Permalink 10:54:00 am, by eleanor Email , 1097 words   English (US) latin1
Categories: my life, exacerbations, Thoughts, Adapting Activities, information



" People are always blaming their circumstances for what they are. I don't believe in circumstances.The people who get on in this world are the people who get up and look for the circumstances they want and if they can't find them, make them."

George Bernard Shaw

Balance has always been a problem in my life. Based mostly by having multiple sclerosis in the relapsing-remitting form for years before I had a definite diagnosis. In those early years I was afraid something might be wrong and sometimes I had doctors tell what I wanted to hear "that nothing was seriously wrong".

When I was finally diagnosed the neurologist was amazed that I was able to adapt and just ignore my symptoms for so long . But when the diagnosis was finally made it made sense to me and it was a relief.  Remembering those times with the feverless flu's dragging myself around clumsily and becoming so incompetent.  I also was constantly beating myself up for being so lazy. Then I would become myself again full of energy taking on too much feeling I'd just been lazy, unorganized and undisciplined. And I would vow that I'd  never let that happen again. 

So I looked for sources of inspiration to solve this problem of mine. I read many books searching for counsel. There is one great book that I still have on my book shelves that I kept returning to.

The book is "Balance" by Joel and Michelle Levy.

Why Balance? For a chronic problem of ups and downs I felt the need to center myself. And for many decades after my diagnosis I still have felt the need to go back and re-center myself. Why the continuing need to re-center? It's because the fundamental nature of my body with MS means relapses and remissions and over time a gradual steady loss of functional ability. And change requires adapting to my new body limits.

Some of these changes were positive when advances in MS care came into my life. When the drugs like Betaseron for MS first came on the market there was increased hope for a better life. And when I started taking it I did have shorter relapses. But fatigue continued so I was put on Provigel to help. And it did help some of the fatigue. But after many years on  Betaseron it became much less effective and I started spending much more time in a wheelchair.

I changed  my Neurologist and he changed me to Rebif (a Beta 1A )  and soon added monthly low dose Methelpredizone IV. The improvement was amazing. !! This caused a great change in my life.

In fact this was the best 3 years I had had for a long time!! I started my garden and other projects and I went out more. I went back to my walker, cane or crutch. My wheelchair was for long walking excursions only.  But gradually after a few years it became less effective and a decision was made as I was also a Type 2 diabetic (methlpredisone can increase blood sugar levels)  and I wasn't getting the amount of response from it that warranted risking any increase in my blood sugar levels.  This had a very negative effect on my function. My walking etc. decreased dramatically.

But around this time the drug Ampyra (a potassium channel blocker) which increases walking ability by allowing the electric current to flow better over damaged myelin sheaths covering the nerves was put on the market. I was put on this drug and my walking ability increased again . It was not the same as when I was on methlprednisone however I was able to walk a longer distance with it then without it.. This is a very meaningful event for a person with MS who has a much lower functional level.

My son's had over the years made many adaptations to our home to allow me to be as safely independent as possible. So when I was in a bad time I could still do some things I wanted.

They widened  the doorways to allow me to push my wheelchair thru easily, moved my bedroom downstairs and added a downstairs fuller bath with a hand held shower,seat and safety bars. And of course ramps to go outside and raised beds to garden in.  I also had purchased an electric wheel chair to be independent when I was out and about or when my walking ability was down.

Right now I am only on two MS drugs, Ampyra and Rebif (Provigil is no longer covered by my insurance and it's too expensive). My walking and functional level is down but it's been consistent, which makes it manageable.

I know how far I can usually walk and can manage my energy level quite a bit by resting ahead of events and by taking naps. This gave me confidence to plan ahead to do things I wanted to do.

In September I took a week trip with my husband to visit my sister and her family in Virginia. A few weeks later I had a nice visit with my niece and her newborn son. Then in the beginning of October a couple we had been friends with for years came for a wonderful visit.

I was becoming so social! I was able to go out to two charity events and felt secure on my managing this MS fatigue etc. I made plans to have my nephew and niece come to visit for a day.  Oh I was feeling so in control !!

Then I collapsed. My Fall annual relapse did come after all. And per usual as I start to get better it's 2 steps back one step forward. I'm tired of these relapses.

I'm starting to wish I had straight secondary progressive with no relapses because I don't end up ahead anyway when I remit. I have no control over that just as I have no control on how well I remyelinate (heal) after an attack.  But I do have control on how I handle all this!

This is why at this time re-centering is needed and why I have re-opened my book on balance. Going thru it and following their advice and thinking has always helped me thru  bad change. As my journey thru life aging beyond my current 78 with MS continues I want to be in control. I want any changes that I need to be based on my priorities of what's important to me !

Below is a link to a very good artivle on understanding MS.

Understanding MS with it's unseen symptoms better


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Ellie’s Rules for Coping Well with MS and Disability
Get Knowledge
Admit What's Happening
Set a Functional Goal
Adapt Lifestyle
Attitude is Everything
Be an Advocate
Live Life to the Fullest
Laugh Often
Then All You Need is Love
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