Happy Birthday Dystonia and Me!
Can you believe it’s been 5 years of blogging already? I can’t quite wrap my head around how quickly this has come around. It feels like just last week, I searched for a webhost desperate to spread awareness of Dystonia after feeling like I was floundering in a sea of uncertainty with little resources to pursue in my quest for answers. Now I confidently tackle my condition head on and happily refer people to resources I have come to know and trust.
When I started blogging it was completely in the mindset that it would be purely to raise awareness. Over the last 5 years this has evolved to be a space where I can openly and honestly express myself without fear, safe in the knowledge that someone out in the vast vacuum of the web will be able to relate to what I am going through. My blog has become a site for awareness, expression and connection; I cannot get over how many online friends I have made. Whilst I am sad that so many of you have to live with this life altering condition, I am thankful for each one of you that has become a vital part of my day to day support network.
Over the last few years this blog has been nominated on several occasions for awards, won one, and even become a resource that several neurologists hand out when diagnosing new patients (this still flatters, astounds and thrills me). I’ve had other sufferers pounce on me with hugs and their stories at hospitals; I love this, it shows me that I am doing something right.
Just a few years ago, reaching this milestone seemed ridiculous. I didn’t know how to live each day let alone 5 years with this hideous condition. Now, several diagnoses later, I have learned to find joy and laughter in my spasms, to treasure every moment that puts a smile on my face and be thankful that drs like my neurologist exist, for without my neuro my world would be darker (literally). So instead of being disheartened that 5 years on I’m still battling, I’m lifting my chin, defying my alien and celebrating each little success.
Here’s to another 5 years.
So, this is happening…Due May 2017.
As some of you may remember, a couple of months ago I blogged that I was off all my medications and was learning to cope without them. Many of you noticed that I was very vague with my answers as to why myself and my neurologist had made the decision to do such a thing. After all, I’m normally complaining about my treatment being administered late. At the end of the summer I had the biggest surprise when we found out that we are expecting our little boy! Whilst very exciting, this meant a frank discussion with my neurologist about the available treatment options now open to pregnant me. There have been very limited studies done on the medications that I take for my varying conditions in relation to the safety of them in pregnancy, so a decision was made for me to come off of all my treatments and we would judge where to go from there.
I am extremely lucky to have a wonderful neuro who doesn’t mind me/my local hospital inundating him with emails and phone calls as my body plays its usual tricks. Although my body has been misbehaving with varying spasms and dislocations, the pregnancy itself has been progressing well. Due to having a whole host of conditions that are on the rare side of things, I have been under the care of a specialist maternity unit. It’s been fascinating seeing how they respond and their treatment suggestions; and very positive, as for a change they understand one or two of my medical conditions.
Despite weeks of horrendous 24/7 sickness, a spell in the hospital due to my Dystonia going on the rampage and a whirlwind of further hospital appointments as my body learns new tricks, I have continued with my university studies and plan on continuing into my 3rd and final year after the baby makes his appearance.(Thank Goodness for a uni with a fabulous disability team and amazingly supportive lecturers).
I’m looking forward to blogging about Dystonia and Me’s, and bumps adventures.
Five years ago I was ordering every midwifery textbook and journal listed on my degree reading list; excitedly absorbing every word each page had to offer. Through that next year I lived and breathed for the job. I am immensely proud and blessed to have had that opportunity and experience.
That year, however was blighted by ill health. I had operation after operation and frequent trips to the local A&E. Reflecting back on that time I can track the dramatic decline in my health before my Dystonia took root at the end of July 2012 and Benedict my Dystonia Alien became part of daily life.
For the first year I honestly did not cope. People would tell me how well I was doing and silently I would disagree. I was spending the majority of my time holed up in my room desperately searching for any other answer, any other curable illness that could explain my symptoms. I had no idea how to be me anymore. I had built my whole identity around midwifery, the reality that I was, and still am, to ill to practice had me in denial for many years.
Since 2013 I’ve rediscovered how to live and enjoy life no matter the severity of my symptoms. It does not matter if I am reliant on a wheelchair/stick/splint or if my body is spasming to the point of distortion and dislocation, there is always something positive to latch on to.
Now that’s not to say down days don’t occur, they do but on a far less frequent basis than previously. Generally these are only after baffling drs or a new diagnosis being added to the growing list.
Living life with a goal oriented focus has been a huge help for me. It doesn’t matter how big or small the aim in mind, the motivation it provides is key. This mindset has enabled me to qualify as a Reflexologist, complete an AS in creative writing, start a new degree that I adore and now focus on getting my novel to publication.
Aiming and achieving my goals enables me to feel as if I am defeating Benedict. I know he’s never going away but it makes living with him easier. When I first got diagnosed I could barely imagine the next week let alone year. The idea of living with my conditions for any length of time was to painful and deeply upsetting. Four years on I can look to the future with the knowledge that my body will never function as it should but excited as to what new milestones I can achieve next.
