Since last Friday my Oromandibular (jaw) Dystonia and tremor has been rather bad. These spasms leave my jaw extremely distorted and the pain is constant. Unfortunately my Botox is a week later than usual, my appointment is not until the 18th of this month. Even though I know it is just under two weeks to go now, I am finding it hard to function due to pain.
However there is always a positive and I refuse to let this be a purely negative blog post. Despite the spasms that were severely affecting my jaw and neck last Friday I still managed to get into college. I cut down my workload as I knew it would not realistically get done without exhausting my body, but I managed to get in, which surprised me as I did not expect to in the state I was in.
It never ceases to amaze me just how exhausting pain is. Today my jaw has insisted on tremoring a lot. I use a teething dummy to protect my teeth and tongue, at the end of my last tremor however I was not quick enough at removing the teething dummy from my mouth, with the way my jaw then spasmed it got slightly stuck…I cannot even begin to describe how much this amused me, it took a whole hour before I was able to pry the dummy out from between my teeth. It really was hilarious.
It is moments like these that are vital. Dystonia is hideous. The pain that I am going through on a daily basis is enough that all I want to do is curl up in a ball and sleep until I can get my Botox injections. But sleeping won’t raise awareness of the condition, hiding away won’t beat the condition. Moments of pure hilarity are part of what makes Dystonia bearable and I am so thankful for these moments!
Last time I posted I felt that I was balancing on the knifes edge and was feeling pretty negative, well I’m feeling darn good today and I plan on enjoying it. My legs have not been as bad the last couple of days, the swelling in my knees is going down and the pain in them is tolerable. This improvement has made such a mental difference as the pain was really beginning to get me down.
Having my pain levels go down has made the biggest difference as it is the pain that I struggle to deal with the most. I can cope with my body spasming, tremoring and getting into unnatural positions but the pain is what I can’t cope with. Normally it would be my jaw that causes the unbearable pain, so at least having it in my knees made a change.
I am now on half term, which mean no college and no riding however I know that it is best just to let my body rest and recover this week, before I throw myself back into everything head first next week. On a positive note I made into college last week!! After being too ill to go in the week before I was determined to drag myself out of bed and into college – trying to get dressed whilst my legs where on strike was interesting but I managed it and it was the best thing I could have done. I know that I tire very easily these days but doing normal things like college make me so happy.
As I have mentioned before my cousin David and his friend Sam are running the London marathon for The Dystonia Society in April. I woke up to see a small article had been written on them in their local newspaper (Somerset). Its so positive to see awareness of Dystonia spreading!
I often say that I wish I could see inside my brain so I could have a better understanding of what exactly is going on. As other than all the medical jargon I have no idea what exactly it is doing…this picture describe it perfectly and makes me smile.
I feel like I am balancing on the knifes edge and that at any moment I could fall. My Dystonia alien and my Lyme Disease had really managed to lull me into a sense of ‘normality’, and over this past week have decided to send me flying to the edge of the knife filled with dread. Up until very recently I had coped rather well with everything, but everything seems to have gone out the window now.
Whilst I have remained seizure free there have been a few moments recently where I have felt right on the edge of one. Last Monday my mother and my little sister spent half an hour looking after me and talking non stop to try to keep me conscious. This has not happen in quite a while and was a shock to all of us. My legs have been bad recently, to the point that last week I did not make it into college on either day, which was to me a big defeat in my battle against the two conditions.
Whilst the pain is bad and gets me down, it is the unknown that I struggle to deal with. My body has progressed and regressed so many times, and each time I deal with it. However it gets harder to do so each time, and right now I have no idea which way my body is going to swing. It may pull through this horrid period and be absolutely fine or it may take a nose dive.
I know there is not much I can do other than stay positive but I can’t help but be scared. Hopefully this is just a bad period and soon my mind will be put at rest.
On Tuesday I went up to London to see my lovely neurologist. It was overall an extremely positive appointment. I was very much in need of my Botox injections as in the days leading up to it my Jaw spasms were back. I had my usual six injections (eyes, jaw and neck) and then two my calf. We are hoping that injecting Botox in my calf will prevent the spasms that cause my feet to turn upside down.
I like to keep myself busy, but my neuro has really stressed to me that this is something that has to take a step back for now. I need to slow down, and do less than what I am doing. Doing too much puts me at risk of running myself down and making my condition worse. This is not the first time I’ve been told this but I am really going to try to work on in this now. I don’t want to put myself backwards, I want to keep going forwards and if slowing down is what it takes then I’m going to make a conscious effort to do so.
I’m not seeing him again until the 18th March, which is 7 weeks from when I saw him on Tuesday. I would normally see him every 6 weeks for my injections but there was no clinic on the 11th. This concerns me slightly as the spasms in my jaw tend to come back around week 5, and I don’t want the pain causing a seizure or interrupting my college commitments. However I have not had a seizure in a while so I am hoping that if I fill myself up with painkillers then I should be fine.
This weekend, I went out and saw friends. Now it was just at a mates house watching movies with them all, so I’m hoping this doesn’t count as overdoing it!? It was so great to sit back and have a laugh, and just feel like me again! I can do a lot more now in comparison to a year ago, but activities like yesterday make me feel like I am still in there somewhere, Dystonia and Lyme Disease have not truly taken over.
Todays blog i am going to keep short and sweet…you can all breathe a sigh of relief ;-p. I want to start by saying thank-you to all of you who have nominated me or endorsed me for a WEGO Health award, it is extremely touching! Below are some links that I think are really worth checking out! Happy reading.
