I’ve recently been on a six-week course of IV antibiotics. This was given to me at home via a mid-line that stays in your arm for the entire six weeks. As well as having anti-bacterial properties, it also helped to reduce inflammation.
The Previous Storm
Six weeks ago, things were pretty bad. I was in a lot of pain. Walking hurt, sitting hurt, everything just hurt! However, I did do a few things to help myself while things were so bad. One of these things was to read the blogs on this HidraWear website. I find that getting hints and tips from others who have experienced similar is incredibly helpful; tips on diet, mood, dressings and mental wellbeing. All of these things are vital to have in your toolbox if you are going to live well with Hidradenitis Suppurativa.
I’m Still Here
So, six weeks later, I am in a much better place. All the inflammation has gone walking does not hurt, sitting doesn’t hurt and life seems generally brighter. BUT….. as many of us will know, there’s no real cure for HS so I know that it will come back! So I’m trying to enjoy the time until the ‘storm’ returns! It will be a matter of weeks, so I can’t throw dressings away or take up a high impact sport, all I can do is enjoy the respite while it is here.
Making Little Changes
I spoke earlier about reading the blogs on this website and this is something I’ll do now, maybe there will be something that will keep me well for longer, maybe I’ll try a change in my diet – do mindfulness or read up just to appreciate that there are others out there.
Knowing that there are others in the same boat as me is incredibly helpful, peer support is as important to me as medication, lotions and potions and so I will be spending time reading around to gather more tips and hints for my toolbox.
Being comfortable, and mentally well is so important and I would encourage anyone with Hidradenitis Suppurativa to take time to work out what helps, and also what helps less.
Knowledge is power!
Lao TsU said “Knowledge is a treasure, but the key is to practice it” and so before my HS gets worse, I will arm myself with as many hints and tips as I can so when the storm comes, I can sail safely through. Chronic illness is tough, but so are we, and by learning more about your body and the condition, you put yourself in a much better place to live well.
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About the Author
Clare Knighton is a Peer support worker from Worcester, England. Clare lives with HS and has done so for the past ten years. She is passionate about helping others to talk more openly about the condition and about improving our mental wellbeing.