Technically ALS symptoms are pain-free. Frustrating and scary. But pain-free. Technically.
Have I mentioned that my balance and stability are not great right now? Because of the symptoms of paralysis in my legs, I feel pretty wobbly and I’m more likely to fall… Like I did seven weeks ago, after being pushed by a six-year-old (I don’t want to talk about the damage to my ego but… a six-year-old! Sigh.) I fell backwards, landed on my butt and then hit my head on the ground. Ouch. Also, keep in mind that I have very little body fat and atrophied muscles that don’t hold my bony structures together as well as they used to.
So, I’ve been in (varying amounts of) pain ever since. Seven weeks.
The worst part at first was my neck and shoulder area. And my osteopath took care of that. I was left with pain in my right SI joint (sacroiliac joint, at the back of the pelvis between the hipbone and the sacrum). And my osteopath did a great job on that as well, but then I sat in a plane for eight hours flying to Montreal and that made everything worse again. Plus, I’ve had a few almost-falls here, so… it’s been difficult. My pelvis feels totally crooked and the pain has been bouncing back and forth between the right and left SI joints. SI joint pain really sucks because the sciatic nerve is in that area as well, so sometimes I get these excruciating neural pains. And when your pelvis is out of alignment, your spine is probably out of alignment, too. And I haven’t been sleeping all that great because I wake up from pain every time I move.
Don’t get me wrong, I’m not screaming in pain all the time. It does get a little better sometimes but I haven’t been completely pain-free in… well, seven weeks.
Pain. Totally sucks. Can really wear a person down. Especially when there’s something else going on as well. I thought (and said) several times in the last couple of weeks: “Paralysis or pain, I can handle one of the two, not both.” But I can, of course. I’m still here, still coping, maybe a little angrier (see previous post…), but overall still positive and optimistic. And quite fascinated by this pain experience. How do I deal with pain?
First, I look to movement. One of my favorite sayings is: “Movement is the answer.” But in this case, it’s not. I tried taking a few yoga classes… wow, was that a bad idea! I tried everything my Pilates mind could come up with, pelvic clock, stretching, massaging… It all just made things worse. Which was disturbing on so many levels.
Then, of course, there’s painkillers. And yes, I took some, go ahead and judge. I just couldn’t handle it anymore. But I’m not a fan of painkillers because they may take the pain away for a while but they don’t really solve the problem, do they?
If I was in Berlin, I’d go for bodywork (osteopathy, acupuncture, craniosacral therapy…) before painkillers, obviously. Specifically, I’d go see my osteopath (obviously). The flip side of having such a great and trusted osteopath is that… well, I tend to think that he’s the only one who can help me. Which is a problem when I’m on vacation. But I’ve recently had a bad experience with a different bodyworker on this SI joint issue, so I really want to be careful. Plus, there was no immediate opportunity for bodywork around here.
Finally, there is spiritual healing and the theory that everyone has the power to heal themselves because all pain and disease is related to emotional issues. I wish! I think emotional work is a very important part of the healing process but to rely solely on that is oversimplifying. It doesn’t do justice to the complex process of pain or disease. A while ago someone suggested to me that bodywork is pretty much the same as painkillers: it may take the pain away but it doesn’t solve the problem because you never address the underlying emotional issues that lead to pain. I disagree. While I definitely have emotional issues, I think in this case it’s quite clear that I’m in pain because I fell. But anyway, I had the opportunity here to work on myself using Reiki, breath and meditation, so I did. It was wonderful and relaxing and inspiring and gave me a lot of clarity but didn’t have any effect on the pain. I guess, it doesn’t work like that but it was still in disappointing. Especially because in that context I often hear stories of people who were able to release their pain because “they were ready”. Does this mean I’m not ready? I feel pretty ready. At least ready to not be in pain anymore. I don’t know. I think being “not ready” is a pretty horrible thing to suggest to someone who is in pain or dealing with a serious health crisis.
Anyway, I’m back in Berlin now, the osteopath appointments are booked and I hope to be pain-free by Christmas. That’s all I want for Christmas, by the way, the ALS symptoms I can deal with later.

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  1. I got an MRI to make sure I didn’t fracture my sacrum. I didn’t. That’s the good news. But I have bone bruises on both iliums (ilia?) right next to the SI joints. That explains the pain. Unfortunately there’s not much you can do about bone bruises, you just have to wait and allow them to heal. Which can take several months. So, pain-free by Christmas seems unlikely… But here’s hoping!

  2. As someone who has had spinal surgery and has disk disease, I understand the frightening and humbling impact chronic pain can has. I think it’s fascinating and brave and useful to see you writing about pain and what you are experiencing. There are many who can find parallels with your experience, even if they do not have the same condition, and it helps end the often absurd silence we have about pain, about writing about illness, conditions or disability. More power to you, Anje, for reminding us we aren’t alone.


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