With such a condition as POTS, ones lifestyle is radically changed as I cope with symptoms, but also as I try to reduce any unecessary strain on my body so as to maximise the body's resources for healing, and so we have made many adjustments as to how we 'do' life:
- I now sit down to have a shower
- long hot showers are things of the past - the shorter the better and the colder the better.....otherwise by the time its time to get out my heart rate will be high, the blood pressure low and I am pretty unsteady on my feet which is not so good!
- I don't wash my hair anymore.......my husband either does it for me in the shower or else our maid or a carer does it while I lie down in my recliner wheelchair which is backed into the shower and we use a hand-held shower rose.
- Getting ready for the day takes hours - since I can't do everything in a continuous run (as that would mean my heart rate gets too high for too long), instead I get up and visit the loo and then lie down again for a while to let my heart rate settle again. Then I sit up to have breakfast and lie down again for a while. Then I get up to have a shower and dress and then lie down again for a while. Then I get up again and sit down while I clean my teeth and put on my shoes. And then I lie down again on my day bed.
- On my day bed I have a special angled bed-table with my laptop computer on it. (yes even on the edge of the Kalahari there is internet access - at least in the capital city it is generally available) and beside me I have a few baskets with books, stationery supplies, and other odds and ends. I also have a small cabinet with other items I need regularly, a box of snacks and my medications/supplements and the phone, and a 4 litre water flask/pump.
- Nearby is also a wrist Blood Pressure monitor (the above reading was taken on an average Spring day (not too hot), a few minutes after going from a supine to sitting position on my day bed) - the reading below was taken also on an average Spring day (not too hot) but while standing still (upright position) after getting dressed for the day.
and some days ....
- I also wear a heart rate monitor. Its what the athletes wear at the gym to make sure they get up to their desired heart rate and it gives a beep when they get over it. So i wear it to make sure I don't go over a certain heart rate and it beeps at me if I do. For me the 'beep beep' is a danger sound rather than a celebration sound - but none-the-less it is a wonderful blessing as without it, I really have no idea that my heart rate is going so high. It was because of this little gadget that I learnt that I needed to sit down in the shower and needed someone else to wash my hair for me, because doing it all myself while standing up, my heart rate was almost 160bpm! (No wonder my cardiologist compared my situation to like being at the gym 24/7 and that my heart couldn't keep that up forever!)
- I also have a special car seat-belt now - like the racing car drivers wear - so I can ride in the front passenger seat with the seat fully reclined and still be belted in.
- I am now thankfully mostly having the strength to not need the wheelchair around the house. I can walk to where I need to be and try to not stay standing up when I get there, and instead sit down. If the weather is not hot and I don't talk too energetically, I can now stay sitting for about an hour without my heart rate going over my limit - as long as I don't do it too often. (In the summer time when my legs can be seen, if I stand up for too long, my lower legs start to go red from the blood pooling and I know I need to get horizontal fairly quickly!)
- in hot weather (of which there is lots here on the edge of the Kalahari Desert - summer days can get up to well over 40), I am much more limited. I found out that for every 10 degrees over 20 the ambient temperature rises, our heart rate rises 10bpm. With my base heart rate already being high (around 80-85), if the temp is around the 40 mark then my heart rate is 100-105 before I even move.....and the limit I am not supposed to go over is 108! All I have to do is move my arm while lying down and doing nothing else (not even speaking) and its over!!!!!...............so as you can imagine I am much happier in cooler weather!
- if I want to have a good conversation or do anything that takes concentration I have to be lying down otherwise the heart rate goes too high.
- I have learnt that I can't watch tense drama movies. I didn't know until recently that the body doesn't differentiate between what it sees on TV and what it sees in real life and although part of you knows this isn't real, the body still responds with 'flight or fight' reaction response like it is real. Your heart rate increases as the body gets ready for your need to have to make some quick decisions and take quick action like you were actually part of the drama itself!
- I have also learnt that because of the effects on the eyes ability to respond properly (resulting in blurring etc), my eyes also don't cope too well with quick image changes on the TV - fast moving image changes give me a headache real fast - so some movies I have to watch only part and just listen to the rest! ......that puts a different take on 'watching a movie'!
- I also have to try not to talk while I am sitting up eating - sitting up + eating + talking is like a triple dose of increased heart rate so two at once is the limit. Talking has to wait till I am lying down again, after the meal!
- And of course some of the biggest adjustments are that I can't 'run' my own house like I once did. I thank the Lord for a hubby who not only can cook but likes to cook and treats shopping as a 'hunting expedition'! He actually gets great satisfaction from finally finding and capturing and bringing home his 'catch'!
In a future blog maybe I'll share some of what God has done with a person who He 'put on her back'!
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