I have to come clean about one of the troubles that caused my lengthy mental vacation a few days ago. Because I was under so much duress, pain, and fatigue from physical therapy, I ended up quitting, which felt like a combined defeat and deliverance.
I restarted Physical Therapy on the last week of January this year. It was a familiar place, since I had been in PT for about six weeks at the same place with the same therapist around the same time last year. I ended up quitting that time because I got infections in my legs and felt so sick and was hospitalized…it was too hard for me to keep going, ultimately.
But this time, a different doctor had ordered the PT. Specifically she wanted to work on pain before any exercise took place. I have knots in the trigger points of just about any muscle group you can think of, especially around my neck and shoulders, my core area, my lower back, and my legs. That probably explains why I hurt a lot, and (at least to some extent) why I get so tired when I move around.
So Mike’s job was to defuse these little bombs all over me. Since my skin is so tender everywhere, massaging away the trigger points was misery for him; none of the standard methods worked because if he used them, I left the place in more pain than I came in with. So Mike put me on moist heat and a TENS unit (electrical shocks to the muscles) before he started to relax me, and then took the most gentle, feathery approach possible— and distracted me as much as he could. Most of this was good. I loved the heat and the TENS unit. It was yummy. And what Mike did felt good, sometimes. And the distraction was great. He became a pal. I really like Mike. He’s the kind of guy I would hang out with.
THAT IS ALL WE DID. When I complain about PT, people envision my having to do 45 minutes on the rowing machine and another 20 on the treadmill or some ridiculous thing. HAH!
No, I was completely exhausted from a fantastic massage. Mike did this neck thing that was quite possibly one of the most delicious feelings ever. And I’m including sex in the list of possible feelings. Seriously, though, just the act of turning over a couple of times on the table, pressing down on my wrists, lying face down (which is very taxing for me, because of my POTS), and the moving around of my tissues and my joints (particularly when he moved my hips and spine around from positional faults), required my immediate, lengthy rest when I got home.
So, it got to the point that I was having early lunch on Tuesday, leaving for PT, then getting home at 2:30 and having to rest until 4:30 or so. Then I would be starving. I would eat dinner, but I would be exhausted afterwards, so I would get in bed, and take my pain meds for the night. I always have writing group on Tuesdays, which was a challenge, but we do it on Skype, so speaking under the covers about writing and doing the occasional writing exercise was okay. But 10:30 would be it for me. About half the time, and especially if Writing Group went late, I felt miserable on Wednesday, mainly the result of PT, so it would be a pajama day. Then it was Thursday, time for PT again, the same rigmarole, and Friday had a 50-50 chance of being lost. That sucked (particularly since I always have a doctor appointment on Monday and frequently have appointments on Fridays as well). My ENTIRE week was gone. It was very hard to make plans at all during the week.
I complained about this problem several times in therapy, and my therapist (who sees only people with chronic pain issues and knows about this stuff), said, “Look, why don’t you call your pain specialist and ask him if there is a medication he can give to help with this. Sometimes the fact that you are so exhausted from the treatment means that you are having pain from it that you’re just not sensing. It’s a good idea to get his opinion.” It was good advice, but my intuition was it was going to turn out terribly. Still I made the call.
Dr. Duckweed, the pain specialist, called me right back. His response? “I thought I told you to make an appointment for another epidural injection.” Me: “Um…I don’t remember that, but I can do that….” Dr. DW: “Oh, COME ON, you know what you were supposed to do! Me: (long silence) I guess I didn’t or I would have made the appointment. But I’m really, really sorry about that. Sorry, Dr. Duckweed. But I am calling because Dr. A suggested I talk with you about my problem. I have a lot of pain in physical therapy and it exhausts me for two days afterwards. I was thinking that maybe there is something I can take just during physical therapy.…. Dr. DW: No, you were supposed to sign up for a shot. Me: But, Dr. Duckweed, I get so exhausted. Dr. DW: If you’re so tired, go see your primary care doctor. [bang–hangs up.]
That was helpful.
I was so upset. What upset me most was that when I get angry, I don’t yell, like Dr. Duckweed. I cry. So to keep myself from crying, I got quiet. That made me so mad.
