My biggest fear.

My biggest fear is that I will get sicker, maybe it’s completely irrational to have this fear but I do and it’s hard to get rid of.

I have a total of three conditions that have been diagnosed, chronic pain in the form of New Daily Persistent Headache, which is my main problem and is what I talk about most on here, and then Postural Orthostatic Tachycardia Syndrome a chronic illness which is a dysfunction of the autonomic nervous system, and Ehlers Danlos Syndrome Type III which is a genetic connective tissue disorder which is meant to be reasonably rare.

Postural Orthostatic Tachycardia Syndrome or POTS is a dysfunction of the autonomic nervous system, the hallmark symptom is an increase of heart rate up to 30bpm upon going from sitting to standing position. When I change positions from sitting to standing or lying to standing my resting heart rate which is high already at 120bpm increases to over 150bpm and my blood pressure plummets even lower than it usually is, which is low already. This causes me to effectively pass out, however with me I got it so bad I would have what looked like a seizure although it’s not epileptic. I would effectively shake and jerk to the floor and continue shaking and jerking once I had hit the floor. This use to happen multiple times a day for years before I got diagnosed. I got diagnosed in summer 2011 when I was searching for answers for my headache which I eventually got diagnose in summer 2011 also. It was never my biggest problem and I kind of learnt to live with it as it started when I was about 12 and got progressively worse, I was 17 when I got diagnosed and put on medication which has helped control it to the point when I no longer pass out and have seizures. I don’t have a fear that this will get worse as it’s now controlled by medication and I’m pretty much stable on that front.

At the same time I was diagnosed with POTS I was diagnosed with Ehler Danlos Syndrome Type III Hypermobility EDS, my POTS professor thought I had it in conjunction with POTS as they often go together so sent me to a rheumatologist who officially diagnosed me with it. It never really caused me much of a problem, but fitted in with me having painful knees when I was younger and every time I went to the doctors about it he turned me away saying there was nothing wrong with me, and the fact that my hip pops out of joint every now and again.

Recently I’ve been having problems with my joints, it started with my left wrist a few months back, it hurt and I couldn’t put and weight or pressure on it or bend it back without pain. I went to physio but it didn’t really help and the physio guy didn’t know much about EDS when I told him I had it so couldn’t really comment on what was causing my pain. But physio didn’t help so we splinted my wrist for a while and that seemed to help a bit. But over the last few weeks it’s got worse again so I have had to go back to splinting it. And now I seem to be having problems with my right knee as well, it feels like it’s the problem is with the tendon in back of my knee, it hurts and pulls and twinges when I do things. So I’ve been wearing a knee support when I’ve been doing Tae Kwon-Do but it doesn’t seem to be helping. And then last night my right ankle started hurting and becoming painful when I was walking. And then I have a problem with my hip popping out of place and being painful when I do certain things in Tae Kwon-Do. It has to be my EDS that is causing all of this and there is nothing I can really do to help it. I’ve ordered some kinesio tape so I can tape myself up for Tae Kwon-Do as it’s meant to really help athletes and also EDS. But I’ve also come to the conclusion that I am completely the wrong sport for this medical condition, but I will NOT be giving it up, it’s a big part of me and no medical condition is ever going to take that away.

Back to the fear thing. My biggest fear is getting sicker, and I’m scared it’s happening with my EDS. I’m scared it’s getting worse and I won’t be able to do anything to stop it. But I’m scared it will get worse and worse until I can’t do simple things like walking without huge amounts of pain.

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One thought on “My biggest fear.

  1. It sounds like you’re expending energy waiting for “the other shoe to drop.” The hard truth: You’re very sick. The other shoe has already dropped 🙂 Stop waiting for a 3rd shoe to drop, just live and take care of yourself!

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