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.
The other month I posted a blog on disabled dating. I finally admitted to you all that I had been approached by the Undateables TV show. Being asked to appear on this show knocked my confidence. I felt as if this was perhaps the only way I would be able to meet anybody; that just maybe this was all I was worth. This show is great for some people, I understand that, but for me it was an insult.
Shortly after this I went on a date with a guy who turned out to be a complete sleezebag, and that’s putting it politely. These two incidents combined completely set my confidence back. I felt as if dating was completely out the window, that I really was undateable. Part of me wondered if maybe I was just someone people looked at with repulsion. After all, if I struggle to stay calm with my misbehaving limbs, how could anyone tolerate them or find me attractive?
At the start of May I met my boyfriend Alex, in the local pub. I cannot put into words the satisfaction and joy I feel at having met him in such a normal way. At first I expected listing my many conditions to him would cause him to go running to the hills. Imagine my surprise when he actually knew what some of them were, and better yet, didn’t mind when my arm went flying out violently to the side. He is patient and understanding, and doesn’t mind which of my different aids I’m using to get about that day. What is best is that he allows me to feel normal, not a feeling I’m used to but one that I love. I feel like a normal 22 year old. I don’t think I could ask for more!
So I’m closing the chapter on the Undateables, forgiving them and moving on. I’ve got a brand new wave of confidence and it’s time to write a new page.
Before I became ill I frequently had periods away from home. Whether that was holidays with friends, slumber nights with mates or living in halls at university during term time. Having independence rudely snatched away by Dystonia has been something I have had difficulty adjusting to. To a degree you could say I have refused to adjust to it and have enjoyed pushing my boundaries even if they landed me in hospital.
At times rolling over, bowing down to my alien and declaring its victory, has been tempting. However I’m a stubborn person, a trait that I am rather sure is one of the reasons I have come as far as I have in my battle against my many illnesses. Up until this weekend I had not spent a night away from my family (my mum has always slept at the hospital with me) due to the severity, complexity, and erratic nature of my health. Over the last year we have finally found a combination of medication and regular injections that has helped to manage my symptoms enough to give me a better quality of life. So I decided to embrace this new found stability (though I shall admit I still have some unexpected moments, and have almost hit my boyfriend on a few occasions), and spent the weekend in Manchester visiting two of my old flatmates.
My flatmates Emily and Rachel are very close to my heart. I see Rachel several times a month as we live seconds away from each other still, but Emily I haven’t seen since 2012 though we have kept in touch. They were both there for me in uni when my body started going downhill, and have spent numerous occasions in hospital with me at silly o’clock in the morning. To have my first time spent away from my family be with these two girls meant a lot to me. It was also quite reassuring as they have both done their nursing training, so I was in safe hands!
Today I am shattered, after a full on weekend with the girls, a subtle reminder that although it feels like no time has passed since we last were all together I’m slightly more fragile than I was back then.
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.
The difference between my mental and physical capabilities is vast. Dystonia has meant that my health has changed frequently and I have to constantly remind myself that just because I think I can do something doesn’t necessarily mean I can. Those who know me well, know that I tend to think well I’ll give it a go and if I spasm, then I’ll learn from it. Trouble is, my thought pattern then alters to well body, you may have spasmed last time, but if I do it again perhaps you will learn. It is not a smart way to deal with the condition; my neurologist really is a saint for putting up with me.
Mentally I feel no different to how I did before I became ill. If anything I am more determined to do things, to attempt to try to retrain my brain. It may sound slightly out there, but if you can desensitize nerves, then why not reteach the brain movements? I’m determined to get it through to my Dystonia alien, that twitching and throwing things just isn’t polite.
Over the last two weeks I have been far more active than usual. With my exams over and done with, and no revision needing to be done, I have filled my spare time with constant activities. Part of me is aware of my neuros six weekly reminders to not overdo it. I know that eventually my body will crash and spasm far more than usual, putting me at risk of seizing. It would be far more sensible to pace myself, to do an allotted amount each day. To do this would make my Drs happy, but I doubt it would reassure anyone that I was any safer; friends and family would still be concerned about me. I would still be ‘ill’.
To live my life by allotted sensible slots wouldn’t make me happy. Burning out now and then hurts like mad and I always say that I’ll take more care next time…followed by a laugh because I know I don’t mean this. I love to be as busy as I can. I will never overload myself completely; don’t get me wrong I allow for plenty of down time, chilling with a good DVD, recuperating. But slowing down isn’t for me, I know I’m ill, my body gives me a daily reminder (when the Botox is wearing off) with all the walls I hit, the jaw spasms and mad blinking but I have a lot of living to catch up on. I plan to do just that.
