Summer has arrived without a doubt, beautiful cloudless sky, sweltering heat and wonderful days out whilst I’m on my uni holidays. However, the arrival of summer also means that my body is working extra hard to compensate which has resulted in periods of tachycardia, eye and other spasms and an increase in pain. Sunglasses are now a permanent feature to try and relieve a bit of pressure on my eyes, but short of sitting in the freezer there’s not too much that can be done.
When I first became ill I found my focus was entirely on all the things I thought I wouldn’t be able to do anymore. Over the years I have conquered all the hurdles I was facing or found ways around them. Going to university was a huge deal and quiet the achievement for me. I’d been so reliant on others for years that living on my own and only having care for a little while a day was a nerve wracking decision to make. As you can imagine the idea of juggling a baby and uni has been a bit daunting.
At first, I didn’t know how I would manage both, but last week we ventured up to my university so I could sit my last exam of my second year. I was extremely lucky that my lecturer was willing to look after Stefan whilst I sat the exam. This has given me the confidence that I can do both, and that I’ll find ways to cope, for example little things like strapping the pram to my wrist so that if I have a seizure or have an extreme spasm he’s perfectly safe and can’t go anywhere. Small things like this put my mind at ease and reassure me that despite my conditions I can manage life as a student and mum.
Today is the last day of Dystonia Awareness weeks, which is most likely a relief to all the lovely people who are signed up to receive email alerts when I post a new blog as I’ll be going back to posting a couple of times a week. It has been amazing seeing how many people have joined in with Dystonia Awareness week, Thunderclap was seen by over 6 million people which is incredible!
In many of my blog posts this week I have mentioned treatments such as Botox injections, muscle relaxants and Deep Brain Stimulation, however none of these treatments can guarantee relief and are not always accessible, so I wanted to discuss some alternative ways of coping with symptoms. Heat is great for relieving muscular aches and pains that can result from spasms, wheat packs, back wraps and microwaveable slippers are all great products and I use at least one of these three several times a week. TENS machines are also great, I don’t know what I’d do without these. I never go anywhere without one in my handbag and towards my Botox dates they often help keep my neck spasms bearable.
If you can afford alternative therapies I would highly recommend trying Reflexology. I found before having regular treatments that I could not sleep well at night as the spasms would keep me up. This turned into a vicious cycle as I was then too tired to handle my spasms well in the day. Now I find having regular Reflexology treatments enables me to have several good nights of sleep a week which does me the world of good as it means I can handle whatever my body throws at me in the day better. I also find burning scented candles or essential oils helps me relax (and after putting them out) get to sleep easier.
Everyone finds something different that will help them, for some people touching certain pressure points will relieve spasms to a certain extent, in others hot or cold therapy does. For me as I mentioned above heat, TENS and Reflexology are what keeps me ticking along in between Botox appointments. Its worth experimenting and trying to work out if anything particular helps you.
Today I decided to have a nice long hot bath, as I felt like I had been run over by a truck repeatedly . After managing to bottom bump up the stairs, it was heavenly to be able to relax in the bath. I cannot describe how blissful it was to let my muscles relax in the heat. However it turned out that the relaxation was not to last. Without thinking I poured the shower gel onto my right hand. Immediately my right hand and arm went into a rather painful spasm.
This was rather disappointing, as for the last few weeks my arm and hand have actually behaved rather well (as long as I am not cold), and I had reached a stage where I was not to worried about it if I was indoors. The only reason for my arm and hand going into spasm, which I can think of, is that the coldness of the shower gel on my hand, in comparison to the heat of the bath, set of the Dystonic reaction.
This seemed to then set the tone for the rest of the day. I attempted to get on with the day and relax, however my little Dystonia alien seemed to have other ideas. My leg over the whole day has played up, so I have tried to avoid using it as much as possible. During dinner my arm and hand again went into spasm, after I attempted to pick up my spoon with my right hand. This spasm then went on to last a good 40 or so minutes before relaxing.
However I am trying to think positively as this is the first time in awhile that my right arm and hand have played up. This is a reassuring thought, so I am not panicking to much. Today has reminded me that I cannot take the days when bits of my body behave for granted! I need to value each day of peace, as there is no way of knowing what will happen one day to the next!