Tuesday, 19 July 2011

MS ; A pain in the ass disease in the very least

The above statement came from the surgeon that pieced my shoulder back together after my fall last year. He made that statement because my recovery from surgery has been anything but normal. I spent two days a week for the past year in physio therapy and over 16 weeks in a physio pool. To put a little perspective on this, the norm for recovery from my type of surgery is 6 to 8 weeks of physio.

MS has proved to bring its own set of challenges to physio, I have been extremely lucky to have both a surgeon and a physiotherapist that were more than willing to try new approaches to my recovery schedule.

Heat has become my nemesis now. Even a hot dinner can cause fatigue. Being immersed in a 94 degree salt water pool was initially more than a little daunting. I was assured that there was a mechanical lift available to get me out if required. The pool turned out not to be a problem. After a 1/2 hour in the pool I was not fatigued any worse than a 1/2 hour of any light activity these days. But go figure why 10 minutes outside in any temperature over 76 or 78 will get me wondering if I can make the 100 ft walk from the mailbox back to the house.

It took months to get to be able to lift my arm to chest height. Several times x rays were done to confirm  that all was well with the surgery and the healing. Under normal circumstances injections into the joint and reassessment of the surgery would be considered, but as my MS is not a known factor in the recovery process these options were held off.

Each week there was some progress, most times only a degree or two of more movement, but at least some improvement. Keeping the faith and convincing myself that any improvement was worth the effort became hard at times, but I felt if my therapist was not going to give up neither would I.
About 3 months ago my therapist had to take 3 weeks off, and we started discussing what I should be doing for those weeks and whom I would see during those weeks. I was getting more than a little tired of the 2 days each week routine and suggested maybe I could take a rest for those 3 weeks and see how my shoulder reacted. In short I did nothing for those 3 weeks, no exercise of the arm, no stretching of the joint. And low and behold I gained almost 5 degrees of movement. So I went another 4 weeks of no routines, just used my arm as best I could. and another 5 degrees of movement. Maybe it is the MS reacting to the muscle stress of the physio, maybe without the physio stress my brain has found a way to signal my muscles in a other than normal way. There in lies the "pain in the ass" of MS its not known what it does in individual instances.

So my arm is reasonable, I have about 60 or 70% of normal movement and very little strength. But I am sure the strength will get much better with time. And the movement gets better, all be it ever so slowly . So maybe I can only reach the second self with my left arm. When I look back at the pictures of my shattered arm and shoulder I can honestly say I am lucky, it could have been a lot worse.

The other effects of my MS are fast becoming a bigger pain than my arm.
I spend more time trying to remember what I am looking for than I do looking.
I take naps 3 hours after I get up in the morning.
So as not to trip over my own feet, I watch where I place each foot so intently I forget where I was going before I get there. It is like walking around in the dark, carefully placing each footstep so as not to stumble.
Walking around in the dark may actually be easier now, maybe I need to start a MS benefit column :-)
I did an earlier post on depression, but it is fast becoming the number one effect to deal with. I know the bottom is falling out when I get depressed about being depressed.
Exercise creates its own little vicious circle. Exercise brings better muscle reaction, more exercise creates more fatigue. Fatigue worsens muscle reaction, and around we go!

Learning to live with MS is hard. Not only hard for me, but hard for everyone around me. Giving into accepting the limitations MS imposes on me, without giving up is hard. Hard for those who have to accept my limitations as well. Accepting the loss of independence,  becoming a dependent is hard. Dealing with it all is overwhelming, but very much manageable when broken down and dealt with individually. Sometimes I slip and let the entirety overwhelm me. The hardest part is waiting for the time when I don't have to think about dealing with it on a daily basis, because it has become habit to deal with it and stay positive.

I try my best to believe the old adage, What dose not kill me, makes me stronger.

So my dog and I need to resume our daily conversation now.
Funny how he never forgets where we left off  :-))

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