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Exercise
Many of us will be told on diagnosis, along with increasing salt and fluid intake, to exercise. For many, this is a daunting aspect! At the point of diagnosis it is highly likely we are de-conditioned or suffering with syncope. On my initial diagnosis I was simply told to do those three things. My face said it all really, it was beyond me how they thought I was possibly going to exercise when lifting my head off the pillow resulted in me nearly passing out. So, for some it may be you need to discuss with your consultant about medication options. When I found a Dr who actually had a clue what he was talking about, explained to me that it wasn't as simple as doing the above. He advised I would need medication to mask my symptoms to give me the chance at successful exercising and reconditioning. So that is what happened, once the right combination was found (after 8 months) I was out of my wheelchair and no longer bed bound. So I started with a recumbent bike.
The above isn't the exact model I have but it is very similar in its features. It has an LCD display to measure speed, distance, pulse, calories and duration. The handlebars, the same as mine have built in pulse sensors, so your pulse can be displayed on the screen. This can provide some reassurance for anybody that suffers with anxiety surrounding their heart rate. For me it gave me so much control, I could slow my pace if I felt my heart rate was getting too high and I was feeling uncomfortable. This particular design has foot straps and the seat is adjustable to account for different leg lengths. (As always, seek advice from your GP or consultant before undertaking exercise as everyone's tolerances and needs will be different!)
A cheaper alternative that might be of preference to some might be something like the above. It doesn't give you a record of your pulse, but so many people have smart watches now that give you that information, that this may be sufficient. It is easy to move and still provides you with exercise time duration, calories consumed, cycles and revolutions per minute. Which may be enough information for you, or you may not give a shit about any of it and just want to do a bit of exercise to start the reconditioning process! (Seek advice, blah blah blah, you know the drill!)
There is an exercise regime out there that was actually designed for us! Yes you read that right, support designed especially for PoTS patients! I couldn't quite believe it myself! It is called the Levine Protocol. I don't understand it massively, I believe it is better done with support from a physiotherapist, however, the only physiotherapist that I have found that offers the regime is in York. I intend to do some research when I am not bogged down with exam prep to try and find someone in my area with knowledge of it, or at least willingness to look into it and work with me. I will keep you up to date on this one!
I did speak to my GP today about whether or not I would meet the criteria for the exercise referral scheme. The reason I asked about this is because I have wanted to exercise for a long time, but I find exercise induces SVT and PoTS symptoms. Therefore, I feel I need some support in exercising safely with my conditions with the aim to strengthen my heart and become more active and fitter. His response? You don't meet the criteria............give me a minute....
****screams into a pillow****
The criteria is along the lines of heart disease, stroke, depression, breathing problems etc. All very 'common' conditions. It got my back up just simply because it made me think of all the times we have presented ourselves with symptoms that don't match common criteria so we get pushed to one side or told it's in our head. So, because I don't meet the criteria I don't need help? I said I do experience breathing difficulties at times and I need help to exercise. I even said to him that's a very generic list of conditions to meet the criteria, what about people like me that have something a little less known but need support? Oh wait, I know the score, I don't matter. You know what fuck you, I do matter! He said well I don't write the criteria or choose who can be referred, but I can't tick any of these boxes so you're not eligible! So as per, I am left to my own devices to either remain unfit for the rest of my life or find someone that will help me!
If I have any success of course I will keep you posted.
On a side note, I have made a proposal to a medical school to try and educate the future generation of Doctors in a bid to try and change the way we are perceived and treated! I haven't had a response yet, but I won't give up and I will keep you posted if anything comes of it!
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