My body going wrong is something I have become rather used to over the last four years. Each time something starts functioning abnormally I find myself less and less surprised. Over the Christmas period I lost my sight in my right eye, and had some issues with my left one too. After spending the majority of my time at the hospital for three weeks I was eventually prescribed Doxycyline for a Lyme Disease flare up. This treated the issue, and everything returned to normal. I was discharged and told they would keep an open door policy for me. Foolishly I presumed that I would not need this and promptly went back to living life.
On Saturday I visited my local opticians. I had noticed that my glasses were no longer helping with my sight, my right eye had begun to get painful and was not focusing properly. After repeating over and over again the eye exam, and consulting his colleagues, the optician asked me to come back today. This was so he could redo the test and in case a miracle happened and my sight improved over the weekend.
There is something rather unnerving about watching a professional get more concerned with each passing moment. At the end of today’s exam, he turned around and asked me who would see me sooner, Eye Casualty or my neurologist. This instantly had me on edge. In theory Eye Casualty will see me quicker, as my neuro is not due to see me until the 6th June. The poor man and his colleagues could not comprehend how I had managed to not notice the dramatic deterioration in my sight. I laughed in pure exasperation at this comment, trying to explain that my body functioning abnormally was something I was used to, so it had not struck me as something to worry about. So off they sent me with an urgent referral in hand.
Upon getting through to Eye Casualty the nurse asked if I had been seen by the John Radcliffe yet. I had no idea that I was being referred to them so queried it, only to have her respond with well because of your MRI results. Excuse me? I had been informed that my MRI was clear. This took her by surprise. She has decided to wait till five to try and speak to the consultant who saw me over the Christmas holidays.
So now I’m sat by the phone waiting for her to call back as she hopes to squeeze me in tomorrow. I’ve gone from being relaxed about it all to rather nervous.
We recently got back from a beautiful family holiday on the coast. The weather was fantastic, and there is something relaxing about waking up to the sound of the sea lapping against sand. Going on holiday with Dystonia requires a fair amount of preparation. Every medication I’m currently prescribed has to be brought with us, just in case of an emergency, so that we can try to ‘contain’ the amount of spasms and deviation my body endures. Even though I can walk, both my walking sticks and my wheelchair were also packed. In all honesty I thought that packing the wheelchair was overkill, but then I have never enjoyed being it, I used to quite literally bum shuffle around the house rather than use my chair.
As many of you will be aware I have recently had a change in neurologist. At my first consultation with him he declared that he would not be following my old injection routine and that we would be switching from 6 weekly to 10 weekly injections. My objections to this change fell on stubborn, deaf ears. Due to his determination I spent my holiday, and the weeks either side of it, unable to consume solid food. Smoothies and soup were my saving grace. Chewing led to rather painful jaw spasms. It made sense to switch to soft/liquid foods in order to trigger the spasms less.
I spent several hours on a couple of separate occasions functionally blind whilst we were away. My eyes had spasmed shut. This was a complete shock to the system, my condition has been incredibly well managed for so long. It is my arm and jaw that I am used to contending with; not my eyes. I don’t think I’ve felt as thankful for my wheelchair as I had in that moment. For once I did not begrudgingly sit in it, I clambered in thankful that it enabled me to still be out with my family whilst lessening the risk of injuring myself. My family were fantastic, describing the sights in front of them to me so I could conjure up in my mind’s eye my own version. My brother amused us all by whizzing around the aquarium with me clutching on to the wheelchair with fear and hilarity.
I would much rather have not had to fight my Dystonia whilst I was away, but in hindsight I’m glad I had no option but to do so. Not only did it create some great memories, but it gave me the strength to not back down when I visited my new neurologist this past Wednesday. I stood my ground and managed to get him to agree to seven weekly injections and back at my normal dosage. This has left me feeling optimistic and far more relaxed about my upcoming move to university.
Today, as is usual for my six weekly routine, I went up to London to see my neurologist for my injections. I sat in the waiting room running through my list of questions with my mother “Whats the likely hood of the injections making my CRPS worse again? How likely am I to pass on HLA-DRB1 type Dystonia?” etc. The patient before me stumbled back out towards us all a flutter mumbling to her partner how she could not believe the Dr was leaving. The importance of my questions vanished. My neuro, my glimmer of light in a sea of Drs who drive me to the ends of my wit and leave me wanting to throttle them, leaving? I was vaguely aware of my mum pointing out not to get emotional until he had confirmed what I had overheard.
