Trapped by a Broken Body

Tuesday morning started off as it normally would or so I thought.

When I wake up I usually have to lie there for a while; it usually takes my muscles a few minutes to get ready before I move.

Every day my muscles seem to tighten and progressively get sore and by most evenings my legs are burning and I am in a lot of pain; without high dosage of muscle relaxants and pain relief I doubt I would cope. The problem is that they do the job perfectly so until I know that I ready it is best to just lie there and wait.

I felt ready, my muscles seemed to be fine and I thought it best to get up; my mind and my body were in disagreement.

Trying to push myself up to an upright position and I couldn’t do it. I felt weak and every time I gave that extra push one or both of my arms would give way and there I was again lying down but after 10 minutes of trying I managed to sit up.

I was sitting up and it was time for me to get dressed; however, today I decided to do things differently. Once I was sitting up I realised that I was bursting for the toilet so decided that I would get dressed after.

Leaning forward to push against my bedside stool to stand and everything went wrong.

My muscles in my arms felt weaker than normal and the instant I pushed I realised that it wasn’t going to work. My arm twitched and buckled under the pressure, I was leaning forward which meant that my counter balance was off and I was falling. When this happens it always seems to go slowly, I am trapped in that moment and there is nothing that I can do about it. There I was, at 8.25am, in a crumpled heap on the floor, feeling rather sore where I hit the stool and the wall.

What was I going to do?

Luckily, Social Services have given me an ELC (Emergency Lifting Cushion) the only problem was that this was in in the living room and I was in the bedroom. I was alone, the boys were with their Mum and I was stuck without anyone to help me.

I sat myself up and did what I needed to do. I carefully dragged my limp body through the bedroom, across the hallway and into the lounge. I moved across the room, set up the cushion and got myself on top and ready to lift.

This was difficult. The strength I usually felt wasn’t there, my legs didn’t have the little reserved power that they normally would and my arms barely had the strength to keep me upright.

Luckily, with the help of the ELC, I was able to transfer myself from the cushion to the sofa. I was back to a good position and I have stood up from that spot thousands of times. This, however, was the one time I couldn’t.

Every twist on my legs to stand and they faltered and I fell back on to the sofa. Every push on my arms and they shook with effort and then gave up and, again, I fell. By now I had been moving for an hour an 15 minutes, from the bedroom to the sofa, and every attempt my body failed.

I was emotional, I was crying, I was angry, shouting at my body to work, I prayed for help and I pleaded with my body to just move. I still needed the toilet; it wasn’t long until that need had gone.

My broken body had finally broken me.

There I was, lying awkward on the sofa, a grown and proud man, in his own mess because he couldn’t stand up. Crying and screaming at the stupidity and humility of it all.

After 10 more minutes I pulled myself together and managed to actually stand up.

I was sore, a level beyond any limit I have reached before but I was standing. By 11am I was still not clothed but I was standing.

My muscles are weakening and deterioration is happening so I will struggle. It was only a week ago that I visited my specialist and he confirmed the significant loss in my muscle strength but like most times I have seen him it is a bit of a rough estimation of what and when things will happen; I notice the changes though.

This time was different; I have never been caught in a position at home where I felt vulnerable and trapped; trapped in a body that was failing me.

Wednesday was a new day and all I had to do was start again. I had the boys and we did what we normally do, played, laughed and lived; I just happened to do it covered in bruises.

I write this because it needs to be written, awareness needs to be made and this is my way of doing it.

Having Muscular Dystrophy sucks but not as much as when it traps a healthy mind. I just hope that I have something supportive in place for next time.