Permalink 03:32:19 pm, by eleanor Email , 848 words   English (US) latin1
Categories: my life, exacerbations, Thoughts, Adapting Activities, information


Last Sunday morning I woke up and staggered to the bathroom and went past the clothes all laid out on the dining room table. I thought oh boy where am I going this morning?  Oh yes I remembered Church.  It was late but I grabbed a cup of coffee and tried to wake up and  clear the fog.  But it did not work.  So I crawled back into bed.

Later that day I felt better so I decided to get up and try to finish what I wanted to finish in January as this was the 31st.  I needed to put up the Christmas pictures on face book.  These were something I really wanted to share.

So I opened up my picture file and face book.  Needless to say my foggy brain wasn't very cooperative. It seemed to me that they had changed how you put pictures up!  So after some frustrating attempts I called on my younger son who helped me a bit through my problem with my neural fibers in my brain in slow mode.

And we did put up a couple of pictures with proper identification of them. I also wanted  identification of everyone in the picture of my niece Gale's Christmas Family Dinner.  But when I looked at the picture it seemed to me it had shrunk and was so blurry that to identify people was out of the question.  And to be honest at that point I was so tired I could hardly remember my own name. So when my son said," Let me finish this up for you mom and you can add to it tomorrow or the next day". I gratefully took him up on the offer,

I swear everybody is getting faster and smarter and I'm getting slower and slower and dumber and dumber! At least that is how I felt then. So as that was my big event of the day I crashed early and had a long sleep.

The next morning when I woke up and walked to the kitchen to get my cup of coffee-- 10 steps was it.  So I sat on the seat of my walker and pushed myself backwards to my wheelchair. Then I went into the kitchen and  poured my coffee. Well this feels like relapse I thought and too tired to get angry or finish my coffee I crawled back into bed. 

The next day when I got up I wasn't better- now I was angry!  A week ago I was using my cane for short distances. I had started back walking outside with my wheeled walker. I was able to go 2/3 of the way around my short block. Inside the house I was mostly walking with no assist with a few wall touches here and there unless I needed to carry things that were heavy or awkward.  And I wasn't as tired !!!

I was making plans to go to the theatre, movies, out to dinner.  We were also discussing that we might do a coffee hour at church. Damn! Damn! Damn!

It just doesn't seem fair. It seems I spend more time in a relapse than I do in remission!  Of course I did have a lousy cold when I was in my remission which might have triggered the relapse. However, I didn't make myself get a cold.

I thought when I made my box for the Haiti Relief  I was going to have a problem finding reasons to put money in  that related to my being upset about MS .  Not so, that  box is starting to fill up real fast with IOUs.

Oh I know, I'm 74 and I should be mature as I know this is what happens with MS.  But you know my age and the fact that this has happened many many many times  doesn't make it any easier. Disappointment is disappointment. And yes I always get better, that knowledge helps, but it still takes too damn long to get better.

But then I look at the Haiti box I made and sighing I think putting things into perspective I'm still dam lucky. I'll get better! I have a great family. I can rest when it's is needed, I have the right equipment, good medicine,and good doctors.

I'm not saying all this is OK it's not!! But it is what it is. And it could be so much worse as it would be if I was in Haiti or I was a person who didn't have a good support system, good healthcare, or a nice home to be crashing in.

When I wake up tomorrow morning I'm going to spend  time looking at the shelf near the bottom of my bed.  Then start my day meditating on that prayer which my son made, framed and gave to me. Then I'll go online and find the relief agency list that helps the disabled in Haiti and send some money.


Grant me the Serenity to accept what cannot be changed

The Courage to change what can be changed

And the Wisdom to know the difference

                                               Be well, ellie

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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
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Laugh Often
Then All You Need is Love
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