Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘fear’

Functionally Paralysed

Terror. That one word sums up how I felt for 7 hours last night. My face had not been good for most the day, and by the evening my tongue didn’t want to stay inside my mouth and my jaw was slightly deviating. This eventually became rather painful so we resorted to Oramorph and I tried to take a nap in the hope of sleeping the spasm off. However the symptoms I woke up to terrified me to the point of tears.

My brain had disconnected from the lower half of my face leaving me functionally paralysed. This meant I could not open my mouth, talk, eat, drink, swallow, take meds etc. I could do nothing, and I could feel nothing. I was terrified. Now I’ve had a similar thing happen to my legs before but whilst that unnerved me I could deal with it as I could communicate what was going on and they always came back fairly quickly. However this time it took 7 hours to come back and with each passing hour I grew more and more scared. I had no idea what to do.

Doctors have no idea why this happens hence the term functional put in front. My neurologist thinks that for me this is my body’s way of coping with pain. When the pain triggers a response from my flight or fight system, my body chooses to flee by shutting itself down. I have no control over this and it scares me. The medication that can help with it I am unable to take as it interacts with other medications that I rely on.

Last nights 7 hours of facial functional paralysis was a new level of fear. I had no idea what to do. I could not communicate my fear. I tried my best to sleep, in the hope that relaxing and resting would help. However I found it very hard to relax and get to sleep. I managed some sleep but it was very on and off, every time I woke up to discover that it was still paralysed I became more unsettled.  Thankfully at 3am my brain reconnected and I quickly took all the pain meds I could and went back to sleep.

This morning everything seems to be working, however I am on the weary side of it all, and still rather nervous. I am only eating very soft foods and trying not to talk to much to try to avoid triggering anything else off. Luckily I have an appointment coming up on the 8th with my neurologist so I can discuss this incident with him and get an idea of what to do should this happen again – hopefully it won’t.

I hope that I shall never experience this disturbing symptom again.

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Waiting Lists

In the post today I had a follow up letter from my neurologist. He is still hoping to get me admitted into my local hospital for treatment, however if the hospital does not want to take me on, he will put on the waiting list to be admitted into the National hospital for Neurology. The waiting list for the National is a year long.

I am in two minds over this. It would be easier for me to be in my local hospital, as it would mean quicker treatment, my family and friends would be able to visit easier, and its an environment that I know well. However if I was admitted into the National I would be on a ward that has treated many people like me, which gives me confidence in their treatment plan, and there is a chance that even if I have treatment at my local hospital, I will end up at the National hospital anyway, so maybe going there first would make sense.

I know that at the end of the day treatment is treatment, and I am so lucky to have seen such an understanding and helpful consultant. However waiting a whole year for treatment scares me, so with that in mind going into my local hospital is very appealing. After all how much more could go wrong in that time? But then again, nothing else may go wrong! On the other hand even if I have treatment at my local hospital, I may still have to wait to be admitted into the National. I know that at the end of the day that I will be happy just to get treatment, but the unknown over which waiting list is shorter is slightly scary.

Wheelchairs and me

After spending the last couple of weeks in a wheelchair, I have decided that I am not meant to be in one…EVER! I simple do not trust anyone pushing me. Now I know that no-one was ‘meant’ to be in a wheelchair, but I am honestly a control freak. Every curb, bump, lamp-post, person, etc, that appears sends me into a panic! I find myself constantly saying “please steer further away from the curb” purely because I am terrified of falling out.

I know that whoever is pushing me, is trying their best not to throw me out, or run into anyone/anything, but I panic anyway. I normally end up gripping the sides or leaning away from the curb, despite knowing that these actions will not stop me falling etc. I think most of my panic is because I know that if I was pushing the wheelchair, I would be an awful driver, so in my mind, everyone is automatically a bad driver.

However, I must admit, that despite my irrational fears when in my wheelchair, I have had a few amusing moments in it. Take for example, my mother the other day, deciding to run (whilst pushing me) down an aisle in Tesco singing the James Bond theme tune. It was a moment that had us both in fits of giggles.

My fear of other people pushing me in my wheelchair, has just increased my excitement at my upcoming treatment, if there is anyway they can improve my symptoms so that I am able to walk (even if its only for short distances) would be so amazing! I can only hope and pray for the best!

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