Forgive me if this is boring. This blog has become a place where I work things out in my mind about my Brain Avm journey…those who are interested are welcome to read, and those that aren’t are welcome to skip this entry (as they are any entry that doesn’t doesn’t interest them, of course.)

Image Description: Drawing of a young woman with long brown hair, wearing a purple dress. She has her hand on her back. Thunder bolts drawn around her back indicate that she’s experiencing back pain. 

Content Note: Brain AVM, stroke, neurological symptoms, pain, fall, fear about future

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I’ve written before about how I’m privileged in a number of ways as a brain AVM and stroke survivor. Part of that privilege is that I didn’t experience any lasting Pain after my brain AVM surgery – I learned a bit about how privileged I actually was about pain late last year after some troubles with my teeth. It’s come up for me again, along with the realization that I may not be as evolved in my beliefs about disability as I thought I was.

That’s very uncomfortable – physically and mentally.

Back, Hip and Leg Pain

I started having pains in my hips after Christmas, but I could power through it, so I didn’t think of it much of it besides wondering if I was maybe getting some arthritis – I was told after my stroke that this could possibly happen someday. But then, in March, I got a stomach bug and was laid up for a few days, and during that time the pain intensified.  For about a month I’ve been dealing with intense back pain, leg pain and weakness, and general unsteadiness. I was lucky to get into physiotherapy at my local hospital fairly quickly, especially given that the leg weakness became a safety concern – I was literally falling down – and with weekly sessions and pain medication I’m keeping whatever this is at bay (I’ll know more after an MRI in May.)

The whole thing has made me think about what I’ll do if I become unable to take care of myself (whether it’s because of this or something else.) Because for the first few days after my first physiotherapy appointment,  the pain was brutal (and, as I’ve written elsewhere, my pain tolerance is pretty high), and I felt like I had no choice but to plan for what I was going to do if this state of affairs became permanent. It was the most seriously I’ve thought along those lines since learning I had a brain AVM.

My father is happy to help out with rides and bringing me things when I’m sick when he can, but he’s getting older and has his own health to think about. My sister would help me as much as she could if I needed her, but she’s two hours away with three young children. I really can’t afford to move and give up my low-rent apartment.

I started to think, “What will I do when I’m really on my own and need help?  How will I handle my life?” I’d encourage lots of other people to give thought to those questions, but hadn’t really thought about them myself.

Big Questions…

Now, the nice thing about spending most of your life in a very small town is that you’re never really on your own. In fact, it was a friend that went to church with my family, that I’ve only recently started talking with again because we’ve both ended up on a committee together, who, after she heard how much trouble I was having, made a phone call to the home support services agency that works out of the local hospital, and got me a referral.  I may have used them briefly for my first few visits home after my brain AVM surgery, but that was such a long time ago – I haven’t thought since about using their services.

Well, they interviewed me about what was going on, and moved quickly. A worker now visit me for 15 minutes three times a week to do a safety check (in case I’ve fallen and hurt myself) and see if there are any chores that they can help me with – taking out my garbage, sweeping up, changing my bed, making sure everything is ready for me in the morning, when I’m in the most pain but have to get ready for work. I don’t think I’ll need the support over the long term, but this small bit of help (with more available to me should I need it, and for more things, like simple meal prep, laundry, errands, and staying in the apartment while I have a shower to be sure I’m safe) makes a tremendous difference. They don’t help with stuff for the cats,  like keeping kitty litter tidy, but the woman that looks after the cats when I’m away is helping me with that.

My fear of what I’d do if this setback became my new normal has abated for now, especially since the pain is becoming easier to deal with and that I’ve been reminded that there are supports that I could call on – both natural and structured.

Not As Far Along in my Brain AVM Journey and Disability Thinking As I’d Like

I’m really more concerned now about how I’ve reacted to especially the reduced mobility these back and leg issues have caused.  Before physio and adequate pain meds (prescription strength Naproxen for the day and a muscle relaxer before bed), pain and unsteadiness together made even a small amount of walking difficult, chores almost impossible, and days in general just exhausting. It takes me back to the days after the stroke after the brain AVM surgery, when walking was so slow and awkward. It’s not pleasant.

Two days after my first physio appointment, despite being in the worst pain I’d experienced since this all started, I tried to do my customary walk from my office to the town centre to run some errands. It was a mild, sunny day, and I was determined to keep moving. Less than a quarter of the way to town, I stopped and called a cab. I couldn’t go any further.

I cried in the cab all the way home. Because I hurt, but also because, as I told the driver, “I don’t want to not be able to walk!”

I thought I was fine with being disabled.  Scratch that – I am fine with being disabled. I really am. I’m fine with walking with a cane, with having a hand that doesn’t work very well. That aspect of my brain AVM journey doesn’t bother me.

What I’m not fine with, apparently, is having to become less independent when I’ve worked so hard to build a life as a disabled person where I still live on my own, manage my own life, work, get around reasonably on my own (with the help of a lot of generous people) given that I don’t drive and there’s no public transportation in the area, to the point where it’s very difficult to back off from the compulsion to be “that person” even just a bit.

I’ve always had trouble asking people for help, and even more trouble accepting it, but I’ve been surprised at how especially resistant I’ve been to both this time around. I’m constantly reminding myself that it’s okay to ask for help with things that help keep my pain level from getting too high and that help me from getting too tired, even if that means living less independently, until I’m feeling better.

Or, if it turns out that this pain becomes something that I always struggle with, that it’s okay to ask for help, period.

I remember writing about this “not asking for help” business a long, long time ago – years before I started this blog. I thought I was over this…silliness.

I thought I’d be okay if something happened and my disabilities suddenly made me more dependent on others for the continued assurance of my well-being.

But maybe I wouldn’t be…or at least not as okay as I’ve believed I’d be, not at first, anyway… and this makes me really disappointed in myself.

Obviously I have more work to do on this.

More Information About Back Pain

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