Where to begin again?... A fresh start

I’ve been wanting to write a new blog for ages now, but to be honest I just didn’t know where to start or what to say. Anyway I’ll give it a go as it’s been far too long since my last blog.

The reason I started my online blog was, not only to give an insight as to what living with Ichthyosis is like, but also to help raise awareness of the condition, I also have personal reasons for starting it too. I’ve always found in the past, that by writing down my feelings, thoughts and worries (not forgetting the good and fun things too of course) helps me a great deal. Until the last year or so, I always hand wrote these things on paper and more often than not ripped it up and threw it away. By doing this I felt like a weight had been lifted off my shoulders, which really helped.

So, I decided to start an online blog to share my experiences of living with Ichthyosis in the hope of helping others affected by the condition or similar conditions, and it is also a place where I can express how I really feel. By being a bit more open about how Ichthyosis affects me. I’ve always been one to bottle things up, put on a brave face etc, etc and now I feel it’s time for me to... not necessarily change that, but to be more confident and more honest with myself. People have commented to me in the past and have said things like “I don’t know how you cope with everything you have to go through and everything you’ve have been through. Yet you’re always smiling”. But that’s just me though, I’ve never known any different, having had Ichthyosis all my life, so it’s the norm for me, part of life so I just tend to get on with it, life’s too short. And I always say, there are plenty of people in this world who are far worse off than me so who am I to complain... so I don’t (complain that is).

Someone recently said to me “ I noticed something about you today, if anyone mentions about you helping others your face lights up, but as soon as anyone mentions you helping yourself you put the barriers up” and this comment really made me think. I’ve never really thought about it before until now. But it’s true, I love helping others especially when it comes to Ichthyosis because Mum and I had very little support other than that of family and close friends when I was growing up.

Anyone who knows me well, knows that I rarely ever complain and try to see the bright side of things (I can’t even complain if my food is cold in a restaurant haha). But believe me I have my moments when I’m having a particular bad spell of blistering etc. I am after all only human. Sometimes all I want to do is cry (and admittedly, sometimes I do, although not often, when I’m on my own when I’m bad with blistering). Then sometimes I just want to scream with the pain (but I tend to scream on the inside and don’t let it show). Somehow though, I always manage to get through it and grin and bear it so to speak.

As I write this I am lay on the bed, and the children are fast asleep. I had to come and lie on the bed because my leg isn’t too good tonight. It started late this afternoon with a couple of small blisters, and an hour later I checked them and they were bigger so I put a dressing on them. I have just got ready for bed and when I checked the blister (as it was really quite painful by now), the bigger blister of the five I have was much bigger. The largest one is VERY painful with four smaller blisters clustered together just above it.



I had no choice but to burst the large blister with a sterile needle (let’s just say it stung a little - and yes there was a hint of sarcasm there haha). I drained the blister and bandaged it up again but the pain is still there which is a bit unusual for me as the pain usually subsides pretty quickly once the blister is popped, as it takes the pressure off. I’ve taken some pain killers, in the hope it will ease the pain so I can get some sleep. Even sitting upright on the sofa my leg is too painful, it feels like I’m being constantly kicked... HARD. It’s not hurting as much now that I’m lay down, it’s when I put any weight on it, get up to walk on it that makes it hurt the most. Any kind of pressure no matter how subtle really hurts. I’ll have to change the dressing again in a few minutes, and I’ve only had it on just less than half an hour. The dressing is soaked through already and there’s blood too (I hardly touched it with the needle just pierced the top so it can’t be that that’s the cause of the bleeding - just in case anyone was wondering). I’m not used to any bleeding after bursting a blister that I can recall, ever in my experience. Which suggests to me that I may well have an infection (I‘ve had many, many infections throughout my life)... Great!

Anyway, I’ll finish this off now by saying that some readers may find my blogs and the photos I share on there a bit too graphic (blister and sores wise), or too much but all I want to do is be honest with my friends, honest with whoever reads it and also to be honest with myself. I’ve learnt a LOT recently (more of this will be revealed in future blogs soon) and by opening up more and actually speaking my mind, saying how I really feel and telling it like it is in blog form, all I can say is if it helps in the long term (whether it be others in a similar situation or indeed helps me) then it’s worth it. If you are offended by anything I write then all I can do is apologise. At the end of the day it is my life, my blog and I need to push myself to regain my confidence and I feel this is a good way to start, before I lose the plot lol.

Please feel free to follow my journey and thanks for reading.

Lessons Learnt

Long time no blog... Yet again. Hectic is one word I suppose you could use to describe things lately. In short, and without going into too much detail, here’s what’s been happening. Rebecca is now 4 months old, the time is flying by. She’s coming along nicely, continuing to do well, putting weight on and is really alert, looking around doesn’t want to miss anything and is taking everything in around her. She’s also started to chuckle and babble in her own little way which is so cute.

