Do Meniere's Sufferers Lack Motivation?

[Barbara]

This may sound a strange question but one of our members, Hayley (hope you don't mind me posting this Hayley) was recently told by an ESA telephonist that this was the case.
Those of you on here and on other forums who have followed Hayley's journey with not just MD but also SCDS will know that this is just not true and is very insulting not just to Hayley but to all the many many people who struggle to get through each and every day.

MOTIVATED by this unwarranted comment Hayley has set out to raise awareness of her conditions. Her constituency MP said she was 'a victim of Government bullying' when she met with him last week and she has got other plans 'up her sleeve' to bring these conditions out into the open so other people are better informed.

I am sure we will all wish her well with her Crusade and in her recovery from the craniotomy she had only a few weeks ago to repair the SCDS leak. (She ought to be resting and recovering)

If there is anything we can do to help you Hayley just shout. I for one will highlight your struggles to my MP when your story breaks.

Barbara x

[hayley]

Thank you so much Barabara..This has to be one of the most severe cases of bullying my mp has seen,medicals were given without my being there..there is 130 pages I have correlated against ESA ,medical examiners manipulation ohm gp letters,slander ,data protection acts been broken..In my recovery from scds surgery they've had me running here there and everywhere til the stress got to much and yesterday went to the doctors who prescribed me diazepam to relax my facial muscles the tension is creating more numbness due to inflammation and stress..She was furious to see that the ESA have manipulated her words and ignored the facts about my illnesses menieres and scds..She is writing a letter on my behalf just to add to the surmountable evidence I already have on them..I have everyone on my side so that's a relief,but the hell they have give me is outrageous..I'm on the highest appeal ,this being my last and with everything I have they should approve me to the support group..Once I have that decision I can spring the suprise on them that I have tucke under my sleeve..lol.
I will of course keep you all updated you have been through this with me from day one of my diagnosis back three years now..gosh time flies..
My eldest girl had her prom last night and my middle girl turns 13 next week so I'm now going to enjoy the coming weeks and watch this space..As I say I have something up my sleeve x x
Much luv to you all,
Hope your all bearing up x x

[hayley]

In the years I've not worked ive studied psychology,sociology,criminology,creative writing,three levels in sign language and I'm looking for a lip reading course but no look in my area as yet..I have it in writing that at the medical they did not ask me to attend was lacking in motivation..this is all evidence I'm using against them..yes menieres and scds are giving me hell,but lacking in motivation?..
If you have any question,feel free to ask x x

[sharon]

Absolutely disgusting treatment Hayley.
I'm assuming this is the wonderful ATOS we're talking about?
Whatever it is you've got up your sleeve.....I hope you hit them hard with it!

Good luck with your appeal whenever it is....let us know how you get on
xxx

[Rigsby (TonyJF)]

Staggering ignorance shown by these people. I hope they get what's coming to them.

Hope your crusade goes well, hayley.

Tony

[Barbara]

Here is another travesty which will hopefully be reversed on Appeal.

http://www.dailymail.co.uk/news/article-21...r-lost-leg.html

Barbara x

[pint]

On the basis of the question "Do meniere's sufferers lack motivation?", I am not really sure.....(stay with me here...)

I have found that it is genuinely hard to motivate myself, I act out of necessity and rarely out of pleasure or choice. My symptoms would make me spend my days laying in a dark room - if I didnt have them, there are loads of things I would do.

So, I am a more "AMOTIVATED" person than I was/would be without MD.

Lots of the posts I read from others suggest that they find it very hard to motivate themselves too.....so maybe MD sufferers do lack motivation?!

However, in spite of my symptoms I hold down a busy and demanding job with a senior position and a lot of responsibility. I have a wife and two young children, I train in the gym several times a week, I do charity work and fundraising and have just completed another postgraduate degree.

So perhaps I could still be considered "MOTIVATED" even though I do not feel motivated and actually feel like I am dragging myself through treacle and finding everything 100 times harder than everyone else.

