It’s a typical Monday, it’s 5.30am and I wake to my alarm. I rarely snooze my alarm, so drag myself into the bathroom for a shower. Before I begin, I have to take off the dressings from the night before, and its then in the shower for a luke-warm wake up. I’ll gently clean my body and ‘wounds’ as I refer to them. I then dry myself, apply fresh dressings and get dressed. Then I take my medication and decide whether today is a day I can go without painkillers. Living with hidradenitis suppurativa is a learning experience.
Then it’s a quick bowl of cereal and a coffee and off to work. I am fortunate that my job involves a lot of talking and not too much walking.. As I know if I did have to walk a lot, I simply would not be able to work. However, during the day, I do have to sometimes change my dressings, or change my mind about needing pain medication. On the outside, all you will see is my smile, my use of humour and hopefully my care for the people I work with. It is their time and my pain and discomfort must wait until the end of my shift.
Finishing Up My Day
By the time my shift is done, I usually feel chronically tired and zoom home to change into my loose-fitting pyjamas and a much-needed rest. I will probably change my dressings again before tea and again before bed.
Being comfortable is so important and I would encourage anyone with Hidradenitis Suppurativa to take time to work out what helps, and what helps less. Knowledge is power and is definitely the way to make this condition more manageable.
Some people are unable to work at all with the condition, but this should not stop anyone from trying out what works for you.
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.