that she needs to be told about her behaviour and attitude.

All I can say is... thank God that's over with. I get the results next week... will keep you posted ;-)

Mission Impossible - Part 2

Went to the hospital yesterday for my appointment to get my blood test done. What can I say?.... Well let’s just say it was an ‘experience’. I arrived a good 10-15 mins before my appointment time, gave my form to the lady on the reception desk and took a seat in the waiting area... as you do. I was barely sat down 2 mins when they called me in. Oooh great I thought, will get this over with sooner than I expected.... How wrong was I?

Now, it’s funny really because as soon as I saw the lady who called me in and who was to take my bloods, I had a feeling I wouldn’t ’take’ to her. Sorry if that sounds judgemental or whatever, but you know when you can just tell whether or not you’re going to get on with someone... I have a good sixth sense in many ways (no I don‘t mean psychic lol), I mean I’m not just a good judge of character. Anyway, I went into the cubicle where I tried to explain my circumstances and my condition to the nurse, but to put it bluntly the nurse was too busy faffing around and didn’t show any signs that she was listening. I tried again, but nothing. She had me sit down, I tried to tell her how nervous I was and she said “ ok, is it because you’ve had a bad experience in the past?” I said “you could say that” I then went on to try and explain the problems I have when having bloods done because of my skin condition. I also went on to tell her that I’m not that fond of needles too, to which she replied “I'm the same when I go to the dentist” She had me roll my sleeve up took one look at my arm (the inside of my elbow area) and said “Oooh I can’t get it from there”. I was thinking... “that’s what I’ve been trying to tell you” and then she went straight for the vein which was clearly visable on my left arm - which incidentally is the very arm that the nurse tried to get blood from last week and it caused a bruise, (I’m not used to bruises myself again due to my Ichthyosis so it was really painful for me as the skin in that particular area is very thin). It wasn't the nurses fault though, it's just one of those things.

Again I kept trying to tell her that it was still bruised from last week, so was still very tender yet she still insisted on taking the blood from that arm. She just looked at me and said “ Ah, but there’s a good vein there” and I said “Yes I know, but it’s bruised, and the nurse who tried to get bloods from there last week managed to get some, but then it just stopped flowing”. She then said “the bruise is underneath” Then she looked at me as if I was trying to say she couldn’t do her job which I most definitely wasn’t, in fact I hardly even spoke as I didn't get the chance. It was very clear to me from the moment I walked into that cubicle that this particular nurse just wanted me in and out and then to get on with whatever else it was she needed to do. But without trying to sound like a complete wimp and yes I know that some of it is my own fault because of the experiences I’ve had as regards needles over the years (and there has been a LOT). I do tend to get worked up and upset and nervous, but as far as I’m concerned I think I’ve got every reason to be. And most doctors and nurses I’ve come into contact with who have treated me for whatever, have been very sympathetic, patient and have helped to reassure me and make me feel as comfortable as possible. The thing is, I can’t be rushed, not just because of my ‘fear’ but because I know my condition and I know that just because there’s a ‘good vein’ there, it doesn’t necessarily mean you’re going to get anything out of it. And that was the point I was trying to get across to the nurse but to no avail. She took everything I tried to say the wrong way, was very patronising and even looked at me as if she didn’t believe what I was saying about my condition. She looked at me in this way after a comment she made, she said “now come on, it doesn’t hurt you know” I said “ well actually yes it does hurt with my condition because my skin is very thin there” and she just gave me this look as if to say ‘yeah right ok whatever’.

By this point I started to get upset, and she went on to say “Now come on you’re getting yourself all worked up now” and that was it, I just burst into tears.. .. Hmmmm I wonder why!! She just made me feel like I’d been called into the headteacher’s office to be told off for something I’d not done it was awful. I was all for getting it over and done with, and she tried three times. But every time she went near me with the needle it was really painful because of the bruise. So she just said “No sorry I can’t do it, it’s not safe, you keep moving". So when she said that she couldn’t do it, I got even more upset. She said “You’ll have to come another time, we’ve got other patients to see” which confirmed my initial feeling that I was on a conveyor belt system. She even asked another nurse to help, I’m guessing to come and talk to me to try and take my mind off things while she took the bloods, but the other nurse said “Has she not got anyone with her? I can’t help you I’ve got this to do then I’ve got 2 patients to see”.

