Stormy Weather – A Journey to Well Being

I hate being so Fucking needy

Ladies and Gentlemen….life with Tardive Dystonia of the generalised variety with all body involvement is not fun

 

I am dependent and disabled

 

I can wash and dress myself.

These simple stressors will often provoke a mild storm lasting a few minutes. The dystonic storm is what I was presenting to hospital with.

If you have seen the video of me in hospital  you have seen what a storm can be like for me – although the muscles can change – be more or less

I had never heard of it before.

It’s not  very pleasant

 

https://www.dystonia-foundation.org/what-is-dystonia/frequently-asked-questions/frequently-asked-questions-symptoms

 

I can feed myself but cooking is still beyond me.

The fatigue and storms that occur on exertion are debilitating

 

Eating is one of the most challenging things for my body -frequently resulting in a storm of breathlessness, cervical, axial, arm and hand twisting and clenching -my torso, dragging me over forwards or backwards depending  on the muscle that is going off

 

Frequently, is an improvement on always

 

I can walk up to 50 metres with only mild consequences ….however pretty much anything beyond this will provoke a storm.

My feet will both turn inward causing imbalance and often my thigh muscles will contract causing a bizarre marching effect or  more often, stasis – where I get stuck –  I will get breathless and my arms and neck will assume clenched, weird postures

 

The pain from the neck and torso twisting and arching sits about a 6-7  most days – My best days are when my neck is supported back and front – my torso is well supported and I have very minimal exertion

 

I am able to speak normally more frequently but not for very long  – Telephone calls where I might need to speak continuously are especially difficult. It won’t be long before my speech deteriorates significantly

 

Laryngeal spasm is frightening – fortunately, while I have frequent occurrences daily  –  they only last a few seconds

 

The storms are getting less frequent and less intense

 

All of these symptoms improve with sedation,  sleeping and laying down. The storms become less intense and shorter – My ability to do everything improves.

It comes at a cost – Clonazepam gives me short term memory loss, confusion and puts me to sleep

Being sedated makes the dystonia more difficult to cope with mentally, and the memory loss and confusion makes me feel empty

Being sedated all the time is horrible and I save  small doses of  it for when I have to go out or I need to take pain relief

Am I bunging this on? ….Am I making it seem worse than it is?

No….This is how it is

 

Over the last 2 years I had become mentally strong

 

Healing my depression, had been a successful and very spiritual journey for me – and I had got to a place where I could only see the many gifts Depression had given me

…..I hope to do the same with this

With Love

Jacqueline

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4 thoughts on “Stormy Weather – A Journey to Well Being

  1. I’m so sorry you have to go trough this, I really hope you get better every day and when you meet the specialist that he can help you without the drugs that make you sedated.

    Good thoughts and prayers for you, Jacqueline.

  2. Hello Jacqueline, I’ve been reading and following your blog for a wile now. You are a truly inspiration. I miss your posts tough. I hope you are fighting this and hope to hear from you soon.

  3. Dear Jenifer
    Thank you for your kind words
    I think the posts may be a little more sporadic depending on my physical capabilities..
    It is an incredible wonderful crazy intense journey and I learn and learn and learn. So many gifts are flowing to me now :).
    If I can empower one person it will be worth it.
    Never forget, you are not mad as the pharmaceutical and medical industry would have you believe. You are a beautiful being who’s experience is adding to our universal knowledge of well being. Shine your light 🙂
    With love Jacqueline

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