I think (in my experience) "amotivation" or "lack of motivation" is a symptom of MD. I know that many of us fight against this when we can, some of us making best use of every minute that we get free from the dizzies. However, few of those who have endured an attack will argue that there are times when, regardless of strength of spirit, we cant even sit up to sip water, let alone call ourselves motivated.

.....devils advocate much?......... :jump:

[Barbara]

Hi Pint,
Devils Advocates are very welcome to the discussion. thumbsup

I am sure we have all felt it difficult to motivate ourselves to do things but you have, over the years shown great determination to keep your life, work and family ticking over and that I think also shows motivation to overcome the problems of MD. Indeed being determined to find an answer and treatment to help ease the symptoms is also motivation.

Getting back to work however, is not just a case of being motivated to do so if the physical symptoms you are suffering are so great that normal, everyday life is so difficult. Unfortunately these ATOS ESA people seem to think that it is only our 'attitude of mind' that prevents this and unfortunately do not seem to realise how hurtful and insulting that can be .

I think 'my' answer to my question is that like many things in life it is a balance between doing what we are able but being realistic about the obstacles that MD puts in our paths.

May be we need to pose some more questions like this. It certainly motivates us to think about things.:clap:

Barbara xx

[Rigsby (TonyJF)]

I think this is more a matter of how we interpretate the word 'motivation. Even acting out of necessity rather than pleasure or choice is a form of motivation in my mind.

For those whose symptoms keep them tied close to home, that's not so much a lack of motivation, more a genuine fear and anxiety.

I think the fact that we get up and face another day and plough on demonstrates the sort of motivation those who are healthy cannot appreciate. For them, things that we may struggle with come naturally, and I don't think they have any comprehension as to how much we have to push ourselves in order to try and live as normal a life as possible.

Of course this won't be everyone - some people will be pulled under by this. But not in general, I don't believe.

Tony

[pint]

I have really thought about this....

If you took a very motivated person and gave them my normal daily symptoms for, lets say, one week. I bet they wouldnt make it out the front door.

I would suggest that it is many times harder for an MD sufferer to do anything than it is for a non-MD sufferer, and yet we still do incredible things.

I think that, when I die, my greatest acheivement will have been all that I did "inspite" of MD. No one will ever really understand just how much more I had to give than other people.

So, no more devils advocate, if you are an MD sufferer and you do what you can, when you can, then you are more motivated, more brave and more tenacious than anyone else could ever really understand.

It is a cruel, torturous disease, it is merciless and constant, it takes away all the pleasure and yet still you are here, cheering up other sufferers, knocking down each day as it comes up. I cant actually think of a more debilitating/life depriving illness (others may disagree) and yet, what a great bunch of people.

My consultant once said to me, "if everyone worked as hard at recovery as you do, the hospitals would be empty". I dont think I am the only one. You are all heroes, dynamic and powerful, full of grit, determination and the motivation to push on every day!! I bloody love you lot!

:mexican:

[hayley]

Thank you all yes this is atos and yes I'm still fighting and will fight this ,I have all the backup I need from my mp etc and a representative to come with me too my tribunal,I will of course keep you all updated,,
Many thanks and much luv x x

[Barbara]

Hope the appeal goes well Hayley. I had a rep.from CAB (in fact 2 as there was also a trainee observing) came to my DLA appeal. They weren't allowed to speak but were useful for finding things in the evidence bundle. They knew what was there and also knew that I couldn't search through things very well so did it for me. I also had my daughter with me and they asked her some questions. It certainly helps to be able to show the Appeal Panel that others are supporting you and in agreement with your claim.
I won my appeal with a unanimous verdict, not 2 out of 3, so it was one in the eye for DWP and they didn't appeal the decision. This was before ATOS came into being but I had had a medical with the DWP Doctor and when my consultant saw what she had written in her 'private 'part he wiped the floor with her in his own report to the Appeal Panel.

Good Luck

Barbara x