Poetry isn’t my typical style. Even in my job as an author I write children’s books and YA fantasy fiction. However putting pen to paper and writing whatever comes out is how I deal best with my emotions.
I wrote this last night while in the bath. I’ve been struggling with nerve issues recently along with another round of optic neuritis that has drastically impacted my sight. This is the unedited raw poem that came from the turmoil. It may not be the best but it’s the best representation I have of me right now. I know others will understand.
I’ve had some new followers to this blog and it’s accompanying Facebook page recently, some of whom have been curious as to what on earth is wrong with me; after all the name implies Dystonia but a multitude of conditions get discussed. It’s a good question. So I thought I’d take a moment to write a short post reintroducing myself to you all.
I started this blog back in September 2012 after my life felt like it had been turned upside down. I’d been training as a midwife at Anglia Ruskin University Chelmsford and felt as if I was living my calling. However I was plagued by ailing health that got more and more severe.
I had to go on medical leave at the end of my first year. Despite my determination I would never return to midwifery, which to this day still breaks my heart. My body was no longer my own. I was wracked with spasms, needing a wheelchair to get about, I couldn’t even feed myself. It took months going from doctor to doctor, hospital to hospital, ambulance after ambulance until we finally met my old neurologist who finally shed some light on what was happening to me.
Initially I was diagnosed with functional Dystonia. A diagnosis that I fought against. I’d been physically abused as a teen by my father and this trauma led doctors down the functional route. Five years later my diagnosis would be changed to Generalised Dystonia. Upon my diagnosis I felt so lost. I’d moved back home, had no independence, lost my career and no one really seemed to know what Dystonia was. I made it my goal to educate myself as much as possible. So I set up this blog and it’s Facebook page as a way of connecting with others who were going through similar experiences, and as a way of raising awareness of the condition. Advocacy has become a great passion of mine.
Over the years more conditions have been diagnosed, such as Classical Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardias Syndrome, Lyme Disease Osteoarthritis and more. I’m surprised I don’t shake with the amount of medication I take. Learning how to manage all these conditions and live a full life has been hard and is still something I am trying to learn to balance. The symptoms and pain I experience in a day change hour to hour, I dislocate multiple times a day, have vocal tics, spasm, etc. It can be a minefield to manage. I’m very lucky that I now have a career as an author with books 7,8 & 9 being published this year, which gives me the freedom to write around my health and my family.
This site has become a diary of sorts. Where I can let out the awful days, whether it’s a physically bad day or an emotional bad one. Or celebrate the triumph’s with you all, which is something I try to do often. It’s a way of processing my conditions in a healthy manner while also raising awareness and supporting others. I find when I need to reflect on how far I’ve come in learning to manage my conditions through medication/physio/wheelchair/splints etc reading back through my past posts is a great aid. I can easily reflect on my progress, and see the milestones that I thought I’d never meet; such as graduation (I studied publishing instead) having children, getting my independence back through my electric wheelchair.
I’ve had this blog for coming up to eleven years now. While I hope I don’t need to add anymore conditions to it, I don’t plan on stopping posting anytime soon. I’m so grateful for the readers and friends I have made through here and for their support. Thank you.
Botox for me is life changing. Without it I would be hospitalised on an NG tube, unable to talk, swallow, eat, or drink. I’ve ended up in that exact situation previously. It’s unpleasant to say the least. I’m fortunate enough to receive Botox from my neurologist every twelve weeks and then a top up at the six week mark in the cycle from my maxofacial team to keep my jaw going.
I am extremely fortunate to experience very little in the way of side effects. Generally speaking I get ‘botox flu’ for a few days after and a flare in my complex regional pain Syndrome symptoms in my arm. This time though my mouth has been weakened slightly by the Botox. It’s not physically painful in anyway at all, it simply means the corners of my mouth are dropping.
At first I didn’t notice it to much, then I was hyper aware. I found myself wanting to be in pictures as little as possible as I knew I’d fixate on the turned down corners of my mouth despite the focused effort to smile. I was finding myself deleting photos of myself and the kids, myself on days out etc, over something as ridiculous as an altered smile.
