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.
