I started writing this post last week as I reached my eight month milestone of having Transverse Myelitis.
I started out by writing about what I can or cannot do now, but to be honest, it was pretty boring.
I’m pretty sure you don’t want to know a monthly update on my condition, even if you are wondering how I’m getting on. So I thought I’d do it a little different.
I’m going to let you know what I’ve learnt in the last eight months.
Just in case you’ve not read any of my other posts and you don’t know what Transverse Myelitis is (don’t worry, most people don’t) I’ll give a quick description. TM is when the coating on the spinal cord is damaged. The spinal cord sends messages from the brain to the rest of the body so when it is damaged in any way these messages get disrupted, or may not get through at all. TM is very rare and most of those who have have a completely different story to tell. Mine is…The cause of my attack is unknown, it was acute/happened quickly, and I have two damaged areas in my cervical and thorasic areas of my spine.
So what have I learnt?
When in hospital at the start of my attack and I was completely paralysed for a while I learnt that life is very short and you never know what to expect. You have to live life for today, what’s the point of leaving things until later if it can all be changed in just a few hours by something completely unexpected?
I took so many things for granted. It’s so easy to go day by day not being thankful or appreciative for the things you have and spend too much time worrying about what you don’t have. I’ve learnt to be much more thankful and appreciative and remember this every day.
Life for disabled people is very different, from small things to big things, it is different and often much more difficult. I suddenly find myself in awe of disabled people that cope so well. Of course you must get used to it in time and I guess eight months is not long in the scheme of things, but I take my hat off to so many disabled people who are making a difference like paralympians. However, we have to remember that not all disabled people can ever become paralympians, for many it’s just not possible but they still get on with their lives.
My family worry about me much more than I ever thought. I know I have good relationships with my partner and children, but when something like this happens you really do see how much they care, and worry.
Suddenly you become a brave and courageous person. I really don’t feel this way at all but it’s what people say to me all the time. I don’t find it condescending, it actually makes me feel better. I do try to be positive and get on with things, so maybe I am..or I could be if enough people think it of me.
Slow and Steady
You have to slow down. There is no way of continuing life at the speed I used to live it, it’s hard to get used to but I have to do everything much slower. I have to rest frequently or I’m in danger of burning myself out. I’ve spent many an evening unable to do anything at all because my ‘spoons’ are all used up, then I go to bed and can’t sleep because I’m in too much pain. Slow and steady is my new motto, every day.
Wheelchairs are only fun if you can pinch one off your aunt, mum, partner etc. for a quick spin, then give it back and walk away. If you’ve ever seen someone in a wheelchair and thought they had it easy because they were not on their feet all the time and had to walk everywhere, then think again. I’m sure they’d rather walk but doing so may be impossible or just too painful or exhausting. Wheelchairs are not an easy option, they are uncomfortable, tiring and often just a pain, or even a nightmare when there is not a drop kerb in sight.
What I do and Don’t Know
So, here I am at eight months and I’ve heard that I may improve, I may stay the same or I may even get worse. No-one knows. I do know, however, that I will appreciate every day of my life and make the best of it I can.