Autumn, dystonia

Seasons change and so does the clocks

leaves pile free

Autumn is my favourite season with its stunning colour changes, crunchy leaves and crisp mornings. It inspires me to whizz through the village and countryside on my scooter allowing my dog to run through any piles of leaves. If I can’t kick them in the air, he can instead. The clocks go back so the nights arrive early. The evenings involve low lights, keeping warm by curling up in snuggly socks, reading whilst drinking cups of tea. The family comes together more as everyone gravitates to the warmth of the fire. Dogs included.

leaves free
What I always forget, until it happens, is dystonia hates the coming months. As soon as the temperature drops even slightly, the pain increases as muscles refuse to relax. My back seizes up and my hands ache continually. The slightest sniffle decreases my yellow one’s ability to control symptoms.  I generally become slower and every movement becomes harder. I am sure I have tortoise genes which not only make me slow but trigger the desire to hibernate until the Spring. I become bundled up with thermal clothes and layers upon layers jumpers. It is definitely not a fashion statement. Wheat heaties, hot water bottles and handwarmers become essential items. I have been known to have a hot water bottle on my knee as I go the shops on Bazil.
The clock change means we lose an hour. It is simple action and people happily talk about the extra hour in bed but dystonia has to protest. I have to be late taking my yellow ones so spasms creep in especially in my hands. An hour can make a big difference and once my body gets too low it struggles to catch up even dosed up. It has a knock on effect for days. My regular routine of clock watching at 4.30am, unable to go back to sleep becomes 3.30am so days seem longer and tiring. Less sleep means more symptoms and it becomes a vicious circle.

wpid-wp-1445842417361.jpeg

I am so glad Halloween, Bonfire night, Advent and Christmas are dotted throughout this time to make things brighter.

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dystonia, Just wobbly life

Seasons change and so do the clocks

leaves pile free

Autumn is my favourite season with its stunning colour changes, crunchy leaves and crisp mornings. It inspires me to whizz through the village and countryside on my scooter allowing my dog to run through any piles of leaves. If I can’t kick them in the air, he can instead. The clocks go back so the nights arrive early. The evenings involve low lights, keeping warm by curling up in snuggly socks, reading whilst drinking cups of tea. The family comes together more as everyone gravitates to the warmth of the fire. Dogs included.

leaves free
What I always forget, until it happens, is dystonia hates the coming months. As soon as the temperature drops even slightly, the pain increases as muscles refuse to relax. My back seizes up and my hands ache continually. The slightest sniffle decreases my yellow one’s ability to control symptoms.  I generally become slower and every movement becomes harder. I am sure I have tortoise genes which not only make me slow but trigger the desire to hibernate until the Spring. I become bundled up with thermal clothes and layers upon layers jumpers. It is definitely not a fashion statement. Wheat heaties, hot water bottles and handwarmers become essential items. I have been known to have a hot water bottle on my knee as I go the shops on Bazil.
The clock change means we lose an hour. It is simple action and people happily talk about the extra hour in bed but dystonia has to protest. I have to be late taking my yellow ones so spasms creep in especially in my hands. An hour can make a big difference and once my body gets too low it struggles to catch up even dosed up. It has a knock on effect for days. My regular routine of clock watching at 4.30am, unable to go back to sleep becomes 3.30am so days seem longer and tiring. Less sleep means more symptoms and it becomes a vicious circle.

wpid-wp-1445842417361.jpeg

I am so glad Halloween, Bonfire night, Advent and Christmas are dotted throughout this time to make things brighter.

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Writing a doctor would be proud of!

I love writing. I always have ever since I was a child. I always had a notebook with me to scribble down thoughts and stories whether I was at home, on the school bus or out and about. There is nothing as like grabbing your favourite pen (usually purple) and writing down what enters your head  letting the words appear on the page. For me, the best time to write is the middle of the night as I wake from  a dream-like state. Words. sentences and even paragraphs form so much easier when you are not consciously concentrating on it. My best essays were done based on midnight ramblings. Last night, I couldn’t sleep and found a pen to write a letter to my dystonia like some others have done very eloquently.

dear dystonia - Copy (2)

My writing was terrible. Even a tiny spider would struggle to read my words. The lack of sinemet and dopamine meant I could no longer communicate with my hands to do I wanted them to do. I have an app on my phone to write with and it is used more and more but it is not the same. Words do not flow and thoughts become disjointed in the delay of typing them because an app requires you to fumble about turning on the phone and finding the app then adding new pages etc. Sometimes the  ideas have faded by the time the page opens.It is frustrating and  I struggle to accept it . I miss the freedom and spontaneity a scrap of paper and pen gives you. Your brain does nt have to think, writing just happens

An old notebook shows how much my handwriting has changed on the last 5 years of wobbliness.In 2011, I was studying a fantastic literature course to keep me busy while I was off work while having treatment for vasculitis. My writing was normal and was done without a thought.

original writing

My handwriting began to get smaller the more I wrote.

big to small

A quick consultation with Dr Google triggered alarm bells as micrograghia is a common symptom of Parkinson’s Disease. I had already been told I did not have PD, despite other common symptoms such as freezing, tremor and no arm swing. It was enough for me to ask for a Sinemet trial. Luckily, I have a lovely neuro who was willing to give it a try. Immediately, I noticed the tremor in my hands calmed and my writing reverted back to its original size. It was amazing!!!!

An increase in meds and a final diagnosis did improve writing for longer so I could complete my course.

Roll on a couple more years writing is becoming more of a problem as the windows in the day my Sinemet works gets shorter and it does n’t take many sentences before it becomes an unreadable scrawl.

That said, it is  a daily miracle when my yellow pills perform their magic so I can pick up a pen and write freely with the added bonus of it being legible, not only to minute spiders with magnifying glasses or doctors.

At other times, I am so pleased I live in an age of text, smartphones and PCs ….