Wheelchair Diaries

Postural Orthostatic Tachycardia Syndrome or POTS for short, is a right royal pain in the ass. It is in it’s basic form, extremley low blood pressure and rapid beating of the heart, exaserbated by standing upright, walking, exercising and sitting upright in some cases. My blood pressure lingers around 85/60 where as a normal blood pressure for someone of my age should be 120/90 or therebouts. The symptoms of POTS varies from person to person but the most common symptoms are extreme light-headedness, dizzyness and fainting.

My symptoms are severe dizzyness, brain fog and temporary visual and audio disturbance. The symptoms are totally consuming and impossible to overcome. Just lately I have been unable to get around much and find that even walking around in my home is really a struggle. When I stand upright the symptoms come thick and fast so I do a lot of stooping and when I am out and about I am always pretending to do my shoe laces or I will look at things on the bottom shelf in the shops so I can get some relief from the dizziness. I am quite good at masking my illness to the outside world. I do try to power through and I don’t want to give in but it’s really hard at this time.

There are times when I simply cannot stand and in the past these are the days when I would stay at home and wait to get better, I have missed out on lots of things because I was at home, waiting to feel better. So I have decided to stop missing out on things. I have now got a wheelchair for the days that I can’t get around by myself.

Using a wheelchair is most definitly affording me a freedom to attend hospital appointments, shop and do everyday things that I simply couldn’t do before without feeling dreadful but it’s a little bit of a mind-hurdle as I feel torn between feeling guilty that I am just being lazy and knowing that I do need it. I also feel a huge sense of guilt for those whose use of a wheelchair isn’t temporary. There is also the feeling that people will see me differently than they did before. I suppose most people would totally understand my predicament and do the same in my situation but I don’t get the chance to explain to anyone that glances my way and I find myself wanting to say to passers by “I can walk, this is just temporary” I haven’t actually seen anyone I know yet but when I do I think I will want to jump up and say “This chair is part of a fancy dress costume”

My niece and nephew Alice and James recently came to stay with me and I was worried that when they saw me using the chair that it would upset them. I was mistaken. They could not wait to go out to the shops so they could push me around at warp speed, sit on my lap and re-enact rollercoasters around the aisles of Asda! Then as Alice, My mum and I sat down to lunch in a resturant, James with his ever present smile took the chair through it’s paces, wizzing past the window. When it came to home time and I was in the car, James took it for one last spin around the car park. My mum kept calling to James “Come on James, Home time” after the tenth time my mum pretended to pull James out of the chair, to which he threw himself onto the floor! Apparently this happens in one of his favorite films. The look on a few shoppers faces was a picture! If it wasn’t for the fact that all of us were hysterically laughing I think someone might have called childline! You have to got laugh!

I do know that this is a temporary thing and I will only use the chair if I absolutely have to. I have to tell myself that this episode will pass and in the meantime, just deal with it.

I find that exercise is very difficult so I have starting putting together a short recumbent work out for those of us that can’t sit or stand so keep a look out for my video of my POTS workout, coming soon.

Tracy