Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘autonomic dysfunction’

Rare Disease Day 2020

When I met my partner Damon back in 2016 I was upfront about the fact that I had a whole host of chronic conditions some of which would deteriorate as I aged. It was a subject that I broached on our first date, romantic I know, but it was important to me that he knew life with me would not be an easy one; our first date lasted five hours. What was meant to be coffee, turned into a museum trip, and hours spent talking on a bench overlooking the River Cherwell. At the time my Dystonia was my most limiting condition. The EDS was annoying and had its fair share of debilitating moments but in comparison was easy enough to deal with.

However over the years with a good combination of medication and very regular Botox injections my Dystonia is often far more controlled, yet my EDS has spiralled dramatically so. My jaw which takes the brunt of both conditions is in need of replacement yet both conditions make replacement not necessarily the easiest call for my surgical team; it’s an ongoing argument. My knees are in a similar state. They too need replaced. They currently sublex at 0 and 30 degrees constantly yet bracing doesn’t seem to work due to the change in position with each time the knees come out of place. I frequently joke that I’m falling apart and honestly it feels that way.

The latest part of me to be affected is my hearing. My hearing tests have showed that im hearing impaired and im awaiting further appointments on the next steps to see what aids will help me. Whilst my hearing being affected isn’t overly surprising, it wasn’t something at 27 I expected to be told. However after almost a year of struggling I knew it was time to give in and get some help.

If you look at me you could be forgiven for not realising anything was wrong. Which is one of the reasons Rare Disease Day is so important. Disabilities come in all variations and I for one never look the same one day to the next.

I always say no hospital untill I’m unconcious.

“Just Stay Positive”

I have spent the majority of this week at varying hospital appointments, today is my rest day before heading back to the hospital for more testing tomorrow. Frustration and disappointment has been my main response so far to these visits. Part of this is most likely because I am under the care of several different specialists who are experts in their respective fields and generally wonderful. I’m quite lucky to have them as my doctors. However, every now and then I meet a new Dr and have to fight the same misconceptions and preconceived ideas from scratch; it’s exhausting, emotionally draining and depressing.

I’m quite good at finding the positives in being chronically ill,  I’ve been known to be in agony, hospitalised with spasms and dislocations and still be giggling away at whatever ridiculous manifestation my symptoms have appeared in this time. That being said I’m aware of how important it is to be completely honest with my care providers about how I’m managing and asking for help when I need it.

I had been counting down to yesterday’s appointment to see the local obstetric consultant as I am really at a loss with what to do to help myself. The advice so far has been plenty of bed rest and to use my wheelchair if I have to go out. This makes sense and I’ll admit I was unreasonable hoping the Dr yesterday would wave a magic wand, but university restarts at the end of the month, my fingers dislocate when I push myself and I’m pretty sure turning up to uni doesn’t count as bed rest. So I sat in front of the consultant asking if there was anything, even the smallest suggestion, that he could think of to help me help myself. “Just stay positive” was his advice. It was also the last thing I wanted to hear. 5 minutes later he admitted he didn’t have a clue about any of my conditions, so I walked him through them briefly. His advice changed to just come to hospital every time you have a fainting episode so we’re aware of you; my episodes are at the moment generally occurring over 10-20 times a day, so I’ll just move in shall I?587860e5ecea791e83ab995d35b2d52a

This whole appointment got me thinking about my array of conditions, which are confusing and do overlap, so for those of you who are curious here’s a brief introduction.

  1. Generalised Dystonia – this trickly little brain alien causes painful and often debilitating spasms in my eyes, jaw, neck, left arm and torso. It’s not curable, and every patient presents slightly differently. It’s currently playing up as I’m off treatment for the rest of my pregnancy.

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2) Ehlers Danlos Syndrome Type 3 – Unlike my Dystonia, unless I have dislocated or subluxed you cannot tell I have this condition. It causes fatigue, brain fog, pain, dislocations, allergies amongst many other symptoms.

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3) Postural Orthostatic Tachycardia Syndrome and Dysautonomia- This is a relatively new diagnosis for me. Currently this means I can’t even sit up without my heart rate shooting through the roof and my blood pressure plummeting. It’s pretty bad at the moment, due to blood pooling when I eat I pass out during meals. I also pass out if I get too hot, move too quickly etc. My autonomic nervous system is basically a bit temperamental and therefore many different automatic functions can malfunction.

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4) Non Epileptic Seizures – Previously my care providers thought these were pain related but now they think my PoTS may have something to do with it. Often Drs misunderstand these seizures and presume they are either psychogenic or part of drug seeking behaviour.nes.jpg 5) Endometriosis – I fought for years to have this investigated, constantly being told that it was simply bad period pains.  Many drs ignored the fact that they were every 2 weeks, extremely painful, and very heavy. By the time a diagnostic laparoscopy and treatment was carried out extensive damage had been done and I was told that my chances of unassisted conception were very low. This make me all the more grateful for our little miracle.

6) Chronic Lyme Disease – Lyme Disease is a bacterial infection that if caught early can be treated easily. When it becomes chronic, like in my case, it is extremely hard to cure. It affects multiple systems and therefore is frequently misdiagnosed.

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