Friday, January 14, 2011


I did a little looking around today, as I often do when I have some time I found this article from the Rocky Mountain Multiple Sclerosis Center - here is a snippet from it.

People newly diagnosed with MS will usually, and appropriately, focus their attention on treating and controlling MS and on hoping it will go away.  They often make statements like, “I am going to cure this with attitude,” “I am not going to give into MS,” or “I won’t let MS change my life.” After they have had MS for a while, though, most people experience a shift in how they respond to it. There is a realization that MS isn’t going away. It is a paradox. Although most people with MS have an intellectual awareness, from the very beginning, that MS is a chronic illness that won’t go away, the emotional comprehension of what it actually means to have “a chronic illness that will not go away” can be quite a jolt. Accompanying this jolt is the understanding that the rules that govern your life have changed and you will have to change, too. Thomas Kuhn calls this experience a “paradigm shift.” In science, human development, and learning to live with MS, this sort of disorganizing jolt is essential for development to occur. Once the shift occurs, there is no going back. But out of this shift comes the possibility of realistic hope.

The article can be found here

I read this and thought to myself... how true this is, but it goes further.  Every time you have a new relapse or a new symptom or a new MRI with activity or you have to start medication or change medication you seem to go through that emotional jolt all over again, to varying degrees.  I guess it's because you get comfortable with your lot and then the rules change again... change change change and then the grieving process... shock, denial, anger, bargaining, depression, testing and acceptance starts all over again (google Kubler Ross if you are not familiar with this and want to be).
I find this jolt distressing, I'm sure most people do otherwise it wouldn't be a jolt!  Maybe people with MS have heightened anxiety continuously because they don't know what is going to happen next.  I know I have gone to bed many nights wondering if I will be waking up with a totally numb foot or leg.

I saw a friend today, who said something along the lines of, it's so hard to believe you have a disease when you look so well.  I feel well.  I wonder if this changes when you develop a disability... do you stop feeling well? I think I have written in a previous post that before Mr C came on the scene, I knew I had MS, but I didn't really comprehend it as a serious disease, even though I know it is a serious uncurable disease.  The daily medication meant that I needed to re-examine my own personal footnote to the serious information regarding MS.

I have observed that I am starting to view my MS as not so serious again.  Mr C is insignificant, really, if I'm honest in the daily to-do's of my life.  The side effects I experience are the same as everyone elses who has a Mr C in their life, which to me are minimal/minor.

However this outlook about my MS could change at any time... but that's the thing with MS, you never know when... it tends to insidiously lurk around (pretending it's not nearly as bad as it really is!)  This means then that you have to go about your life as it is currently and embrace it 100% otherwise you might lead a quasi-kind of half life of what if's.  And I don't want that for myself. 

Anyways Mr C had an appointment with my right thigh today.  As per yesterday, with my left thigh he went slightly to the inside.  Today's site is a bit raised.  Yesterday's is now red and raised and a bit welty.

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