Basingstoke Team Parish

Michael: Living with a potsy

As the partner of a POTS sufferer you have to accept that it will impact on all areas of your life. No matter how normal your partner looks you know there is the turmoil of a racing heart and fatigue underneath. You can plan carefully to try and minimise the effects of POTS on your plans but a bad day can wipe it all out.
There is no point planning any activity in the mornings. If it is a good day getting up and getting ready to go out will be achieved reasonably well and you can use a subsequent car journey as a rest period. This is how we approach going to visit family, but we always need to ring to tell them when we actually achieve getting out of the house, as it can vary so much. All activities need to be broken down into small units of movement interspersed with rest stops. Going to town is more logistically challenging than it used to be. We need to park close to where we need to be. If we want to visit the music shop at the Custard Factory we need to park there first. Once upon a time we could walk to the main shopping district from there, now we need to drive to the premium priced parking in the basement of the shopping centre. Every couple of shops we need to find somewhere to sit down. We use book shops and other places that provide seating as recovery stops. There is the obligatory coffee break, which we usually schedule after buying a magazine or paper so we can read to each other over a leisurely coffee.
Lunch is another rest period, and if you are thinking there is an awful lot of resting going on then you are right. Even with all of these control tactics the effort is such that we can only stay out for half a day rather than a full day. On the bright side there is no way I can get dragged around dozens of shops looking for something she does not even need.
A half day out like this will take one or two days to recover from. By recovery I mean sleeping like it is an Olympic sport.While all the recovery is happening it will be up to you to do the chores. Any bout of housework by your partner will take a commensurate recovery time.
Many of the medications for POTS can elevate blood pressure. I have learned to take blood pressure so we can monitor it regularly. There you go, a cuff and stethoscope as a birthday gift, just what everyone wants. My other half uses a heart rate monitor regularly to both asses and records her heart rate. This has provided invaluable evidence for the sceptical medical profession. Christmas is therefore sorted with a Garmin FR60 On the whole you will have to learn to slow down and be prepared to change or abandon plans at short notice in response to the symptoms.
POTS can be isolating, you will have to find new ways of spending time together as you will be the only one there to keep them sane.

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