No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday
A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.
I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.
My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections
The current times we are living in are unique. Nothing we have ever lived through before could have prepared us for a pandemic requiring multiple lockdowns and restricted social interactions. Reports on rising rates of depression, anxiety and mental health issues are really not surprising. There is no normal currently. Life has become about surviving not thriving through each moment, and focusing on the little wins as they come. If you wore actual clothes instead of fresh PJS today then in my eyes you are smashing Lockdown Three.
If you are struggling right now and feel like you need a bit of help please do explore the options below. I myself have tried several of them and am more than happy to discuss this if needs be. Simply send me a message via the Dystonia and Me facebook page and I will get back to you as soon as I see it.
This link will take you to the NHS Every Mind Matters page. Take the time to really explore this site as it is full of information. If you are finding it hard to absorb maybe bookmark the page or print off some bits and come back to it. One of the great aspects of this site is that it has a feature called Your Mind Plan Quiz; you answer 5 questions and it creates a plan designed to improve and maintain your Mental Health.
If audio guides are more your cup of tea then these free NHS audio guides may do the trick, there are multiple ones to choose from depending on what aspect on your mental health you are struggling with.
Following on from yesterday’s Facebook live where we touched briefly on genetic causes of Dystonia, I wanted to delve into this a little more. DYT1 gene is the cause of some cases of early onset Dystonia and seems to be the one people are aware of. However there is a number of other genes that can cause Dystonia. Knowing whether it is a genetic cause is worth investigating as treatment can differ. For example I have the GCH1 gene which is the cause of Dopa Responsive Dystonia. I’ve lived with my symptoms for eight years and only recently found this out. I’m now awaiting to start on the appropriate medication for this particular type of Dystonia.
Being diagnosed with Dystonia for the majority of people is a long road, and more complicated still if you don’t know the medical history of your parents, grandparents etc. I haven’t had contact with my father for years but I know from my mum that he had hand tremors and was often called shakey. Now this could be caused by anything and that’s important to remember but based on the fact that my hands also spasm and tremor it’s a significant point.
When I was on the initial road chasing for a diagnosis only one doctor recommended genetic testing and this was never followed up on. I then spent years fighting against the label of functional Dystonia, which seemed to being applied purely based on my previous traumas. It became a frequent sticking point, one in which I often pointed out that fighting for treatment and belief was by far more traumatic at the time than issues I’d already worked through with therapists.
It was only after resorting to private genetic testing that we discovered that I had a genetic cause; I’d been blaming it on a horse riding accident for years purely because my neck spasms started shortly afterwards.
So does having a genetic cause change anything? Yes! Some types of Dystonia are far more likely to respond to Deep Brain stimulation, while others respond to specific medications better.
It is important to remember however that not all Dystonia causing genes are known yet. This is one of the reasons family history is so important. I only went digging into my genes after my maxfax surgon mentioned that their appears to be a link between Ehlers-Danlos Syndrome and Dopa Responsive Dystonia.
Other causes can be medication induced (tardive dyskinesia), brain injury, as a symptom of another condition etc. If you have concerns over the root cause of your condition please speak to your neurology team.
It’s a painsomnia night so I thought I would share with you all something that I’ve been coming back to frequently recently. Personally I’m a very sensitive, emotional person; now some may view that as a bad thing, others a good thing, some of you will be neutral. I can see the pros and cons, but it’s what makes me me, so yes I may cry buckets everytime we watch certain episodes of Vikings, or The Lion King but i’ll also laugh myself to stitches five minutes later. It’s a rollercoaster of life. It’s real, honest and truth.
So why do I, and I know many others with chronic illness will be able to identify with this, go on autopilot everytime a doctor, family member or friend asks after us? You know the drill, you walk into the drs room the doctor greets you and asks how you are before you get down to the nitty gritty. It’s a formality, so like a healthy person you respond with I’m good thanks, and you? It’s ridiculous! Why is it so hard to say you know what I’m actually not great at the moment and I need some help.
I forced myself to do this yesterday. I could hear the usual auto response slipping out my mouth, so I caught myself, took a breath, looked the doctor in the eye and said I’m pretty awful and I don’t know what to do. Now saying that wasn’t easy but boy did the relief for sharing the burden feel good. Making that choice to let the facade of I can cope with everything slip for a moment to ask for help took an incredible amount of inner strength and it’s something I’m going to practice doing more often. Vulnerability is not something to view in a negative light, in fact it allows others to reach out and see if they can improve your situation. Sometimes just talking things over can make a difference.
So just pause for a moment and think; are you like me and guilty of putting walls up? Is it worth flexing your inner strength and letting that vulnerability show? Let me know what you decide to do!
When I met my partner Damon back in 2016 I was upfront about the fact that I had a whole host of chronic conditions some of which would deteriorate as I aged. It was a subject that I broached on our first date, romantic I know, but it was important to me that he knew life with me would not be an easy one; our first date lasted five hours. What was meant to be coffee, turned into a museum trip, and hours spent talking on a bench overlooking the River Cherwell. At the time my Dystonia was my most limiting condition. The EDS was annoying and had its fair share of debilitating moments but in comparison was easy enough to deal with.
However over the years with a good combination of medication and very regular Botox injections my Dystonia is often far more controlled, yet my EDS has spiralled dramatically so. My jaw which takes the brunt of both conditions is in need of replacement yet both conditions make replacement not necessarily the easiest call for my surgical team; it’s an ongoing argument. My knees are in a similar state. They too need replaced. They currently sublex at 0 and 30 degrees constantly yet bracing doesn’t seem to work due to the change in position with each time the knees come out of place. I frequently joke that I’m falling apart and honestly it feels that way.
