[ali12]

Hi there - It's Alison here,
Does anyone have any ideas on how to make my family understand what is up with me and what RSD is? I am having real problems getting my grandparents to understand what RSD is. I am sure that they think that it is Psychological?
Me and my moms sat my grandparents down and told them about what RSD is, how it affects me etc, but they still don't understand what is up with me. We have also printed information off of the internet about RSD but they just don't seem to understand what is up with me.
If anyone as any ideas on how to make them understand what RSD is can you please let me know? we are running out of ideas
Many thanks
Love
Alison

Merry Christmas and a pain free new year

[Desi]

Hi Ali!
I think they may be in denial. I mean are you not an only child and only Grand child? They most likely don't want to upset you or upset themselves. It is probably making them very sad seeing you in a wheel chair, your arm, hand swollen. If this does upset you so much that you need to talk about it, lay the cards on the table and tell them that it's ok for them to put their arms around you, you have RSD and they have to accept the fact that your in a wheel chair and so forth. First of all, Ali, your so young! 12 yrs. old, why.. your their baby!! They most likely want to remember the Ali they knew before without the wheelchair. Give them time, talk to them. I am sure they will come arond. In the meantime, we all love, understand and care about you. ((hugs Ali)) Love, Desi

[ali12]

Hi Desi - Alisons mum here
What you say about denial is certainly true of my dad - and Yes, Alison is his only grandchild. He dealt with my mums MS for over twenty years and just thought he had a second chace of happiness when this happened. He also moved to Spain around two years ago so it hard for him to understand how things are on a daily basis - he understands all about nerves and nerve damage but my mum never had any real pain so all this is new to him. I suppose he is very much like me in feeling that we have "served our time" coping with neurological conditions and why do we have to go through this again. I also know that the distance makes things harder, although we are both upset by his unwillingness to come back and visit.
My grandma (Alisons great grandma) surprised me totally yesterday when she explained all about the illness to my cousin. She totally got it right which came as quite a shock as she is in her late 80s and had real trouble understanding the mechansims of RSD at first.
The real problem is with Alisons paternal grandparents. As you may be aware, one of their other grandchildren (they have 6 in total) was diagnosed with liver cancer around the same time as Alison began to be ill. She had a transplant two weeks ago (they transplanted part of her dads liver) and is absolutely amazing - more or less back to normal despite the fact that she will have a restricted diet and have to take anti-rejection drugs for the rest of her life. She is so lucky and I have nothing but admiration for the way her mum and dad have coped with all this
Even though Alison has been ill herself we have taken her grandparents the 100 mile round journey twice a week to visit her when she has been in hospital and I have found it quite hard to listen to them repeatedly telling other relatives "They still don't know whats the matter with Alison..." despite having all of the information laid out in front of them
Whilst I know Alisons illness is not "life-threatening" we are basically faced with a situation which may last for the rest of her life - though I sincerely hope not.
It hurts so much to not be afforded the same concern they have demonstated so openly to their other grand-daughter. In all the admissions to hospital, Alisons grandma has only visited once (to help with a transfer to another hospital) and her grandad has not visited at all.
To make matters worse, this whole situation is beginning to cause friction.
The other day Alisons dad was stopped in the street by a family friend, asked how his niece was and told to look after his mum and dad as they were both extremely worried about her and his brother. When he asked if his mum had also told them about Alison being ill since March and in a wheelchair since July they looked puzzled and said they had no idea and were so sorry.
We all feel so guilty about feeling "let-down" by their way of dealing wih Alisons illness and also a little resentful in the way in which they have been so understanding and supportive of their other grand-daughter, but we obviously have Alison as our main priority.
Alisons dad had already said he wished it was as simple as taking something from us to make her better but its not, and this is something we all have to live with as a family
I am aware that the last thing Alison needs is stress about all of this but have no idea how to broach the subject and get them to understand what we are going through at the moment and that we need their love and support more than we ever have
Sorry to sound so down-beat at the moment
Hopefully some Christmas Cheer will wing itself our way soon and the New Year will leave all of this a distant memory
Much Love
Andrea