Throughout yesterday I spent some time, in between everything else to do a little research on Google, I honestly wish I had a medical degree and didn’t find medical reports so boring, but they are always the best place to find out the truth. I generally give all the patient sites a body swerve as they are all sugar coated and written in a fashion supposed not to worry people, in other words, a version of the truth so watered down that finding the truth, is almost impossible. What I found out about contracture is as bad as I thought it might be, but what I was really looking for was the symptoms that lead up to the full finale, more specifically if it start by coming and going, or if it is purely a gradual tightening, I couldn’t find it at all. Mind you with my having MS and spasms, it does change the picture just a bit, either way, it would be so nice if I could just have one thing that does directly what it says on the packet, rather than having to piece bits and pieces together from all over the place. Even though contracture is part of MS, the information about how they work together was limited as always, other than it was mentioned as a cause in almost every site, but without specific detail.

One of the articles I read was actually very interesting as it was something I had never thought of and if I haven’t, well I doubt if many others have either. One of the ways that contracture can occur is as I thought through limited use of a muscle, but what interested me was that included the time you are sleeping. We all dismiss sleeping as some magical part of our lives that isn’t relevant to anything other than how tired we are, according to what I read it is actually one of the things that can lead to contracture, especially for those who are bed bound. I may not be bed bound yet, but I do spend the majority of every day lying in bed. On the good side, I always lie on my back so my body isn’t curled up which allows our muscles to tighten into that very curled position. I saw a picture and read about people who are permanently in a foetal position and can no longer straighten out at all, if we are permanently in the same or similar positions, the final result can be totally permanent. I may not finally be curled up, but I am sure that I don’t want to be locked flat like a plank either, I know that is an extreme but it has put into my head the thought that I should at least try to change my position slightly, even if it is just when I first get into bed, I know I will land up straight out by the time I wake, but I can at the very least try, I can also change the angle of the mattress elevator more often as well, as that will force my body into a different position.

It set me thinking as I do like most disabled people spend nearly all their lives sitting or lying, I mentioned about six months ago that I thought the muscles in my calves were tightening as I don’t seem to be able to keep my heels on the floor when sitting, they start on the ground but slowly rise without my knowing it is happening. Well it’s still happening and that too is contracture and it isn’t as simple as exercising the muscles to stretch them again, it will help but apparently once it has started because we do it without conscious thought the time spent contracted out ways the time in its natural position. For my legs, splints would help, but with my diaphragm well there appears to be nothing that can be done, other than my trying to hold good posture and to take huge breaths every now and then to try and stretch the muscle as far as I can. Clearly, I can’t do that all day long and I definitely can’t when I am asleep. What I do realise now is just how important it is to try and change position frequently, we can’t stand up and dance, but for an example, we can stretch out our legs occasionally and not sit without our knees bent all the time. Not once since I became limited in my mobility has one single doctor, nurse, OT or physio pointed out the importance of staying flexible, if not mobile.

Over and over again I have come up against the same situation, they don’t tell you until it happens and then they say that it is reasonably common to my condition, well why didn’t they warn me! Becoming disabled is bad enough, becoming more and more disabled because no one bothered to tell you how it could be at least delayed, if not avoided, is quite simply cruel. I truly wish they would see that, rather than playing this stupid game of not worrying us about something that might or might not happen. I am sure that I am not the only person that feels this way, in fact, I know that I am not as I have had comments and tweets confirming my feelings are more widespread. It seems to be something that I had hoped went with the Victorians, this constant belief that since we aren’t medically trained, we just wouldn’t understand, well hello, we do when someone tells us about it! It reminds me of dealing with the people in my old IT department who treat me like an idiot until I proved to them that I knew as much and in some cases more about parts of the network than they did. That is fine with an IT department, but it is mental when it comes to the entire NHS!

Please read my blog from 2 years ago today – 4/10/12 – Safety Net 

It is over 30yrs since I started having symptoms of MS and I was dismissed by the doctors and family alike as making it up for some strange reason that I never worked out why I would have been. What stuns me more than anything I hear from others is that this type of treatment is still happening, and there…..