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Follow up appointment with my POTS specialist.

October 4, 2012

I went to see the specialist recently; a rather long day factoring in the journey to London by ambulance. Fortunately this time I made a point of asking them to stop on on route at the motorway services so that I could use the loo and stretch my legs.

Once at the hospital, I made full use of my wheelchair. It was hot in there and after the long journey it was a welcome relief. Those of you that know me well will know how much I avoid using it, but in situations like this, any aid to help with the long day would hopefully mean less recovery time over the coming days.

We were seen after not too long a wait (but more than long enough for a warm waiting room). I had the usual obs. done; laying and standing blood pressures etc, before going back to the waiting room for a short time before being called in for my actual appointment. I was informed that laying my pulse was 65bpm (i.e. normal) and then standing it shot to 110bpm (despite the beta blockers) and I wonder why I can’t gain weight haha! with my pulse shooting to ‘exercise’ levels each time I stand let alone move about, its hardly surprising. That said, after a few minutes or so my pulse does settle to around 85-90bpm (still high, but I’ve learnt to cope with the initial ‘assault’ on the body when I stand and hopefully make it seem invisible to anyone else). It was a year ago that they last saw me; I was in hospital for my autonomic tests and not on any medication, I could hardly sit up in bed my pulse was so high and standing felt, well, impossible!

I was congratulated on numerous occasions throughout the appointment, especially for my positive attitude towards my POTS and EDS. The only change has been one of ‘learning’. I know I keep mentioning this, but it is all down to learning my limitations and sticking within them. That’s admittedly impossible to begin with, then you soon learn to find your limits and you begin to cope, then you despair that you have these limitations and overdo it, causing a crash, then you learn from the crash and manage for while within your limitations before (yes you’ve guessed it) despairing and overdoing it again and so the cycle continues… but getting on for two years down the line, I am becoming content with my life and plod along with much more positivity than despair. I won’t lie, its impossibly hard at times to stay positive, but I do so with three golden rules: Live within my limitations, have a positive attitude, and set small goals. Achievements are my biggest boost (like the small goals I set and achieved at my brothers wedding) it’s far better to achieve small goals than setting something impossible to achieve and being struck back by defeat.

Getting back to my appointment… we discussed another medication in great depth, and although I could see how it might help, there are no guarantees it would be anymore beneficial than the combination I take currently, so it will sit on a back burner until such at time when I feel I wish to try it. It’s all trial and error as there is no cure by drug, just drugs that can potentially ease symptoms. So they said if I want to try something else next month; give them a ring, however if I don’t want to try anything else for another 3 years, then its not a problem; they simply wanted to make me aware of the options available. So all in all, carry on as I am and they’ll see me again in a years time.

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