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TOPIC: dystonia and work......what fun!

dystonia and work......what fun! 4 years 5 months ago #2409

  • Supergran
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I had 2 weeks off work about 6 weeks ago and this has earned me an appointment at Occupational health which was today....let me set the scene....Do you know about dystonia I politely ask.....yes was the reply!

So as the appointment proceeded all one hour and fifteen minutes of it!....my arms were checked for needle marks.....numerous evident as I have been carted of in an ambulance 4 days this week....casualty staff asking ambulance staff beggingly did you manage to get a cannula in by any chance? for the procylidine administered through IV. having told the Doctor this information he paid particular attention the the needle marks, when I explained cannula marks as previously stated to administer the drug needed to calm down my muscles.....strange its always at night this happens and never through the day? I am questioned...yes my muscles work through the day and are happy to work they are just not happy when it is bed time....(thought you knew about dystonia i am thinking)...what would happen if the spasms started through the day? I reply I have a crisis care package which I carry with me and at the first sign of a twitch I take a tablet....after all who wants to watch a full blown dystonic storm without popcorn and a beer!

We then go down the road of you have talked to your colleagues about this....well one has to explain that a hand that shakes the way mine does is never going to deliver to you a full cup of tea and in terms of this I have brought it up as a health and safety issue on numerous occasions without any thing being done about it...so I am forced to carry/use a cup with a lid if I want a cup of tea at my desk!

We then go on to my medical issues....all well managed and only in need of annual checks. OK then we go over my work load and assume that I am off work at the moment...I am not...and so it went on and on and on....clearly by now showing no sign of any knowledge of dystonia other than I have heard the word before!....so now I am asked to sign a paper to get more information from my Doctor...this is my only absence from work due to dystonia I might add...The Doctor needs a second opinion on whether I am fit enough to be doing the job I am doing....I ask so are you saying I should be pensioned off for medical reasons?...laughing...no no no I have no reason to be saying you are not safe at work...a danger to yourself or any one else....by now I feel like second hand goods...even though I am doing the same job as those who have clearly much better health than me and in my defence I now reel off my hobbies and out of work life style which clearly renders a picture of a well balanced work life balance!

I phone my line manager in tears and more exhausted than any dystonic storm has ever left me....came home or should say was sent home as I was in no fit state to continue my shift...I picked up a bottle of wine en route and am presently on my second glass and cant stop crying. I have been accused of taking time off as annual leave when I am really sick and in actual fact I have taken the day off to go shopping/tea/facials with a female friend after my hospital appointment....but alas I am to be made out to be a liar its not a nice time with a friend i am just hiding the fact that I am much more sick than I am claiming to be.

Feeling sorry for myself tonight and in need of a hug!!

Christine XX
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dystonia and work......what fun! 4 years 5 months ago #2411

  • ABWhisky
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Christine

Consider yourself massively (if that is a word!) HUGGED. Feel for you I really do as I have also experienced the joys of occupational health. I am still having problems trying to work due to the relentless pain and change in movement pattern that my current DBS settings seem to have brought with them. Need to ring the hospital if things don't settle soon.

Have a glass of wine for me then put the bottle in the fridge for another day.

Thinking of you. Hope you have someone with you.

Alison x
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dystonia and work......what fun! 4 years 5 months ago #2413

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Thank you so much for the hug.....dont be nice to me ....I am crying again!!! but dont stop with the hugs....2 people spoke to me today in work my last 2 attacks affected my voice and I was told my voice is so horse I cant understand what you are saying....I do sign language so I am at an advantage here ha ha how lucky am I that I respect disabled people!!!!....and the other colleague asked me why I had given up line dancing even though this has been explained to her however....not sure that i am going to earn a disciplinary action if I answer either colleague....so I dont I just look and say nothing...

Some times I wish I didnt live by myself...thank you so much for your support.
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dystonia and work......what fun! 4 years 4 months ago #2523

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Wee update got an emergency appt with Neurologist following a night in casualty and the most acute attack of dystonia I have ever had. I got home at 5.45 and had to be back at the hospital for 9.30am. I didnt waken up till 9.40...threw myself together...got myself to the hospital and was taken straight away...I was amazed and was expecting to be sent away because of how late I was...made my appologies along with an explanation and the consultation went ahead.

The outcome was a prescription for procyclidine in tablets form and the great news is that I have now stayed at home 9 days...my best score is 11 days and I am nearly there but best of all I feel great my muscles have had the chance to heal from the acute spasms and I am hitching up my caravan on Sunday and I am off to the Lake District by way of celebration I actually am starting to feel human again still have aches and pains but nothing like it was. I should say at this point I have now been in an ambulance at least 14 times and at times that has been twice within 36 hours and on another occasion 5 consecutive nights due to the stress caused at work by being disciplined for being sick. It has taken a lot of pressure off now my work have admitted mitigating circumstances and admitted that I should never have been put through the disciplinary proceedures

Hope all are well, love and hugs

Christine XX
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dystonia and work......what fun! 4 years 4 months ago #2530

  • jayceebrie
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Hi,
I have just been for my 3rd Occie Health review. I took all the leaflets and info plus a letter from Dystonia Advocacy.
I am going through Attendance management procedures and have just been told by my line manager that I may be going to stage 3 (hearing and possible dismissal). This is as a result of me being told by my Gynaecologist that I need a hysterectomy! So apparently that also counts to your attendance management and capability procedure.
I was told that they could do the hysterectomy in 2 weeks but I said could it wait until November, as I was thinking of work!!! silly me. So, I'm booked in for November.
I feel really let down at the moment.
My Mum died in June of this year which created alot of stress and caused my dystonia to be quite bad. I had special leave off work for my Mum but also some sick days because of my neck. My Mum's death has also been taken into the capapbility procedure.
I am also going through a divorce and this has been ongoing since last May. Hopefully nearing the end, so that too has created stress.
Honestly working for local government, do you have to be perfect, never ill, don't suffer with anything, basically someone who is a super human.
I'm going to join the Union.
:unsure:
Jayne
Jayne Wainwright
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dystonia and work......what fun! 4 years 4 months ago #2536

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How did Occupational Health go for you? I have been thinking about you and sending you big hugs to help your stress levels. Wee update I took the Union in with me to my last meeting and he was something else he told my boss straight that the condition I have is covered under the disability discrimination act and equal opportunity act. In this respect I should never have been put on absence monitoring. He also told my boss I could sue the authority for the stress they are causing me and the clear deterioration it is causing to my health and that I would win and probably win enough to pay off my mortgage etc. My boss explained that it was a new system and that there were teething problems with it but as far as my situation goes there will be no further action

Keep in touch and let me know how you get on

Christine XX
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