I’m sorry but whenever I go to the hospital, to the docs etc I, like everyone else have to wait. I’m not asking for priority treatment here, all I wanted was some compassion, some sensitivity etc. I certainly wasn’t planning on telling the nurse my life story but she NEEDED to know about my condition and my situation with having bloods taken. I did also initially try to explain to her that the lady I spoke to on the phone when I made my appointment told me to inform whoever was taking my bloods about my condition, but she just sort of blanked me. After the last attempt she did at taking the bloods she sat on her chair and as I was trying to talk through the tears after her upsetting me by her general ignorance, she looked straight at me and said “It’s not ME!” pointing to herself. I though well thanks a lot, I’m sorry to be such of an inconvenience to you. To my knowledge I assumed that when I first phoned up and made the appointment the lady had written down my details, including the name of my condition as she asked me to spell it for her.... Maybe I was wrong to make such an assumption. Both the women I spoke to on the phone when I made the appointment were really nice, and reassuring I really couldn’t fault them.

The nurse once again said “you’d better make another appointment on your way out” I said “No, I don’t think so. What’s the point because the same will happen again , my condition isn’t going to change between now and then” “well you’ll have to see your doctor then” I said “Don’t worry I will and I’ll make sure he knows about all this” after which I stormed out, in tears calling the nurse a stupid cow as I went through the waiting room.... Oopsies!! Sooo NOT like me!!! I was shaking like a leaf afterwards.

So, here’s me trying to be brave etc, and the woman didn’t even give me chance to take a deep breath before she tried to put the needle in. I’ve got more compassion in my little toe than she has in her entire body, she’s in the wrong job if you ask me. I mean yes, I understand that the nurses etc deal with patients with phobias everyday and that they’re really good at their job and I don’t doubt that for a second, but my point is everyone (patients) is different and they should take that into account when dealing with such patients. I was sooo angry and upset that I felt like getting onto the phone to my GP and telling him about what had happened. I also felt close to reporting her because of the way she made me feel, she made me feel like nothing, like I was ‘just another patient‘ (and yes I know I am just another patient to an extent) and she made me feel like the whole thing was my fault and my fault alone.

I phoned my hubby to come and pick me up as he’d dropped me off (again I wanted to try and be brave and go on my own) and he went with our little boy into town. I told him all about what happened on the way back into town, and he said it was a good job he wasn’t there really as he would’ve said something... Ooo-eck! lol We went back into town as I wanted to see my GP as soon as possible and to inform him of what happened. I managed to get an appointment with him for tomorrow (Wed 24th Feb) and the receptionist wrote down what it was all for etc. And she said she’d put me down for my GP to do my bloods for me (well to try anyway).

My GP is great though, he’s one of the best doctor’s I’ve ever seen and he always makes sure I have all the treatments I need etc. He’s seen my condition at it’s worst, and always tells me ‘if you’ve any problems, if there’s anything I can do just call.’ So I’ll just have to see what happens tomorrow. I think if anything I’ll probably feel more relaxed with my own GP doing the blood test therefore, hopefully more chance of him actually getting some.

What a day though!!! Talk about stress! Not long after I got home, I started with a big blister above my knee, which was really quite painful when I stood up and tried to straighten my knee or walk. I quickly started to feel off colour, feeling sick and underneath the blister felt like it was on fire. It was burning up. I ended up having an early night and slept right through. I was hoping I could take Daniel to the teddy club (toddler group) in the morning but I wasn’t feeling well enough. Just goes to show just how much an experience like the one I had at the hospital can take out of you. It might not seem much to some people but to me it was a big deal, by that I mean it took a lot out of me. I was just glad to get home.

Mission Impossible

Went to the doctors on Tuesday for blood test and stuff. Yet again, as per the nurses couldn’t get any bloods. I knew as soon as my GP mentioned about getting bloods done that it’d be nigh on impossible but I, as ever said I’d give it a go.

Let me explain. All my life it’s been extremely difficult whenever I’ve had to have blood tests because of my skin. I used to see a dermatologist once every 6 months in Cardiff, (from the age of 3 yrs to about 17 yrs old) and every time I went I had to have routine bloods taken. I absolutely hated it. Not just because I had a fear of needles but because they usually had to try more than once to get anything out of me.