It’s not as obvious in both photos above, but the fact I’ve kept these picture is a big step forward. I started to think about the example I was setting my children. It was not a healthy one. I do not want them to grow up thinking that we should scrutinize photos for imperfections. Photos have always been for us a treasure trove of memories, to help remind us of the many memories we have made together. Both my kids love getting our photo albums out to look at and this something I hope long continues.
My altered smile, is not permanent, however it is a reminder that I am one of the lucky ones who receives treatment and responds to it. That is something to celebrate not to fixate on. Whether it stays droopy or returns to normal I’ll keep snapping photos of our days out making memories. After all it wasn’t long ago I thought Dystonia meant the life I have now would be impossible. Forever thankful for Botox injections and medication.
Today was botox day up in London with my lovely neurologist. He’s happy that the medication we started on a few months back is keeping me far more stable, which is amazing, so we are keeping that in my treatment plan. I’m currently on a medium dose so we have room to play with should we need to come winter when I typically go down hill due to the cold.
I’ve finally gotten the date for my video fleursoscopy which is the middle of next week. I’m a little nervous but it will be good to shed some light on what’s been going on internally and if there is anything specific that we can do/change to tackle it. This is to tackle the chronic aspiration.
Then it’s on to blood tests. Whilst I don’t mind these particularly, my veins are world class players at hide and seek. No matter how much I drink before hand they like to hide or better yet collapse. I often leave blood tests looking somewhat like a pin cushion. These are being done just to double check there’s nothing being missed and causing any issues whilst we wait for Gyny to see me. They were meant to see me almost a year ago. However they keep rearranging and cancelling my appointments, which my lovely GP is chasing. In the meantime I’m left with regular pain flares that leave me doubled up in pain.
I’m hoping now that more people are vaccinated that appointments/refferals may start going back to normal. Specially orthotics is one appointment I’m looking forward to, my knees and wrists need new splints. It’s not an urgent appointment in anyway but it would make day to day life a bit easier and reduce pain a little more.
In the meantime I’m ticking along. I’m looking forward to the schools breaking up and making the most of the summer holidays before my eldest starts primary school full time.
It’s been a few weeks since my last post, as some of you will know from my Facebook page I took time away whilst my son had a major surgery. Now things are settling again the posting schedule will be returning to normal.
So what’s been happening? My neurologist and I have been trialing different medications over the last three months to try and improve my quality of life, bring my pain levels down and reduce the number of Jaw Operations I have. We tried a number of different ones before landing on trihexyphenidyl. This medicine has been life changing. It’s drastically reduced the constant jaw spasms, and whilst they are still there the severity is reduced and manageable. We’re still playing around with the dosage to see how much further we can control my spasms. It’s been amazing.
I’m still waiting for a Barrium Swallow test to confirm my chronic Aspiration and give the dietician an idea of what thickness fluids need to be to help stop this. In the meantime the speech and language therapist is checking in regularly to ensure I’m doing ok.
Currently I’m waiting to see my Gastro Dr as my GI symptoms have returned. It’s extremely painful to eat or drink anything heavier than a cup of tea. I’m pretty much living off sugary tea in the meantime to get by.
On a more positive note I’ve just signed a three ebook deal for my young adult fantasy series which is very exciting. I feel very fortunate that this is something I can do from home while the children are asleep, as given the severity of all my conditions on my body a typical job is out of the question.
Finally I want to say thank you for the support I’ve received over the last few weeks. It’s been extremely touching. Now that this post is up and you are all caught up I’ll be back to posting my usual blogs from tomorrow.
After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.
If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.
Today I finally had my Emergency Video Consultation with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.
He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.
So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.
Currently I’m sat in the rush hour traffic on my way home from seeing my neurologist in London. It’s been a long day which upon arrival I soon expected to end in despair. Despite email confirmation of my appointment, my slot had not been added on the system. I’m a big believer in to be early is to be on time, and this slightly over anxious side of me always shows itself before appointments; being extra early was something I was extremely relieved about this time as it meant that they had time to order up the injections.
Watching the lights go past.
Thankfully I was seen and as usual I left feeling ever grateful that I’m under my neurologists care. He’s been a rock for me these last 8 years and continues to be. He’s agreed with maxfax recommendations to start me on Sinemet and recommended an alternative to try if this one doesn’t have the hoped for impact. Maxfaxs theory is that there are a small number of EDS (I’m CEDS) who also have dopa responsive dystonia and that I may fall into this category. I’ve not tried any of these medications before so I’m keeping my fingers crossed and hoping for some sort of dent in symptoms.
