My Experience of Hidradenitis Suppurativa and Sleep
My previous blog on sleep and hidradenitis suppurativa (HS) covered three main areas – pain, comfort and routine. However, there are other factors that can contribute to having a good night’s sleep. HS is a condition that does not have a clock. It doesn’t behave when you want to rest. Nor does it allow you respite if you need to concentrate or take part in exercise. So, because of this I have found that I have to try out a series of small things that just might make a difference to the sleep I get.
Quality and Quantity
For me sleep comes in two parts – quality of sleep and quantity. If I can get a good nights sleep without being woken by pain or dressings that have slipped then this I refer to as quality of sleep. If my quality of sleep is good, then the quantity I need is less. I am sure you can all think of times where you have had broken sleep throughout the night. This can feel very draining.
“The worst thing in the world is to try to sleep and not to.” F. Scott Fitzgerald
What Can We Do to Improve Our Sleep
So, what things can we try to improve the quality of our sleep? I have tried many things but the first tip I would give is do not bury your head in the sand. We can all cope with the odd nights poor sleep. But if this then rolls into two, three nights, its time to take action. What you do about it really depends on what works for you. Maybe it’s a trip to your doctor to discuss changing your dressings or pain relief. Maybe it’s a long soak in the bath before bed. Or maybe its distraction – sit and read some of the many informative blogs on here and create your own ‘sleep plan’.
Charlotte Bronte said “A ruffled mind makes a ruffled pillow” and sometimes the burden of HS can leave you with thoughts and worries swirling around your mind.This then denies you the quality of sleep that you need. So another tip is to share your worries with someone. Try group chats, self help groups, friends and family – whatever works for you. For me, it’s a bit all of the above. I try to clear my mind and give me a better of getting the quality sleep I need.
My second tip is that if you can’t get a good nights sleep, then try to fit in a cat nap during the day. If you have an active HS flare, then it can be incredibly draining. So find time to relax back in a comfy chair and cat nap. I find this really helps me, twenty minutes after work just to recharge my batteries.
“No day is so bad it can’t be fixed with a nap.” — Carrie Snow
HS can drain every part of your body, the pain can be awful. The trips to the chemist and doctors can be soul destroying but above all it can be so very draining. That is why good nourishing sleep is so especially important. It is the battle armour we all need to enable us to live well with this condition. It is the light in a dark room. So my final tip on sleep is don’t ignore the signs, do all you can to tackle the issues stopping you from sleeping well and these small changes might just help you to manage the condition instead of the condition managing 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.
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