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

dystonia and work......what fun! 4 years 2 months ago #2675

  • Jo
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Hello Christine

I have just joined the forum I am sending you lots of hugs and thought your message was hilarous in places. You clearly have a great sense of humour would love to share a glass or two with you.

I believe I am going to be taken down the same route as you. I can't wait "talk about kick people when there down".

Anyway just wanted to say I hope things improve for you very soon.

Take Care
Jo
Last Edit: 4 years 2 months ago by Jo.
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dystonia and work......what fun! 4 years 2 months ago #2676

  • Supergran
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Nice to hear from you.....I think I got fed up fighting and recognise the lack of respect and if they dont have respect for you then why do they deserve respect....I also should say I think the ambulance crews have helped my confidence a lot they allow me to be in control because they are honest and tell me they dont know anything about dystonia so I take the lead and they follow they are fab.....except for one paramedic whose open comment was I have cervical dystonia and I dont 'carry on like this'....my response was just you stand there and keep staring at me son because 6 months ago I looked like you...in fact take out your pen and pad and start taking notes because you are looking at what could be your life in 6 months son! fortunately the ambulance crew arrived and told him we need to move look at the state of her breathing and they got me away from him.

Having said that the crew are always good if you can laugh at yourself which is good for stress. We talk about how cool would this be at a Halloween party now dont be arguing who wants to take me to the party. You have a great sense of humour my response...how can you not laugh when you look like this. some one visited this on me and it would be rude not to share the joke....the best bit...now guys up to you how you want to handle this but I have no control of my leg muscles so you have to take responsibility for your own crown jewels and dont be trying to blame me because you have been warned.

Casualty staff are fab one time came in through ambulance bay and the ambulance crew shouted 'get the procyclidine ready and one of the nurses shouted back is that christine you got....ambulance crew OMG is there a plaque with your name up...Its all good....challenging!!!!....but all good

Lots of love and hugs to us all

Christine XXXX
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dystonia and work......what fun! 4 years 2 months ago #2699

  • jayceebrie
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Hi to all of us who are struggling with work and particularly managers and colleagues who you once thought were your friends and wanted the best for you!!!!!!
I was on my way to a course this morning and my neck just siezed up. I had to oulk into a lay by and jyst sit for a while wondering what to do. This has never happened to me before, not to the point were i can't move my head. Anyway i rang 111 and was put through to a nurse eventually who told me not to drive, couldn't anyway, and was there someone who could come and rescue me! She also told me to ring my doctor. So, i rang my partner to rescue me and then rang the doctors. Had to speak to one of the other doctors who basically said, well we can't do anything so go home and rest for 24 hours and see how you are then!!!!
I then had a phone call from personnel asking where i was because my line manager was on the same course as me and she wondered where i was. I tolx her what had happened and i was then asked 'i have to ask this is it because of the course or is it your neck'?
I said nothing. I think she got the jist. Yes i'm sitting in a layby not able to move my head just because i didn't want to go on a course? What a stupid thing to ask, and this is a person who i thought understood. How wrong can you be. I then got a txt from same person really worried about me and if there is anything she can do to help then i just have to let her know. I DON'T THINK SO.
So i was rescued and taken home and went to sleep with a hot water bottle on my neck.
I really feel so low at the moment because of my line manager and her spies. I sometimes wonder if they haven't got anything better to do.
Hugs to us all.
Jayne xx
Jayne Wainwright
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dystonia and work......what fun! 4 years 2 months ago #2700

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Colleagues are either too sweet to be wholesome .....AKA condescending or ignorant beyond measure....they want to know that you working as hard as them and not getting special treatment and in the middle of all this one has to find some way of hiding dystonia and because for most of the time it is visually not there then are you really disabled because you dont have any signs and so it goes on and on its just so not fair. Its so tough to be working with dystonia.

Hugs to everyone who are trying to continue working and those who are not please share your stories...I have just been told by hospital consultant that I should be thinking about being retired on health grounds and I have no clue were to go with that one!!!

XXX
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dystonia and work......what fun! 4 years 1 month ago #2791

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hello Jayne

How are things going for you now? did you get the operation are you still at work? I am at the start of another round in the absense monitoring and honestly this last illness/episode was so bad I am still off work....started with viral chest infection which affected my asthma and dystonia in that as the doc at the hospital said too much going on in your upper respirital area....he gave me steroids and an anti biotic....Gp's contribution was paracetamol....anyway every thing is settling except for the spasms and they are in my throat which is horrendous and last week I actually woke up choking and my what a fright I got, I jumped out of bed and phoned 999 who were very quick and very comforting.I give you a laugh....I know its not really funny but there are times when you have to laugh...my legs stop working and this happened in the middle of the road a car arrived and fortunately for me he stopped and was so nice to me....another day I went to supermarket thinking...I can do this but you know how it is you go in for a loaf and come out with two bags full...as you do...so I thought hang the bags on my crutches and walk slowly job would be done...however lady approached and asked if she could help me....she must have been 70yrs ols or not much of...so I thank her for her kindness and said I would be ok as my car wasnt far away..next thing my bag was removed from my crutch and was asked for the other bag...I thought I was being mugged....again I said thank you for your kindness blah blah and he replied I didnt ask you if you would be ok I asked you for the bag!!!! I handed over the contraband and showed him were my car was and he packed the car etc and the best bit of the story was....if the lady was in her 70's the man must have been about 85yrs...some times your faith in people is strengthened by the good things people do.

any way I was in bed got up because I am feeling bit sorry for myself, I am now going back to bed to see if I can sleep. You know sometimes you just need a good cry and it just does not come....looks like it waiting its time for my meeting at work!!

Christine XX

God Bless XX
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dystonia and work......what fun! 4 years 1 month ago #2792

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You are so much nicer than me....I would have said to the girl....you know I think Ia am going to let you think about that one and then you can tell me which page in your people skills book did you find that one...

A colleague one day went on and on and on doing man talk basically and the only kind of conversation she seems to be capable of....her final comment being I am as fit as f.... and I cant find a man so you have no chance...my reply its not that I have no chance of getting a man its just there is no chance I would be telling you!!!




Christine XX
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