I can’t have them taken from my inner elbow/arm because my skin is too thick there, and generally the doctors or nurses taking the blood won’t take it from there anyway because of my skin. So whenver they (the docs) try they tend to try and get it from my forearms or back of my hands.

When I was pregnant it’s routine to have bloods done and once again they had great difficulty in getting anything from me. The worst one was when I had to have a glucose test for gestational diabetes. They tried five times in different parts of my arms and hands. I just kept telling them to try though as I needed to get it done - for both myself and my baby. It was as if my veins were like taps, they’d get a little tiny bit then it’d just stop. It doesn’t help when the docs/nurses are telling you to relax, which in my case just makes me tense up even more as I’m trying too hard to relax lol. But yeah, it’s not a pleasant thing at the best of times for anyone I know that, but needs must.

On Tuesday I was having the bloods done so the doc could give me a general check, as I’ve been a bit run down lately (and have lost weight eeek! Not good especially for me - those of you who know me well will know how much I love my food). Been getting headaches, feeling dizzy and lightheaded, off my food etc. They tried 3 times to get bloods on Tuesday but no joy... Actually I tell a lie, they managed to get enough for a full blood count which was one lot, but they needed three different lots.

So, I had to make an appointment to get them done again at the hospital’s pathology dept. I had to be referred there a few times while I was pregnant as everyone who tried in neonatal etc had real problems getting anything. It wasn't their fault though, just one of those things - comes with the territory with Ichthyosis I think lol - Thankfully, in the pathology dept. they managed to get something more or less first time. So I’m hoping on Monday, when I go again that it’ll be ok. The person I spoke to on the phone when I was making my appointment was lovely though and reassured me that they’ll do all they can to make me as comfortable as possible. Just have to keep telling myself, if I managed a c-section I can manage anything hehehe.

When making my appointment for Monday, I again had to explain everything the problems I have and about my condition so they understood my circumstances better. I have to laugh though, because whenever I go to have bloods done, I always say to whoever is taking them (trying to) I hope you like a challenge. I'm still a bit bruised from Tuesdays attempts but not too bad, I’ve had worse put it that way.

Had a rough night last night though, up all night feeling sick and really bad stomach. Plus a large-ish blister appeared on my leg just below my knee. Have had a few small ones over the last few days. Why is it the smallest ones that seem to hurt and sting the most?? Oh well..... Just one look at my little boy and seeing his beautiful smile makes it all disappear :-)

I’m feeling a bit better today though I must say, just want to get Monday over with now.... Bring it on!

Dermday

Just had to post about this on the off chance that it may reach further afield, and hopefully to raise awareness. I know some of you may have seen my blog over on my website at: www.friends-of-ichthyosis.webs.com about the Dermday event which I attended back in July last year (2009). Well my husband and I have been invited to attend another one and I thought I'd post the info on here should anyone happen to see it who may be interested in getting involved and helping out. This is what I wrote in a recent message to all my members on my website.

"Hi Everyone,

Are you affected by Ichthyosis or know someone who is? Are you interested in helping to educate future doctors/dermatologists (student doctors) about Ichthyosis or related skin conditions? Then you may be interested in the following event.

On Saturday 13th March 2010 at Manchester Royal Infirmary in the UK, a 'Dermday' will be held. I attended a similar event myself in July last year and it was a very interesting experience from a patient's point of view and I really felt that I contributed to the education of future dermatologists and doctors. Many of the student doctors I spoke to (if not all) were not aware of Ichthyosis and were genuinely interested in the condition and learning about it. I got some great feedback which was very positive, saying the doctors there had learned a lot - mission accomplished! I have since been informed that the day overall was a great success - hence why more are being planned.

If you would like further information about what the event involves, please check the Friends of Ichthyosis website blog about the event at the following link:

http://friends-of-ichthyosis.webs.com/apps/blog/entries/show/1376502-dermatology-student-research-day-4th-july-2009

Or just go to www.friends-of-ichthyosis.webs.com and click on the 'Blog' link at the top of the page.

You can also contact me directly via my email address at: friends-of-ichthyosis@live.co.uk

So please, if you are interested or know of anyone you think may be interested do get in touch. The more people we can get involved the better. Education is the key in raising awareness of Ichthyosis and your help is vital and greatly appreciated.

