I have had a remarkably good four days, but my mother thought I was having a not-so-good week because my blog had mentioned how stiff and achy I was. So, to clarify for the readers and for myself when I look back at this post months from now: “good” means the exhaustion, discomfort and pain are bearable – are livable-with. It’s not what I used to be pre-ME, but it’s doable. Billions of people live joyful, fulfilling lives with these issues.
My baseline at the moment is constant fatigue, muscle aches and stiffness, the latter being worst in the morning. I always have pain – mostly in my neck and lower back, the bottom of my spine, and the back of my hips – that whole “hinge” area. I always feel like I have a slight cold. Often this feels like full-blown flu, but, on good days, just a wee head cold without a cough.
Good means I’m not too crippled to move by muscle pain or viral chills or the thickness of inflamed fever. I’m not rendered a squinting, grimacing statue from noise and light intensifying a skull-cracking headache. Good means I can stand up and stoop over, I can talk and interact – not long and not too heartily, but with minimal effort for short periods of time. Good means I feel stronger. This, I’ve discovered, is vital. Not stronger as in muscle strength – it’s shocking how physically weak I’ve become – but stronger in that I could and can handle things better. Just a slight increase in my overall fortitude – as if I could lose sleep and be okay… Or make a meal or have an argument or deal with a (small) emergency and be okay.
It’s a small shift, but it’s freeing because it gives me confidence and hope. It’s the first step towards laughing with gusto, animatedly talking to more than one person at a time, playing with nieces and nephews, hiking, running, dancing, singing… Good means, in this moment, overall I feel happy.
Rag and Bone Shop of the Heart 
Great post. I often feel funny agreeing I feel “better” on a good day because even if I feel better than I have compared to a day, week or month earlier, I don’t feel “better” in the way that people do when they’ve gotten over a flu or something similar. My mum commented today that she get’s frustrated with people asking her if I’m “better yet” – so it’s nice to know she kind of gets it.
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My Mum gets it, too, for the most part ~ probably more than anyone in my life. She let’s me moan about every physical symptom and every emotional upheaval and reads everything I email to her. Just knowing that someone cares enough to research and be angry for you makes it a little easier to bear, doesn’t it?
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I can totally relate. When people I haven’t talked to in a year check in on me, they always ask me how I’m doing. And compared to a year ago, I’m doing WAY better. But if I tell them that, they tend to assume that I’m back to having a more normal life. I’ve learned to quickly follow-up with “still bed ridden, but…”
It’s tough to get across to people that our very best days now are still much worse than the lowest we ever felt when we were healthy. …And then to also somehow explain why they’re cause for celebration anyway.
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Oh, you are an inspiration. No wonder you keep preaching do less to me. You have mastered the art of patience, it seems. I want to get you out of bed! But, yes, I don’t think anyone will understand unless they experience it. “Better” could be everything exactly the same except you can breathe a little better or move your eyes easier or talk a little more ~ something that isn’t noticed by an outside eye because you may still be lying where you were yesterday.
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I totally relate. ‘How are you feeling’, ‘are you feeling better’ are such loaded questions. It’s all relative, better for me can be the pain in my neck has eased slightly or that I was able to type for 10mins instead of only 5. It’s all relative. That’s what a lot of people don’t get I think. Great post 🙂
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Yes, you start to feel very grateful for these minuscule changes. “Oh, I’m not dizzy, thank you thank you…” Here’s hoping that, if we can’t improve in leaps and bounds, we can make daily positive tiny steps forward. 🙂
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[…] March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now. April: Got teeth cleaned; started seeing wonderful physical […]
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