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The above is the cover of my card that I was planning to put onto my blog to wish everyone a happy holiday season. This was what I sent to my family and special friends. Every year I try to make Christmas more personal as a lot of Christmas's I have not been actively out and about. I seem to have exacerbations somewhere in the December- January time. And they last longer than others. That's what happened this year.
And I think it bothered me more a couple weeks into it as I had been so good in the summer and fall . The new drug Ampyra really increased my ability to walk and other activities. And I did more and I was planning to do so much more over the holiday's.
I hadn't been using my wheelchair for a couple of months. Obviously I still could not have walked very long distances. However I was able to use my cane or my walker when I wanted to go somewhere that didn't require too long a distance to walk. I even walked around a Target store with my wheeled walker with the seat. Of course that seat is a lifesaver.
Anybody who has had to use a wheelchair and becomes physically able to walk with a walker or cane for moderate distances again can understand my excitement then my angst.
When I could suddenly only take a couple of steps, was exhausted and then back in my wheelchair I couldn't believe it. I was really devastated. I was developing this image of myself of not being a wheelchair user. A person who was out and about seeing old friends meeting new people etc. And of course mentally sharp. And after a few days I did start to get better. And I thought "oh,this is only a blip". But then when I crashed down again and my arms and trunk too I knew this was my winter relapse back again. What was different was that I was getting much better then on previous exacerbations before I would crash back down again. The pattern was the same but the degree of my ability to walk between crashes was amazingly better. It seemed to be the same way with my arms and my trunk and my cognitive ability. But I still had that awful MS fatigue.
I think I'm a reasonable person. I understand that MS is a progressive disease and I know that Ampyra doesn't have anything to do with stopping exacerbations. It just allows the electrical signal to go down nerves with damaged myelin sheaths. Therefore you can walk faster and longer distances. It wasn't just the walking though that was down it was also the arms and the trunk and that dammed fatigue.
I had planned that I would go to midnight service on Christmas Eve this year. It would have been the first time in about 10-15 years. And there were several other events I had hoped to go to too. Some which I had not been to also for years. But my plans were dashed. I also knew exacerbations don't suddenly leave they go on and on taking their time. Then slowly you start to get better. But I kept hoping I would get better quicker this time. I guess hope never dies even when it's unreasonable. In fact that's why it's called hope. When a strong desire is not a sure thing, or could be a long shot- you hope.
What is hope.................
What hope means
Hope is bright shining light which keeps darkness at bay
Hope is the gentle cold breeze on a hot summer day
Hope is to remain positive when going gets tough
Hope is seeking more when others think you had enough
Hope is dreaming of tomorrow
Hope is simmering under sorrow
Hope is sparkles when tears in our eyes
Hope is a beautiful thing & beautiful things never dies
What hope means
Hope is as light as a feather
Hope keeps all of us together
Hope is ubiquitous and free of cost
hope is the last thing ever lost.....
I tried to be reasonable and go back to my techniques that I've used in the past. One of them was to remember that there are 12 days of Christmas. That gives you a nice leeway to send cards or presents till the 6th of January. But I had already started doing the cards and I found myself pushing and pushing and getting more and more tired trying to finish them. And then of course there was the tree trimming. I did have help with that-but still...
Yet I kept doing positive thinking." I'm going to get better soon so if I can get these things done now when I'm better I can more easily be out and about". After all I reasoned I have been having shorter exacerbations since I switched from Betasaron to Rebif and started monthly sol-u-med infusions.
However my family kept looking at me saying, "what's wrong ,why are you so snappy? Please go lie down." In truth I was so unhappy and exhausted. I've always found that if you do something nice for someone else when your going through a bad time it doesn't seem as bad. However, through exhaustion is stupid!
Then once rested of course I became more reasonable. And in turn I was able to acknowledge to myself that maybe I would not be up for Christmas Eve and all the other things I wanted and hoped to able to do. And I had to admit to myself that I was really angry about the situation and was not rising above it well. So I admitted to myself that I had to change things, really change if I wanted to have a happy Christmas .
With a new motto" live for the moment" I restarted my pre-Christmas preparation. I had already gone online to order a few gifts for everyone. So if I didn't get to our downtown (which I like to support) to buy that third gift it wasn't the end of the world. And I did my cards a few at a time and they got done eventually. I rested and napped more and began to look and feel happy again. Then when my brother?in law arrived on Christmas eve I felt rested for the holiday's.
The Buddhists say most unhappiness is caused by holding close things you do not want to change but must and pushing away change that must be made. Change and giving up what you want and planned for is difficult. I also went back to my sensible motto of try resting, adapting my environment and equipment first. Then know when it's time to go from Plan A to plan B or C. That decision is made many times with tears in my eyes or after a good cry. But knowing I had tried my best makes the decision easier.
Next week I go down for my monthly sol-u-med treatment. And of course I'm hoping that I will not be as tired after the treatment and it will help pull me out of this exacerbation. I have a 49th Wedding Anniversary coming up. And were planning and hoping I'm up to going to a wonderful inn then staying the night after a great dinner. The next day were playing by ear.
Here I am hoping again. But It's with caution. If you never hope for something important even if you are disappointed you may miss out. You may miss out on doing something because you hadn't planned for it. You also may miss out by losing touch with what's really important to you and become less of who you are.
The lesson I've learned living with MS is that you live hour by hour, day by day, week by week, month by month in the present finding positive thing to be happy about. Even as simple as the beautiful clouds or leaves on a tree. Or the kind act by a friend or a stranger to you or someone else. Hoping that things will be better will never go away. It's part of being truly human. But so is change and disappointment. As my older sister's always says, " remember there are thorns among the roses".
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