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
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
strongfitfabulous 
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.
Jacqueline, have a look at this:
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.
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