POTS stands for Postural Orthostatic Tachycardia Syndrome and it’s what i probably have secondary to Hypermobilty Syndrome. POTS is a condition of dysautonomia in which some of the automatic functions of the body are affected, more specifically causing trouble with orthostatic intolerance. This basically means that when I go from lying down or sitting to standing, the change in position causes an abnormally large increase in heart rate which is called tachycardia. This affects me with various symptoms, some of which are present even when i’m lying down. I get palpitations, dizziness, fatigue, excessive thirst, chest pains, headaches, visual disturbances, abdominal pains and trouble controlling my body temperature. It also seems to be causing some problems with adrenaline output as i’m prone to adrenaline rushes for no particular reason and am usually running on adrenaline by the end of the day (whether this is caused by fatigue or causing it we’re not sure). In my case, POTS is a secondary condition to hypermobility which is quite common, again no one really knows why the two are connected. So when all the POTS symptoms add on to the hypermobility ones (joint pain, muscle pain, joint subluxations, acid reflux, decreased proprioception, easy bruising and reduction in effectiveness of local anaesthetics) i end up with a lot to deal with and a lot to ask doctors about.
Many people with these conditions are affected much more than i am and can even be bed bound or in wheelchairs and i am very thankful that i am able to get about and do things by myself. I may not be able to work at the moment but it is possible that when the POTS is investigated further i may get a treatment that works and i can start working again.
It’s strange how much a diagnosis matters to me and how little it seems to matter to the doctors. A diagnosis, for me, means that i can tell people in a short non-complicated way what is wrong, i can communicate online and through groups with others who have the same conditions, i don’t need to be scared by new or worse symptoms as i can see they can be caused by that condition and most importantly for me i don’t feel crazy and doctors don’t act like i’m making it all up. The doctors, however, call a diagnosis a “label” and say “Oh well treatment is all symptomatic anyway so we don’t need to know the cause” and “There’s probably just a huge psychological aspect to all this” These are actual quotes! Oh how they annoy me. These are the GP’s. On the other hand there are the rheumatologists who are so focussed on ruling out any “scary” diseases that they often fail to help me deal with symptoms or give me any treatment, instead taking blood test after bloomin’ sore blood test to satisfy that, no, i am not, nor will be shortly, dying.
So, you can tell doctors annoy me. Not all of them, some of them are great and helpful but unfortunately it’s often easier to remember the bad ones and they overshadow the good. I’m hoping that as i start to understand my condition more, i’ll be less in need of constant doctor visits and will be able to cope on my own with the help of friends and family instead. Though, in the case of my parents, i’m not really sure how much help i will get.
My parents seem to be in denial about what’s going on. They’re often talking about when i go back to work like it will be next week and when i get better like that’s going to happen miraculously one day. Don’t get me wrong, it’s not that i’m not hopeful it’s just that they need to accept that right now, i’m not well enough to do some things. My dad seems to get angry whenever i’m particularly unwell or i don’t do housework. It’s really quite upsetting that he can’t see how much i’m struggling and support me and instead makes it into his own problem. It’s probably because my sister has Cystic Fibrosis, which is a life threatening condition, and he just doesn’t want to have two daughters in the same boat. But i’m not the same as her, this condition does not threaten my life, just the quality of it. Anyway, i won’t rant on about my parents too much, maybe i’ll have another post for that so as i can be more sympathetic and less biased.
The Chronic Life 