Living with POTS Syndrome
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Laying in bed, entirely still, silent tears. Zoe Collins describes what it is like living with POTS (Postural Tachycardia Syndrome).
Living with POTS Syndrome: what is it like?
Unless you have aΒ chronic illness, itβs hard to evenΒ imagineΒ what living with POTS Β syndrome (Postural Tachycardia Syndrome) is like. Iβll be honest before I got diagnosed withΒ POTS syndrome people living withΒ chronic illnessesΒ was somethingΒ I never really thought about. And even when you do have one, there are so many forms of chronic illness, and varying levels of severity, that itβsΒ hard to relateΒ even then. This is my story about living with POTS.
And the posts or tweets that I do see on chronic illness are always soΒ positive. βThereβs new research,β or βlook what Iβve managed to do despite my illness,β or βIβm such a huge advocate for [insert chronic illness here].β And donβt get me wrong,Β I adore those posts, and I regularly write them myself. But you never get to see theΒ ugly sideΒ of living with a chronic illness, living with POTS.Β Reality.
I only really post when I have good days, and people say how βwell I look,β or βhow inspiring I amβ; again, things I love and those commentsΒ mean the world to me. But if I posted what happened most days β would I still be βinspiringβ then?
Living with POTS syndrome means that on some daysΒ I canβt stand up, and itβs having to make the decision of my husband carrying me to the toilet and standing outside in case I pass out, or shuffling on my bum to the bathroom and clutching the handles in my bathroom to break my fall if I pass out (itβs happened!).Β No one talks about these moments. Iβm still embarrassed by these moments, but itβs my life now, and I shouldnβt be.
Or having toΒ sit in a lukewarm showerΒ because the heat makes you pass out, and so does standing up. So you sit on the shower floor, with silent tears rolling down your cheeksΒ praying itβll passΒ soon, so you feel safe enough to leave the shower.
Or laying in bedΒ listening to your stomach growl, but knowing even if you do make it to the kitchen without any symptoms, that grabbing anything more than a bag of crisps and a bottle of water is nigh on impossible without them starting.
Or catching aΒ common cold and coughΒ and your body shutting down completely. Iβve got a simple cough at the moment, and IβveΒ lost countΒ of how many times Iβve passed out in the last few days alone.
OrΒ laying in bed; entirely still. Anxious to move in case your symptoms start.Β Is it really worth getting out of bed for? Your mind spiraling until itβs just you and your thoughts alone forΒ hours and hours.
Some parts of living with POTS syndrome are significant, and I love talking about them. I love talking aboutΒ what itβs helped me achieve; theΒ people Iβve metΒ because of it; theΒ sense of belonging and community; helpingΒ raise awareness. But talking aboutΒ how lonely it can be;Β how difficult it can be;Β how debilitating it can beΒ β those things are important too.
Iβm coming up to myΒ 8th yearΒ of first being diagnosed with POTS syndrome. There are no cures or βmagic pills,β as Iβm so often told. Yet Iβm still not used to it.Β I donβt think Iβll ever be used to it. There always seems to be a new symptom; or a worsening one. But positiveΒ orΒ negative β talking about it; in particular online, isΒ therapeutic for me. This is what living with POTS syndrome means for me.