Daily updates

As usual it's been a while since my last blog. My apologies for taking so long, but there has been a lot going on in my life, and I've just not had the time or the energy to focus as much as I'd like. However, for the rest of this week I am planning to post a new blog every day to try and catch up with all things Ichthyosis. May has been Ichthyosis Awareness month, and yes I know I should've done more, but life often gets in the way of things sometimes as is the case as of late. HUGE thanks to everyone for your continued support. Watch this space for lots of news and pictures. Thanks for reading x

Thinking out loud

Funny thing, life, isn’t it? The way it has a habit of throwing things at you completely unawares. Then again, it’s funny how we somehow manage to get through it, adapt and move on. Granted, not all things in life are that simple, but generally speaking we find a way of getting through somehow. Thanks to a few hurdles I’ve encountered myself recently, it’s seriously made me think about things differently. Put things into perspective and overall just given me the wake up call I have clearly needed for a while now. I’m still not quite over the current hurdles, but I am determined to reach the other side with a better outlook on things and life in general. So if anything the difficulties I face right now, have actually done me a favour and for that I’m thankful.

New year, late blog... oops!

A little late to wish you all a Happy New Year I know, but after a rough end to 2012 following one thing after another (including the passing of a good friend to cancer - miss you lots Dee) I am determined to make 2013 a better one. Got lots I need and want to do, and got lots lined up. Got the charity to get off the ground, lots of new crafts I want to try, amongst many other things. But my priority is to get my health in check, because without that I can’t do much else unfortunately. Just got to wait until April to get more bloods done to determine what the problem is as the Dr thinks I have an underactive thyroid. But I can’t have treatment for it until the second lot of bloods confirms it. Fingers crossed I can get it sorted, or under control at least. This last weekend we celebrated Rebecca’s 2nd birthday (on 10th Feb). She had a wonderful time, as did everyone who came. And I’d like to say a huge thanks to everyone for all the birthday messages, cards and presents for her. It’s hard to believe where the time goes, and before you know it they grow so fast. There are many people in my thoughts at the moment, and if you read this you’ll know who you are. My apologies for this being a brief blog for now but I will be back soon with another one, as I have been asked by my lovely friend Christie Zink to write a guest blog for her, about myself, Rebecca and what we experience living with Ichthyosis. Another of my goals this year is to post more blog entries, and hopefully increase awareness of Ichthyosis and share my journey of living with the condition, and about Rebecca’s journey also. I will be posting more about other subjects and with some laughs along the way too, so watch this space. Thanks as ever for reading and I’ll be back soon.... PROMISE!!

Catching up.... Again!

Life... Nothing happens for ages and then a million things happen at once (that’s how it seems sometimes anyway). And yet again I’ve fallen behind with blog posts. My baby boy is growing so fast, he has now started nursery and loves it . And he had his first school photo taken with his sister, they were both so good.

Sometimes I don’t like starting new blog entries, as I don’t always know what to say despite the fact there’s plenty I could say. It’s knowing where to start, and on the other hand once I start I can whitter on for ages haha. I’ll try not to whitter on though. Been very busy recently with various things. Got a lot going on with the charity (Friends of Ichthyosis). Currently we are organising a Christmas fundraiser (Winter Wonderland) to help us kick start the charity, so this event will also coincide with the launch of FOI. Still lots to do and it’s all happening on Sunday 9th December at our local chapel hall (Chowbent). Really looking forward to it all, if a tad nervous, but no point stressing I’ll only end up making myself ill and can’t be ill on the day yikes! Got loads of friends who are helping me out with it all too to whom I’m very grateful. My lovely friend Anneke has made some lovely cards for us to sell in aid of FOI as well. You can find out more details of this here. Also as regards Friends of Ichthyosis, we (myself and Rebecca) have had our story published in a few national newspaper. This is a subject for another blog all of it’s own, but basically I wanted to share our story to mainly raise awareness of the condition and the charity. We were also contacted by BBC Radio Manchester to talk about it all there too (well I did all the talking of course haha), which we did and I was pleased with how it went. I’ve had a lot of positive feedback and some negative but as I say that’s another blog altogether (won’t get started on that now). I plan on doing as much as I possibly can to raise as much awareness as possible because, well, education is the key. I also went to my first concert in a long time in September and it was amazing! I plan on writing about that properly soon, a more indepth review and general blog of my personal experience. And I think that’s about it for now. I do wish I could write a new blog entry every day, but sometimes there just never seems to be enough hours in a day. Will do my best though and will keep you up to date as what’s going on with the charity as much as I can. I do tend to post most of my updates on Face book, and the website will be updated in the coming weeks leading up to Christmas. Thanks for reading. Thanks for reading x