But then I figured, maybe the guy was right, although he probably didn’t even realize it. I should call my primary care doctor, who is smart and may figure this out. By some miracle, she had an open appointment the next day, which, if you make doctor appointments at all, you know is miraculous. Besides, I thought, maybe I’m depressed. Maybe I am so panicky and can’t handle two simple appointments per week (and a simple run-in with an otherwise very good doctor) because I’m depressed. Yes, that’s it.
Dr. Miller, my PCP, was helpful. She said she would give me the requisite blood test that anyone would expect her to, but we both knew it would be one of the few tests on me that does come out normal. Then, she offered to call Dr. Duckweed to try to reason with him. She suggested that maybe it was a miscommunication, that he was not understanding the part about the exhaustion. She wasn’t so sure about depression. It could be anxiety, but she even wanted to table that until the immediate problem was solved. So we set an appointment for a month in advance to re-evaluate.
Not long after I got home, she left a message—I had been on another phone call I couldn’t hang up from, damn the luck. She told me she had talked with the cranky doc, and that he said, oh of course he didn’t understand the exhaustion part. That’s just muscle pain. Just treat that with Advil and rest. Dr. Miller added her part–that if PT was giving me this much muscle pain, why didn’t I quit for the next 4-6 weeks just to see how that improved my mood and pain level. Then, when we meet next time, we could talk about it.
Well Shit. Um. Okay. I can’t take Advil (or any of its NSAID cousins)— bleeding risk and all. And um, I know I have told Dr. Duckweed countless times that I live on a heating pad. Resting is my life. Jesus. Did he never take notes on any of our visits? But at least Dr. Miller saw through to a solution.
Thankfully, my therapist, the wonderful Dr. A., was willing to email with me about this. We agreed on laying off the PT; if pain and exhaustion had become so central a focus, why continue? He suggested his acupuncturist, who I called right away.
Not fifteen minutes after I canceled my PT appointments, though, Mike called me back to find out what was wrong. He also wanted to point out that if I did go to an acupuncturist to be very careful; since I have Addison’s Disease, I am highly prone to infection. And my VEDS makes me highly prone to bruising. Was I sure acupuncture was good for me? I told him I would sort it out, but thanked him because he was quite right in his reasoning. Still, he wondered, what could I have done better, so I can improve my service.
Horrors. The worst part of it was that I couldn’t articulate what was wrong with me, what the pain was. I couldn’t explain why getting the best massage of my life was making me so miserable. In retrospect, it was like breaking up with someone you really love, for some higher, greater reason. Then, when they say, but we were so great together, and I really, really loved you, what about that wasn’t good, there’s nothing to say to dispute that.
But a physical therapist is not a masseuse. The work this guy was doing was pretty intense. The fact that I mistake him for a masseuse is a testament to his expertise with taking me through some difficult passages. I don’t think anyone else could do it. So what about my body won’t put up with it? And still more, why can’t I articulate it?
I think the conflict with the doctor arose from the same problem. He was angry because I couldn’t give him the right information. If I had been able to explain the kind of pain I had specifically — in frequency, intensity, and duration — he would have known immediately what to do.
My words leave me when it comes to my body. I wonder whether it is a factor of having very poor proprioception, misguided orientation towards my body in space. Thus, I don’t know what hurts or where, just that it hurts, all of it. Or I wonder whether it is I try so hard to tune out the message that anything at all hurts (I do this with such great conviction, I can’t express it to you earnestly enough); it is as though I say to myself those words in the Pink Floyd song,
There is no pain, you are receding; a distant ship, smoke on the horizon. You are only coming through in waves. Your lips move but I can’t hear what you’re saying. When I was a child, I had a fever. My hands felt just like two balloons. Now I’ve got that feeling once again. I can’t explain, you would not understand. This is not how I am. I have become comfortably numb.
Any of my readers who have chronic pain may be able to relate to this inarticulate feeling. Maybe the rest of you a bit? It’s damned ironic that such a consuming feeling also consumes the words I have so freely for every other thing, and it ends up I can’t describe it accurately to the people who would treat it.
What makes you inarticulate?
(P.S. The Pain Doc is fired as of today, and I see the acupuncturist for Medical Qi Gong next week, no needles.)