Today’s blog post shall be brief as I have been up to London for my Neurology appointment and am now very tired. My Neurologist was quiet apologetic and concerned that the last lot of injections had not worked, which left me with my normal extreme spasms. Apparently this sometimes does just happen for whatever reason, but to be on the safe side in the hope that this will work better, he upped the amount he was injecting everywhere. This has reassured me and helped to quell my fears that this batch of my injections may not work. I am now feeling decidedly more positive about it.
He confirmed the Hand Therapy’s diagnosis that the Dystonia is in my hand as well. However my symptoms in my hand are nowhere near as severe as the symptoms in my neck, jaw and eyes which is very positive. He stressed it was important not to aggravate it, I’m guessing this means I really need to learn how to walk without tripping over my own two feet…or my walking stick! This once again throws my Midwifery dreams out the window. I’m starting to realise that until a Neurologist hands me a pill and says this will cure you that I need to find a new dream. Now that’s not to say that I’m giving up on it, it’s more like putting it to bed for a long sleep until/if it becomes a realistic option again. I left university in the summer of 2012 on health grounds and for the last two and a half years I have built my Midwifery hopes and dreams up only to have them go up in flames around me more times than I can count. For my sanity I need to take a break from the emotional rollercoaster ride that that dream has taken me on. My year of training was the best experience of my life and I treasure it and for now that will do.
My reflexology career has now also been put on hold due to the hand Dystonia. Whilst my neurologist said he didn’t mind me doing the odd bit of Reflexology work, I have to be careful not to overdo it. I have always loved reading and writing. I can get lost in books for hours on end and will happily write all day. There are plenty of degrees out there in Creative Writing and Publishing, perhaps I shall discover a new dream down that road. For now though I must put my love of reading into action and brush up on information on another genetic condition I have been diagnosed with. I’ll fill you in on this new diagnosis next time.
Last Friday I attended an outpatient Hand Therapy appointment. I thought this would be a simple check up on how my finger is healing, splint it back up and send me on my way home. What I forgot to factor in is that with my body being rather dysfunctional that would all be a bit too simple! I saw a lovely woman who after assessing my hand decided that my previous diagnosis of Mallet Finger was incorrect and the Dystonia is in-fact in my whole left hand. After questioning and examining my hand for a while she came to the conclusion to that the Hand Dystonia was pre-existing and was most likely covered up by the Neurological Lyme Spasms I had been experiencing previously in my hands.
I was rather thankful that I did not go alone to the hospital appointment as the diagnosis came as a bit of a blow. Being accompanied to appointments no matter what your age is something I think is rather important. An appointment may seem like a routine check up but you never know what conversation you will have to have and support is vital. Sometimes just having someone else to listen to the conversation so they can make a note of anything you miss is a huge help. For me having someone I trust listen to me panic afterwards and help calm me was exactly what I needed. Being a Reflexologist, obviously using my hands is vital, however the hospital have advised me to be on hand rest till the end of February when they will assess the splint need again, I will have been on hand rest for almost 3 months by then.
Thankfully in the meantime I am seeing my lovely Neurologist at the end of this month for my Botox injections and to get his opinion on my hand. I am on countdown to seeing my neuro as my Botox last month did not take and I have been in agony since. My GP yesterday gave me some new muscle relaxants to try so im keeping my fingers crossed that these will offer me some relief until then.
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.
I recently got approached by an American company asking me if I would be willing to blog about my medicine. I was very willing to do so and this is something I am very open about. Medicine is great, it can cure illnesses, take away pain and help us manage our conditions. Now obviously this depends on the type of illness and type of medication prescribed by your doctor. For me, some of my medicine will eventually cure me of Lyme Disease, other medicine helps me to manage my Dystonia and a handful of pills keeps my pain levels under control.