For the last 6 weeks however, Rebecca has been wearing an orthopaedic harness. She was born with a dislocated hip as well as her skin condition Ichthyosis. So in order to help the hip to develop in it’s correct position, she has had to wear the harness. We were at first concerned as to how wearing the harness would affect her skin. Would it rub her skin raw for example and would it be soft enough for her. Turns out it isn’t as bad as we thought it would be, and Rebecca has taken to it much better than we thought she would. The alternative to the harness though, would be surgery to reposition her hip, which in turn would mean that Rebecca would need to be in a plaster cast which would go up to her chest and she would have to have the cast on for up to 16 weeks. This would definitely not be good for her skin, as it is so fragile, and vulnerable to infection and blisters frequently. So the harness was the best option, as regards causing as little trauma to her skin as possible. The good news is, after regular weekly, then fortnightly visits to Manchester Children’s Hospital for checks, her hip is doing really well. The consultant is really pleased with her progress, and says it is doing much better than she expected. It is looking very promising that the harness will be removed in around 4 weeks (well, just less than 3 weeks now as I type this). Anyway, that’s the EXTREMELY short version of events about this, but the whole thing has been... An ‘experience’ shall we say.. Let’s just say a strongly worded letter is being written to the hospital (it’s a very long story which I really don’t want to go into at the moment).



Rebecca wearing her harness and still smiling

Other recent events have made me think a lot about everything generally too (nothing to do with skin just in case you were wondering by the way). Let’s just say I’ve learnt a few lessons along the way, including the fact I’ve learnt a lot about myself. Things have happened that have made me think about things differently. Some of the things that have happened were negative, but from them, if anything it did me a favour or should I say the people involved have done me a favour by behaving the way they did, so thanks for that (again I won’t go into it here as it’s more trouble than it’s worth in all honesty). I also learnt the true meaning of friendship from this.

They say things happen for a reason, and I’ve always been a strong believer of this. Recent events have also kicked me into touch a little as regards the fact that I need to regain my self confidence, to be more assertive in my ways as I’m far too soft and polite for my own good sometimes haha. Also to push myself that extra mile to achieve more, to find it within me the motivation to follow through tasks and goals I set myself (although so far in life I have always achieved what I set out to do, things have slipped slightly of late).

The question now is... Could I possibly fit anymore into a day? And my answer to that is simply this... I honestly don’t know but I’ll give it a damn good try.

Long time no blog... and I'm a Mum again!

Well what can I say? this blog is a long time coming. Been gearing up to write a new entry for ages now, yet everytime I do finally get around to it I'm either too tired or my mind just goes blank. Oh well, I'm here now and have I got some catching up to do?!!!

Just looked back at my last post here and I can't believe it was posted back in August last year!! I can only apologise for my lateness or should I say laziness. So much has happened that I'll probably forget most things. Since my last post life has been a mixed bag shall we say, full of ups and downs. Basically, lost a friend in October, then my aunt also passed away on Boxing Day amongst many other things that have happened.

But I'm not going to get all depressing on you, so here's my good news.... in fact forget good and replace that with GREAT! On 10th February 2011 I had a beautiful baby girl Rebecca Grace. She was born full term, but weighed only 4lb 11oz. She was also born with Bullous Ichthyosis (aka EHK) like myself. She was in special care for 2 weeks in an incubator and I was in hospital for a week as I had an emergency c-section. We've had great support from the hospital team, given great contacts and lots of help. But everyone keeps telling me I'm the expert when it comes to our condition as I have the condition and live with it. I can understand their good intention with this comment but at the same time, I don't have the medical knowledge. I mean, it's one thing doing your own treatments and caring for the condition yourself, but when it's your child it's completely different. It's really difficult to explain what I mean.

Rebecca, like myself was red raw when she was born. But to cut a very long story short she is continuing to do well. Feeds really well and is continuing to put on weight nicely. Her skin is up and down, and she has had a few blisters but otherwise she is doing really well and I'm so proud of her. She's so bright and alert and is starting to take everything in around her and she's only 8 weeks old. Here is a photo of her at 7 weeks old:



Now, as a Mum to a young baby with Ichthyosis I have many questions and I still have lots to learn. I'm learning all the time. And no doubt as time goes on I will be writing about certain issues on here. Sometimes however, it's finding the time to sit and write thesedays. I will do my upmost to keep up with this blog though, in the hope it will help others, also to encourage other parents of children with Ichthyosis to get in touch if they would like to chat. Please feel free to contact me if you wish and I'll do what I can to help. It'll be great to chat to other parents who are going through the same thing. I'd really like to get in touch with any other Mum's out there who have EHK and also have children with the condition too, so we can share our experiences and help each other.

Anyway, that's me done for now, but I'll be back again soon. Before I go I'd just like to take this opportunity to thank all those who have been there for me recently, and to my friends for all their support, kind words etc it really means a lot to me and is most appreciated. Thank you all and take care xx