If you had sat opposite me and my friends on the bus yesterday chances are you would not have had a clue there was anything wrong with me. When I shuddered, and my friends asked in hushed tones if I was cold, you would not have paid a second thought to it. In reality that shudder was my body trying desperately to twitch but failing due to the injections, my friends whispered question was simply because they know that the cold aggravates my Dystonia. I currently walk around Oxford like a human marshmallow, swaddled in layers, with my gloves, hat and scarf on. My joints are already painful most days. I compensate for this though, my bedroom generally feels like a sauna.
Winter is coming. For many Dystonia, EDS and other spoonies winter impacts their chronic illness, causing spasms, pain flares etc. Managing your symptoms gets harder and if you’re anything like me and run head first at every challenge your condition presents, then you’ll find that with winter you’ll crash and flare more often. Symptom diaries are a fantastic tool to keep. Learning what you can do to keep on top of your health is the best approach you can take.
I know that in winter If I go out with no gloves and only one pair of socks, I am going to spend the day apologizing to all the people I pass in the street as I’ll accidentally hit them when I twitch. It’s humiliating, and avoidable if I just remember to wrap up. If my room gets to cold I know I shall spend the night in agony with my body spasming. Again this is avoidable. I may not be able to prevent every single spasm, but I can definitely prevent the worst of them by taking sensible measures.
So please all you amazing spoonie warriors, wrap up this winter and don’t put yourself at risk!
It’s the end of my first week at university already and I love it here. I spend the majority of my waking moments laughing with my peers and attempting not to get lost. One of the joys about university is the simple fact that I am surrounded by a large increase in people, and this naturally means that there is diversity amongst the student body. Every day so far, I have met someone with a different type of medical condition. This has really helped me to relax and settle in.
Typically my Dystonia hasn’t left me alone but I haven’t let that bother me too much. I twitched the other day and caught a police officer, who luckily was more concerned that I was okay than anything else. Truth be told I was torn between being mortified and trying not to laugh. I was simply embarrassed to the point of laughter. My new friends and flatmates have all seen a couple of spasms now and have handled them really well, mainly with laughter which is all I could hope for.
I phoned the Neurology hospital that I attend and they still have no idea when my next lot of injections will be, which is causing me some concern. My injections are due on 30th September, this would have been the seven week mark so was pushing it as it was. Unfortunately the hospital staff still have no dates to give patients as to when the injections are going to be. My spasms are unfortunately already beginning. My arm never really completely stopped spasming during this cycle. I am keeping my fingers crossed that I get will my injections date sooner rather than later.
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.
I’d like to start this post off by apologizing in advance if bits don’t quite make sense. I have a fair bit of medication in my system and I am having to concentrate very hard as I do not really feel like I am with it today. Over the last few days my body has been very interesting. I presumed it was just in meltdown mode after the trip to London and back for my Botox injections last Tuesday. My right leg in particular has been bad. The spasms have been impressive but rather painful. I have found myself repeatedly over the last few days in the position in the photo below. which I can assure you is not a comfortable one to be in.
Last night my body did full body twitches, which was a new symptom for me, however this did not seem to stop, then my leg joined in spasming repeatedly into the above position. However several times whilst in that position my hip spasmed in one direction and my lower leg spasmed in the opposite direction. This caused agony, and according to my family they all heard a cracking sound. I then started to have lots of my Non Epileptic Seizures. In between seizures when I was spasming we tried administering our crisis medication, Tramadol and diazepam, but this did not seem to touch the pain or the spasms, which meant that an Ambulance had to be phoned.
The paramedics, Gareth and Amanda, were two of the nicest people I have met. They helped keep me as comfortable as possible, which is saying something considering the amount of pain I was in. It was decided that I needed to go to hospital to have my leg checked out as it was swelling and they thought I had torn a ligament. In the end they gave me IV morphine which made me slightly sleepy and giggle, to helped ease the pain enough to transfer me into the ambulance safely, where they then gave me Gas and Air. I now understand why the women I looked after on the labour ward loved the stuff so much. At first it had me creasing up in laughter like a crazy woman, eventually I then thought I was dreaming the whole situation, which was when we decided I had maybe had enough of it. I have to say I was so impressed by the standard of care they gave me. They didn’t know anything about my condition, but they treated better than half the previous doctors I have seen!
