Thank you all ever so much for replying - I truly do appreciate it and it is useful just knowing that many people deal with family issues, although of course I am so very sorry that you all have to go through all of that .

I have tried giving my grandma and grandad a letter and a nice card to see if that would help make them understand but it didn't .... I don't think they even got in touch to say Thank You! We have given them all of the information about RSD, asked them to come to my hospital appointments etc but they don't seem to want to listen to anything that I say - I think it may scare them but heck, I am living day in and day out with this illness at such a young age! The grandparents that don't understand are my dads mom and dad - my dad doesn't seem to understand RSD or show much attention so I think that it may run in the family?? My moms dad and his wife are really supportive, it took them time to understand but after dropping a few hints to them and giving them so information about the illness they finally started understanding. My dad's mom and dad don't seem to want to hear anything about the illness what so ever.

I went to see my grandparents today - I only stayed for about 20 minutes but I figured that at least if I went to see them they couldn't say that I am not interested in them and don't tell them anything. I tried explaining a bit about my illness and how I have been doing but everytime I said something about how I was feeling, my grandad would change the subject and move onto something else. It's really strange has my Cousion was diagnosed with Cancer about 2 years ago and they were really supportive towards her but my Uncle's (their son) has just had an Operation on his stomach and they aren't supportive towards him. I tried to talk about things other than my RSD (just in case they didn't want to hear) but I was rather upset by some of the remarks I kept getting from them. I managed to stay calm whilst in their house but has soon as I got in the car with my mom I burst into tears. This is what I am like everytime I go and see them, they always get me waaaay too stressed and I end up sobbing my heart out!! I am one of those people that wont say anything directly to their face, it takes a lot for me to get mad and actually say something.

One of my good RSD friends wrote a letter to my grandparents and I gave it to them today and also explained why she wrote the letter. The ball is in their court now - it's up to them whether they decide to understand things better or not. I am going to give it a few days and see if they get in touch with me (give it time to let things sink in) and then if things don't seem to improve then I will have to say something to them.

Here is what my RSD friend put in case you want to read it - some of you may find it useful:

Dear Alison’s Grandma and Granddad

I would like to introduce myself, my name is Felicia, I am 23 years old and live in New Zealand. I have Complex Regional Pain Syndrome (CRPS or RSD, its medical name is CRPS but RSD is still used widespread) from a simple trip down stairs. I am currently studying at university, half way through my Bachelor of Physiotherapy. This is no easy feat but I am determined to fulfil my dreams and there is no reason to ever give up.

I have had the pleasure and honour of knowing your granddaughter Alison for a great deal of this year, she is a courageous young lady, fighting to hold on to her identity and overcome this terrible condition that is trying to take over her life at such a young age. She gives me strength on my low days and is a great inspiration to many. I hope to be able to meet her in a couple of years if I do well enough to get an overseas placement.

Being diagnosed with CRPS is a hard thing to take as is any life changing medical diagnosis. In reality this is little different from being told you have terminal cancer except with the cancer at least you know that one day soon you will die and be done with all the suffering. With CRPS I often think how nice it would be to know that there was an end in sight rather than day in day out of intense pain.
Doctors know little about how to treat this debilitating condition so we spend a lot of time trying anything they can think of that may help or offer some relief.
This is not to say there is no hope, there is always hope. Medicine is advancing everyday and pain research has uncovered a lot in the last 10 years and we hope more so in the future. But until the day comes when they find a cure or even a reliable management plan, hope is all we have.

Alison is young and this is a positive thing, young people are more likely to cope better with such a diagnosis as they don’t want it to rob them of a life. We have a strong fighting streak and are often too suborn for our own good. This is how we are able to pretend to the world that we are ok even when we are in so much pain we would rather be crying our eyes out.

It makes the world of difference when the people we love simply remember us. This is where you come in and have a very special role…
From what Alison has said in her low moments, she doesn’t feel like you understand or care about her since she got sick. I hope that this is not true (and don’t think for a moment that it is) you both love your granddaughter to bits but it is scary and hard to understand what’s going on or know how to treat her now.

The reality is, all Alison needs right now is her grandparents. She needs them to spend time with her, stop by and ask her how she is doing, what she has been up to, how her day is going and give her a virtual hug when she is hurting too much for a real one.
She needs to know that she has you to fall back on and be there for her, that she doesn’t have to continue with her pretending in your presence, that you love her and support her and care about her and understand that she is fighting for her life in a way that is so hard to understand unless you are fighting in the same way.

She needs you to be there when she is sick of being strong and needs someone else to be strong for her; it is such a wearying existence having to always hold up and never feel like a little girl protected by her family. Even though everyone is powerless to make everything go away, just the knowledge that you are there to help her be strong can make the world of difference.

I understand this is hard for you and maybe you don’t even realise you are not doing it, maybe you think you are helping and are waiting for Alison to say “I need you”. The thing is it is so hard to ask for help sometimes and we wish that others would just know we need it. I hope you understand where I am coming from, simply a friend of Alison’s feeling her pain and knowing what she is going through but then understanding how you may be feeling and not even knowing that she is hurting.

I hope you see this as a letter full of hope and courage so that you can help your granddaughter rise up to the challenge that is the reality she faces every day. I know how much you love her and wish she wasn’t hurting but I hope I have helped you understand how important you are in her life and that being there for her would make such a difference to how she is able to face each and every day with this life sentence that is rsd. Family is so important and I’m sure you understand that better than anybody.


Yours sincerely
Felicia Clark

P.S I have enclosed a copy of an ‘interview’ I did a few months back to spread awareness to others about how a person with rsd feels inside everyday…

I will keep you all updated and thanks ever so much once again for all of the best wishes and suggestions.

Love, Alison