Tuesday, 24 July 2018

Living with Chronic Illness - Hidradenitis Suppurativa

I love writing post about makeup and clothes and like to try keep my personal life away from my blog, but I feel I need to share with you all what has been happening and be honest about how life is going at the moment.

I always say the same thing every time I log onto snapchat or instagram… "Sorry its been so long" and I honestly do mean it, I have such good intentions of posting to my stories everyday and keeping up to date with what's been happening but this last 4 months I have really slipped up.

You could say I'm not much of a talker, all my life I have bottled things up instead of speaking out and I'm trying so hard to learn to talk about my feelings, but for the meantime I'm hoping that writing this very personal post will help.

I have mentioned it before but a lot of you may not know, I have an autoimmune disease called Hidradenitis Suppurativa, which in short is basically abscesses and holes that form in warm places of your body. There is 3 stages of the disease and I have stage 3 which is the worst you can have. I have been on an immune suppressant as over two years and it had been helping loads but this last 6 weeks, I have had one of the worst flare ups of my life.

Usually I have about 3-5 skin openings or abscesses at any time which I can usually manage not to bad but as I sit writing this post I currently have over 15. I try to not let them bother me but as I am all about honesty I can say they are really getting to me and ruining my life. I have 3 to the right side of my right boob that are open and need dressed and cleaned daily, 3 in my left armpit also needed dressed daily, 5 along the bottom of my stomach, and 8 others around my lady parts and bum.

You maybe think that's too much info but I just feel that I need to talk about it, to write it down to voice how annoyed I am with H.S (Hidradenitis Suppurativa). I have had H.S since I was 12, its not down to my weight, or bad hygiene or anything like that. My body simply attacks itself and I cant do anything to stop it.

So what is Hidradenitis? To some people they see it as a boil or a spot but it is soo much more, its intense burning pain where the abscess is more often that not it will burst leaving me covered in blood and pus, disgusting I know!! It is an open wound that usually gets infected, its raw skin rubbing against skin or clothes. Its not being able to sit or stand comfortably, its stops me dressing how I want, going out some places I want and a lot of embarrassment because I'm covered in dressing and plasters. Its not being able to go to the swimming pool when you want. Its not being able to exercise as you are in so much pain you cannot cope. Its operations that take months to heal and a body that's full of scars.

In fact its loads of other things that I have just got used to in everyday life. So why did I write this post now? I attended an event last week where there was very limited seating and I knew I wouldn't be able to stand with the heat and the open wounds I just couldn't have lasted more than 5 mins. So I had to suck up my pride and ask for a seat to sit at the back, I was very kindly sorted out but for me I was soo embarrassed I was the girl that had to ask for special service , I was the girl that was too lazy to stand, I was the girl that was dying inside but I had to suck it up and think if myself for once.

I know there are soo many other conditions and diseases people live with and I could be so much worse off but for me at the minute my life is revolving around a horrible nasty disease and its really getting to me. I am not looking for attention or sympathy as I am sure a lot of you know me know that's not what I am about, but I just want to you to realise I wish I could be more active and a better blogger but my health is stopping me, I do feel like a weight has lifted off my shoulders just by getting my feelings written down!

If you suffer with H.S or want to know any more about it, ping me over a question and I will be more than happy to talk more about it with you.

Lots of Love..

Victoria xx