I’m having a hard time writing lately because I think it must be really tedious for the audience to hear the same old things over and over. The one consistent thing about ME is its inconsistency. Do I really want to write about how hard it is one day and then how hopeful I am the next? I wouldn’t want to read a blog without any substance, info, insights… I’m beginning to wonder how people continue blogs for years. I guess that’s why writers start traditions like Gluten-Free Fridays and Movie Mondays ~ to keep readers’ interest, you need some other pearls of wisdom to augment the I managed to do laundry! and the I couldn’t get out of bed again posts.
But, this blog is also a way to track my symptoms for myself. I’ve gone back to read past posts numerous times to see how I was feeling, what my “voice” was like at a certain time. So, I apologise if this is less entertaining than many blogs out there and more a personal ticker tape of weekly mundanity. Or, indeed, simply a big downer. I keep reading other ME/CFS blogs that are positive and encouraging, strewn with great tips and witty anecdotes and I’m not sure how they do it. Even bedbound patients bare their souls so beautifully and manage, from the simplicity of their four walls, to make the most profound observations. My current observation is: this disease fucking sucks.
My mood is pretty good right now, though, and I’m much more hopeful than I’ve been since last summer. I’ve had three good days in a row. I’ve walked between 2,000 and 2,450 steps each of these days, which is unheard of. When I feel better, I motor around the house without even realising it. I go up and down stairs just to get an envelope rather than waiting until my husband gets home to help. I stand up (looking kind of like a pregnant lady, pushing myself up with the arm rests, jutting out different body parts to help hoist the weight of the rest of me upright) to let the dog out 17 times in one hour rather than ignoring him half the time (because he only wants to come back in again. Because it’s raining and cold. But there might be squirrels now. Oh, it’s cold. But there might be squirrels now. Are you doing anything fun inside? There might be squirrels now. Et cetera).
My spine and neck and lower back are not screaming too badly. My head doesn’t hurt (comparatively). I don’t feel flu-ish(ish). My sleep is still awful and I’m working towards going to bed at 8:30pm to try to get one more hour before the inevitable 7am wake up… Always the pleading with the universe for just One. More. Hour. All in all, though, today I think once again, I can kick this. I will be one of the few.
But, last Saturday I was weeping on the couch, unable to do anything but ask my husband how I can go on. How do people do this? Why don’t I have a fighting spirit? I thought I was strong, I thought I could handle anything, I am the rock… But I can’t do this. Why am I the only one in the world with a chronic illness who isn’t brave enough to continue? When the symptoms are bad, I dissolve. My happy, energetic, sarcastic self disappears behind a shroud of bleakness. I never would have predicted that I would respond this way. I would have said that I have a high pain tolerance, high stress tolerance, emotional fortitude, and an insatiable desire to live life to its fullest. I would have said that I could weather whatever comes, fight tirelessly, and come out triumphantly wiser on the other end. After all, whatever I set my mind to, I accomplish ~ and accomplish well. I thought.
Sunday ~ the next day ~ was probably the worst day this year. There was no weeping because I was in too much pain. There was no wondering aloud why I couldn’t maintain positivity because I couldn’t move. My brain activity had retreated to survival mode: breathe, this moment, tomorrow’s a new beginning…
And it was. Monday was the first of my good days. From the worst to the best. Immediately, I thought, Oh, maybe I won’t have to tackle disability. Maybe I won’t need to beg the bank to reduce our mortgage payment. Maybe I can get a job and shake off the dust of this two-bit existence.
And so it continues. I will try not to depress you with my reality, but I will also not sugarcoat it. Today I’m in fighting shape ~ mentally, if not physically. I am not cut out for this life. I am meant to be standing on top of a barstool singing at the top of my lungs. I am meant to be racing up and down flights of stairs with my nieces and nephews looking for treasure hunt clues. I am meant to be gorging myself on decadent meals during long, chatty evenings with friends. I am meant to be working in a job I love, making a difference in the world. I am meant to be walking the streets of Dublin for hours and dancing on the beach with my dogs and falling apart with laughter with my siblings for one precious week each year.
I am grateful for every moment that I feel like the fierce warrior I thought I was… That I think I am… That I will be again.