Many thanks & kind regards
Melanie Bradley (Friends of Ichthyosis Admin)"

Just thought I'd share ;-)

Inspired

Today I read another blog and just had to write about it. It’s by someone I sort of know via the Darren Hayes FC days and she has the same skin disorder I have. Before I go on I would just like to say a big thanks to you Carly Findlay, for being my inspiration. Your spirit and inner strength is amazing, and I have learnt so much from you by reading your blogs.

Those of you who know me well will know, that ever since I can remember I have done a lot of writing, whether it be articles, essays for college, personal things (similar to a diary), letters to friends (handwritten) amongst lots of other stuff. Yet it is only these last few weeks I have ’discovered’ the great online world of blogging. I am now kicking myself that I haven’t done this sooner, because it’s a great way to communicate and to really express myself through writing, also a great means of somewhere I can go ’online’ to just be myself. Also ever since I became involved in the Ichthyosis Support Group in 1998 and was the Northern Area Rep, I’ve strived to educate the wider public about Ichthyosis. I have so far done this via articles, being invited to do talks for various organisations and at various fundraising events. And what better way to further educate people about Ichthyosis than a blog, like I say I just wish I’d thought of doing it sooner d’oh!

Oh well, I’m here now and I plan to make the most of posting blogs about various things - apoloogies if some of them end up being quite long too eeek! I know some of this I’ve already mentioned in my introduction of my blog, but anyway...

Reading Carly’s blog, well I can’t begin to explain really. Sorry if I offend you Carly, that is certainly NOT my intention, but so much of what you say I can relate to in many ways. Every time I read about what you’ve said about your Ichthyosis I find myself saying to myself, “that’s exactly how I feel” or even thinking “are you writing about me, or is it me writing this?” lol I also know that if any of my other friends who know me well, were to read your blogs they’d know exactly what I mean by this. Your positive outlook on life, your general ‘get on with it’ attitude is something I too have always had towards my Ichthyosis (I have Bullous Ichthyosis -aka EHK by the way). Family friends who know me well, often say to me “How do you always manage to have a smile on your face with what you have to put up with?” I simply answer “I just do, it’s just me. I’ve never known any different as regards my skin condition so there’s no point complaining about it. I’ve accepted my condition and I just get on with life and make the most of it as best I can”. There are plenty of people in this world who are far worse off than myself and if I can help those then I will.

In fact, reading Carly’s blogs has given me the incentive to start writing openly about my illness. Usually I tend not to even let on if I’m in pain or sore or whatever, (let’s face it, can you imagine if I had a pound for every time I had a sore, a blister or was in pain my God I’d be rich lol - oooh maybe I should start a new business venture lol - joke!) because I’m the kind of person that just gets on with it, and my answer whenever anyone asks me “How are you?” I pretty much always say in reply “I’m fine or I’m not too bad thanks”. This is mainly because I don’t like people thinking that all I do is moan. That’s another one of my ‘weaknesses’ if you like, I tend to care too much about what other people think. Sometimes I do have the mindset depending on my mood and think “sod the lot of ya, I don’t give a toss what you think, so what?” But then sometimes I think, “have I offended them, do they think bad of me?” Call it paranoia, call it an insecurity, or whatever, I don‘t know. But it‘s just the way I am, I‘m a people pleaser I suppose you could say. This kind of attitude runs in my family, laid back, taking things with a pinch of salt etc. But now I’ve finally found a way of letting go, I just hope that I can ’let go’ so that you can see another side of ‘my world’.

Thanks again Carly, keep it up and I very much so look forward to more of your blog entries. Hope you’re feeling better soon by the way ;-)

Valentines Day cards banned

I had the news on TV on Thursday (11th Feb) evening, there was a report on about a primary school in Somerset whose Headteacher has banned Valentines cards because the children may get "upset by rejection". I thought I'd misheard it at first, and as I only caught the last part of the story decided to have a look online to see if I could find the full story and lo and behold... Here it is:

http://www.timesonline.co.uk/tol/life_and_style/education/article7022651.ece

Surely this is a step too far? When I was at primary school, we made Valentines cards and gave them to our parents. The primary school in Somerset are saying that the children will be "upset by rejection" (that was the quote on the news on the TV), well correct me if I'm wrong but isn't being rejected in one form or another a fact of life that we all go through at some stage (on more than one occasion too I might add). It's part of growing up. Surely if we weren't rejected in one way or another, then we would go through life with too many high expectations. We would have totally the wrong attitude, and we'd be told what we 'want' to hear rather than the truth, therefore living on false hopes?

