Good grief.

Life-changing showering apparatus.

In the last two months, this bullshit illness has worsened. Tonight I realized that it’s reached the point where I need my shower bench every time I use the shower. I bought it a year ago, because my hips and low back would seize up with severe pain, and holding onto the stool as I stepped over the side of the tub would give me the extra balance I needed. But it was a convenience item. It had novelty. I only used it for one or two showers out of ten, and if books or magazines were stacked on top from my last bath, I could just hold the side of the tub and be extra slow and cautious. The stool was nice to have around, but it didn’t make the difference between whether I got a shower or not.

My therapist is a great person that I’ve been seeing off and on for a few years. Off when things are calm, on when the panic disorder is blaring for whatever reason. He’s fantastic at his work, a real gift to the profession, and I just stumbled into his office because his address listed him close to my house and I was too anxious to drive any farther. For a couple years I saw him every two weeks, with frequent longer breaks, which, much like the shower stool, felt like something I kept around because it was reassuring to have, but I told myself it wasn’t like I absolutely needed it.

In the last six months, we’ve shifted to every week. I need the therapy. I absolutely receive measurable benefit from those hours. I wish I could say I have to go because I’m a little extra anxious, but all we talk about is coping with CFS. It has come to dominate everything. I hate it for that.

It’s probably going to dominate this blog. I had intended to write mostly about sewing, and then it shifted to where I hoped it would be half sewing and half sailing adventures: a reflection of what I believed would make a pretty great life. But I haven’t sewn in weeks. The work of cutting everything out and getting it together is too tiring, and I’m in the middle of a flare. In the calendar year of 2017, I think we sailed twice. Once during my birthday, when we thought the herb andrographus was turning everything around and we were so full of (mistaken) hope. Now we’ve started talking about selling my little Elska. Greg isn’t pushing for it, he still loves sailing. But he’s said, “I think I’m finally ready to talk about it.” It feels like I have this big, beloved dog, that I have to think about rehoming because I can’t give it exercise.

I’ve been very lucky in some big ways, and it’s felt overwhelmingly important to acknowledge that. I’ve been married for twenty-two years to someone I love more every day. Cheesy, but true. We managed to have two great kids (who I won’t write a great deal about to respect their privacy). And in this ridiculous, unfair, punishing economy, I have access to general financial stability and excellent health insurance. As a non-working disabled person. I mean, come on, that just seems like so much (knock on wood, kenahora). What is there to be upset about? A little fatigue? A little exhaustion? Waking up in pain every day? Not getting anything done? Never feeling like a good parent, wife, or friend? Being unable to finish your degree or have any kind of professional life? Big deal. There are worse things.

I’ve internalized this train of thought. I actively avoid my own negative feelings related to living with CFS, because it doesn’t even seem fair to have them when I live with such good things, too. Those feelings have been piling up for years. Today, in therapy, I accidentally walked right into them (he would probably say it wasn’t an accident). I don’t even remember the conversation beforehand. It was like wandering through the woods, looking up at the trees, and then tripping over a log and stumbling a few feet forward into a clearing, looking up, and realizing you were surrounded by wolves – except not wolves because I love dogs. Maybe bears. But they don’t really hunt in packs. Okay, pretend bears hunt in packs. And aren’t furry, or cute.

Whatever. The point is: doom was inevitable. It was too late to back away. Here it was, and I was meeting it. “Ohhh no,” I thought. “Well, here we go,” and there I went. Within 45 minutes I’d gone through an entire box of Kleenex. As the first wad was rolled up, my therapist pulled the wire trash basket out from under his desk and set it in front of me, without missing a beat. Good job, man.

You see I am used to saying, “Hips and back are really hurting today,” in a friendly, nonchalant way, to explain why I’m not bending over to get something off the floor, or why I need help lifting something. I’m used to saying, “I’m sorry, I’m just too tired right now,” when I get invited to something. Sometimes I say, “It’s been a hard day.” And sometimes I just need to cry because I’m so tired and in so much pain and I hate being so tired and in so much damn pain, and it’s been days since I did anything useful like washed a dish or ran a load of laundry, and I just point to the ceiling (meaning I’m retiring to our bedroom) and say with a cracking voice, “I think it’s time for a let-it-out session.” Greg nods and follows me up the stairs, and holds me while I cry.

What I’m not used to is saying, “I can’t do ______, and it hurts.”

