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Chronic illness, relapses & what I've learned

They said this could happen. That I could get better, and be doing really well, I could recover, and then I could relapse - randomly, for no reason at all.

I only really heard the part about getting better - I had to cling onto that, I couldn't look further, especially when I struggled to believe it could be a possibility at all.

But it was: I did get better. I'd have random bad days or episodes in the heat, but I wasn't too shaken by that. And then it happened: a real relapse.

A quick bit of back story: I have a chronic illness called POTS (Postural Orthostatic Tachycardia Syndrome) - the main symptoms of which, for me, have been passing out, a fast heart rate, fatigue, and pain. At my worst (2011-12) I was passing out everyday, if not a few times a day - everything was a struggle and I lost my independence. I slowly got better, staying upright more but still plagued by the other symptoms.

Then, in March 2014 I was prescribed a medication that was new to POTS patients - Ivabradine. Slowly but surely I improved until the point where I no longer felt like I had POTS. I wasn't conscious of my own heartbeat, at all. I'd have a few bad days here and there but mostly I was fine - I was great even.

And then at the beginning of last month I felt that frustratingly familiar feeling of fatigue. I thought it'd go after a few days but it stayed. If you haven't experienced fatigue, it's not just being tired - it's the kind of worn out you feel with a bad virus or flu - you feel heavy and exhausted, and there's no real way to alleviate it. I find it one of the hardest things to work through, much more than pain.

I spoke to my nurse, increased my meds and took it easy. I seemed to be improving. Then last week on Tuesday the fatigue was back, so I worked from home. I had a few moments of standing up and feeling the blackness coming. Then that evening I passed out. Only a quick one, but I really felt it. The next day I was exhausted, my heart was racing and my head was hurting, and I couldn't seem to stay hydrated no matter how much I drank.

I went back to work on the Thursday, worn out but ok - only to pass out again. This was worse. I had the annoying aftermath of feeling like the only drunk person in the room. I went home to sleep, but I was still feeling really rough and not right at all. I messaged my parents, and they brought me home. It was so nice to be back with them, to rest and be looked after.

I was physically the worst I'd been in years, feeling awful and nearly passing out everytime I stood despite upping my dose. Alongside all of that - for the first time in a long time - I felt afraid. Not of passing out itself but the idea of being back in that place. I had visions of not getting better, of having to leave London, leave work, leave behind the ability to go anywhere by myself.

It wasn't pessimism, it was a feeling of deja vu and genuine fear. When I first got ill, the physicality of it all was scary but it was new. This time I had the memory of how I used to be and the contrast of my life now - and the idea of losing that terrified me.

Anyway, again - I spoke to my nurse, increased my meds, went back on an old one, and also went back to old lifestyle changes like increasing salt intake, and slowly I started to feel better. On Wednesday I had my first day in over a week of standing up without feeling like I was going to pass out (that's the problem with POTS - the issue is being upright, which is quite a core part of any day). On Thursday I went back to work. I was tired but I was ok, it was good to be back.

On Friday, I walked home from work. I'd relied on taxis there and back, but I thought I could take it slow - I was worried about deconditioning and losing stamina. I managed the walk, and as a light rain came down, looking a little like snow in the street lights, I smiled. I felt myself getting emotional and stopped myself when self-awareness came in at the ridiculousness of the situation, but really, I was happy. I'd doubted I'd be walking anywhere anytime soon, and it felt strange, and long, but also - really lovely. Gratitude.

Sitting working from home the other day, I had a realisation. So much of my behaviour now I think stems from that first time of getting ill. When I couldn't go out, I would sit in bed and write. I'd blog, and I'd prepare notes for directing a play at uni, and I'd think things through.

Being ill made me determined. I had to finish my degree, and I had to find enjoyment and a sense of achievement from somewhere. I also couldn't bear the idea of being known purely as the girl who passed out.

Before that, I'd struggled with confidence and with procrastination. I'd have ideas but not start them let alone finish them. And I'm sure that part of that is growing up, but I also believe that my being ill has a lot to do with how I am now - with a strong sense of persistence and curiosity, in my personal and professional life.

I wouldn't say I'm thankful for being ill, it's been bloody awful and I could have done without it, but it has made me embrace both discipline and creativity in a way I'm not sure I would have otherwise.

When really ill, gratitude would be the last thing from my mind. I'd think screw that - this isn't fair and I don't want to be held back. But on getting better, I feel so, so thankful that I am, and what that means.

I realised with this relapse too that while I've gotten used to illness and symptoms, I still haven't got used to being off sick. I want to be working, mainly because I enjoy it but also I guess I care what other people think. I don't want people to have to make allowances - and yet they do. And they're all so lovely and understanding - but asking for and accepting help is hard, especially when it's been a while.

So maybe all these years on, I don't fully accept the whole illness thing. But that's hard when it's all so unpredictable - except of course for the predictability and inevitability of setbacks. You get a glimpse of the good life and you begin to hope it's all in your past, without even realising.

Anyway, fingers crossed, touch wood, pray if you believe in that sort of thing, that my crazy heart will keep calm and I will continue to stay upright. It definitely makes life a lot easier.



Read everything else I've written about POTS here.

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