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For the last two years, I’ve been waiting to get back to feeling “normal” again. Granted, my version of “normal” before May 7, 2013 was still at about 50% capacity of healthy folks’ version of “normal,” but it was still a very manageable lifestyle for me. My job was an at-home desk job. (Thankfully, it still is.) I could go out and do things for a few hours a day and be alright as long as I took it easy for the rest of the day. I could have an actual workout on my Wii Fit Plus for 30-45 minutes and still get back to work without incident afterward.
But May 7, 2013 changed everything. It was my mom’s birthday. It was the day after a local women’s business networking event at which I thought I made some good connections. But I never had the energy to follow up on those connections because that was the day I entered the world of living with chronic pain. It was crippling for a while, and between the pain and the weakness in my limbs, I had to adopt an affectation for walking with a cane.
Thankfully, I got the pain under control. Still don’t know what caused it, but soaking in an Epsom salt bath every night keeps the worst of the pain at bay. I don’t need to walk with a cane anymore, although I do use it for travel and events where I may need to claim limited seating.
But my energy levels and my muscle weakness are still extremely limiting.
Last week, trying to do a load of laundry broke me. It broke my body first, and then it broke my mind. I made the critical mistake of sorting laundry off the bathroom floor and throwing said laundry into the washing machine on the same day. I didn’t even try to carry the heavy bag down the stairs; I had my big, strong 9-year-old carry it for me. But damn it if my legs weren’t shaking before I even made it to the laundry room. I had to hold onto the washing machine with one hand to stay standing, which made things rather inefficient. Then I had to sit in the nearest chair to rest before I could even try to make it back upstairs. And to accomplish that, I did have to ask Tom to get my cane for me. He offered to support me, but I needed the cane because it wouldn’t bend no matter how hard I leaned on it.
And when I got upstairs, I cried.
Five minutes of anything that gets my heart rate elevated to the level of aerobic exercise – and that doesn’t take much, with CFS – is my limit on any given day. Ten minutes, like that load of laundry, flattens me. It had been early enough in the afternoon that I was able to stick to eight hours of bed rest before I had to move again. And after eight hours of sitting in bed, propped up on pillows, legs elevated…I couldn’t even walk a dozen steps to the bathroom without holding onto furniture the whole way.
All this, and I’ve been back on my supplement regimen for over a week. I should have been improving.
I got really depressed about this for several days.
I am never getting back to the “normal” I had two years ago. There has been too much disease progression. I may need to remain on a modified bed rest schedule for the rest of my life.
So I have to change my state of mind.
I may not ever get back to doing 30 minutes of aerobic exercise on my Wii Fit Plus, but I can continue my stretching routine I’ve been doing in the bath tub – where the hot water and magnesium sulfate help my muscles recover as soon as I sink back into the water.
I may not ever be able to do marathon laundry sessions where I wash, dry, and fold three loads a day, but here is my defining goal for my new normal:
I want to get to a place where I can do a single load of laundry – from start to finish – in one day. I’m sure I’ll have to take breaks between each stage of the laundry cycle. Sort, wait an hour. Throw everything in the washing machine, wait an hour. Put the laundry in the dryer, wait two hours. Or more. The folding is a lot harder on my body. It hurts my back, no matter if I stand or sit. I may only be able to fold for five minutes at a time, and it may take me an entire day with all the resting in between all of the steps, but damn it, I want to be able to finish one load of laundry in a day without killing myself.
I hope that’s not too much to ask. [Update: It was too much to ask. I can no longer perform any household chores.]
Read my Big Fat Medical Update for more details.
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
