When I was 17 weeks pregnant with my daughter I underwent surgery to remove a mole on the underneath of my right breast that had early cell changes. Due to the fact I was pregnant and it was a relatively short surgery they didn’t want to give me a general anaesthetic, so decided a local would do. Unfortunately my Ehlers-Danlos means I have no response to local anaesthetic and felt every cut, and every stitch. The whole process was rather traumatic and I’ve worked hard at trying to forget it.
I was admitted to my local hospital a couple of days ago due to worsening symptoms in my eye and leg. Due to this it was decided last night to bring my lumbar puncture forward to that evening. I explained that local anaesthetic does not work in the slightest for me. They decided to give me a double dose in the hope it would work; it didn’t, which I expected, maxfax team has tried injecting several times this amount with no effect previously. Now lumbar punctures are known to be painful anyway, so to know I was having one without effective pain relief was nerve wracking to say the least.
It was one of the most agonising experiences I have ever had. It took multiple attempts to place the needle correctly as they found the spaces inbetween the spinal collum to be be extremely narrow. It’s been just over twenty four hours since and I’ve struggled to move. My whole back is in horrondous pain, taking a deep breath or swallowing liquids really seems to agreviate it. I’ve also lost sensation over my waterworks which is concerning. I’ve spoken to the consultant but everyone’s answer over this is that I need an MRI, which apparently is booked but no can tell me a day or time.
I’m missing my kids loads but I know that being here is where I need to be. If this helps put a piece of the medical jigsaw in place and leads to better management that can only be a good thing. Just got to take everything one moment at a time.
I intended to write this on Wednesday but this week has been extremely busy – I’m not complaining, I’m loving it, even if Benedict my Dystonia alien doesn’t. Between neurology appointments, college, horse riding and more college, I have been wheeling around like crazy, and sleeping fantastically well due to exhaustion.
I visited my wonderful neurologist on Tuesday, and got my six usual injections. Two to the eye area, jaw and neck. Receiving my injections makes me so happy that I have a trusting relationship with my neurologist, as I really dislike needles and would not let anyone else stick needles near my eyes! He even cracked a joke when cleaning the area with alcohol wipes that he was sorry it was not the good stuff…this really made me laugh as I’d just informed him I was going to try to come off some off my medications over the christmas period so that I could have a drink on christmas day, my 21st birthday and new year.
Whilst I was at my appointment my neurologist diagnosed me with chronic migraines. I have had what I thought were just normal but painful headaches for years. The opticians told me to tell my doctor but he just advised I drank more water which did not help. Recently I was having pains in the back of my eyes that have been so bad that I have had to shut them and go to sleep. I had been concerned that the pains were caused by my blindness, so have been relieved to have this diagnosis. He has promised to look into what treatment he can give me for them, so I look forward to my next visit.
Last week I hurt my back and neck when I had an episode of functional paralysis whilst sitting in my wheelchair – I ended up flopped out the side. This has resulted in a long recovery process. So I am extremely pleased that I have managed to cope with such a full on week.
Despite a repeat incident at college today, my back is not to bad! I find this reassuring as I hope this means that even though my Dystonia still acts up constantly, my body is finally getting used to all the extra activities I have started doing.
I feel like I have gone from drowning in this condition, to treading water, and now I have reached doggy paddle stage. I am not swimming up and down life like a good swimmer, but I’m moving around better, my head is firmly above water and I’m living life to the full.
So my body seems to have decided to change its tactic. Normally when I am in a lot of pain I have a Non Epileptic Seizure. The last two weeks or so my body has disconnected from certain parts of me or all of me, leaving me functionally paralysed. I have had a handful of seizures as well but the functional paralysis does seem to be my body’s main coping mechanism now.
I am in two minds about this change. On one hand I am happy that there has been a decrease of seizures, as it means I am conscious more often, not forgetting hours either way of the seizures etc. On the other hand the functional paralysis can be rather scary. The first time it really hit me I lost the connection to the lower half of my face for 7 hours. A big part of me knew it was just my body coping with pain, but a small part of me was terrified that something worse was at play such as a stroke. When the functional paralysis comes out to play I either disconnect for one to two minutes or I disconnect for hours. There is no middle ground.
As I type my right foot is in spasm. It felt like the force of the spasm was trying to break my big toe. I was in a lot of pain and was beginning to think that I should be sensible and shimmy down the bed a bit so that I did not hurt myself if I ended up having a seizure. However instead of seizing both my legs ended up functionally paralysed despite my left leg having no spasm in it at the time.
I am seeing my neurologist on Tuesday for my injections and a chat, so am going to add functional paralysis to my list of questions. I’m not sure if there is anything he can suggest to help but he may be able to advise something. I think I prefer my body coping this way but at the same time it scares me slightly.
After Tuesday nights functional paralysis drama, I am pleased to report that my little Dystonia alien has not scared me witless with a repeat episode (so far). In fact other than a light and pain triggered seizure whilst at college yesterday, I have been rather good. I even managed to go riding on Thursday!
I spent Wednesday in bed resting, as I did not want to trigger off any spasms or seizures as I desperately wanted to attend both college and riding on Thursday. Amazingly my Dystonia gave me break from the recent dramatics and I only had to contend with my usual spasms. The normality of the usual spasms were a much-needed breath of fresh air. Both college and riding went fantastically well, with my spasms only acting up right at the end of riding – thankfully that was perfect timing,
Yesterday, for several hours my legs were functionally paralysed, this did not scare me as I am used to this happening several times a week. It turned out that it had been triggered by me strapping my splints to my legs too tightly – but hey its a lesson learnt. I now know to always check the tightness after strapping myself to them. I had a little light and pain triggered seizure whilst I was at college yesterday. I feel very lucky that the college dealt with this calmly and once I regained consciousness they let me carry on as if nothing had ever happened, which is just how I hoped they would react.
Today my body is extremely sore and I am experiencing an on/off functional paralyses to my legs. Therefore I am having a lazy day in bed. I am so happy that I am managing college and riding. I had been worried that the two would be too much for my body to cope with, but so far so good. It is days like the last few that remind me that despite being in a wheelchair and not really having control of my body, I can still make a life for myself and enjoy the things I love. I just have to remember to balance things out… I’ll get the hang of balancing eventually 😉
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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