Thursday 20 April 2017

Living With HS - My Journey.

Recently, I've spoke about my journey with HS - full name Hidradenitis Suppurativa on the blog, and told you all how I ended up in hospital with the condition. Since then things haven't been great, I've been back to hospital twice since, in unbearable pain that left me wanting to cut my own arms off - well my arm pits at least.

Me at happier times, pre HS.
The thing is, HS isn't just painful, it's ugly, it's smelly and it's a damn right bully. It takes over your life like you'll never know, and if living with another chronic skin disease (Psoriasis) wasn't enough, Hidradenitis Suppurativa decided to visit me, and it's it's spread like a wildfire in the outback, only it's my skin.

The things that some of us take for granted, like wearing a bra, shaving our armpits and even WASHING our arm pits hurts. 

Lifting my arm hurts - really hurts.

Lifting things hurt.

Everything hurts - even sleep hurts!

It steals your confidence, and it makes you tell your fiance to leave you, because why should he be with someone who's covered in not one, but two skin diseases, that are going to be with me forever - with no cure for either. Just treatments, treatments that can only possibly (yes it's not guaranteed!) to help, but then what if I have treatment and it gets worse? That's just what happened with the psoriasis, when I done the phototherapy treatment - attending the hospital three times a week for 12 weeks, I started that treatment with only a tiny bit of psoriasis in comparison to what I left with, and what I have now.


I will not put myself or my body through it. Instead, I'll try every natural remedy out there, I'll try every old wives tale, and I will not let the two conditions have such an affect on me, because things are going to get better! I've spent months doing research, and near enough every website out there speaking about HS, has a list of triggers, triggers that could potentially have an impact on the condition, and most of them I can tick.

Two of the main triggers are smoking and obesity, both strongly associated with Hidradenitis Suppurativa, and if you're obese and/or smoke it's likely to make your symptoms worse. Let's take a look at me, I'm obese and I smoke. So the two top things right there aren't helping my condition, I comfort eat when I'm down, when I'm having a bad day with HS, the first thing I think of is chocolate and a movie. I don't exercise, unless walking backwards and forwards from the kitchen counts, and I know I've piled on the pounds stones recently, my clothes that once perfectly fit are proof of that.

I smoke - another thing I first think of when I'm stressed, on a bad day I'll easily smoke 15-20 fags a day. It's a nasty habit, and I absolutely HATE that I'm a smoker. Again, the thing is, I've often thought I've needed cigarettes, when I'm having a bad day, I smoke more, as well as eat more, it become a routine, but a routine that isn't good for my health in a number of ways, or my confidence. 

Together all of these things are having an impact on my life, but I'm determined to make the changes that I need to give myself a better quality of life. I don't want to be the fat mum at the school gates that everyone stares at, I don't want to be the mum who has to find a smoking area on a day out, and I don't want to be the person covered head to toe in psoriasis and HS - I want to be somewhat of the old me, I don't mind a bit of psoriasis, and even HS, I know I'm going to have them together, and I can't get rid of them.

I can however get rid of the extra pounds I'm carrying, and I can get rid of the addiction of smoking that I help so much.

Am I ready? Yes, oh YES!

I'm ready to take back my body that has been stolen by fat, nicotine, addiction, psoriasis and Hidradenitis Suppurativa! I've ditched my weekly bar of chocolate, and I've replaced my weekend treat of a Cadbury's chocolate trifle for some low calorie popcorn instead, and as for smoking - I'm nailing that on the head too!

 I've tried to quit before, but it didn't work well with me, maybe it was because I wasn't ready, or maybe it was because I went cold turkey, either way I'm ready now, more than ever and actually I've done so much research lately on how is best to give up, and for me, cold turkey isn't an option again, so I'm doing things different and all I need to do is choose a device to use. I've also made a support group on Facebook with a few friends who also want to quit the habit, because lets face it, who wants to lose in a competition? Not me!

Two other things are often recommended for helping to keep your HS at bay, and that's shaving and avoiding deodorant and perfume. Something I personally am not comfortable with giving up, however I am going to look into other hair removal treatments, and natural antibacterial deodorants. For now, I'm going to take it one step at a time, baby steps if need be, and I will be happy with the body I was given.

I know psoriasis and HS is apart of me, but that doesn't mean I'm happy with them, but if we're going to live together forever, I suppose I need to find a way for us all to get on, and in a way I thank them, for giving me the kick up the backside that I needed, but have never found - until now.

Keep an eye on the blog for my health journey and updates - coming soon!

Jada x


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