Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘blog’

Using My Wheelchair At Uni

12076411_769374493188332_1203309027_oToday 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.

Another Referrel

Eye-chartSitting 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.

The Ballet of I’m Fine

I’m very aware that today’s blog post may come across as me being grumpy, I assure you I’m not! I’m quiet cheery really. However I want to discuss a certain topic that is often glossed over when it comes to chronic illness. I like to refer to it as the Ballet of I’m Fine. We sufferers are experts in the dance, but it is one that we resent pirouetting to with a passion. Too often I see across the social media platforms people airing their feelings at having being cast in this ballet once again. But what else are they to do? Far too often we are acutely aware of people not wanting to know if we are anything but fine. It does not matter to them if our limbs are hideously distorted due to spasms, if our speech is slurred and our sight impaired. They are willing to blindly over look what they can see in front of them, as long as we dance the same old dance.

Well, why should we?! Let’s be honest here people, my ballet shoes are hardly ever worn, I air my illness through my blog. Yes I wish I didn’t have my conditions, but I do and I’m doing my best to raise awareness and carry on with life. So please excuse me if I retire from the Ballet of I’m Fine all together. I have been guilty of smoothing over my illness before to people I know would rather not hear about it. But enough is enough, the dancing shoes are going in the bin.

Chronic illness is not something to be ashamed off. We should not be living in the shadows with life passing by. So we are slightly different, we are unique. That simply makes us interesting. Instead of staring at me in the street, I would much rather you politely inquired as to what was wrong. I would love the chance to educate more people on the condition.

To you folk who care enough to truly listen to how we are holding up, you don’t know how amazing you are!


Dystonia; Becoming A Student

When you hear the word university student what do you picture? I’m sure that many of you conjure up an image very similar to my own. One of students sitting in a small dingy  flat knocking back a stomach churning concoction from a mix as part of a drinking game; or stumbling back, shoes in hand, giggling from yet another night out. My ideas are based on experiences from my year at uni in 2011/2012. Whilst planning my return to university my mother and I have had many discussion on student life and how sensible I’m going to have to be this time round.

I have struggled to get my head round the fact that frankly I do not have the stamina I once did. My medication, spasms, and pain levels all have an impact. Now that’s not to say I can’t have a night or two out. I just cant do it back to back every night of the week. If I did I would be a spasming wreck and back in the hospital in no time. Whilst mentally I am the same old Becca, physically I am much weaker and more disabled than when I was last at uni. When I was last a student I was not battling Dystonia, I did not know then what it was like to lose control of your body like I do now. Although my condition is well controlled, it’s still up and down. I know when I’m on muscle relaxants I can’t drink, so my body will force me to be sensible every 6/7 weeks when my injections are due. The rest of the time will be down to self-control, and learning what works for me. Prioritising is key to making sure that I am well enough to attend lectures, and doing the studying that is required etc.

I have not lived any element of a student life since becoming ill. It will be a big adjustment process, which I will have to catch on to quickly. As my moving day creeps nearer (24 days) my nerves increase. I’m anxious to take this next step but nervous at just how much of an impact Dystonia shall have. However I am aware that as usual I am worrying over something that is outside my control, there is nothing I can do but enjoy my time at university and handle my spasms with my medical team as they come.

Taking Dystonia on Holiday

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 I had my first Hydrotherapy session, this was the first in a course of six. This morning I found myself feeling a mixture of emotions. Part of me was incredibly excited, I previously had hydrotherapy back in 2009 to treat Complex Regional Pain Syndrome, and found it to be very helpful, so I know just how beneficial it can be. However I was also slightly nervous, I could not help but wonder how my quirky body would react to the therapy now. Would it set a seizure off? And if it did how quickly would the staff react? The one positive being, if I had a seizure, that the hydrotherapy takes place at my local hospital and the A&E staff know me very well.

The session could not have gone better. The pool was wonderfully warm which helped relax my rather achy muscles. Having the water support my joints whilst I did the exercises was great as while the water in itself provided a challenge, it also meant I could not hurt myself. For example whenever I twitched in the pool the water provided a resistance to my arm, slowing it down slightly and supporting it, which meant I didn’t hurt myself like I normally do. We had lots of laughs during the session, with my spasms ending up with me splashing my physio repeadedly in the face, and the floats that we had been using during an exercise going flying across the pool. It was great for it to happen in a safe, pain free enviroment!

Below I have put a sneaky photo (I was trying to avoid capturing other patients) that I took at the hospital earlier, it lists some of the benefits of Hydrotherapy. This includes pain relief, and reduction of muscles spasms. It shall be interesting to see if it will help with the spasms I experience! If you have had Hydro, feel free to drop me a line I’d love to hear your experiences.

Three Years of Benedict

Today marks three years since my life got a good shake up as my Dystonia alien made its presence known. So much has happened over the last few years that it’s hard to keep track, I’ve had a handful of operations, countless x-rays, far too many ambulance trips, and appointment after appointment with varying Consultants. I have also gone from being reliant on a wheelchair fulltime, to being able to walk with the aids of splints!

It has been an incredibly emotional journey, and I think that’s a naturel response to everything that’s happened. I’m finally at a place in my life where I feel like I am climbing the mountain that is Dystonia, instead of tumbling down it. I still have days like today, where it’s more like I am stubbornly camped out on it, refusing to fall. This morning I woke with my jaw in spasm, and my neck spasming on and off. So naturally I have spent a section of this afternoon lying on my living room floor, as the support that position gave my neck and back was the only way I felt comfortable. A year ago doing this would probably have left me feeling annoyed that I had resorted to doing it, today I was simply laughing, though maybe I am simply losing the plot.

Battling this condition has become second nature, nowadays I always have medication on me, and sometimes there’s even a TENs machine in my handbag. It surprises me how quickly Benedict has become accepted into everyday life without a second thought. This is a bittersweet realisation. It’s fantastic because it shows we are managing, that we are not drowning under the pressure the condition puts upon us. However a part of me feels sad that it has become so second nature, simply because who wants it to be part of their routine to remember to take one of their many pills or injections?

I’ve always kept score against Benedict. I think this year I finally got even.

Trainwreck Neurology Appointment

Yesterdays appointment with my new neurologist was pretty awful. Check out my VLOG from this morning to find out what happened

Judging When To Get Checked Out

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.


Turning The Page

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.


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