When ill with any condition it can become very easy to allow yourself to be wrapped up in the negativity of it all. Recently I slipped, I fell off the positivity bandwagon if you will. I don’t think this slip is necessarily a bad thing. After all it is only natural that in life we have our highs and lows. Ironically it was Dystonia that reminded me to try and see the positive that does exist within and around the condition again.
My left arm and shoulder spasms/twitches rather violently, flinging itself out to the side. I always hope silently whenever this happens that nobody is within hitting range. I have had one to many awkward apology conversations following such a spasm. It was following a rather forceful one in a hospital Costa last week that I found myself out of my chair and on the floor, slightly stunned, sore and in a complete fit of giggles. A small part of me knew that one flailing arm had tried to grab the table, in a useless uncoordinated attempt to stabilise myself.
This incident was exactly what I needed to break the haze of negativity that I had cocooned myself up in since my Complex Regional Pain Syndrome diagnosis. I had forgotten to tackle this condition with the same approach I had the others. I was frankly too scared, I know how bad the pain can get and even though I am not at the same pain score I was in 09, mentally I jumped ship. Embarrassing myself by ending up on a busy Costa shop floor was the exact laughter filled wake-up call I needed. As much I crave a life without chronic illness, my Dystonia never fails to provide laughter, I’ll give it that much.
I hadn’t planned on writing this. Originally I was going to keep it pent-up. But the whole point of Dystonia and Me is to share with you all the highs and lows of this condition and the many battles I fight along the way. As I mentioned in a post during awareness week, I was abused physically and emotionally as a teenager. I have since had a lot of therapy to help me come to term with this and move on from that period of my life, which I have done. I have always strongly believed that you should be completely honest with your doctor. After all how else are they meant to successfully treat you if they do not have all the information they need?
The way many doctors have treated me after learning I have a history of abuse has left me wishing I had never informed them of it. This specifically applies to my GP. It seems that every aspect of my sanity has been called into question. I have never been so insulted. Yet it would seem that I am expected to roll over and accept this as the norm?!
My GP called me into a meeting to explain himself last week. At the time I was slightly pacified. Yet as I sit here, redrafting blog posts for college (exam prep), I find myself becoming incensed. This same routine has gone on for years now. Is it really so hard to believe that an abuse victim can move on with their life and be coping well, despite having a movement disorder? I am absolutely fed up of having to reassure him over and over that I am not depressed, that my past is not the route of all my problems. Even informing him that the genetic test showed that the Dystonia was genetic did not seem to make a dent in his warped view. As I keep pointing out to him, I am not the one dragging up my past it is him.
It worries me how little so many doctors know about Dystonia. My GP has looked after me since 2012, and yet still clings to the idea of abuse being the root of all my problems. This is despite having letters from my neurologist and my cognitive behavioral therapist telling him that my past has nothing to do with my Dystonia. I know that I am not the only sufferer experiencing this problem. Having to fight against doctors is hard. Standing up to them is frightening, I respect my GP, but at the same time he angers me so much because he is not taking the time to listen to myself or my neurologist. By standing up though there is a chance he may learn. I keep hoping…you never know. He may change.
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
When I was diagnosed with Dystonia in 2012 it took a few days for reality to really sink in. But after allowing myself to accept the diagnosis I launched myself into researching the condition. Something I’m sure many of you sufferers do. The problem with the internet is that you can find just about anything you want to find on it. Researching useful information can be problematic.
I was lucky and stumbled across The Dystonia Society’s Webpage quiet quickly (http://www.dystonia.org.uk/). Their website is packed full of easy to understand information and resources. It helped me come to terms with my condition and understand fully the condition I was dealing with. Previously I had not understood that it was my brain sending incorrect signals to my muscles causing them to go into painful spasms. I had simply thought they were just spasming.
The Dystonia Society over the last couple of years have been a wealth of knowledge and their helpline has been of great comfort. Another fantastic site is The Dystonia Medical Research Foundation (https://www.dystonia-foundation.org/). This is the American equivalent of the The Dystonia Society and is another resourceful website, providing fantastic information on the condition and advice. Websites such as these two are a great resource for suffers to use as a tool to educate Doctors, health professionals and family members who don’t understand the condition. They even have a have section for schools. I find myself checking these sites constantly for new material I can use to help advise others and am never let down.
Please also check out today’s awareness VLOG on Youtube https://www.youtube.com/watch?v=JEGq26wHwpo&feature=youtu.be
When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.
Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.
I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.
I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.
I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.
To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare