Why are so many of the other chronic pain/health challenges blogs I read so happy and positive all the time? It’s highly suspect. I cannot believe those people wake up every morning full of gratitude and spiritual peace. Those things are hard to find and harder to keep, even under the best of circumstances, and I challenge anyone to find me a person capable of doing a perfect job of it every hour of every day.
The last thing the internet needs is more I-can-make-the-world-a-better-place-just-by-saying-so fantasizing. I’m not interested in greeting-card platitudes with pictures of sunsets and flowers and fairies and angels. An ability to find some true spiritual peace is the prize you get for making it across the river. But if that’s all you have to offer, you’re just gloating and I really couldn’t care less. Screw the medal and plaque. I want to know how you got through all that water.
I need to know how to get through it. As much as I pillory the spirituality of those able to employ their faith to help them resolve their difficulties, a thread of jealousy runs through my anger. I don’t want to start every day in this resentful place. I hear people tell me they meditate first thing in the morning. In principle, I’m not against adding a morning session to my daily complement, but in the mornings, I get out of bed because I have to, not because I want to, because the pain and soreness insist that I address them, rested or not. If I was comfortable enough lying down to meditate for five or ten minutes, I’d just as soon go back to sleep.
Pain is quite the unfriendly alarm clock. It doesn’t have a snooze button. It jangles you awake whether or not you’ve slept enough, whether or not you have anywhere to be, and whether or not you think you have the energy to embark upon your morning routine. There is no way to turn it off. It either fades out on its own after an hour or so, or keeps pulling at you throughout the day, like gum stuck on the bottom of your shoe that won’t wear off.
If I’m well-rested, it’s generally OK, and once I’ve had some tea and a hot shower, my internal machine comes online and I can adjust my mood accordingly. But if not, then I have to go through the now tiresome rigamarole of examining my activities for the next few days to see what I can cancel, in order to be able to do what’s necessary in the early part of the day, and arrange to go to bed around 7:30 or so to ensure I can make up the sleep deficit. A sour feeling brought on by being so relentlessly unreliable will assert itself in my stomach, upsetting me and putting me off of food, and I will stand here at my laptop and drink tea, isolating, wallowing, resenting, and not feeling spiritual, peaceful, or useful in any way.
And no doubt, none of this is novel any more, not to me, and not to anyone reading this blog. My reluctance to make plans, and my ability to call up the wherewithal to cancel them, is now built-in. There are rare and fleeting throwbacks to my old self, magical days where I am able to sleep in, my shoulder pain stays at a low hum, and can go about my day in something like normalcy. But generally, I display the halting, apologetic persona that is now my default program. Occasionally I am able to make – and keep – a plan to see a friend, but it’s vanishingly rare, and my friends, perhaps out of respect for my poor state of health, or to spare me the knowledge of what I’m missing, have stopped asking me to do things with them.
Without my realizing it, I’ve become rooted here, in a dark, unkempt corner of the garden, a corner that people rarely even notice, never mind visit. Here I am shielded from the hot sun and harsh winds to which I’m so vulnerable, but at the expense of being allowed to flourish. Instead, I console myself with the small animals that take refuge with me, and try not to pay too much attention to the more popular flowers greedily drinking in the afternoon sun.
I know I’m getting better. Little by little, I’m getting stronger. Even as the nerve grows back, the pain seems less insistent than it did before. It’s easier to hold my back straight, open a door, move a gallon of milk from the shopping cart to the back seat of my car. I’ve gained some weight – not enough, but noticeable – and people are telling me I look better overall. I don’t mean to belittle any of these things; they are welcome, and important.
But I suspect that I’m better largely because of the concessions I’ve had to make; limiting my activities, canceling plans whenever I start to get even a little bit sore or run down, arranging to get at least nine hours of
sleep rest as many nights as I can, leaving gaping swaths of unstructured time in my days so I can rest. It’s a way of being that I’m reluctant to get comfortable with, and am frightened I will not be able to justify, to myself or anyone else. What if I have to stay this way in order to stay well? What if I can never get back to full capacity? How will I support myself? How will I stave off the loneliness that muscles in as soon as I pull out my phone and start disengaging from commitments?
I don’t mind being here too much right now, as moody as I must seem to those following this blog. (Maybe I should write a post about a good day; they do sometimes happen.) But it’s hard to keep from forecasting a gloomy future when I’m stiff, sore, and underslept. Friends try to reassure me; they jump on my sentences before they are out of my mouth, peeling the wrappers off of bandaids before I can finish explaining where it hurts. I am grateful for their enduring solicitude, but it’s not what I’m asking for.
I am well off the beaten path now, and suggesting that there’s no point in thinking this way or that I don’t know what’s going to happen a year from now is a mere repetition of the obvious that has long since been carved into the surrounding trees. I know. I know I don’t know. Please just stop with the rubbing alcohol and let me finish.
It doesn’t matter that it’s obvious. It matters that it’s how I feel, and that it’s more than justified. I need my friends to sympathize instead of trying to talk me out of it. This is where I’m planted, at the moment, stunted, unable to fill out into any more space, possibly forever. I’m not saying these things because I want placation. I’m saying them because I just need to say them out loud, pull them out of this dank corner and force them into the light, make them smaller, lighter, dust bunnies instead of monsters under my bed.
And then, I need someone to take me out into the sun with her to play, even if I can’t stay very long or do very much. The shade is gray and stifling. I do want to be able to grow again. I’m scared; anyone would be scared. I’m still fragile, still barely held together. Hold me; warm me. Stay with me.
Omg that made me want to cry. You know I have and still feel all of that and the positive stuff is a way of coping sometimes it doesn’t always work and is blighted by pain depending on what day it is. I feel all the same things, it’s scarily similar but I have no quick answers because it’s complicated isn’t it? It is gojng to take time and we don’t know the answer at the end. I don’t. I’m glad you are feeling a bit better and only wish I lived near and we could have those small moments of sunshine together. A lot of my friends have gone and my restrictions are boring to others I am sure and wish I knew others nearby me who are in similar boats who can be patient and understand. Keep on talking. I have found meditation does help. I can’t sit but I can lie down. So for me it helps a bit. Just a bit and I snatch at any bits to be honest. I’m trying acupuncture as I can get it free. They want to send me to a pain clinic for three weeks. End of the line stuff as far as treatments go! What a life hey? Hugs to you xx
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I’m here and always will be. Wish I lived closer or could drive out there myself.
Keep writing even though these posts are hard for me to read. Hard mostly because you are the writer but a lot because you reveal my experience in such searing detail. But I guess I am lucky that I was not a musician, so I have no guitar to miss and no singing gigs to give up. I did not have a busy social life though I did have to turn down most invitations and still do. And there was no injury to fix. The pain was everywhere by the time a diagnosis was made so there was no PT and no one knew what the future held. And I had a life partner who came home every night and could do the heavy lifting tasks, could buy the groceries and go to the drug store. There was somebody with me every weekend. I was lucky.
That I would not get better was never my reality. Though doctors told me that mine was a life long condition, I thought that I might have a few limitations but nothing life altering and certainly there would be an end. I was very healthy, active, did yoga daily, took two mile walks, and had a weekly strengthening regimen. No, I was different. I was not going down the Fibro road.
To this day, well over 20 years after the diagnosis and even after one of the most painful years of my life, I still know that I will get better. I am lucky …. or crazy. I choose lucky.
I want you to be lucky.
I am here.