Like a Duck to Water

Yet another long overdue blog but hey ho, sometimes life gets a bit hectic. I’m really quite excited at the moment as, yes you’ve guessed it, I’ve started swimming again. It’s a long story so please bear with me, as I want to start from the beginning. All my life Mum and I were told that I would never be able to go swimming because of the chlorine in the water and my Ichthyosis. We were advised that it would cause more harm than good so to speak. I went through school longing to just join in with my friends in the swimming lessons in PE classes, but I was the one who had to sit and watch everyone else have fun, and every time I sat down on the chair to watch from behind the glass my eyes would well up with emotion because I wanted to join in so badly. Somehow I managed to hold back the tears, although I don’t know how. And then I’d get on with the rest of the school day as if nothing had happened (so to speak). And that was that. In the mid 2000’s I became friends with another family who were affected by the same type of Ichthyosis Rebecca and I have. Since school swimming has always been on my mind, thinking of all the what ifs etc, it even became an ambition if you like to get in a pool and learn to swim. So by chance I found out that the Father of this family had always gone swimming and took his children and it posed no problems for them. So I thought, right, I’m going for it I have to at least try. So when I went on holiday later that year with my sister, her husband and their little boy there was a swimming pool on the complex and I decided to give it a go. And I really did take to it like a duck to water. I walked into that pool as if it was the most natural thing in the world. I wasn’t scared in the slightest and best of all the chlorine didn’t sting my skin. I was in my element. It was the best feeling in the world. When I got back from that holiday, I made enquiries about having lessons, and found a local pool and got stuck in. I loved every minute of it. However, at the time I was having lessons, the leisure centre where I had my lessons were having refurbishment work done, so in order to get to their new temporary changing rooms I had to walk past the main door which was an automatic door and so was open most of the time, it was freezing cold. I ended up getting one cold after another and it was getting me down. So I stopped going. Since having my 2 beautiful children, I didn’t want either of them to miss out on anything, moreso Rebecca. Now that I know that it doesn’t affect my skin, I certainly don’t want her to feel left out. When I was little my Mum was just following Doctor’s orders which any mother would do, myself included. So there is absolutely no blame whatsoever, she just wanted what was best for me and I completely respect that. But times have since changed and knowing what I know now compared to back then, I know she won’t miss out and I have to say I’m delighted. We all started going to our local pool as a family a few weeks ago now. For our first visit Vince and his Dad took Daniel in the pool while me and Rebecca watched, as I wanted to take it one step at a time with us. Next time, I went to the disabled session on my own to see how I got on before we took Rebecca as regards my skin. I loved it, it was amazing and everyone there was fine and really nice. Everytime I go, it’s hard to explain, but I only need to smell the chlorine and it takes me back to when I was at school longing to just get in and swim. I get overwhelmed with emotion all over again. Mixed with excitement that I’m actually going swimming now. I can’t begin to tell you how much it means to me. Sounds silly I know as it’s something so trivial and ‘normal’ to go swimming for most people. But imagine being told all your life that you can’t do something, only to find out years later, actually you can. It’s an amazing feeling and I feel such a sense of achievement from it. The first time we took Rebecca in the pool with us I was a bit nervous, but I needn’t have been. She too took to the water so well. She loves having a bath which helps with the pool. She absolutely loves it and it has had no ill effect on her skin so far. I am so proud of her, and Daniel too of course. Daniel is doing so well. I’m hoping to sign up for regular lessons again soon and I can’t wait. Yes I was wary of people staring because of the way my skin looks wet or dry - for those who don't know, those with Ichthyosis, the skin isn’t waterproof due to a lack of a certain protein, therefore the skin just turns white in colour and goes ‘soggy’ as I call it. It takes a long time to dry too. But I’ve adapted a new routine for Rebecca and I for after we’ve come out of the pool. Rebecca has a swimsuit with sleeves and legs in them so she is covered, and I wrap a large towel around us both when we get out. I however, have a regular swimming costume and am past caring what people think. If they want to stare, let them they might learn something from it. The only thing that really bothers me is if the staff say something. But so far so good (touch wood). By discriminating against me they are in my mind discriminating against my daughter too and I won’t tolerate it. My ultimate goal as regards swimming, is to complete a sponsored swim for Ichthyosis and EB (Friends of Ichthyosis and Debra in particular), so if you would like to show your support for this event (will be a while before I do it yet obviously, need to get those lesssons in lol) then please comment here or post on my face book page. I’ll need all the support I can get. Thank you so much for reading, I really appreciate it. Can’t believe I’m one step closer to realising one of my dreams (yes I said one of... Got many more where they came from).

