Last week I wrote a bit about fatigue. My remedy, not for fatigue but rather to take my focus off of my fatigue, is to try giving more. Before I share how the last week has gone, I’d like to share this gem of a poem I found from early 2004, not quite a year after my MS diagnosis. Fatigue is an old friend of mine.
Never enough rest.
Sleep here on this bench
at the YMCA,
with my back against the wall.
Sleep on the couch
for ten minutes
while cookies bake in the oven.
Close my eyes
just for a minute
until the light changes to green.
Close my eyes
for the second that it takes
to say goodbye to a tear.
At night in my bed,
they come to chase the rest.
Poking, burning, binding pains.
I feel myself shrinking,
everything diminished as
I grind my teeth and lose my hair.
Atrophy of the mind
body and spirit.
There is sleep sometimes,
but never enough rest.
It’s a bit bleak, but it’s also very real. It’s where I was. But there’s good news! Sometime around late 2006 a doctor finally listened when I said ‘pain’. Prior to that I was still getting, “MS should not cause pain”. Or “Maybe it is something besides your MS, let me send you to a series of time-consuming and pointless tests and visits”. And my all time favorite, “You are depressed”. You think? I wasn’t going to argue the depression, but rather which came first, the chicken or the egg!
After finding a doctor who understood that MS can cause pain and listened to my descriptions of my pain, I was given prescription medication that helps tremendously. My pain is a mix of neuropathic or nerve pain and pain brought on by muscle spasms.
Controlling pain allowed me to exercise more, go to physical therapy or get a massage and yes, to sleep better. In 2009 I found a fantastic naturopath who also understood the trickery of MS. I now have supplements that help with my pain and many other symptoms, and allow me to use less medication. I still need both and that’s okay.
My hope here is to share some empathy with others who have chronic pain, but also to educate. MS can cause pain.
As I tried to focus last week on ‘giving’ a gift to someone, well…I couldn’t focus! Over dinner we sat down and talked about what we had given. If someone had not had an opportunity to give it wasn’t too late, a gift of doing someone else’s chore could still be made. On more than one occasion I found myself saying, “Well shoot. I know I did give something. I remember thinking ‘this will be my gift’, but now I don’t remember what it was.” I was too fatigued much of the day, in zombie-mode, to really focus and remember details. Thus commenced a re-hashing of what I could remember of my day until we hit upon a gift. But it often wasn’t ‘the gift’ that I had intentionally given. This stressed me out. It took me until the weekend, when I could catch up on rest, to come up with the brilliant plan to WRITE IT DOWN in my calendar that I carry. I carry my calendar everywhere, because I will forget something in the time it takes to cross a parking lot!
The up side of these evening talks was that I realized I give many gifts in a day. Even when I am feeling my crappiest. Perhaps the 5 or 6 previous attempts at the 29 days of giving had a positive effect! Mark and my boys are also great givers, not necessarily thinking about it as intentionally, just doing it out of nature and habit. That makes me happy. My youngest would say he had forgotten to give a gift that day. As we would talk through his day, many small gifts of kindness would be revealed. How cool is that for a 14 year old? We talked about opportunities to stretch, give the gift of kindness to people ‘outside of our comfort zone’. One evening we were at a charming little Christmas shop downtown. Dozens of decorated theme trees and any ornament imaginable. My oldest son found one he wanted to purchase. As he took it off the branch at eye-level, he paused. “Is there another one of these down lower?” he asked. I pointed one out. “Oh good, I’ll take that one. That way if someone else likes this ornament, they will be more likely to see this up here,” he said. Who thinks like that? A natural giver. “Do you realize you just gave a gift?” I asked.
We will continue our giving experiment this week. I am learning to be forgiving of my forgetfulness. Learning that I tend to give, and receive, much. I am discovering kind and generous souls in my young men. And they are seeing it in themselves. I am still tired and fatigued. But is this taking my mind off of it? You bet! A much better way to spend December.