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

Posts tagged ‘blog’

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.

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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.

Hydrotherapy

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.
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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.

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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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Exploring Boundaries

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.

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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.

A sea of Drs

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.

Mind and Body: Opposite Ends Of The Spectrum

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.

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