The sooner we can adapt the better I say. If anything, by experiencing rejection we are enhancing the social and emotional development of children. I mean, what is the alternative... that they learn to 'hate' for God's sake??? The sending of Valentines cards is so they can learn about love and love comes in different forms, not just sexually. Of course some children, or indeed people in general cope better with certain things (in this case rejection) better than others, that's what makes us individuals. Everyone is different, that's life. It is stated in the last quote at the end of the article that "cards declaring love can be confusing". If anything I think that this is an insult to the children's intelligence.

This whole thing has just been blown out of proportion and it comes across that the school are twisting things round by bringing the concept/boardering on insinuating sexual relationships going from this quote from the Headteacher:

"Some children and parents encourage a lot of talk about boyfriends and girlfriends. We believe that such ideas should wait until children are mature enough emotionally and socially to understand the commitment involved in having or being a boyfriend or girlfriend"

Maybe I misinterpreted this quote, but.... The kids aren't getting married to each other for God's sake. If they're (the headteacher I mean) making an issue of the school's theory that by sending Valentines cards to each other it insinuates sexual relationships, then it is only bringing the subjects children's attention and curiosity to what sex is more? Therefore, encouraging it? and by 'encouraging' I mean encouraging the kids to ask what sex is? I don't know, to me it just seems that their perspectives are wrong.

What I do know is that from my own experience at primary school, I didn't know what sex was at that age nor did I fully understand about relationships, I just knew that I loved my parents, and my family and that they loved me and that's basically it.

I also understand that times are changing fast (now, maybe I'm showing my age here or old before my time by what I'm about to say? lol)but times are changing and not for the better in some instances sadly. But parents are getting younger so it seems, and maybe their parents were also very young when they had their firstborn? therefore aren't maybe as well educated about relationships as perhaps they could/should've been? I'm not saying that this is the case for all young parents, as I feel strongly against tarring everyone with the same brush etc. I'm just saying this as an example.

Anyway, however you're spending your Valentines day, whatever you do, wherever you go and whoever you're with, enjoy the day and have a good 'un!

So, so sad

Sorry to post a sad blog, but I just had to write about this. I was heartbroken when I heard on the news on Thursday I think it was, of the tragic accident in which an 89 year old driver lost control of his car and mounted the pavement hitting a young mother who was pushing her 18 month old son in his pram. Here is a link to the story



Tonight (Friday 12th Feb) I heard on the news that the Mother of the toddler sadly died of her injuries at 8.10pm on Friday (12th Feb) night. I went cold when I heard this story, I really felt for the families of the Mother, the baby and the elderly man. Such a tragic accident. It has also since been said that the elderly driver could've collapsed at the wheel, possibly suffered a heart attack whilst driving.

I know it's probably a difficult question to answer but should a person of 89 years of age really be driving? What are your thoughts?

Decisions, Decisions

Since leaving school in 1994, I feel that all I've ever done is study. I've studied many various subjects such as Business Administration, Media Studies, Environmental Studies, Animal Behaviour, Audio Engineering (to name just a few) as I never really knew what it was that I wanted to do with my life career-wise. There's so many subjects I'm interested in, but when all is said and done and no matter what I study I always end up back to my first love, my first 'hobby' if you like which started at the age of four, and that is.... music.

Deep down I know my ambition in life is to work in theatre in one form or another, mainly as a sound technician. I've done voluntary work as a sound technician at a local theatre, which I absolutely loved. It was in all honesty, the one time I really felt 'at home' doing what I love. So... why have I STILL not done anything about it you might ask? Well, the answer to that question may be easier than I once first thought, it's just a matter of being honest with myself. And in all honesty I suppose somewhere within me, there is a 'fear'. That's the only way I can describe it really. A fear in the sense that I severely lack faith in myself and my capabilities. I mean, I know I can do it, I suppose I'm just plain scared (God that was hard to admit eeek!).