I've got legs!!

Well I don’t blog for ages and then when I do, I start with a blog declaring I’ve got legs lol. Been a bit of a roller coaster recently health wise. A couple of weeks ago I started with a really bad blistering spell which started as a really small blister on my left thigh, which overnight progressed into a very large blister. No sooner had that one flared up, another popped up on my right thigh too. Keeping dressings to stay put is difficult at the best of times, but when they’re in difficult to bandage areas especially the thighs, it’s nigh on impossible to get them to stay up. Resorted to wearing tights to help keep them up for a day or two, because the tape I was using didn’t hold and I couldn’t find any safety pins to hold it up either. Oh well, I managed in the end... just about but couldn’t wear the tights after a couple of days as the weather kept changing rapidly from really cold like winter one day then to scortching like a sauna the next. So I couldn’t win on that score either. Eventually (well I say eventually, I mean literally within a day or 2 if that), the blister on my thigh spread down my leg onto my knee. I couldn’t walk properly because I couldn’t bend or straighten my knee, and the pain was almost unbearable. And when changing the dressings, oh my God the smell.... It made me feel sick. We had an appointment with Rebecca’s dermatologist that Thursday, so I decided to leave booking an appointment to see my GP as I probably wouldn’t have got an appointment until 6 week next Thursday lol (shouldn’t laugh I know but if I don’t laugh....). Rebecca had a couple of little blisters and had a bit of a cold bless her so she wasn’t 100% that day. The dermatologist asked how I was and I told him about my legs. He had a look at my legs and agreed I definitely needed antibiotics as it was clearly an infection and it was soon sorted out thank goodness. While at Rebecca’s appointment, we met up with my lovely good friend Tammy and her gorgeous son Wyatt at the hospital (Wyatt has non-Bullous Ichthyosis). Tammy very kindly gave me some samples of creams that she had left over from the ISG (Ichthyosis Support Group) family conference in Manchester in May. I love having goodie bags to try new creams. I’m always up for trying something new, but would like to point out that I would ALWAYS test them out on myself first before trying them on Rebecca. However, I know not all parents can do this with their children, and I’m fortunate in that respect that I can try the creams first. Here are some photos of my legs during the recent bad blistering spell. And I’ll post some after photos later in this blog so you can compare the difference.

This is my left leg when blistering, just as it was starting to spread to my knee (19th June 2012)

This is my left leg and the knee just as it was starting to dry up (21st June 2012)

