August 2015 – Dystonia and Me

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.

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.

dystonia and me

dystoniaandme

I'm 32 years old, a mother, author, partner, and spoonie. I live alongside Dystonia, POTS, EDS, Osteoarthritis, and a dictionary worth of other diagnoses. This little blog has been set up to help spread awareness and bring light to these conditions and connect warriors with others who can understand each other's experiences.

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