And why am I so scared? The more I think about it all, the more annoyed I get with myself because yet again I let my lack of self confidence get the better of me. I need to push myself, to gain that confidence from somewhere, somehow. I know I can do it, I'll get there it's just a matter of when. And the only way I can push myself forward, is if I get off my backside and do something about it.

What I do know is that I can't continue the way I am, pondering or dwelling on the 'what if's'. Cross those bridges as I come to them, life is far too short I always say. I have a young son too now, so not only would it be for my benefit to make the most of my life doing what I love, also to gain my self-confidence, but it would be for my son to give him a better start in life. I know that some people may say or think 'well you should've thought about all that before' don't get me wrong I did, but circumstances don't always allow and it can be difficult. The important thing is that I'm doing something about it now, which surely is better than doing nothing at all... ever.

So, over the last couple of months I've sat thinking (and yes it did hurt lol kidding), have done my research, searched my soul and have asked myself what it is that I really want to do and I've come to a decision. I'm going to study again, this time for the thinkgs/subjects I really want to study to help me get to where I really want to be.

I start studying with the Open University in May, towards a BA (hons) in Humanities with Media and Music. And you know what? I'm really looking forward to it. Yes, it will take time and yes it may take time before I get a job generally let alone the job I really want but I have to be patient. I know jobs in the theatre are competitive to say the least, and can also be few and far between, but I'm a determined person and will keep on trying. I'm not a quitter.

All those years of study in the past, sometimes I do see as a 'waste', but on the other hand it was all a learning experience of life in general. That's the way I'm looking at it, it's helped to make me what I am today if anything and for that I'm grateful. Now is the time to move on, not dwell on the past and concentrate on my future as a mother, a wife and for a new start career-wise. Studying for this degree will open many more doors of opportunity for me. And in the meantime I'll do the odd bit of voluntary work here and there, if and when I can. Whether it be at local theatres or in charity shops. (* note to self - one day I WILL be a sound technician - keep the faith)

I'll keep you posted ;-)

Where to begin - Welcome to My World

Many of you reading this will already know me quite well,but for those of you who don't know me let me briefly introduce myself.

My name is Melanie, I'm from Bolton in the North West of the UK. I'm very happily married and have a beautiful baby boy (who is 6 months old now). I'm a generally happy, outgoing, positive person who enjoys life and intends to make the most of it, life is far too short. I love to learn about new things, learning about the arts and different aspects of the music industry (more of my interests, etc. can be seen in my profile on here). And that's about it really... for now.

Well, here I am, blogging away on the 'net. I used to write blogs on my MySpace page but thesedays no-one seems to use MySpace like they used to, and so tend to stick with Facebook and the like. Even though I use facebook myself, I still don't particularly like it, I still prefer MySpace. All the apps. etc on facebook just get on my nerves in all honesty. Anyway, I won't whitter on about all that now.

I decided to try this blogging lark, well for me (and perhaps for most people who write blogs) it's a personal thing. It's a great way to connect with people through your own experiences of every day life. By starting a blog myself, I'm hoping to 'connect' with people by giving the opportunity for discussions and chatting in general about various issues/topics. I thought it would be a good place to go to get these things out of my system too so to speak.

I also wanted somewhere I could go where I could just write, and really be myself. Some of my blogs may well also include things concerning my illness (I was born with the rare genetic skin disorder Bullous Ichthyosis - aka EHK -). With these particular blogs I intend to be honest, frank and tell it how it is, the reality of it all. Some people may well think that by writing blogs like this about my condition or something involving my condition, I'm a right moaner and am whinging on about it, that is most certainly NOT my intention. Those of you who know me well will know that it takes a LOT before I'll even say that my condition is getting to me, I VERY rarely let on that it's getting me down which is can do and does from time to time. By writing such blogs it will give others the opportunity to learn and better understand just what having Ichthyosis means and what it involves. I certainly don't want any pity, I never have, but the only way to educate is to tell it how it is, and I may also include photos of the condition in these blogs.... so advanced warning to those of you who may be a bit squeemish (typo) hehe.

Some of this might not make any sense now, but I'm just getting started here so please bear with me. I'm sure it'll all make sense eventually.

Over and out for now
Back soon
~Twink~