He is my full time carer and has been since 2010 but that role has become bigger and so much more involved over the years, as I have become more disabled.
I genuinely don't know what I would do without him.
I think he knows, or he should know, just how grateful I am for him to have taken on this role and I want to shout it from the rooftops just how much he does for me and for us as a couple.
When we moved to our flat in 2015, we did have a carer who came in for a couple of hours, three times a week. She would shower me and help with some of the cleaning and tidying. It gave Martin a break for those few hours, he would be able to go out and do things just for him and I loved having someone else to talk to!
Unfortunately the council, in their wisdom, stopped the funding and there was no way we could fund it ourselves, so everything was put back onto Martin. The term "full-time carer" basically means that he is the cook, the cleaner and the bottle washer, he literally does everything and carers in this country are badly undervalued. I was working out that his weekly payment, divided by seven days and twenty four hours, means he gets forty five pence an hour. He doesn't get a day off and he is on call for twenty four hours a day. Family carers really do save the government massive amounts of money.
We had COVID over Christmas, which was horrendous as we absolutely love it but Christmas 2023 was one to be forgotten. I think we'll remember it for all the wrong reasons though ☹️ Unfortunately Martin was in bed for about three days and it made clear to both of us just how much he does. The only thing that he really needed to do was feed Rosie and sort her litter out, yet another thing that I just can't do safely, but it absolutely had to be done.
My MS - and it is "my MS" because no-one who has a diagnosis of MS will experience the same set of symptoms. I have always said that you could have a room full of people who have had that diagnosis and we will all have different sets of symptoms and different experiences of treatment etc. It is something that is very hard to explain to anyone who hasn't got MS or hasn't had any association with the illness and it makes navigating the world of having a chronic illness a difficult one.
I always had the mindset, right from my diagnosis, that I wasn't going to just sit back and feel sorry for myself, I wanted to keep doing as much as I could. I was 'lucky' to start with because my symptoms weren't physically disabling. I had neuropathic pain, which I have had from day one and I haven't had a pain free day since July 2002. But I didn't have trouble with my legs until the following year when I needed to use crutches when I was outside. I was able to move around the house without using crutches, I would be able to furniture walk or use the walls to balance myself but now I am unable to move about at all without my crutches. I also use a wheelchair, I have an electric one for around the flat but if we're going somewhere by car, I have a manual one we can take with us.
I couldn't do any of it without Martin's help though. He makes sure my wheelchair is where I need it to be. If I'm going somewhere that, when we get there, will be too far for me to walk, he makes sure the wheelchair has been put in the car, so he is constantly thinking about what needs to be done for me.
It is very humbling, when I think about it and I am constantly asking him whether there is anything that I can do to help him. The answer always comes back as "no".
It is so difficult for me because I have always been someone who actively wants to help people, so being physically unable to do that is incredibly frustrating. I want to be able to stand up and just walk across a room, something I wish I had never taken for granted.
When I think back to the years I spent as a dancer and all the theatre shows I did, something I loved and was passionate about but am no longer able to do, it is soul destroying BUT I was determined not to let it get me down and I was able to do three charity concerts, raising money for MS and I loved being a part of that.
Me in Sweet Charity circa 2001
I haven't sung for quite a few years now though and my confidence has gone so I just sit back and watch!
I live my passion through Martin now, who is a wonderful actor and singer, so I love seeing him perform on stage.
I am vocal about him doing shows as he needs to have an outlet too, somewhere he can go and socialise with other people and concentrate on something completely different. It's important for him as it gives him a change of scenery and I hope it stops him getting cabin fever! 😂
Martin in The 39 Steps
He will hate that I have written this post but I needed to write it. I need people to know how important it is that family members take on the role and responsibilities of looking after someone they love. They haven't trained for it and weren't expecting to be called upon in this way but they do it none the less.
I'm so blessed to be able to call Martin my husband, he is my soulmate and my best friend but he is also my carer and for that I am, and always will be, eternally grateful 😍
Rosie loved the Christmas tree! 😹
Stay safe out there everyone!
XxXxX 💕
No comments:
Post a Comment