Wednesday, November 9

POTS for dummies

This day, the 9th of November, was a momentous day in the life of me. I swam a kilometer - 40 laps. This is not just momentous because I am the un-sportiest, clumsiest, and most water fearing girl I’ve met. It’s momentous because 4.5 months ago a specialist told me that if I strenuously exercised every day, I would regain my health. And he spoke to me of a much improved patient who swims a kilometer four times per week, to which I felt a certainty in my stomach that I could never do anything like it.
Try to picture this situation. Me, sitting in his office, skinny, weak, and tired – so sick that I had wanted to lie on the floor in the waiting room before seeing him. He knew I was here because I had been diagnosed with Chronic Fatigue Syndrome, and because a friend had recommended I see him after she had been re-diagnosed and consequently recovered. I certainly didn’t expect this specialist’s first question to be, “Are you abnormally flexible?” Really, you’re asking me about my flexibility, how on earth does this relate to my being too sick to go do anything? I delayed my questions, and said that I was somewhat flexible, and had been able to do the splits when I was dancing. He asked me about other unique stretchy positions I might be able to reach, and we tried some. The conclusion was that I was abnormally stretchy, and he had known it from shaking my hand at the door, as it crumbled in his as it compressed.

Then we spoke for a long time about things like my having had Epstein Barr Virus two years ago, my circulation problems, and all the illnesses in my childhood and family. Next we discussed the odd symptoms I have. How surprised I was when he asked if I ever had a sore jaw, and a million other strange things which he saw regularly in his patients. I was overwhelmed by the fact that so far he had told me all that I was feeling, and I had told him nothing!
It came down to him explaining that being ‘abnormally stretchy’ results in stretchy blood vessels too. When the blood goes down into my legs, it stays there because the vessels enlarge instead of remaining firm and pushing the blood back up. As I have been sick and lying down for some time, I have no muscles to help push the blood up either. Therefore, I don’t get enough blood to my other vital organs (i.e. my brain) – hence I always feel like I will faint, and so sick. He really believed that most of my symptoms would ease if blood could get around; though he said gut problems he did not yet understand.
Next he told me that there is no cure for making blood vessels less stretchy. Grrrrrr. But – if I strenuously exercised every day, I would strengthen all my muscles and they would then help the blood to move around. Nice theory doctor, but how am I, who struggles to stand up, supposed to exercise? And won’t it make me worse? Every doctor has told me to rest!
This is what he said: You can’t make your blood vessels less stretchy, and you can’t make them stretchier. If you believe this is the cause of your problems and they can’t be made better or worse, then exercise can’t make you more unwell. Believe me – look at all my patients. You will feel some small improvement in two months.
So here began my somewhat skeptical yet very determined entrance into the world of exercise. I began with just six laps in the pool, completed in a speedy twenty minute time frame. Exercising horizontal was a requirement, as this meant the blood wouldn’t pool in my legs. I got an exercise bike. I bought weights. I recorded my minor achievements in my diary. And ever since, my days have revolved mainly around exercise, with all other pursuits forced to fit around that. I have turned into an exercise junkie since being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Do I enjoy my exercise? Well, let me ask you you enjoy exercising when you feel sick?
The test came that first day after the appointment. I was lying on the couch with a terrible headache and sore stomach, not to mention exhausted. I absolutely didn’t think that it would be wise to exercise – everything would get worse from putting my body under the strain. It so much less appealing than it had seemed before. With much coaxing and encouragement from my husband, I very distrustfully and resentfully donned my togs and went to the pool. I swam six laps on a kick board, and it felt like I’d just danced for three legs ached.  I emerged, and to my great surprised, my headache had left me, my stomach felt normal and I felt very physically demolished, yet good.
Please don’t think that I was convinced after that episode. I was not. It took a lot more coaxing and groaning and tog donning and flailing in water to convince me that this would help. I am not remotely sporty, and I detest exercise, if it’s not performed in a classical ballet class in leotard and bun. But, I am now fully convinced. The only problem is that I still kick and scream at the idea of going for my swim, hopping on the bike, doing my weights. It just doesn’t get any easier leaving my warm snuggy home to go and work up a sweat, and huff and puff.
My doctor was right however. I have not gotten worse; instead I have improved more than I dreamed I could in this time frame. No, I am not cured, and I have plenty of crappy days. But I’m making tiny steps and rejoice in each one. It feels like just yesterday I was in awe of the sick girl who could swim a kilometer, and today I reached that goal. Now I’m aiming for two.  

Ps. A few facts about my illness for the curious:

- I was born with stretchy blood vessels, so this is something I will always have to manage.
- It seems that it was bought on by my familial history, Epstein Barr virus, and an inability to recover from this as I was overworking and stressed.
- I was tested with a 72-hour heart monitor, which revealed that my heart rate is good when lying down, but rises abnormally high when I stand. This confirms how much stress my body is under when I am upright and is a definite sign of orthostatic intolerance.


  1. Finding your blog really helpful Dee. Have so much more understanding of POTS. You write really well

  2. Thanks for having a read Jan! I'm so glad you're to hear that :-) x