This is an old photo just to so you how thick the skin usually looks on my feet. The above photos are all 'before' photos and the following photos are going to be 'after' shots of the exact same areas. Before I post the ‘after’ photos, I’d just like to explain a new routine I’ve tried. It is the first time I have ever tried this routine and would like to share with others, in the hope it will give some encouragement and hope to others with Ichthyosis. Although I must stress that what suits one person won’t always suit another, we are all different (but you don’t need me to tell you that). I learn like most people, through trial and error and for me personally this routine worked. This weekend I wanted to try the samples of creams I got from my friend Tammy, which included a couple of bath emollients etc. Now that my skin was drying out and starting to heal thanks to the antibiotics, I thought it was time to try some of them out. My new Routine First I ran a bath and added my usual Dermol 600 bath emollient. To this added some of the Doublebase Bath Addative (I also admittedly put a bit more in the is says on the bottle ooopsies - but hey if it works it works). Then I soaked in the bath for a good 45 mins to an hour until my skin was extremely soggy and white in colour (as it usually turnwet anyway for those who aren’t aware, my skin isn‘t waterproof because of the lack s white and soggy when of keratin in my skin). Then I used... wait for it... Never thought I’d use these words in the same sentence but here goes lol a pan scouring sponge (the green scouring side not the sponge side), to gently scrub off any loose skin. This is the first time in my life I have EVER used one of these. The thought of using one of these on my skin, never even crossed my mind until more recently, I read about a fellow Ichthyosis sufferer with the same type of Ichthyosis, using them on her skin with amazing results. So I decide to bite the bullet as it were, and thought go for it Mel, you can only try. So I did. I think sometimes as in this case, it’s a mind over matter thing. Sometimes your skin might just be that little bit too thick to get it all off, but if you do it gradually to start with if the skin is extremely thick and do it over the course of a few baths then it should gradually work. As with the skin of and Ichthyosis sufferer, the sponge too gets soggy so the combination of the skin being extremely soggy and the sponge being extremely soggy, results in scrubbing with the scourer to hurt less. I was actually really surprised at how little it did hurt. I scrubbed the whole of my body, and if I found it hurt a bit while scrubbing I added some of my usual ‘soap’ Dermol 500 lotion to the sponge first before scrubbing the area I was scrubbing which helped. I then used some of the Eucerin bath and shower wash with Omega, which I really like even if it does have a subtle smell of fish (which you’d expect anyway with something containing Omega). I’d apply this to my joints mainly. Once out of the bath, I applied Eucerin cream with 10% Urea in all over my body. Apart from my hands and feet. On my feet I used the Eucerin Intensive foot lotion with 10% Urea, and for my hands I tried the Eucerin Aquapohr. Once I applied the Aquaphor to my hands I put cotton gloves on for about 10-20 mins or so while the cream soaked in. I found this to be great, and it’s not as sticky as the 50/50 or Vaseline that I usually use sometimes. I know to some of you, (if not many of you) these creams etc are not new to you and you may well not have the same results, but this was so new to me. Maybe it was just one of those things I don’t know, but I’m determined to try and keep on top of this now to try and keep the thickening of my skin to a minimum. Once I get an appointment through for myself with the Dermatologist, I will be asking for some more of these creams etc. I would also like to point out that this is just me sharing my experience, and please consult your Dr or Dermatologist should you want to try this for yourself. Even moreso, if you want to try this for your child/children with Ichthyosis. Creams containing Urea are only advised to be used on children of a certain age and upwards. Here are the photos of how my skin looks now ‘after’ this routine.

My left leg as it is now after antibiotics and my new 'routine'

The back of my right knee

My left foot hardly any thick yellow scales

My left ankle Thanks so much for reading, all feedback is welcome.

A Grand Day Out On Saturday 27th May Friends of Ichthyosis had it’s first organised day out at Gulliver’s World in Warrington. It’s the first outing I’ve organised for FOI and as it’s been a while there were a few teething problems I’ll admit, but I’m sure the next one will run more smoothly. There was a group of about 14 of us altogether and we all had a fantastic time. It was a wonderful opportunity to meet others with Ichthyosis, for the kids to play with other kids with Ichthyosis and for the parents to chat and share their experiences. Thankfully the rain kept off, but it was a mixture of warm sun and a cold breeze but that didn’t seem to phase the kids as they went on the rides and had lots of fun. Here are a few photos from the day. I’d like to say a big thank you to everyone who joined us on the day it was so lovely to meet you all. And A big thank you to Gulliver’s World too. Here's to the next one, let's make it bigger and better :)

Craig and Sharon Beattie with their son Harry, Myself and my daughter Rebecca and Tammy Smith

Donna Antrobus, Tomo and Beccy Curtis

Wyatt Rothwell

Sharon Beattie and her son Harry

Tammy Smith with her son Max

Tomo, Max and ABi

Vincent and Daniel Bradley

Riding on the train