I'll start back, yet again, with my surgery last winter. I had been noticing a cognitive decline and other neurologic issues no one could explain, not even two well thought of neurologists who declared me neurologically intact as far as physical exam and MRI could determine (they never did any cognition testing at all, not one thing) for quite some time, probably for up to about 8 years. Finally in the fall, my GP realized I had a huge and exponentially growing benign tumor in my neck that just happened to be pressing on my carotid artery, and that was successfully removed in a complex but brief outpatient surgery. The tumor, though, had a lot of adhesions to the brachial complex (nerve core for the arm) and soft tissue of the shoulder, so the surgeon had to do a lot of careful work since while benign this is the kind of growth that will return if any tissue is left behind. So not long after that, I found I needed to have rotator cuff surgery; at times, the pain in my shoulder was equal to that of labor (and I've had 6 kids, I know whereof I speak). Again, it was the simple kind of surgery; I had a lot of inflammation so the bone had to be cut down, but there were no tears of any soft tissue, just all the inflammation reaction from the first surgery. Following that there were months of physical therapy. Meanwhile I had another simple surgical procedure (this one you don't want the details, trust me). Unfortunately, that one ALSO resulted in damage and inflammation in an organ which already had scar tissue attaching it to the surgical area. Fast forward, yada, yada, yada, my shoulder started getting worse and not better, return to the orthopedist, the inflammation is now affecting not the rotator cuff but the A/C joint, the next area over. Yet another cortisone injection in a new spot, and recommendations to see if the pain is better in another week.
Meanwhile, since childhood, I've been affected by crippling clinical depression. I'd say on a 1-10 depression scale, I've reached 9 at times. Right now I'm probably hovering around 6-7 with occasional 8 moments (9 to me is I'm sitting in my room in the dark sobbing or hiding under blankets, hoping the world itself just goes away, unable to face reality and responsibility despite being in my late 40's with real life responsibilities).
So here I am. Pain levels around 6-7. Depression levels around 6-7. Incidentally both are related to inflammatory processes in the body according to the most recent research, and pain is well-proven to exacerbate depression just as depression worsens pain.
Did I mention I have six children? At least three of whom (it's complicated what you define as a diagnosis) have serious medical or developmental disabilities themselves? Two of whom are elementary school aged and need direct care and interaction and such? That my husband works full time with a lot of out-of-hours calls and 24 hour on call status every day of the week except our Sabbath?
Now it's the end of the Nine Days and Three Weeks, a period of mourning on the Jewish calendar. The Nine Days is meant to be intensive mourning. This hasn't affected me directly too badly, but it has been particularly difficult for the children. One thing I had been able to do despite my own limitations was to take them to the pool. That's forbidden during the Nine Days, though. No movies, even though I did manage to take them to one a few weeks ago and had congratulated myself on feeling relatively comfortable about it and ready to do that again (for some reason going to the movies is an anxiety trigger for me often). Naturally, after a cool and wet early summer, this week the thermometer topped 90F every single day…so no nature walks, no berry picking expeditions, those things I generally am comfortable with.
In addition, my shoulder pain is made worse by driving. This has meant we're not even running errands to limit the monotony.
It's been so hard for the children, I know it is. They see my depression, they see my pain; I do my best to limit the effect on them, but there's only so much I can do. And all they can do is laze about. I know that's not the worst thing in the world for children, to be living in a safe suburban home and told that for one week they're just going to have to hang out, play video games, amuse themselves.
It hurst, it pains me though that the reason they're told this is all there is for them for the week is that their mother isn't who she is supposed to be, who she used to be, who she has managed sometimes to be. She's truly less than that right now. I shouldn't be, I don't want to be, I hate being this way. I am this way now though, pained, depressed, limited, disabled, locked away from them in so many ways. I'm fighting as much as I can. It's not enough yet.
After consultation with one of my doctors, I've found one therapy. In about two and a half weeks I'm going away for a meditative solo retreat. Nothing formal, I've just booked a room on a working farm about an hour and a half away (hopefully not too long a drive for my shoulder--I've had to drive longer recently, it was very painful, but it was physically possible), where there's nothing and everything to do. I can spend my time literally doing nothing but meditating and wandering the farm and environs. I'll bring books, crafts, and so on to see if I'm up to those. There are things within easy driving distance if I choose to wander farther: a cider house which makes hard cider from their own orchards; a renown fiber arts shop which is closing at the end of the calendar year to which I might as well make a pilgrimage, Gettysburg VA with all its history. I suspect I won't take advantage of much of that though. What this means for the family though is that for that whole period of time they don't even have access to the partial me that has been here--the entire burden of care is on my husband, who already has too much on his shoulders and naturally can't possibly carry it all himself.
One of the things which is weighing on me the most is the loss of art. Knitting for many years has been my most therapeutic tool. I've published patterns, I've knit from others' patterns, I've just knit. There are times when I knit so compulsively I finish pairs of full adult socks in 4 days (for most people that would take anywhere from 1-6 weeks). When I wasn't knitting, I was spinning yarn.
All of that has been taken away from me for the last eight months. This scarf I began last October, about a week before my first surgery. Since then I have completed two rows--one row was enough to discover how painful knitting is to my shoulder; the second row I just had to complete to be comfortable setting the piece down and being able to pick it back up at a future date.
This is where my spinning has sat for months since I tried it again.
I've tried substitutes. I've been working with chain maille and beading. I love the art forms and I'm grateful I've started to learn them, but even the work with these leads to ice and wishes that prescription pain killers made the shoulder pain go away rather than just making me tired and loopy.
I'm going to try adult coloring, which is a big thing, if I can tack down the paper so I don't have to brace it with my bad arm. I'm searching for other creative arts to sample that might work. I yearn for something to fix it all. To make my shoulder recover, my neural synapses to take up their hormones properly. To fix my family for my husband and children's sake much more than my own.