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TOPIC: Depression and Dystonia

Depression and Dystonia 3 years 2 months ago #3371

  • Supergran
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thank you for your reply you ring a number of bells for me....I know I need to cut down my working week but I am scared dont ask me of what because I do not know, maybe it is the one thing that dystonia hasnt stolen from me yet but is having a good try!!! or is it that I lose my identity and the one place were I am not a chronically ill and disabled person??? am I too young at 55 to be not working??? all questions I need to look at. I have a mortgage without insurance as I am not insurable and had planned to get the mortgage down to a manageable level then I would go part time, now I am thinking that I need to get rid of the mortgage and get my funeral business attended to then give up work. I think I need to accept my cloth is cut wrong and do something and that is for sure. I spoke to a good friend last night and her thoughts were now that I am stable and have put in the work and the fight to get to a better place i have brain space to emotionally take stock and I am just not liking what I am seeing but I have no choice if I want a quality life. She said that when you are marching you are not fighting and I have marched my way through all the tests and treatment and I do not need to march anymore because I have arrived. The reason I am fighting is my brain does not like the place I have arrived at and she makes sense so the question is if you do not like what you are seeing then change it and by that she means that I can and need to make a different life which involves friends who will keep me company and not judge me.

My family arrived today from NewZealand and it has been fine I have indeed been admired for my efforts and so feel a bit better with the nice comments which are of an accepting nature of my difficulties. My grand daughter age 5 swung on the hand rails at the back door like she was doing gymnastics and loved them....I have had them for 3 weeks and have put my family off coming to visit because of them. Its maybe just another time when I have to do baby steps now that I can really see what my life looks like and its not that bad really its sh..te but hey ho thats good for the garden!!

One day at a time and see how this road feels and if there are too many bumps then I need to get back to the GP another thing that did not help was I had the flu jab and took a serious side effect which had ne seeking medical help for 4 days in a row and nearly got me admitted to hospital and I dont think this has helped the way I am feeling. Then there was a work related bereavement which would have been avoidable had the person followed the doctors advice and I felt so incredibly angry and still do when you look at what other people are coping with and there is a family left behind to cope and be rehoused to other family members blah blah

Thank you for taking the time to talk to me it is very much appreciated it is just so old news with the family and so well just leave work and just do this and just do that, then its comments about how lacking in friendships my family percieve me to be and thats hurtfull and untrue the important ones are here and thats the ones that stuck around and dont mind that you can not do the things you once could.

Maybe I just need a good moan

Thank you
Christine XXX
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Depression and Dystonia 3 years 2 months ago #3372

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Oh I've had the flippant comments like 'just give up work' from family and friends because they don't understand. I've worked full time all my working life and worked my way up the ladder so -
No way I am ready to 'just give up work' it's my career and it's taken me a good twelve months to stop fighting against my body and mind and reduce my hours.

I'll carry on as long as I can, having said that it's not easy coming to terms with not being able to do things that I've always just got on with. I'm still adjusting in mind and body and since no one is able to tell me how I will be in a year, or five years time etc my future is unpredictable which is a bit scary.

You find out who your genuine friends are and you really only need one or two who love you for who you are whatever,

If you can afford to reduce your hours even slightly then it's worth it, don't know whether you would be entitled to PIP which I believe you can claim even if your working, it's worth looking into,

All the best, take care

Theresa
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Depression and Dystonia 3 years 2 months ago #3373

  • Matilda
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Hello Christine
Yesterday I went to a workshop with the Dystonia Society at premises in Maidstone. The topic was living with Dystonia and how it affects you emotionally. This was valuable indeed.
We were put into small groups first for about 10 mins to see what affected us the most and then gave our answers.
Dystonia is on the same side of the brain as our moods, hence all these feelings.
It was so good to meet others with these problems and talk about them. The meeting lasted about 3 hours so we had plenty of time.
All explanations what these feelings can do were written on a screen and people talked and talked as they identified with this.
i agree you are much too young to give up work at 55, not the work so much as your independence.
True friends will always be around.
I found out yesterday that there is absolutely nothing wrong at all in venting our fears or whatever.
I sincerely wish you all the best and may God keep you safe always
matilda
Anna
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the support you need
Last Edit: 3 years 2 months ago by Matilda. Reason: Bad Typing
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Depression and Dystonia 3 years 2 months ago #3374

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I've often wondered about the link between stress and dystonia and which came first in my case. We're often told that stress makes the condition worse and it seems to be the case with my cervical dystonia.
I often look back though to the time my condition first manifested and wonder what came first, the condition or the stress. The uncontrolled movement of my head and neck still causes me a certain amount of stress today after 8 years of learning to live with the condition. Did the onset of the condition cause stress to my body which made things worse or did the stress I had in my life bring on the condition?

Not sure either way but I constantly work at relaxing and changing my thought patterns to make life as easy as possible with a condition I have for life.
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Depression and Dystonia 3 years 2 months ago #3375

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Hi Casper
All I can tell you is that I had two years of sustained stressful situations that affected me badly before I developed symptoms of dystonia . On diagnosis My specialist neurologist told me that stress can trigger the condition. As in you may carry it but may have never suffered from it had it not been for the stress.

I have multidisciplinary dystonia with dystonic tremor and myoclonus. In my case the tremor was the first symptom I developed.
Unfortunately you can't avoid stress it's a part of life but the situations I was in was extreme.

All the best

Theresa
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Depression and Dystonia 3 years 2 months ago #3376

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Ha predictive text

Multifocal dystonia x
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