DO YOUR FRIENDS AND FAMILY TREAT YOU THE SAME AS THEY DID BEFORE YOU WERE ILL??

[WILMA (aka Julia)]

My very close friends and family DONT treat me any different now than they did before I was in a wheelchair. BUT they do give me space when they know Im having a few bad days and dont push me into anything....HOWEVER....one of my REALLY CLOSE friends has really backed away and Im wondering why!

I was out for the first time in an electric scooter about 4 weeks ago and litterally nearly ran her over lol and I had to stop her and she talked and promised to call round the follwoing week but still havent seen or heard from her!

Is she embarrassed of being or going out with me now that Im in a chair? That I have gained weight? that I cant do what we used to do anymore?

Im not sure as she is pretty much the only one thats done this and I dont know why!

Yet the rest of my friends especially my biker girls treat me the same, dont patronise me at all, dont make allowances for me and still talk to me like they always did which is EXACTLY what I expect them to do...Im STILL me, STLL the very vocal Julia, STILL the leader in some things just Im now in a chair!

Its strange sint it when you become ill and need those who love you around you....I certainly know who my good friends are......I guess the rest are not worth worrying about!!

Julia xxx

[Jill]

Hi

I found that my having bipolar was used against me by my ex husband in the divorce case. I also think some people do discriminate even when they don't mean to by being more patronising and less likely to treat us equally. Having said that good friends and family accept me the way I am and have also been very supportive and helpful through bad times. I suppose some people will treat you differently but not the ones who count.

Bye for Now
Jill

[Louise]

Hi,

I think maybe your friend just doesn't know what to say to you or how to handle the situation. Give her time she may still come round if not, don't worry about it, her loss, you have the friends around you that you need.

Louise x

[WILMA (aka Julia)]

Well this friend I was talking about contaced me out of the blue and we had luch last week and it was nice to catch up and we said we will keep in regular contact so maybe she was just wary of how to handle the situation who knows!

Ive got her back in my life and thats good!

julia xx

[Jill]

Hi Julia

I think some people do feel awkward about illness and don't know how to handle situations when people they know become ill so they avoid the situation. Now your friend is back in touch hopefully you will keep up regular contact again. That is good news anyway.

Bye for Now
Jill

[WILMA (aka Julia)]

Hi jill yeah defunately glad she got in touch and hopefully see her a bit more these days!

Hope you had a good weekend break!

Julia xxx

[andyhibbsuk]

My friends and family treat me the same, they don't really see me as having a disability.
Dystonia is my disability. It's a neurological condition that causes uncontrolled/uncoordinated muscles.
In my case it's Cervical Dystonia, which affects my neck. It took about a year from when it started for me to be diagnosed by a Neurologist.
At the moment botox is the most common treatment. Without the botox I would basically be bedridden as the problematic muscles I have would go into overdrive, i.e. spasming out of control.

My biggest problem is the stares that I get, and negative comments.
I feel that the disability has opened my eyes to a lot of things, some good and some bad.
I wish that people would look beyond the disability and see a person, because at the end of the day most people will probably have a disability of some sort, just it may be invisible.


Andy

[Jill]

Hi Andy

So Botox has a useful purpose other than for cosmetic reasons.

Having Bipolar my own disability is mainly invisible and yet I feel people will judge harshly if they knew. And these days there is so much emphasis on appearance in society. And yet some people are amazingly understanding. Which are of course the people I prefer to get to know anyway.

Do you have any support groups for other people with your condition at all?

Bye for Now
Jill

[andyhibbsuk]

Yes Jill, botox is actually a neuro toxin. It works by blocking nerve signals.
In cosmetic use it relaxes the skin, whereas in dystonia the affected muscles are injected and then they relax.
movement disorder specialists can determine which muscles are over working either by sight, by touch, or using an EMG machine to listen to the muscles.

We have a number of support groups for dystonia sufferers. It's estimated that 100,000 people have dystonia in the UK.
I receive a newsletter from the dystonia society every few months, it's useful as it has very interesting articles about people's own ways to deal with it, complementary treatment and news about research etc.

I have a friend with bipolar, so I can understand a little how it affects for you.

A lot of the problems that we have in society are due to lack of communication.
I feel that the governments of the world need to address this issue as well as individuals.



