I’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.
I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.
Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous. I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.
I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest
Today was the first time I have had to give in and use my wheelchair at uni. I had anticipated that today would be harder than usual as I had traveled to London yesterday for my routine injections. My body always reacts badly to them for the first 24 to 48 hours, normally this leaves me in a lot of a pain and with an increase in spasms, which with a mix of painkillers and muscle relaxants I can manage. I therefore had not expected to fall over when getting out of bed this morning. My back and neck had gone into a hideous spasm and my brain had functionally paralysed both legs and my left arm. I spent half an hour lying on the floor like this, debating what to do. I gave myself an hour in which if I managed to get dressed I would venture to uni in my wheelchair and braces, and if I was still on the floor I would ring the Wardens.
I felt extremely proud of myself that it only took half an hour to get dressed this morning despite my brain fighting me, this must be a new personal best. I admit that as I braced the majority of my body I was extremely nervous. My peers are aware that I am ill, but they have never seen me like this, I had no idea how they or my lecturers would react. Within minutes of being in uni my nerves were swept away. Not only did no-one bat an eyelid, but people helped me when I needed it without me even asking.
Part of me had strongly wanted to not go in to uni today. I was worried of what others would think, and how I would physically cope, I had already had several draining days and was concerned that this on top would be too much. I am extremely glad that I took the leap, and forced myself to go. It will help keep my mind at rest the next time my brain decides that a day of alternating between spasms and paralysis would be fun.
At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.
As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.
I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.
The last several days have been very busy and very positive. I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.
This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.
When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.
So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me. Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.
Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.
Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.
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.
This afternoon I was up in London seeing my lovely neurologist. As usual I went armed with lots of questions. I feel very blessed that I see such a lovely man, who listens to everything I have to say. His manner is very calming, I hate needles, but his calm attitude puts me at complete ease, I would never let anyone else stick so many injections in me. I was excited to see him and to show him how much progress I have made with creating my life around my symptoms.
We went through all my queries before my injections and he was so helpful with each one. He is going to write to my GP explaining that I need the IV antibiotics for Lyme Disease, I am relieved he has agreed to do this as it means I do not have to argue with my GP about it. I have a severe intolerance to Lactose, which unfortunately all but one of medications contain. At first this was fine as my body was coping with the small amount, but now that it has slowly built up in system my body is reacting and is making my other medical conditions, e.g IBS, worse. The most annoying issue with it is that no matter how much time I sleep for I wake up feeling like I never went to sleep and I find it hard to keep going in the days, my neurologist has offered to get the pharmacy at the hospital to look into alternatives for me. This would make such a big difference. We have also juggled around my next two appointment to make sure that my jaw is in working order for Christmas and my 21st birthday.
We spoke about my functional paralysis and agreed that in a way it was positive as it was less disruptive to life, although it is not ideal. There is not much I can do other than take pain killers and try to stimulate the part that is paralysed in attempt to disrupt the incorrect signals that are being sent – this has not worked yet but I shall keep trying. I had my eyes, jaw and neck injected with Botox so my spasms shall continue to my kept in check and my jaw tremor should soon settle down for a few weeks.
It was a fantastic appointment. I am truly blessed to have such a wonderful neurologist looking after me.
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.
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.