One of the key things about medication is drug interactions. Most Doctors will check before prescribing you a new medication that it does not interact with another, however some forgot to do this. I have experienced this once before when a muscle relaxant I was prescribed to help with extreme muscle spasms interacted badly with a pain-killer I was taking regularly. I was lucky that the reaction only caused me to sleep constantly. It could be quite humorous at some points when I would fall asleep in the middle of talking! I was like this for about two weeks as we had to slowly ween me off the medication. However joking aside medication interactions can be very serious and it is always important to check with your Dr first, or check the pamphlet that came with your meds.
When I was first put on my meds I naïvely figured it would ‘fix me’ or at least enable me to have a good quality of life. What I did not factor in at that time was medication side effects. I knew they existed I just never thought I would experience them. Clonzepam was the first medication I reacted to badly. I don’t remember much of what happened, but I turned completely psychotic. I was determined to find scissors so I cut all my hair off. Mum ended up having to stay home from work to look after to me as I was a danger to myself, I am thankful that I was bed bound. Diazepam was the second medication I reacted to. My local hospital had prescribed me it after my spasms severely damaged my leg earlier on this year. I was fine for the first day or so, then I turned psychotic again. This time I was convinced that amputating my spasming leg would cure me of all my illnesses. I was desperate to contact my neurologist to set up a date for the amputation and devastated that nobody could understand my logic! Months on from it and I am glad that nobody thought Hey, why don’t we give it a go!
At the moment for my Chronic Neurological Lyme Disease treatment I take a mixture of medication and supplements which works out as 47 pills a day and 1 injection twice a week. For my Dystonia I take 6 pills a day and have 6 Botox injections every 6 weeks. I take 2 tablets for migraines every day and 2 syringes of allergy medication every morning. It works out that I take 57 tablets/syringes a day, then throw in some injections every now and then, and that is not even factoring in days when I need pain medication and muscle relaxants. It is a lot to remember to take! However it is vital that I take these at the right time, such as if I decided to take my evening dose at the same time as my dinner time dose I would be feeling sick very quickly as they cannot be taken with food! As many of you know from my earlier posts one of my symptoms is brain fog so I rely on reminders in my phone to help me remember to take my medication.
Medication is an amazing thing but you need to know what you are taking and why. I am the type of person who likes to take as little medication as possible, however I recognize the fact the Lyme Disease made me seriously ill and if I want to get better I have to take them. I understand that I have to live with Dystonia for life so I will always be having a neurotoxin injected and I am ok with that.
Medications have a dire effect on the body if not taken safely. So please be sensible and talk to your Dr about meds!
Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.
Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.
Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.
I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!
Yesterday marked two years since I became ill with Dystonia and had my whole life turned upside down. I went from first year student midwife having the time of my life to struggling to do simple tasks like putting jeans on or getting around the house. Life has not been the same. I must admit that despite my best efforts I was rather emotional yesterday and found it extremely difficult to be cheery. However I must slap myself on the wrists and wipe away the tears because despite all that life has thrown at me I have not and shall not give up. Yesterday may have been the two-year mark, but today is the day I found out I have qualified as a Reflexologist and tomorrow is full of possibilities!
I could focus on the negatives, for example the many ambulance trips to hospital, but there is simply no point in that. Where would it get me? Over the last two years I have achieved so much, met the most inspiring people and had opportunities to do things I would not have been able to do if I were not ill. I may not be exactly where I thought I would be now, yet I have achieved more than I thought I would be able to whilst living with Dystonia. Life is unpredictable and is a bag full of mixed emotions, but what you are given is what you have to deal with. I do not see the point in letting it get me down. So I’m cherishing the memories I have, riding whatever dystonic spasm that gets thrown at me, and celebrating the wonderful opportunities that I am fortunate enough to have had and to be receiving!
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.
This week has been a complete rollercoaster of emotions. Beginning with excitement, this quickly turned into desperation and turmoil, concluding with frustration and nervousness. On Tuesday I attended a physiotherapy appointment, I was under the impression that this was to be the first of at least weekly appointments. I had been extremely excited for it as I was anticipating news of trialling a second skin splint which I was hopeful would make a difference to my leg spasms.
