Hi everyone, I’m Jenny from Newcastle & I’m 21. If my story helps just one of you, it’ll be worth sharing.
My story began aged 13 when I became symptomatic virtually overnight. Seeing my high school friends being ‘normal’ made me want to be ‘normal’ too, but as we know it’s difficult to function ‘normally’ when dealing with exhaustion, sickness, hot flushes, poor circulation, dizziness, palpitations, mental clouding, exercise intolerance, etc. etc. (You all know the list is endless!)
So, 8 years on & a diagnosis only 4 months ago (ridiculous I know) revealed that my heart rate at rest is quite good at 87 (ish) BPM, but upon standing increases by a minimum of 40 beats each time, often reaching 157 BPM. It’s quite unbelievable to a lot of the Dr’s, but I’m sometimes not even aware of the increase. My case has an added spanner in the works, as my 24hr ECG & ECG’s in hospital have showed ectopic (skipped) heartbeats & nobody is quite sure why.
So basically my day involves breakfast, which is now a bag of salt & vinegar French Fries (yesss!) which gets my sodium levels up straight away & then downing a pint of water at 9am, 12pm, 3pm & 6pm. Some POTS folk are frustrated at being asked to try this & I understand why.
1) You pee like a racehorse
2) You feel like it’s not doing anything (JUST GIVE ME THE DRUGS!)
3) It makes your belly feel & sound like a hot water bottle.
But the way I now see it has proved useful. Imagine losing a pint of blood & how serious that would be. We already have low blood volume, so it’s like replacing what we don’t have- blood, with water. It acts like an intravenous drip would in hospital (where we don’t want to end up, covered with 12 leads, being prodded with a stethoscope & attached to a line) but instead of going in the vein, in goes through your stomach.
I’ve managed to get through high school, sixth form & uni, sometimes I wonder how I managed it, but I think it’s all about listening to your body, not just on bad days but good days too. I’d recommend to any younger people with this diagnosis to try to be mega-organised & prepared with school/college/uni work & start it weeks in advance. This certainly helped me; as if I had ill days it would mean I was never behind. We all know how unpredictable POTS is, so try & beat it by being one step ahead, it’s worked for me. Also, try & pluck up the courage to let your teachers/lecturers know about POTS & how it affects you. I was initially reluctant to do this (I hate the drama of it all & people’s faces) but at least they knew I wasn't bored in their lectures! (Well... maybe I was a bit!)
I now understand what other POTS folk say about diagnosis being like the final piece of the jigsaw puzzle & I really couldn’t agree more. There may be no cure for this condition & at one point that made me feel quite angry, panicked, with 1 million questions such as; will I ever manage to get through a pregnancy? Will I be able to work full-time? Will I end up in a wheelchair like other POTS folk I see at my appointments? But now none of that even enters my head. I appreciate just how complex the autonomic nervous system & cardiovascular system are, how complex treatment can be & there’s nothing I can do to make it less complex, so I’ve decided to deal with what I can & that’s today. That said, I hope (as we all do) that there’ll one day be a cure.
If this ridiculous condition has taught me anything, it’s how much I appreciate & adore my family (Mam, Dad, Catherine, Sarah, Rod, Sophia & Joe- I love you all more than words can ever say) who are a constant source of love & support & are always there to escort me to/help make decisions in appointments, open the windows when I’m having a hot flush, pass the sick bucket when I’m going to hurl (nice), fetch my slipper socks to warm up my bloodless, purple feet, attach the monitor when I’m having a palpitation & are useful to hold on to when I stand up & get a head rush! Please please accept help from those you love the most, this will maximise what you're able to do day to day.
It's also taught me who my true friends are- i.e. the ones who are more than happy to reschedule meeting up if I’m having a particularly ill day & the ones who are more than happy to swap clubbing for lunch time pig outs. (They know who they are!) I often tried to go out at night to fit in, even though a hangover takes me five days to recover from, as all you POTS folk will know! For me evenings are when my symptoms are at their very worst, possibly because the day has caught up with me. This makes going out at night a one off these days! Try & find at what point in the day you're able to do the most & use it as best you can, but remember not to overdo it!
My ups & downs over these 8 years made me more determined to gain a place on my Occupational Therapy MSc, which I achieved in June this year & maybe this will enable me to post lots more advice on daily POTS management to help others! Someday I'd love to work full-time with patients diagnosed with long term chronic illnesses (just like us) but we'll have to see if POTS allows the full-time bit!
At the end of the day POTS is awful. Some days are almost impossible to deal with, but one thing to bear in mind? There’s a whole bunch of other rare breed POTS folk experiencing the same/similar symptoms or life dilemma’s as a result of this condition. Don’t shy away from asking for advice & support. & let’s create interest & knowledge amongst the people we know, as this will eventually drive forward more research for treatment & one day a cure.