Diagnonsense: One Year On

"On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, yeah, then you stand

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place, yeah

Cause when push comes to shove
You taste what you're made of
You might bend til you break
Cause it's all you can take"

A year ago today, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) and it was a huge relief. Yep, you read the right...being diagnosed with a chronic, life-changing illness and I felt relieved. For a long time prior to my diagnosis I had suffered with collapses of unknown cause, and more recently in the year leading up to my diagnosis it was suggested that I was suffering from psychogenic seizures. Now, psuedo- or psychogenic seizures are a real phenomenon, they're not just someone "faking". However, I knew that this was not the answer to what was happening to me. So to be told that someone had pinned down what was happening to me was such a huge relief, to know that even though there wasn't a cure, there was potential for symptom management, that I wasn't losing my mind and imagining symptoms that weren't actually there.

The year since diagnosis has been crazy, overwhelming, liberating and full of anger, despair, happiness and hope. It's been such a mixture but I stand here a year on, stronger than a year ago and ready for yet another year of progress (with the inevitable relapses and flares...).

A snapshot of my year: 

- Multiple hospital admissions - ranging from tachycardia to hypokalemia to dehydration

- Too many venflons and blood tests to count - my veins are wrecked

- Lots of different drug combinations

- Deciding to leave teaching in favour of following a more clinical route

- Getting a job as an HCA on a surgical ward

- Working at a variety of events providing medical cover with a few different companies

- Taking the first steps to becoming a trainer assessor

- Moving to the wonderful St. Peters who are the perfect Brightonian family

- Being part of Brighton ACT group

So where am I now?

Well, today I'm meeting a friend for coffee - I'll walk there and back. I take a variety of medications and drink huge amounts of water. I'll soon be off to Soul Survivor to work with Team Foxtrot doing first aid for two weeks. I'm excited to be starting work on the ward soon. As time goes on, symptoms of a more general autonomic dysfunction are becoming apparent but for now things are relatively stable. I still faint occasionally and fairly regularly you'll see me lying somewhere completely inappropriate just to get the blood back to my brain. For example, at a recent first aid social I found myself in the corner of the pub, under our table with my legs up on Vickie's lap until my heart sorted itself out. If you know me well enough...you just come to accept it as part of me. And I guess mainly, that's where I'm at...accepting that this is part of me, for the long haul.

There is no point dwelling on how different my life could have been...because it's not! 

There have been some really tough times over the past year - particularly a flare in March that left me bed ridden and took a long while to recover from. However, there have also been some pretty darn amazing times too! Even without POTS, I now see that teaching was not a career I would have enjoyed...I'm so grateful for the opportunity to pursue something new. I've performed CPR on a random person who arrested in the street - there's something amazing about giving someone a chance of life. I've cleaned up vomit, urine, blisters, faeces...and weirdly enjoyed even the gross parts of caring for others. I've grown closer to old friends and made some fantastic new ones. I've moved to a church where I feel I can grow and give in equal amounts and consequently feel like my relationship with Jesus has developed and I love Him more than ever before. I've made huge strides forward with my mental health and generally been enjoying life as much as I can. 

I may have PoTS, but PoTs doesn't have me...my future inevitably involves further hospital admissions, a lifetime of medication, relapses, flares and I'll probably never be "normal". PoTS may be life changing, but I'll embrace my current stability while I can! Here's to many more years...

TTFN x