When I had seen my Neurologist last he had mentioned to me that he had spoken to my physiotherapists the week before to advise them on how best to treat me, and that he was very keen for me to start having intensive physiotherapy locally. He was also happy for me to trial the splint and did not say too much about it. So you can imagine my total shock on Tuesday when my physiotherapists told me that my Neurologist had advised her to discharge me and not to refer me for my splint! She was left with the impression after speaking to my Neurologist, that after I have my IV antibiotics for Lyme Disease and was cured of that then I could have physiotherapy. She was shocked to learn that I have been denied IV antibiotics by the NHS unless I have lumbar puncture, which my Neurologist has recommended I do not have as it puts me at risk of developing more Dystonia.
I left the appointment on Tuesday in a completely state of turmoil. Without IV antibiotics and without physiotherapy what chance of any sort of improvement do I have? I was furious with my Neurologist, how could a person have two completely different conversations within the space of one week. Then, Thursday afternoon, a follow-up letter from my last Neurology appointment arrived reiterating that he wanted me to receive intensive local physiotherapy. I could not be more frustrated, I can only presume that they must have had a rather ridiculous misunderstanding. Yet I question how that can even happen in the first place, the conversations reported are at extremes with each other.
I am seeing my Neurologist on Tuesday for my next lot of injections, so will be able to clear this matter up with him then. It took over a year and a half, with a lot of jumping through hoops just to receive physiotherapy, so to have it taken away after one session is not something I am going to let happen without putting up a fight.
Generalised Dystonia usually occurs in late childhood/early teens, it is unusual for it to start after the mid twenties have been reached. In the majority of cases symptoms will progress for about five years before stabilising. I was 19 when my Generalised Dystonia started, it started in my Jaw and then spread rather quickly. Though I had an episode of Oromandibular Dystonia back when I was 17.
There are several possible reasons why someone may develop Generalised Dystonia. In some cases it is referred to as Primary, this is when there is no identifiable cause other than genetic factors such as a mutation in the DYT1 gene. Secondary Dystonia is when there is an underlying cause for example another medical condition, stroke etc. Dystonia can be inherited, there is a 30% chance of developing the condition if a person has the mutated gene. There are several other genes which can cause Primary Generalised Dystonia.
Treatment of Generalised Dystonia normally involves a combination of Botox injections and medication. I find a combination of muscle relaxants and six weekly injections, extremely helpful. Levodopa is usually trialled for around two months to see if the Dystonia is Dopamine responsive. Deep Brain Stimulation is also used to treat the condition and can make a huge impact to the sufferers quality of life. Selection for this however is done very carefully to make sure that the patient is likely to benefit from the treatment as the surgery obviously carries many risks.
Below is an image of one of full body spasms.
Raising awareness of Dystonia is vital. The Dystonia Society’s website says that an estimated 70,000 people in the United Kingdom have the condition. Considering just how many people this is, it is still such an unknown condition to both the public and the medical society. By raising awareness and funds more research can be done. Dystonia may not be life ending but it is life limiting. Without research there is no improvement in treatments for the condition and there is no cure.
When I became ill with the condition I had never heard of it, I had lived my life blissfully ignorant. Now it’s fast approaching the two-year mark of my being ill. Dystonia may have taken away many things from me but it has also inspired me. The only way change will happen is if we bring it around. We can sit and moan about Doctors not understanding the condition all we like, but what difference will that make? By actually having the condition and experiencing it we can choose to empower ourselves with knowledge and spread awareness.
I spent yesterday sat in my College canteen raising money and awareness for Dystonia. The age range of students at the college is from 16 to mature, yet all no matter how old or young were prepared to listen to what I had to say and asked lots of questions. I went with lots of leaflets that The Dystonia Society had provided me with and every single one of them got taken by people wanting to go away and read more.
Awareness is key to a cure being found and weeks like this one are the perfect time to do it. Tea parties, joining in with campaigns like the Go Green for Dystonia one or getting involved with Thunderclap, are all so easy but so effective!! Dystonia Awareness Week is not over until the 11th May, so if you’ve not joined in yet, why not now, every voice counts! https://www.thunderclap.it/projects/9777-dystonia-awareness-week