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Freaked

You Can Improve

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I've been absent from this forum for the past few months, cos I went to a pretty low place and am slowly working my way back. But I just wanted to make a post saying that it is possible to improve. I got POTS suddenly in Feb 2013. For about 5 months, it was awful. I felt...there isn't even a word to describe it. For 7 more months, I was still too crippled to leave the house or enjoy the things I used to, to be physical with my boyfriend, or even to have animated conversations with my friends. In Feb 2014, I had a relapse and another month-long fever, and my only doctor abandoned me after admitting me to hospital. He didn't know what to do for me, so I never heard from him again.

After that, emotionally, I was a zombie. I had so little hope. Nobody else seemed to have POTS as bad as mine. I didn't know if I would ever get significantly better. But I got a message from a girl on Reddit who told me that after hitting a nadir two years into her illness, a year later she was able to walk across Brooklyn Bridge. It gave me some hope.

So I thought I would pass on the favour. A lot of stuff has happened to me in the past few months that I should share on here, but suffice it to say I can go into the city in my chair now. I can do sit-ups. I can walk around shops and stand in queues when I need to. I can even take a flight of stairs without being on all fours. I can play piano, and sit upright in a chair with my feet on the ground for hours. My HR has gone from being commonly 160 just standing up, to being 100-120. 120 is now my walking rate, and I can't tell you how much more manageable that is. I'm no longer breathless for an hour after dinner (touch wood).

These things may sound modest, but they've enabled me to enjoy life again a bit. I'm still not where I'd like to be (well again) but I'm hoping to be able to do a course or get a job next year, and that's huge. So to anyone out there in the midst of this condition, feeling like there's no hope, please know that it can get better. Even if you've been sick for a while, even if you've had your hopes and progress dashed before. There are some of us out there who understand what you're going through, and you have our support, and our respect.

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I agree Freaked. I am also so much more functional now that before. There is hope. Thanks for sharing.

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The most frustrating thing about this illness is that it is seemingly impossible to predict how it will progress, and patients often yo-yo between being extremely symptomatic, and enjoying relatively symptom-free (or reduced) times.

I'm glad to hear you've improved! Just be pragmatic about your outlook and try to find some way to enjoy your life whether you are up or down :)

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