Video Interview with Nikki

“Hi, my name is Nicky Dalladay, and at the age of 21 I was diagnosed with Multiple Sclerosis. At the time I didn’t really take this on board and what it meant, and I was only just starting my realtionship with my then partner and now husband, our life carried on as normal, we carried on pursuing our hobbies, we were both keen amateur dramatists, we loved appearing on stage, we loved singing, dancing, acting, playing hockey, all sports, just enjoying life, having a great life. David married me and too me on knowing what could possibly happen. I had my eyes firmly covered with rose coloured glasses and believed that nothing was ever going to happen to me because I thought I was going to be one of the lucky ones.

I was wrong. He married me, took me on and life continued for some years, we carried on pursuing our hobbies and our interests and travel; we both adored travelling so much….later on about the age of 35 I had a hockey injury, I broke a bone in my leg and had to have reconstruction surgery on my knee…..After that I found I couldn’t walk very well…I had to get a walking stick. I went on my journey to get a walking stick on my own, I was so afraid of what was happening to my body, and I would almost say that I was embarrassed at the age of 35 that I would have to use a walking stick…That was more for older people not younger people….I looked like a drunk with it, my gate was becoming a little dubious, I was wobbling….Then it became apparent that I would need to move on from a walking stick as it got harder so the hospital produced a pair of crutches…..It was just my lower half that was really affected….I moved onto the delights of the really old people and had a zimoframe. This was all becoming very frightening, unchartered territory that I and David were about to enter into.

The hospital saw me and said I was an accident waiting to happen so this now meant I would have to go into a wheelchair; and in my early 40’s I went into a wheelchair. And I felt that once I had gone down this route into a wheelchair, I was never going to go back to how I was with a walking stick. So emotionally and mentally this was a phenominally difficult time for me to get to grips and come to terms with what was happening to my body, which was so out of control. I couldn’t embrace being disabled in any way; it wasn’t something that I had ever factored in at all.

I’ve always been an independent woman and did everything for myself and shared my life with my husband. We lived as a couple…but my body was going to strip any form of independence away from me. It had decided how I was going to live my life; and that means having to live my life permanently in a wheelchair, David having to do everything for me, all of a personal nature- he’s the only one who sits me on the toilet, wipes my arse, deals with my period. We live our life as carer/cared for. The man and wife, intimate side of our relationship is gone; it’s had to , theres no way it could continue. Yes my head still works and my heart still works, but my body is pretty useless. I can’t write anymore, I have to drink through a straw, David cuts up my food for me and there are times when I can’t even raise the fork to my mouth.

This to me is not life, it’s not the way I had my life mapped out. Yes I’m prepared to put up woth a little inconvenience, yes I’ve become accustomed to the changes that have happened, because each time a part of my body stops functioning, i liken it to a grieving process. I have to grieve over that part of me that no longer works anymore. It’s a form of bereavement as far as I’m concerned….I have to try and pull myself out of it. But the question is; how long can I continue doing this for? At the moment it’s fine….But my mind wanders to when were older….there are lots of restrictions as to what I can do over the course of the day and to be honest life just gets boring when you cant do anything. You can get up and walk out of this room any time you want , I can’t, I have to just sit here until someone wheels me out of the room, I have no choice.

I have a very strong passion that I believe I should be entitled to live a dignified life as well as have a dignified death, but nobody hears me. Nobody, nobody will hear me, and that upsets me greatly. I don’t feel sorry for myself n any way….I just want what nobody will give me. Yes I would love to able to walk but thats not going to happen , yes I would love to revert back to life as it used to be but that’s not going to happen, is a dignified death an option at the moment? In this country, my birth country- no it’s not….I’m being denied everything…

All I want to do is live my life and die when I choose and it’s my choice. I’m not asking anyone else to make that choice for me. Lots of people are opposed to me talking like this but I would say that it’s because they don’t live with this condition or a condition like it…It’s not until you live with it that you truly know what it’s like. It’s all very well to witness something but until you step inside my body or anyone else’s body, you don’t know what they have to live with; and it’s not a great way to live. I don’t want to die at the moment, that’s a given, but at some point in the future I will and that’s when I want the choice available to me.”