DAILY LIVING & MOBILITY

Living, and not just Existing, with POTS

Rare Disease & Syndrome

Emily

A bit about me & PoTS

So I suppose I should start with a little bit about myself; I am 23 years old, with a loving family, boyfriend and great friends! I moved away from home to go to university a few years ago. Since finishing university I am now in full time work for the NHS (yep, that means the dreaded 12 hour shifts!!) and I live a couple of hours away from my hometown with my friends. Whilst studying at university, after many doctors appointments, cardiology appointments, angiograms and tilt table tests, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS).

PoTS Diagnosis

Being diagnosed with PoTS came as both a blessing and a curse. I was relieved that, like many of the doctors told me I was not just ‘imagining my symptoms’ and it wasn’t down to ‘anxiety’ (which was the most repeated diagnosis from many doctors due to my history of depression), I actually had something to work with. I was first put onto Bisoprolol due to my debilitating tachycardia, I was prescribed 1.25mg, which gradually over the next coming months increased to 10mg (the maximum dose). Unfortunately due to the hypotension this caused an increased fatigue, I am now on Ivabradine and Midodrine 4 times a day. I am settling well on my new medication, it has also given me an excuse to buy some fancy new sunglasses due to the light sensitivity side effect!

Living with my invisible illness

I’d like to say that having PoTs doesn’t affect me, but unfortunately it does. I am extremely proud of how far I have come since the diagnosis, even though, like everyone, I have my down days. And on these ‘flare’ days, I mostly spend my time in bed with a book, or chilled out on the sofa with a big bottle of water, my very sexy compression stocking, a tablespoon of salt, and plenty of electrolyte drinks- now there’s a picture for you!   Recently I have learnt that it doesn’t always matter if you can’t complete everything you had planned on your days off, it’s okay to use dry shampoo for just one more day, it’s okay not to brush your hair or get dressed, it’s okay to skip out on the housework and it’s okay to put yourself first and have some "me" time! Nothing is more important than your physical and mental health, everything else can wait. One thing my mum always says to me when I get stressed is ‘how would you eat an elephant?’ and the answer to that is, in small pieces. Take your time with things, don’t use all your spoons in one sitting!

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