Andy

Andy

[Jill]

Hi Andy

Oh it sounds like the treatment for dystonia is quite complex. Bipolar usually means taking medications and some of these are awful. I have been given meds over the years that are worse than having the Bipolar. Luckily since 2003 I have been prescribed meds which suit me and have not had any really bad episodes since then. But I do still have very disturbed sleep patterns and never know when I'll be awake or asleep next!

Sounds like your dystonia society is helpful. Are there any support groups on the web for you? There are loads for Bipolar people but they tend to involve a lot of arguments!

Bye for Now
Jill

[Mandy Lawrence]

Hi Julia

I wrote this long missive about friends and family and my experiences and then lost it. Cutting to the bottom line now, my nearest and dearest love me and accept me. My father suffers mental illness too, so there is joint empathy. My daughter grew up seeing and living with my illness and she is understanding of me and others with illness.

My friends...all they have ever known of me includes my illness and they accept me as I am.

The most surprising aspect of my illness in regards to relationships is actually how most new people I meet also accept me...and that is after I have told them about my illness. So people aren't always as prejudiced as some national organisations like to make out. Then again the media are the ones who tend to give people with mental illness a bad name in the first place by brandishing the mentally ill as violent and dangerous when most of us are actually considerate and rather soft natured.

Maybe your friend has some pre-conceived ideas about disability. Scuse my bluntness but they are acting rather anal about it (from what you wrote). Maybe in time they will stop being so spooked and realise you are still Julia and haven't morphed into an alien. If not, I am afraid, it will be their loss. x

[WILMA (aka Julia)]

Hi mandy, Andy and Jill!

Ive heard of distonia but dont think Ive ever met anyone with it but your symptoms sound similar to some of mine...my limbs sometimes please themselves what they do and dont consider me so I kinda know what that feels like! Yes Ive had the people staring at me too, I remember the very firt time I went out in my wheelchair and had a spasm in BHS..... I remember folk looking at me like I was an animal or crazy...it wasnt nice but then again I suppose if someone doesnt know whats going on then they will stare...Still rude tho lol!

I know a couple of people with Bipolar Jill, so I have a little bit of experience of it and yes people do take mental illness in a bad light simply as you say Mandy because of the way the media portrays it....and mud sticks!

I actually had a very interesting heart to heart last week with my best friend who said she feels like shes loosing me to this illness and the way my life is now....we both had a few tears and for the first time I was really honest with her and told her why I have become withdrawn, and backed away socially....
I explained that apart from the fact that this illness is making me sleep most of my days when Im having a flare up, and my energy levels are just about non existant, that I am also a bit embarrassed of how the girls will react the first time the see me having a spasm, or when my speech goes mid sentence bla bla bla, what if they all flock around me and make a fuss....so I decided to send them an email and explained this all to them and said that I wasnt intentially not wanting to see them anymore, just that I felt it was easier for me to back away, than for them to have to deal with me and my illness and be burdened by me, my wheelchair and this monster thats taken over my life!!!

So I deceided to have a get together (tomorrow night sat) and this is pretty much the first time Iwill have been together with them all since I got worse in November last year!

They have actually stopped asking me to do things now because most of the time Im not well enough to do anything, but to me that is my friends treating me differently now...

Anyway I will see how it goes tomorrow if I manage to stay awake long enough to have them here tomorrow night lol (I cant sleep at the mo for fizzing legs lol)...and will let you all know!

Its good Mandy that you have the support of your friends and family...I must admit my family and close friends have been really good about it all and especially David and daughter Kate are gems and I really couldnt manage without them!

Sweet Dreams
Julia xxx

[Jill]

Hi

In theory the closer people are to you the more understanding they will have but this also depends on communication. For example my ex husband just would not communicate and was lacking in understanding about my bipolar because of that. Whereas other people in my family and friends went out of their way to find out more information and to talk about it and understand. And we also have to let people know the way we are reacting as well. I think that is a brilliant idea for you to have sent your friends an email explaining how you feel and are reacting Julia. At least now they are not guessing about what might be wrong. Communication is a big factor in this in my opinion.

Hope you had a good night with your friends?

Bye for Now
Jill