Helen: Cycles for charity with PoTS
I'm Helen Black I'm 33 years old, from Newcastle upon Tyne.
My PoTS story started in July 2012, 6 weeks after getting married. My heart was constantly racing and I felt so tired.
I saw a cardiologist had several tests, heart monitors EP study. My heart was out of control yet no one knew why.
I was put on every beta blocker going, no success it made whatever I had even worse. I got referred to the falls and syncope clinic at a local hospital and had a tilt test done. The doctor said I have PoTS, I was put on fludrocortisone, no success went back for an emergency appointment. The doctor says no you haven't got PoTS it's more Inappropriate sinus tachycardia (IST).
I discovered the PoTS and IST support groups. It was amazing knowing these people were going through what I was, I felt relieved. I met a lovely lady from where I lived, she was seeing a professor who deals with PoTS. I got referred from my GP.
January 2014 I saw professor Newton. I was diagnosed with PoTS. It was a relief to know what I had, but in the other hand I was thinking will I have this forever. Over the months I was sick of hospitals doctors and trips to A&E. I decided to go alone. I was a young lady who had put my life on hold.
I wanted to be a normal girl who wanted to enjoy life, more so enjoy my new married life.
I work for Boots, changed a few shifts, and just cracked on with life. I wasn't going to let this condition destroy my life. Months went by, without medication, working 30 hours one week, 37.5 another week.
On November 12th and 13th, Boots supported children in need. One of my colleagues brought a cross trainer exercise bike in for all of us as a team to do 100 miles a day for 2 day's. We did it. I did 11 miles a day for 2 day's, splitting my miles in to 5 miles then couple of hours later 6 miles, I did 22 miles in 2 day's. This was a massive achievement for me as I can't even climb stairs without being symptomatic.
I hadn't done any exercise involving my legs , I'm just very proud I did this. I had several palpitations, but that did not stop me.
Please don't give up you can do it. I've been in dark places with this condition, I just wanted to be like a normal 33 year old women.
I'm still under my PoTS doctor, yeah I have bad days, which are awful. I also have fantastic days those are the days I love.