I was doing my usual surfing of The Dystonia Society’s website and came across the link to The Global Dystonia Registry. This is a huge international database of Dystonia sufferers that scientists and researchers are using to understand Dystonia better. The more sufferers that register themselves on the database the more research can be done, and that can only lead to a more optimistic outcome for us all! For anyone who wants to know more here is the link to The Dystonia Society’s page which explains a bit more http://www.dystonia.org.uk/index.php/about-dystonia/global-dystonia-registry .
This year is full of exciting things, one of those is the London Marathon which my cousin David and his friend Sam are running in, to raise money for the Dystonia Society. I admire them for doing this, despite the weather we have been having, they have both continued training out along muddy canal paths and fields. They log their progress on Facebook and twitter so please follow them as they train to raise money for such a fantastic cause!
It is amazing how well controlled Dystonia can be when you have the right combination of medications in you – for me Botox is the best thing, followed by a lot of Gabapentin! A year ago, I would have had a hideous amount of seizures due to jaw pain and would have struggled to eat, drink and talk. Now with regular Botox and other medications I am constantly my normal motor mouth self.
Everyone with Dystonia reacts to medications differently,for example I know many people find Clonazepam helpful but it causes me to become psychotic. Yet there is no one medication for Dystonia which makes treating it and getting it under control extremely hard. I am very lucky to see an excellent neurologist who is willing to inject me with Botox every six weeks, if he stuck to the usual every 12 weeks I would not be able to do half the things I now can.
On Monday I saw my GP to discuss IV treatment for Chronic Neurological Lyme Disease. I have been on oral antibiotics for around 8 months now and have had significant improvement in the areas affected by Lyme. After months of both myself and my neurologist asking him to set up IV treatment he has finally agreed to write to a couple of the local hospitals and see if they will treat me! This is fantastic progress.
My little Dystonia alien is all full of Botox and docile at the moment. I have been off my main painkillers for a few weeks and I have not had any bad pain episodes yet *touch wood*. I have also managed to come off one of my muscle relaxants, this is great as everything seems clearer and I feel like my memory has improved. As much as I do not like pickling my liver with all my medications I’d be lost without them. I am hoping that this stage of feeling like my Dystonia is ‘contained’ and ‘controlled’ continues, but nothing is ever certain in life especially with Dystonia, so I am focusing on enjoying every little thing each day.
Since I became ill last summer, I have tried to be careful in everything I do. My body has limits and I have to learn to respect that. However it’s hard to keep within the limits when they keep changing, and when outside factors alter them constantly. I often tend to step over the boundaries, simply because I know that if I don’t test them now and then, I’ll never know what my body’s full potential is. Though I must admit I also do this simply due to craving the freedom my body once had.
A couple of weeks ago the college phoned me and asked if I would like to attend the Clothes Show Live 2013 at the NEC in Birmingham. After a discussion with mum about if this would be beyond my bodies limitations I decided that I would go. I was extremely nervous as the furthest I have been from mum since I got ill is when I ride, and that’s not far at all. If something happened, I knew that I would most likely wake up in a strange hospital before mum could get there. A situation I did not want to end up in. Thankfully all my worries were for nothing.
I had two of my learning support staff with me to make sure I was safe and to push me around. It was a truly fantastic experience that I am incredibly thankful for. The college had booked a coach that had access for my wheelchair in, and for the main runway show we had the best seats! Other than the odd twitch and my right knee paralyzing on and off, which I’m used to now, my body was perfect. I think I have shopped for this years christmas presents and everyone’s birthday presents for next year!
I expected my body to have a complete meltdown today, but other than being very achy it’s behaved well. I have managed to go to the opticians and have a couple of Coke’s out in town with my family, without any issues.
Below is my favourite photo from yesterday :-p
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.
“Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person’s symptoms can vary from one day to another“, NHS Choices. This quote sums up Dystonia quite nice and simply I think. It is extremely unpredictable, which makes it hard to work out what you are capable of doing one day to the next, if you guess wrong the games over for the day. In my case guessing wrong would result in me putting my spasming body to bed and hoping that a long nap will help calm my symptoms down…but thats providing the spasms don’t stop me from getting to sleep. I always try to make the most out of each day, to accomplish as much as I can incase the next day results in being unable to move from my bed. However trying this can often backfire on me and ensures that I spend the next day in bed, but sometimes if I’m really lucky I get away with it for a day or two. These are the days I love, as on these days I am beating my Dystonia – not permanently, but even an hour of winning is a huge achievement.
Dystonia symptoms and it’s impact varies from person to person. A quick glance at the Dystonia Society’s list of type of Dystonia and their symptoms gives you an idea of just how wide a range http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia . Due to this it does not surprise me that Doctors understand so little about the condition, why patients have little choice but to fight tooth and nail to find a treatment that works for them, to find a doctor who will listen. Through the power of the internet I have slowly got in touch with more and more sufferers, and even a handful of curious doctors. The sufferers amaze me. I hear the stories, and count myself lucky that I have a good support network, something many do not have. We all band together to raise our voices to get Dystonia out there, and it’s working. Slowly but it’s working. The emails I get from Doctors around the world prove that.
Yesterday at Choir we were practicing Christmas songs, which got me thinking of all the things I was thankful for. As much as I wish nobody had to suffer from this hideous condition, I am so extremely thankful that there are others out there. That those of us lucky to have found each other can support one another, give advice and a listening ear. Without being in contact with these amazing people, I honestly wonder how I would cope. I am also thankful to those of you who read this blog, and often share it with others. Since becoming ill I have become determined to become an advocate for Dystonia, to make my voice heard, and bring awareness to the condition and what it is like to live with it. Looking at the comments you lovely people leave me, the shares, likes and statistics brings me such happiness, as it shows me just how far my voice is being heard and assures me I am on the right path.
On one last note, I promised a while ago to upload photos of the amazing women who raised money to buy me a bath lift. I have attached them underneath. I feel incredibly lucky to have met such generous and caring women.
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.