Fatigue and Multiple Sclerosis (Ordering/Editing My Life)

August 2, 2011 at 1:18 pm (Multiple Sclerosis, Trigeminal Neuralgia)

I have talked about fatigue and MS before, but I am having to really re-visit my routines because of extreme fatigue. Let me ‘splain ~~ you know how when you get tired you can’t wait to lie down, but you usually are able to complete your tasks?? When I get fatigued, my legs just stop moving. I don’t collapse, but I cannot go forward or backwards. It takes all of my energy to brain my way to my bed. My back and thighs usually start to spasm. I am left extremely stiff and in pain. I have battled MS and its side effects for 21 years. Every few years, I must edit my life. Two years ago I stopped accompanying the Central Cambria choirs. I just couldn’t do it anymore. It is time to edit again. I am letting my blog readers a little peek into my thought processes.

I did try a pill that was sort of an “upper” a few months ago. It made me jittery and jumpy. Cross that off the list.

I have been prayerfully considering my new reality. My first non-negotiable priorities, after Jesus, are my home and family. Next on the list is exercise. If I can’t do some sort of exercise, elliptical, walking with my walking stick, yoga or pilates, my body, because of spasticity, becomes stiff and cumbersome. My creative outlet, sewing, painting and making jewelry are also non-negotiable, although I can no longer take day-long art classes. What to do? How can I manage? What activities need crossed off of my list?

I have come to the conclusion that I can no longer rehearse the Contemporary Choir at EBC. Driving at dusk can be a hazard, because of “low vision.” I will be willing to fill in at keys or vocally when needed, but cannot be a regular contributor. God, in His love and mercy has provided me with a ministry. I have been asked to be one of our Pastor’s prayer warriors. That I can do. I take this job very seriously, bringing his requests daily to the Throne of Grace.

I have decided to still clean my house. I feel that if I relinquish that task, I am crossing a line I am not ready to cross. However, I have broken the house cleaning into 30 minute blocks of time 4 days a week. For example, today I am cleaning my bathrooms. Yesterday I dusted the whole house and swept the downstairs. I have a whole house vacuum cleaner, which eliminates dragging a sweeper around πŸ™‚

I grocery shop on Tuesday mornings. Why Tuesday? Well, except if it falls on Social Security day, Tuesdays are quiet and the stores are not crowded. I leave the house by 9:00 a.m. and am home by 10:30.

I am limiting my cooking to two or three days a week, relying on leftovers to fill in the gap. I usually bake a goodie on Monday, while I am cleaning my downstairs. Laundry is split up ~~ one or two loads every other day. Really, though, laundry isn’t hard… I just have to transfer clothes from the washer to the dryer and fold. These tasks are completed before 1:00 p.m.

I must also create. I am trying to spend an hour a day either sewing, making jewelry or painting. That is not limited to the a.m. I just create when I feel able to.

Exercise in some form, at least 20 minutes a day is necessary. Today I am just doing yoga. I walked Sunday and Monday and have stiffness and spasms today. I am moving, but carefully and gently.

Cognitive problems come with MS. That is why most of our bills are on auto-pay. I also have a list every day, which I check and double check so I don’t make a mistake or forget to do something. Of course, I love lists so that isn’t a hardship.

Another thing that is important to my marriage is social time with friends. It doesn’t sound important, but darling DannyO and I need to go out and enjoy dinner, listen to a band… all that encompasses a social life for 50-somethings πŸ™‚ Spending time with Danny is important for my 31-year old marriage. I still like him and want to keep it that way!

There you have it! My new reality! I have a chicken cooking on the stove for chicken soup, the vegetables are all chopped, ready to be added to the broth. Groceries are bought and put away. I made peanut butter cookies yesterday. After I finish this blog, I will go clean some toilets and sinks… then my “must-do” list is completed for Tuesday!

Depression is often a side-effect when dealing with a long-term disability. However, when I move purposefully through the twists and turns of MS and TN, I feel productive and validated. I am in charge. I am in control. I will walk through this with joy!!


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