The doctor Teeto and the nurse Precious in charge of my care, were again wonderful people. I feel extremely lucky to have been under the care. Teeto actually knew a fair bit about Dystonia and was not fazed by spasms at all. He quickly had me sent down to x-ray to make sure I had not broken my knee, where I had some more seizures on the poor woman as she to move my leg about. Thankfully I have not broken anything!! I have just damaged and pulled some of the bits in my leg. Teeto, sent me home with a box of Diazepam, his plan is for me to take this at regular intervals over the next few days, in the hope it will break this new spasm cycle.
Whilst I am in a lot pain now, and feeling rather spaced, I am so thankful that I was under the care of four such wonderful people last night. They were all so caring, and you could tell really wanted to help stop my pain and spasms. It is amazing the difference incredible people like these can make during times when you are in agony!
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.
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.
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.
Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.
He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.
I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.
I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.
Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.
At this very moment in time, I feel like my body spent the whole of last night trying to get back at me for writing a positive post yesterday. I had spent the whole of yesterday feeling rather odd, like half my brain was missing and the other half was covered in fog. By the evening my jaw was really playing up, with my dystonia pulling each side of my face in opposite directions, which was agony, this of course then led on to hours of Non Epileptic Seizures. Consequently I have woken up this morning feeling like my body has been run over by a bulldozer and my head been repeatedly hit by a hammer. However on the bright side of things, today my jaw Dystonia is a lot better than yesterday.
I have decided that today I shall completely avoid solid food and only consume softer food such as soup or yoghurt, in an attempt to try and prevent my Jaw from playing up so much, as I really want to be able to enjoy tonight’s New Years Party.
Tomorrow I plan on writing a letter to my consultant, to ask for a date for him to administer my injections and to ask for a plan to be put in place for future injections to be administered. I am hopeful that I shall not have to wait to much longer for these injections, considering he was meant to do them several weeks ago, but failed to give us a date.
I am hoping that the New Year shall be filled with positivity and improvement.
I am happy to announce that over the Christmas period my Dystonia behaved, with the exception of one or two moments. The relief I felt after going Christmas day and my birthday without having my dystonia play up was immense! I had worried a lot about spending the Christmas period in agony, thank fully I ended up worrying for nothing. To make things even better I even managed to spend 6 hours clothes shopping with my family, with only my eyes playing up now and then. I managed to get in and out of my wheelchair frequently so I could try clothes on without my leg making to much of a fuss. By the end of the day, I was exhausted and found it very difficult to move around, but this did not bother me as the fact I managed to spend so long out and about and try clothes on was a major achievement for me!
Yesterday I picked up my glasses from the opticians, this means that I can now start judging whether it is my eyes straining that causes my eyes to spasm and go blind. Every day, I am going to keep a diary of what activities I have done and how my eyes have reacted to each activity, this will enable me to have a fairly accurate idea (after a number of weeks) as to whether my theory to why I go blind is right or not. I am quiet excited, as if I am right and wearing glasses helps stop the spasms, this will make a significant impact on my life.
My jaw dystonia is really playing up at the moment, which in turn brings on my Non Epileptic Seizures. Despite my consultant emailing me 3 weeks ago saying he would do my Botox injections next week, I have still not received a date for it to be done. When I finally get to see him and have the injections done, I am going to ask him if there is anyway we can just book a date in advance, for around the time the injections stop working, to have treatment again. To me this is a logical step to make, however it is becoming more and more apparent to me that the NHS system is not necessarily a logical one.
I hope you all had a fantastic Christmas and that you all have a great new year.