I’m planning on resting most the journey home as the injection site in shoulder always aggreviates my complex regional pain syndrome. More on this tomorrow.
After a week long stay I was finally discharged from one of our local hospitals yesterday evening. I was admitted due to pain in my left eye which has optic neuritis, it had become overwhelming, to the point I felt I had to apply pressure on my eye to relieve it. I had also lost the sensation in the bottom half of my right leg.
During my time in the hospital they decided to carry out a Lumbar Puncture and MRI knowing that my neuro team wanted to do these anyway. The LP side effects I’m still dealing with, I am still having issues with my bladder, my whole leg now has no sensation, and I have a permanent horrondous headache. Both tests came back clear which left the dr’s there confused. On discharge I was diagnosed with Complex neurological disorders and global sensory loss in the right leg, and told my neuro team would take over figuring out the cause.
Today I had an Opthalmology appointment at another hospital. The opthamologist in charge of my care is wonderful. I sat down, he faced me and said “So you have MS ” he was quiet matter of fact about it. I corrected him and pointed out that my tests had come back clear. He muttered that they were wrong and went on to examine my eyes. After several tests he sat back looked me in the eyes and again said “Rebecca you have M.S”. He was quite insisted that my doctor’s must have missed something on my scans due to the state my eyes were in.
So where do I go from here? Such wildly different view points, everyone agreeing that my local neurology team needs to see me again and review what the different teams have found. However getting hold of them is darn impossible. Both myself and my gp surgery contacted them a few days before I was admitted informing them I was going downhill, and needed input desperately. Neither myself or my gp’s surgery has had a response yet.
Right now I’m very emotional and very stressed. I’m taking things moment by moment and trying to just accept things as they are and get on with it. But I work best with action plans and right now I don’t even know who’s responsible for my care. I feel very lost in the system.
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.
Being diagnosed with a chronic illness, for the majority of people, stirs up a lot of emotions. Its a process we all go through at different rates, and there is no wrong or right way about it. With illness there is often a sense of loss of normality, for every individual that’s different depending on your condition and what symptoms your experiencing. I really wished I had been given a heads up back when I first got ill about the grief I would feel, for the profound sense of loss I would experience. I fell into a really deep depression and for a long time was in denial thinking that somehow I was just going to wake up one day and be able to return to my Midwifery degree. If you go back to some of the first blog posts I ever wrote on this site it’s really quite easy to pinpoint which part of the Grief cycle I was in.
I turned to a combination of Cognitive Behavioural Therapy and Mindful Meditation to help me come to terms with my health and my new reality. This was a good mix and after a fair amount of time had passed I reached acceptance. Now don’t get me wrong I still had blips, a friend would announce they had decided to train as a midwife, or I’d find my old coursework in a clear-out and I’d slip mentally for a few days, but I would always be able to pick myself back up again. However what I didn’t expect, and again I wish I had been warned that this was a possibility, was that with each new diagnosis that got slapped on to me, and with every new symptom that became clear was on a downward path and here to stay; that I would find myself having to repeat the Grief cycle again.
It of course make sense that you would have to. You are after all experiencing a loss of sorts again. Mentally and physically its challenging and draining. It is natural for you to grieve, to be angry, to want to challenge what your going through until you reach some sort of acceptance. I’ve found myself going through this again recently. I’m on my 7th bout of Optic Neuritis, along with loss of all sensation in my right leg; I have next to no use of it currently. My local neuro team suspect MS but are investigating fully for all demylation diseases to ensure nothing is missed. Finding myself once again with more limitations, really sent me spinning. I found myself asking why over and over again. I felt like I needed an explanation because it seemed insane to have yet another condition added to my already extensive list. I’ve not reached acceptance yet, but I’m remembering my mindfulness and I’m defiantly moving through the stages quicker this time.
If I had to give one tip to someone newly diagnosed with a chronic illness it would simply be to kind to yourself and to remember to practice self care. Your allowed to grieve, its natural, don’t beat yourself up. Make sure you don’t bottle your emotions up, confide in someone you trust. you will feel better for it.
Dystonia and Me 