An excellent article on MS fatigue, both physical and mental, and how the body deals with it, reacts with it, how the person with MS presents when dealing with it. Click on the title to read it...
I can see myself in this article - being able to do math in my head on a Monday morning, barely able to add 2+2 by Friday evening. My son bought me a Nintendo DS with Brain Gym for it and I can see my performance ebb and flow depending on my fatigue level.
My first few days off on disability...Left work on Tuesday, never to return. I feel as if I SHOULD be doing all sorts of things but I can't. Content to curl up with a book like a weary pussycat, I can barely get the oomph to do my dishes.
I am reviewing disability and hoping to persuade my doc that I qualify ASAP. I meet with him on Monday and am arriving bringing forms and etc. to start the process. Then I plan to sell this place and move back to Kingston to a little apartment with air conditioning and try to get ahold of this disease. I just don’t think I can keep up anymore.
Yesterday I walked ¾ of the dog block here (downtown and back) and then could NOT walk the last ¼ - I felt fine but the legs wouldn’t work. I had to swing my arms mightily to get them going and was puffing and completely out of breath by the time I got home. And I’m still almost completely numb – today I found one spot where I still have sensation (my right armpit). Handy that, in case I run into any sharp or hot objects with my armpit! I mean, should I be walking about with my arm raised just in case?? Drafty. And odd.
After my walking thing yesterday I thought - dammit I have got to get in better shape - so I did my MS exercise DVD (free from one of the meetings I went to). So I go through it all and everything is doable, except marching in place. I can't get my arms and legs coordinated, and I end up lifting the arm and leg on the same side together. I try to readjust, but it still doesn't work. Bizarre. We do the aerobics part three times during the whole workout and EACH TIME IT’S THE SAME. It's like I am sending messages and my body is misreading them. No wonder I am such a failure at stepping in time to the Miis on the Wii...and, on the good side, this gives me the final undeniable reason why I will never have to go to aerobics classes. Which I never wanted to do anyway. And it might even work in speed skating…or, ahem, maybe not…
I dunno. You’ve got to admire this disease for keeping things interesting. I mean, if I had cancer, or a stroke, or whatever, every day would just be more of the same. This way I have the excitement of finding something new each and every day. Refreshing. I have an internet MS buddy who is a social worker with a wild sense of humor – she and I are talking collaboration on a book that will be an answer to all those perky “You can overcome anything” books written by the independently wealthy. It will be bitter, biting, funny as heck, and filled with all sorts of details you probably won’t want to read about your mother.
Sometimes the fear of this disease makes me feel trapped, makes me want to run away as fast as I can from everything, everyone. It's scary as hell to think about what very well might be. Although I still look fine on the outside, I am completely numb. I have difficulty with crowded rooms, multiple tasks, focusing on conversations, listening, completing things, walking, seeing, making good decisions, controlling emotions, managing finances. I've stopped playing the piano and the viola because there is never any progress, and my writing is suffering because there are never any ideas.
Emotional stress kills me; physical stress exhausts me. And yet on I go, one foot after another, one situation after another.
I am superficially gregarious, cheerful, and motivated. Internally I want to curl up in a ball and die. I'm such a chicken! The thought of being incontinent, dealing with cramping and spasms and pain and falling and visual problems and all that terrifies me. Especially as I have had significant losses in the past year and they ARE NOT GOING AWAY.
And then I read this article about driving and MS. And I realize I am in fact showing signs of losing abilities in driving - I've noticed for a while that I have troubles driving at night, in traffic, when distracted, to new places. I am ever so subtly avoiding these things but what this means is that my world is pulling in around me tighter. Living in the country makes it better and worse - better cos there are few traffic issues, worse because when it is dark out, it is very very dark out, and I have to drive everywhere. Losing my driving ability here would mean complete isolation and dependency.
So I am panicking - quietly and internally but panicking none the less. And praying I don't make bad decisions because of this panic.
Today is a grateful day. The sun is shining hard enough for me to want to take my coat off, if not for the competitive wind, which makes me zip it up tight.
This morning I woke up and realized that things are just not that bad. And I felt grateful, happy, and humble. I am grateful for the 50 years I had before I knew about my MS. I'm grateful that even feeling tired didn't keep me from what I wanted to do - from leaving my marriage, to raising my kids, to moving homes and jobs every couple of years, to writing, to gardening, to finding joy.
I am so humbly grateful for the friends I've met along the way, the ones I have yet to meet. I'm grateful for the time I had with my parents, shortened though it was, and the fun childhood I had with them and a myriad of cousins. I'm grateful for the time I was married, for the traveling we did, for the opportunity to stay at home with th kids when they were little. We did crafts, dissected hearts, raised frogs, watched eclipses, cooked, read, watched way too many Disney Movies and kids TV programs, laughed to Monty Python, squirmed and danced to Rocky Horror. We raised pets by the fistsful, and loved one dog to distraction together. I am so grateful for this time, this precious time.
And I'm grateful that the walls haven't shut in around me yet, and there is still a shoot starting to reach for the sun again.
Thank you. I can't thank enough for all of these gifts.
SO here's the thing. A completely unpredictable disease, with completely unpredictable day to day outcomes. How does one plan? Can one plan? Or should I take the path I've always taken in life and drift along in the current, sometimes kicking out a little to the fast running centre of the stream, sometimes leaning to the edges where I get to spin around a bit, resting for the next push...
It's stood me in good stead up til now. I've been in some gentle hands, for which I am grateful. When an opportunity falls through or I get stopped in the water, generally there's another tasty thing floating by that I can grab. Many people would believe that's the hand of God. I don't know. I do know that whoever put together my particular parcel of molecules was generous. I am able to grab, able to swim forward, mainly unfearing as I face the world.
Today, I can think. The balance is a teensy bit off (hahaha) and the pain level is not insignificant, but I can think and I am not exhausted. I am grateful. I am so grateful. Every day when I can think is a gift, that I only now appreciate so very much. So, thinking ahead, I push outwards again, reaching into the faster current. I don't know how long I'll be able to ride this time, but I need to grab the chance while I can.
My brain is clearing and laws above, I am less tired. Perhaps, perhaps, my flare up is over. It feels like driving along a highway and seeing a clearing through a forest to the side - it flickers into your view first; you doubt it. When you pass it again, you are a little more certain that it is there, and eventually it becomes clearer and clearer.
The light starts to filter through the trees, and eventually you can see each individual plant, leaf, animal.
Feeling energy return is so encouraging. I never thought it would be so.