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.
I’m happy to read anything you write, no matter how mundane you think it is. I think what you don’t realise is that you do have a fighting spirit. Your insane amount of research, your desire to be the person that does all those things that you talk about, your concern for others when you are going through something so horrible, are all proof of this.
Thank you so much, Anna. That means more than you know. I’ve come to a place where I think the insane amount of research has left me exhausted, confused and in a deep quicksand of indecision. I have no idea what I should try next. I’m ready to start experimenting, but I don’t know where to start. I feel like I have to start over. Love you. 🙂
I’m happy to read everything you share as well. …Though I can definitely relate to the struggles with finding new things to say besides “I did stuff today!” followed by “I should not have done stuff yesterday” followed by “I resolve not to do that much stuff ever again” followed by “I did stuff today! Surely this time it will be fine!” …Or maybe that’s just me. It’s a good thing I’m not a puppy. I’m apparently terribly untrainable.
Hang in there, and be gentle with yourself. I think everybody seems a lot less strong on high symptom days.
Once again, Curiosity, you made me snort out loud. Thank you. I’m tempted to go to the dog park and run flat-out for an hour (okay, I couldn’t do that before getting sick, so who am I kidding) just to see what happens. Or eat a very big bowl of pasta with lots of dairy in the sauce… Or… something. Anything but this sameness month after month. Maddening.
You hang in there, too. 🙂
You are nit the only one who feels like this! And you are brave and strong just for making through each day. The blot is great! It does not have to be entertaining or fun all the time. Just do what you have been doing. The truthfulness you express about your symptoms and feelings is what I feel too! I know there are plenty of others who feel the same way. I’m glad people can be really happy and chipped and seem to always be in a good mood despite this awful illness…but let’s me real here…. and honest. It plain sucks…it sucks!it sucks! it sucks! Sure we can find things to be grateful for and new hobbies. Maybe those people have more help. I live alone and today was one of those days I felt like I was dying..breathing takes too much energy today. The more I try to fight this illness the more it fights back… I do get sad and frustrated and depressed… it is not easy to live this way. I cant afford to go to more doctors. I’m living in survival mode… I cant afford to cook healthy meals everyday. I cant manage the energy to even eat most the day until late afternoon. Everything is tough and I happen to have a family who doesn’t understand or care. Ive got 2 good friends who live close. One has fibromyalgia and CFS also..and the other friends mother had CFS so they understand. And I have 2 more who at least put effort into understanding..research a little on their own… my family..except my sister..has zero respect for me. Talks bad about me not visiting enough or being with them more. And this past weekend was one of those times…and all I could do was try hard not to cry…and my feelings are hurt but I’m also angry.. if they really want to spend tine with me so badbthen they need to drive the 20 minutes TO MY Apartments.. this date today marks 5 years of having to leave my job due to this illlness.
Stacie, “it sucks! it sucks! it sucks!” actually made me feel better. That’s kind of what I want to do: scream at the top of my lungs and get stressed out and bang my hands off the ground… I live everyday trying to be careful, trying to be quiet, trying not to be stressed, TRYING TO MAKE THE BEST OF MY NEW LIFE AND BE GRATEFUL FOR WHAT I DO HAVE… That’s all well and good, but GGRRRR!
Regarding your situation, I wish I could say anything to help… I could not handle this alone. I would disintegrate if my family didn’t support me. This is what haunts me the most: how many people with ME/CFS have no money, no help, no support ~even no home, no internet? I am thinking of you and sending healing thoughts. You have us. I can’t help you cook, but I can hear your rants and relate. 🙂
I still find myself in tears sometimes at the struggles I still face (even though they now have much less of a day-to-day impact) and how I have to plan my energy expenditure so as to avoid any major crashes.
Here’s to more good days, better good days, less-worse bad days and fewer of them!
Even when you’re writing about how bad things can get, I can still see the positive, energetic you trying to break out from under the weight. Hang in there, look at that little poochy face and smile (and if that fails, imagine a T-Rex making a bed… a recent facebook meme that really made me chuckle).
Brilliant… thank you, Tricia Ruth, it’s the little things.
I live vicariously through you often ~ horses, pilates, dancing. It gives me hope for the future.
I’m happy to read anything you write as well. It might take me a few days to get there sometimes but I always get there. But you’re right, this disease does fucking suck. And what is it with dogs who decide that because you LOOK like you aren’t busy you are in the mood to let them in and out all day? My dog loves that!
Ditto! I read everything you write, although I may not have the energy to reply. I especially liked your most recent post “The Miracle Question” because your answer was pretty much exactly what my answer would be. Thanks for being there, half a world away. 🙂
I’m new to this blog, but if this is what all your posts are like, I will keep reading! 🙂
Thanks, Rachel! What a lovely compliment. 🙂
[…] may never be as strong as I was, but, like I said almost a year and a half ago, I am grateful for every moment that I feel like the fierce warrior I thought I was… That I think […]