The latest part of me to be affected is my hearing. My hearing tests have showed that im hearing impaired and im awaiting further appointments on the next steps to see what aids will help me. Whilst my hearing being affected isn’t overly surprising, it wasn’t something at 27 I expected to be told. However after almost a year of struggling I knew it was time to give in and get some help.
If you look at me you could be forgiven for not realising anything was wrong. Which is one of the reasons Rare Disease Day is so important. Disabilities come in all variations and I for one never look the same one day to the next.
I’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.
I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.
Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous. I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.
I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest
Today was the first time I have had to give in and use my wheelchair at uni. I had anticipated that today would be harder than usual as I had traveled to London yesterday for my routine injections. My body always reacts badly to them for the first 24 to 48 hours, normally this leaves me in a lot of a pain and with an increase in spasms, which with a mix of painkillers and muscle relaxants I can manage. I therefore had not expected to fall over when getting out of bed this morning. My back and neck had gone into a hideous spasm and my brain had functionally paralysed both legs and my left arm. I spent half an hour lying on the floor like this, debating what to do. I gave myself an hour in which if I managed to get dressed I would venture to uni in my wheelchair and braces, and if I was still on the floor I would ring the Wardens.
I felt extremely proud of myself that it only took half an hour to get dressed this morning despite my brain fighting me, this must be a new personal best. I admit that as I braced the majority of my body I was extremely nervous. My peers are aware that I am ill, but they have never seen me like this, I had no idea how they or my lecturers would react. Within minutes of being in uni my nerves were swept away. Not only did no-one bat an eyelid, but people helped me when I needed it without me even asking.
Part of me had strongly wanted to not go in to uni today. I was worried of what others would think, and how I would physically cope, I had already had several draining days and was concerned that this on top would be too much. I am extremely glad that I took the leap, and forced myself to go. It will help keep my mind at rest the next time my brain decides that a day of alternating between spasms and paralysis would be fun.
Sitting back in the upright, green leather chair, I stare straight ahead at the wall with my left eye covered up, where supposedly I should be able to see two rows of letters. I can’t see a thing. Not even there outline. I can see a white blurry box on the wall but that’s about it. The optician is quite frankly horrified at the deterioration of sight in my right eye. It has only been eight months since my last appointment, this dramatic result shocks us both. I thought my glasses prescription just needed a slight tweak. As it turns out new glasses cannot fix this issue. By the end of the examination she murmurs a simple sentence that chills me. “I need to refer you to the hospital, the muscles in your eye are not working properly”. What?! This was meant to be a routine appointment.
I questioned whether it could be my Dystonia, and while it was a possibility, she was not convinced it was. She explained the three different medical specialists I would most likely see at the hospital, the last being a neurologist. It always seems to end up there.Can I just have a new brain? As it always goes with these things it shall most likely be a wait before I am seen. In the meantime the possibility of another intruder controlling my body, my sight, hangs in the air. If it turns out to be Dystonia then other than piling me with more medication there is very little they can do, as they are unable to inject these particular muscles.
Over the years I have always been told that my left eye has compensated for my right. Its doing this now more than ever. With both uncovered I can see, things get blurry now and then but generally I’m okay. Cover up my left eye and the words in front of me are blurry, I cannot even focus on my own hands! It’s times like these that I want to take the faulty parts of my body out, line them up and just yell at them. Realistically I know it’s not going to get me anywhere, I’ve also banned myself from googling my symptoms, I know it will just tell me I’m going to die, it’s one of the things google does best! I’d rather wait for hopefully a much more optimistic diagnosis from a Doctor.
So I’m keeping my fingers crossed that it’s not the Dystonia, and that it is a condition that they can easily treat! It would make a nice change.
Saturday evening, after a drizzly but fantastic day spent at Ascot racecourse, I found myself lying on my side in the living room in a fair degree of pain after my hip gave way. After a quick feel I was certain that it hadn’t dislocated and the fact I had remained conscious and had not slipped straight into one of my seizures reassured me that nothing too untoward was at play. However my hip, when not spasming, has never been the reason for me falling before, so the fact I was not seizing I felt could not be 100% relied upon. Perhaps my brain had functionally paralyzed that part of my body? Even momentarily, would have been enough, after all my hip had caused me increasing amounts of pain all day.
I still don’t know why this happened. After spending a couple of hours on the floor we eventually got me to my room, and I spent the following day, on bed rest, taking plenty of regular painkillers and ant-inflammatory’s. It is only now on Tuesday that I am walking around without as much discomfort, though I’m still taking regular anti-inflammatory’s. One of the issues I often find with my myriad of medical conditions is judging when to get arising issues checked out. With my bones I usually go by whether the complaint is swollen or not, this is on the advice of a plastic consultant, due to my EDS. However when it comes to the rest of my conditions it can be pretty hit or miss.
When I end up in Accident & Emergency, or when I’m at my GP’s, I often feel like I’m wasting their time because of how often I’m there. The best they can do is patch up the new issue; like sticking a fabric plaster on a cut before getting in a bath. It’s almost pointless because you’re just going to have to stick another one on when you get out, but for the mean time it’ll do. The reasonable part of me knows this isn’t the case, that I need their help and I’m extremely thankful for it. But whilst I’m there I can’t deny that’s how I’m feeling, especially when a lot of appointments involve me battling to receive treatment I need.
Judging when to get checked out is a minefield. So often I leave things until they have reached a point where I probably have made it worse for myself. This seems to be a common issue among people with chronic health conditions. Many of us have accepted that we are chronically ill and that we will have falls or spasms etc., we just don’t want to make a nuisance of ourselves or accept another symptom or injury.