Sadly my neurologist is moving to another hospital where they do not run a botox clinic. He has asked that I email him regular updates, and has said that if things ever take a turn for a worse I just have to ask for a referral to him and he will see me. All this is extremely sweet and reassuring. I’d like to say I smiled and congratulated him, but if I’m honest I cried…a lot. It may seem like a small thing having to transfer too a new neurologist but when I first became ill I had several absolutely hideous neurologist who dismissed my symptoms. They blamed them on stress and my history of abuse, they refused to listen when I pointed out that I had become ill at a point in my life when I was the happiest I had ever been and had moved on from my past. My neurologist was the first to take me seriously and help me. I’m terrified of being handed over to another heinous consultant.
I have one more appointment with my Dr before he leaves, which will give me an opportunity to thank him (without crying this time) for all that he has done for me. After that it will be the start of a new chapter, hopefully one just as positive.
Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.
Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!
I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!
I can only hope that as awareness for the condition spreads the attitude around it changes too.
Please check out today’s VLOG which is on the same subject https://www.youtube.com/watch?v=CJZz7_EMUtE
I’ve had several appointments with different professionals recently with mixed results. At the moment I feel like I am at a stalemate with my physiotherapists with them determinedly ignoring my Neurologists instructions to see me weekly and me refusing to let them ignore his instructions without putting up a fight (in a calm but firm manner). When I last saw them they gave me exercises to do at home and said they would see me again in two weeks. However if they get their way this will be the last time they see me, as they feel that until I can weight bare there is nothing more they do to help me.
Now I have to bite my tongue every time they tell me this as it was they who told me that I must absolutely not weight bare! As you can imagine this has left me very confused. To add to the confusion, only the other month they informed me the ligaments in my foot were damaged and extremely lax due to my spasms hence why I am not allowed to weight bare, yet now weight baring is all they are focused on! Whenever I ask how my foot is to heal they tell me that is up to my Neurologists plan. The worrying thing is other than more physiotherapy there is no plan of action, when I last saw my neurologist he explained he had limited resources so treatment was limited.
One of my physios big things have been that I need to get myself a new splint made, as they have now decided they are not going to refer me for a second skin one, though it has not been explained to me as to why. I saw my local Orthotics department on Friday, he was a very lovely man and I must admit that I was slightly amused to see he shared my frustration at my physiotherapists as apparently they should have written to him if they were going to make recommendations on splints. He informed me that in his entire career he had not seen such force in spasms and he did not think that splints would be of any use to me. He was concerned that if he made a splint that contained my foot all the way round then I could end up severely hurting myself when I spasm. I can see where his concern is coming from, and he is most likely right, however after much pleading from me he agreed to get his colleague who has dealt with my spasms before to take a look at me and make the splint. Even though I know this splint could result in injury, I am willing to try it. I am willing to try anything that may contain my Dystonia and make my life easier! It holds the possibility of enabling to me to walk if it works, I would happily risk injury for the chance to walk again. He couldn’t believe that my physiotherapists were not helping me more and that my Neurologist was not injecting my foot with Botox simply because I had been told not use it.
I feel like every professional I talk to at the moment contradicts one another! To me surely everyone should be saying right so the spasms have damaged your foot, let’s look at what we can do to prevent it from deteriorating any further than it already has and what we can do improve it. Surely that cannot be that hard to agree to try to do?!
On a brighter note I had a fantastic appointment with Rheumatology this week. I went to have my Hypermobility Syndrome assessed. It turns out I have Hypermobility pretty much throughout my whole body. He has agreed with my Neurologist that I need referred to an inpatient rehabilitation programme due to the pain and weakness in some sections of body. I found it very reassuring to hear him talking about the same inpatient programme despite not knowing it had already been talked about with me. In this regards everything seems to be going in the right direction.
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.
Last Friday I attended my rescheduled Orthotics appointment. I was unsure whether there was anything they would be able to but my worries turned out to unfounded. The decision was made that no permanent alterations would be made over the christmas period as that would involve my splint being taken away. Instead elastic type material (but not as stretchy) was attached in a figure of 8 pattern to my splint over my ankle area, my normal velcro strap then went over this to reinforce it. If this design manages to hold my foot in place then my splint will be sent off to have these made permanent. At the moment it is looking positive and doing its job.
Yesterday I went up to London to see my Neurologist. He gave me my usual six injections, which have such a fantastic result. After showing him a photo of my foot in spasm that I took the other day, he has offered to next time administer some Botox injections to my calf and foot. I would be very interested to hear from anybody who has received injections at these sites!
I am still taking medication to treat Chronic Neurological Lyme Disease, since I started these medications around six months ago I have had amazing progress in areas affected by it. So much so that my neurologist even remarked how happy and amazed he was to see the improvements. I am still, with the support of my neurologist, battling to receive IV treatment for Lyme Disease which will hopefully get rid of anything the Oral antibiotics have missed.
Everything seems to be quiet calm for once. Now that the Botox controls my most painful spasms I have been able to reduce the amount of painkillers and muscle relaxants I take. This has resulted in me feeling much more with it and my brain feels less foggy. It all seems to be calming down just in time for Christmas and my Birthday, which is perfect!