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

dystonia and work......what fun! 4 years 3 months ago #2615

  • Mermaid
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good luck tomorrow :)
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dystonia and work......what fun! 4 years 3 months ago #2620

  • jayceebrie
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Thank you.
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Jayne Wainwright
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dystonia and work......what fun! 4 years 3 months ago #2622

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Well just had a review meeting with my Line manager and Personnel. I had the support from my Union rep. I am now being put on stage 3 capability! I am apparently making my line manager unwell! I was told that i had been supported by getting me a chair, counselling, cbt, paying me to attend my medical appointments for my neck., allowing me special leave to attend my Mum's funeral!!! My union rep wonders why my line manager is so against me. On one hand she is saying that i am needed at work because no-one else can do my job and on the other hand she wants to get rid of me.
I now have to start a statement of case with my union rep.
I have also been told that our Equalities officer says that if a condition is covered by the Equalities :) act then morally it should not be monitored on my attendance record. However, there is no Disability policy so it can't be enforced. So, my line manager and personnel are against me good and proper.
Jayne Wainwright
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dystonia and work......what fun! 4 years 3 months ago #2624

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Wow unbelievable and may I respectfully add keep up your strength and in your shoes I seriously would consider writing to your MP He is the guy that is trying to get everybody back to work at any cost and here are you with a job and all you need is a break to allow you to heal and for the doctors to get your medication settled and then you can get back to work. They dont treat pregnant women like this.

A huge hug to you and to fill you in I am about to be off work for a few weeks for exactly the same reason. I have viral chest infection I have had it for a week so far been in to hospital casualty again 3 times this week. First I thought go to out of hours service they nebulised me didnt work, nebulised me again with some thing else...didnt work instructed an ambulance to casualty they treated me for dystonia storm. Then we had a chat I told him since monday when I went to the GP I have being telling them its a chest infection. I should say at this point I have asthma as well.

Back to the nice doctor in casualty...he explained that I have a lot going on in my upper respirety ststem...asthma, dystonia and possible a viral infection. H e made me describe what I was coughing up...major yeoch...we played or I should say I became a 2 year and asked him if I had to say it because the thought is making me sick so he asked questions and I nodded my head...colour and consistency we wiont go any further with that one!!! so he gave me dystonia meds IV and a course of anti biotics and home I am growing an umbilical cord to this casualty department I even get a cuppa before I go home.

So I feel wee bit better today but if I leave the chair or bed crazy coughing starts up again and wheezing and for the first time I have to say I could not care about my work I dont think I have been awake for long enough to worry! I am just so knackered.

Big hugs to us both and do let me know how you get on

Christine XX
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dystonia and work......what fun! 4 years 2 months ago #2668

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Hi,
Had to ask for my review meeting notes yesterday from the meeting 9 days ago. After reading them i feel so angry at how they have worded everything. Apparently it's all my fault. I'm putting stress on my colleagues, i'm making my line manager ill. I apparently had no rught ti tell my colleagues about my dystonia!!!! How do people find out about these cobditions unless they are made aware if them?
As i have to sit next to my line manager i feel frustrated, angry, upset, fed up and have list all the enthusiasm i once had for the job.
My union rep has written to the head of HR stating my situation and that she feels they are ryshing into stage 3.
This morning i woke up with a pounding headache which is making me feel stressed already. I gave a meeting with my team today, who are wonderful. And i have to keep them motivated!! How can you do that when the service gas been cut and probably will be again.
Anyway enough of my moans.
Hope you are bearing up Christine.
I never realised that people could be so ignorant about life long conditions.
Hugs and love.
Jayne
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Jayne Wainwright
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dystonia and work......what fun! 4 years 2 months ago #2669

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Oh you are so in my gang I could just hug you and hug and hug you....

I am now back off work and attending casualty nearly every 2nd night although have had a couple of day time visits as well...very grateful that there was no kids in the street! Chest infection holding hands with asthma which is holding hands with dystonia! My GP has given me a line and actually asked me how long did I want to be off...

So I am about to go into round 2 of absence monitoring and cant wait to find out how they are going to handle this....Your situation have you been to the GP to tell him how you are feeling? I wouls want it recorded elsewhere what the manager is up to, you also have the option of the local disability officer either in work or DSS and see what there take is on this? because my understanding is with all this need to get everyone into work there must be some support out there on your side. I am going to test this out myself with the disability officer at DSS in preparation for going back I will let you know how I get on.

I am off to make a cuppa and settle down I ate black pudding this morning and am now paying the price...I am on a pureed diet and trying to get my head round it that is from hospital. Have you ever needed to go to casualty with spasms mine affect breathing quite badly at times and speech therapist has decided its a swallow problem. And 2 nights ago the Doc in Casualty let me know that they have a Team Meeting to discuss repeat offenders and she is taking my file because of how many times I have presented in casualty and the number of times I have had to be in resus.

There is a lot going on....

Will speak to you soon and try keep your chin up....when some one asks you about dystonia say in a reasonable loud voice 'oh I cant tell you that without a permission slip from Management then watch there faces thats what I did and then we had that meeting I very nicely asked for advice in respect of hiding my crutches so that it did not end up as a problem for my next Occ Heath appt...I then role played a victim of circumstances asking do you think I could maybe get a desk away from people and next to the exit door so that I can say sorry I am just going to a meeting and will speak later....my managers face was a picture ...I also brought up the fact I can not carry a cup of hot tea and asked would it be ok if I left the building and went to the coffee shop accross from the office to get a cuppa because they actually dont mind how many cups of tea they carried for me and she offered to let people know that I have this condition and may need some support at tea time because I cant carry a cup of tea safely....I could go on and on in fact the Union guy playfully slapped me on the arm and said its the stage you should be on not here!

Will be thinking about you and sending lots of hugs

Christine XX
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