Basingstoke Team Parish

Clare: Adjusting daily life with PoTS


I was diagnosed with PoTS and Ehlers-Danlos syndrome (EDS) roughly two years ago now.  Like many of the stories on this website, I too had difficulty in being diagnosed. My only saving grace in it all is the fact I have two older brothers that had already been diagnosed with the same condition which obviously made it easier for us to recognise the signs. A good year before the PoTS kicked off I had started to have a lot of problems with the glands in my neck coming up and causing pain and no doctor and or test could tell me why it was happening.

In June 2011 I started working as a healthcare assistant in the stroke unit at my local hospital. Everything was going well and I was enjoying my new job when a month later it all went wrong. I had to have a Hep B vaccination due to the nature of the work I was doing. As some of you may know the vaccination is split into 3 injections over 4 to 6 months, less than half an hour after the first injection the dizziness started. At first I carried on as normal just assuming it was one of those strange reactions but a week later it all became clear there was a bigger problem. I had been on an early shift at work and we were particularly busy that day so some of us ended up unable to have a lunch break. I finished my shift and was leaving the hospital when suddenly it came over me and the next thing I knew I was getting up from the floor after passing out, my heart was racing and I felt awful. After spending hours in A&E the doctors again couldn’t explain what had happened to me but as my pulse rate had finally dropped (6 hours after the actual collapse) they were happy to send me home. From that day on I have never felt the same. It took doctors nearly a year to diagnose me and that was with the family history of PoTS and EDS. 
I have read a lot of the stories on this website and there are a lot of people explaining how their condition came about but not much about what day to day life is really like. Everyone is different and deals with things in different ways so I'm not saying anyone is wrong I'm just explaining how it has been for me personally.  People tell you to look up the condition and see what they say you should do but I came across a lot of sites that I didn't agree with, sites that say "if you manage to do the cooking, get someone else to do the washing up" and "don’t push yourself" and yes ok I agree you have to realise your own limitations and sometimes take a step back and let other people help if you’re feeling awful but I have heard of a lot of people who are taking it too literally.
Yes every time I stand I feel like I'm about to pass out and even leaning forward can make me feel faint but I'm not about to stop living. It’s all about adjustment. Ok so now it takes me about an hour to just get out of bed in the morning but that just means trying to get to bed earlier and get up that hour earlier, which is pretty hard in itself because as most PoTS patients will know this also causes serious chronic fatigue that can sometimes make me sleep for hours and hours but still I try and work with the PoTS instead of against it. I have learnt to make all my movements with everything I do a lot slower because then I can start to feel when my heart begins to really race and can feel if I need to slow down even more. Just like with everyone else that has PoTS, there are days I can't manage to do anything, in fact that happens more often than being able to do anything which obviously is very depressing and it does remind me of how ill I really am but after two years I'm finally realising that with the best will in the world, I just can’t beat it or control it and on those days I just have to rest. But on the other side of the coin I would rather have one good day a week when I can get out of bed and maybe even out of the house, than push myself every single day and end up feeling awful every single day. That is exactly what I did to myself at the beginning of this and although it is a stupid naive thing to do there was a positive to come out of it all and that was I figured out my limits. That is one of the hardest things to do with this as it is like being given a new body you’re not used to using. By pushing my limits yes I sometimes made myself worse but sometimes I would manage things I didn't think my body could take and it made me proud of myself and boosted my confidence with knowing my own body. Personally I feel that the most important thing for me is to know how my body reacts and recognising the signs when I'm beginning to get unwell. There is so much I have managed to do now that I never thought I would be able to do again and every time I manage to do those things it’s such an amazing feeling. To simply be able to walk my dogs even if only once every month or so is such a huge achievement for me it boosts me to look after myself in the in-between weeks and not let the depression take over so I can be healthy enough to reach that achievement again. So really was pushing myself such a bad thing?
I also wanted to see more about all the other embarrassing stuff too, we do have more problems than just passing out and dizziness but no one ever seems to talk about it and quite honesty I don’t know why. Fact is these things do happen and it is all things that cause day to day problems. Only 30% of PoTS patients actually pass out and I am one of those, yet even I realise that that is not always what causes the day to day struggles. Personally I find things like the pain and discomfort from my digestive system is more of a problem, the doctors think certain foods can set off the PoTS and have put me on the list for tests to discover what foods may be a trigger but until then I will just have to wait as I can't seem to figure out which foods affect me, it just seems random to me so I will have to leave that one to the doctors. Brain fog is another huge thing for me, if I can’t remember the simplest things and can’t even manage to use the words floating around in my head on a normal day then how am I expected to work? So many times I have found myself stumbling over words when I know exactly what I want to say, it just doesn't come out of my mouth right, or as I discovered recently, apparently having complete conversations with people that I have no memory of whatsoever. It’s very frustrating not only because you feel stupid that you can’t remember a conversation but also because we do know what we want to say when we are stumbling over words, somewhere between the brain and mouth it all seems to get mixed up. Also I sweat a lot, even the smallest things can make me sweat. The simplest task of walking up the stairs or trying to do the washing up or even eating can sometimes leave me sweating like mad. It is very embarrassing, especially when you meet new people who have no idea what’s wrong and you have to shake their hands knowing that your palms are sweaty and horrible. It is awful to feel like that over the small things that normal healthy people wouldn’t even think about. But these are all little details that if I can find anything to even slightly help with these problems it would help me feel better in day to day life. 
I actually found the worst part for me was not only dealing with my own body and emotions about the whole thing but also dealing with the ripple effect around me. It’s not just me it affected but my family, my friends and my partner. They were the ones who had to put me back together every time I fell to pieces. They are the ones who have to change their plans for the day if I’m too ill to do anything and they are the ones who have to watch helplessly while I pass out or throw up because my heart races so fast it makes me sick. They had to deal with it just as much as I did and I’m lucky to have those people to help me. I also found you do realise who your real friends are when you get something like this, so many of mine have faded into the background because what was the point of inviting the sick girl out, it would just bring the party mood down. I am lucky though as the important people do understand and have been there for me like a friend should. I suppose I decided to write this down because I think PoTS patients need to see that it’s a change of life not an end to life. Yes ok we may not be able to do everything that everyone else can do and certainly not at the pace of a normal healthy person but we can keep living. It doesn’t have to be the worst thing in the world and it doesn’t need to make you a recluse. There are so many issues and strange feelings with PoTS that the best way I helped myself was to learn my body all over again because once I did that I could then start finding adjustments in my life that were helpful to me. Two years after being diagnosed I'm still discovering little ways that ultimately make a huge difference to me. PoTS patients don’t need to completely lose their lives over this condition, and I hope by writing this it may help someone to just remember when they get up each day that life is what you make it and it could be worse. There are many people with many conditions in this world and some poor people can’t even use their own arms or even speak, so personally I like to remember that and be grateful for what I do have instead of what i have lost.

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