When I began this blog a few years ago, I wanted to tell my story of what my new life was like as a below knee amputee. It then began to converge into a blog about having crps again, and the changes that meant for my life. Along the way, I hoped to inspire and help others suffering with the same and similar conditions, that being disabled isn’t the end of the world. It doesn’t have to be. Yes we all get really bad days. I’m having one today. But the main focus of this was to be brutally honest about what my new life is like. Somewhere along the way I have listened to too many people who have directed me away from honesty, and told me to mute the bad bits, because people don’t want to hear about what it’s truly like to suffer these conditions, and the only people who do know, are the ones who are actually suffering them. But now I want to put a stop to this. I figure, if people want a sugar coated version, then they won’t read this. The truth is, these conditions suck big time. My life has be devastated in so many ways since my diagnosis, then amputation, then rediagnosis, and then getting fibromyalgia on top. I have lost my job as an NHS nurse. I have been bullied by people I called friends, I have lost friends. I have suffered years of discrimination and been called a pain med junkie by the people I used to work around. I have suffered so much indignity, that I can’t remember what dignity is. Yet through all of this, I have realised some important things. My wife, is the most incredible person I have ever met. She has stuck by my side through thick and thin. When pain is at its worst, she is there. When I’m almost screaming, and crying, and talking about ending it all, she makes me laugh and reminds me how much I have to live for.
I know I’m not alone in all of this. There are so many people out there like me. We don’t talk about how we battle every day just to make it through. We don’t say when we have to cancel appointments and dates with friends that every time it chips away at your very soul. We don’t say when we want someone to bash us over the head with a very large bat, just to make the pain go away for a moment! Because it never does. Not ever. Not for one second. I live in a constant 8/10 pain score. As do so many others with CRPS. Then there’s the fibromyalgia, which pops up when you least want it to to add to the pain. Along with it is debilitating lethargy, nausea, migranes and generally feeling like you have the flu. So, yep it all sux.
Yet again, through all of this I have found some amazing things, and people along the way. I have made some wonderful friends, some even part of this blog. I have 1 friend who has truly stuck by my side throughout all of this, and she is wonderful. But other than that I have found a love of writing, and am still working through the edit of my 1st novel. I have found a way to adapt the sports I love, and manage to do them in a different way.
Yesterday I wheeled my furthest yet, almost 12 miles, in an hour and a half using my normal everyday wheelchair. Well on the way yo my first half marathon (yippee!!). Ahead of schedule. The bit you don’t see is today, laying on the sofa, unable to move. In agony, with a sick bowel by my side. I’ve been like this all day. Only now is the first time I could sit up. I’ve had cold packs on my head, heat packs on my neck, legs and stump. I’ve been sobbing, and feeling sorry for myself, and feeling so guilty because I had to miss my swimming session. But that is the nature of these illnesses. You have to take the good with the bad. You have to learn to appreciate every good day, and hope to God that they fall on those days that you need them the most.
So, there you have it. I will be speaking out, and telling the truth. I don’t want to hide anymore and pretend that life is easy, because it isn’t, for anyone. Those without any medical problems suffer. Everyone does. We all have our struggles. In this digital age, it is cool to seem happy and perfect all of the time, but no one is. We all have problems, and life is hard. So speak out. Don’t be afraid to tell people that things aren’t always perfect. Own it. We are all human after all. And let’s face it, perfect is kinda boring!! 👌