Look at that sentence structure. Doesn’t get much more simple than that. Right in front of me all along, under my nose. I went through a list of things. I can’t do this, that, the other thing. On and on. Big things, small things. Parenting things, life goal things, education things, professional life things. Things that are gone. Plans, dreams, deep desires. For every one I thought of, I cried so hard that my therapist, sitting on his chair in front of me, became a blurry haze of navy cable-knit with a head-shape on top and loafers sticking out the bottom. “Am I even looking at his face?” I wondered, through all the water pouring down my cheeks.

I don’t want to write them all down, the things. My things. It will be different for someone else. The things I treasured doing, the things that made me feel alive, it’s easy for someone to dismiss, and I won’t sit for that. Fuck dismissal. We all come alive with different things. For me, the big things that made me come alive, aren’t accessible to me right now. I don’t know if they ever will be, again. And that hurts.

My therapist said this was great work. I laughed and told him I’d bring him a new box of Kleenex. We talked about how hard it can be to sit with emotional pain, especially when we have within ourselves (and are aware of in others) so many judgements about it. Saying it hurts doesn’t mean you’re proclaiming it will never end or is hopeless. It doesn’t mean you’re wallowing. It also doesn’t mean you’re saying it’s the worst thing ever, worse than anything anyone else has ever gone through. It just means: it hurts. And it’s okay to cry about it.

I must have been on a roll, because later tonight I got home and took a shower, and realized while I was sitting there, my head full of shampoo, that I can’t not sit there. If I stand up, I get too dizzy from fatigue and exhaustion. I can take showers without the bench if I’m very careful and I make them very fast (and I don’t wash my hair that well), but it takes so much concentration (and forced optimism) and when I’m done, I’m three times as exhausted than if I had just used the stupid bench.

I got out of the shower, got dressed, went downstairs, and told Greg about it. I said, “I can’t take a shower without sitting down while I’m doing it.” And then I cried a little. And it was okay. No one judged me, and if they did, I think I’d have felt pretty okay telling them to feck off. I didn’t feel a need to judge myself. This illness is hard. It might get better. It might not. Living with it isn’t easy. It is what it is.

I sat with that awareness for a minute, and then I got up and went into the other room, and sat down with Jason and our friend Claire, and watched Pride and Prejudice. Nothing better than celebrating the acknowledgment of difficult emotions than by watching a love story set in a society actively constructed to avoid the unchecked acknowledgment of nearly anything.

“I think a ball is a perfectly irrational way to make new acquaintances.”

Oh, bookish little weirdo after my own heart. Mary and I are the INFPs in the corner at parties, petting the dog and reading the spines of the books on the shelves.

 

Mr. Collins, receiving the elbow of insolence.

5 comments

  1. Siobhan S says:

    Wow, the shower chair thing really hit home. When I first had my relapse I was so reluctant to use the shower chair again as I felt it was a step backwards. Turns out, it’s the only way I can have a shower. You’re so right in saying every little step hurts. I’m so sorry you are experiencing this. Sending love and hugs.

    • Sewbiwan says:

      Sending love and hugs back! I wish none of us had to go through this. I fervently hope that Brea’s documentary will lead to more awareness and research.

  2. SJ Kurtz says:

    Shower chair and therapist are there for a reason. Help you do things for yourself.

    “She was a fighter” “Her fight with cancer” “Her courageous battle” None of these people who say these things are the sick people. Sick people put one day after another in a row. Some days are good. Some suck. Every day above ground is a good day, until it’s not. As long as I have another day, I am pretty grateful. Not Pollyanna levels of gratitude, but she was kinda creepy, right?

    Does this mean that if you aren’t making definable progress, you are a loser? That you didn’t try hard enough? You see where this is going.

    (string of profanity deleted) and the horse they rode in on.

    I’m glad you have good insurance and loving family. It doesn’t make things all better, but it is the road to the next day. Don’t judge what you are by what you were.

    I am sorry about the boat. Can you drydock her? Is that going to make you feel better or worse?
    If worse, let her go. There is always another boat. I’m glad you have the chair and the therapist and the loving family. I don’t think I could wish you much more.

    • Sewbiwan says:

      “It doesn’t make things all better, but it is the road to the next day.” I love that, thank you. It’s a beautiful way to put it.

      We actually could drydock her, I hadn’t thought of that. I’m going to do a haul-out and get her bottom painted, and then Greg and I should consider just putting her on that shelf for awhile. It takes such hand-wringing to get into Shilshole Bay Marina (which is 5 minutes from our house) that I’m reluctant to give up our slip (which is in a plumb spot).

      My dad has talked about taking her (his side of the family are all sailors, it’s where I get it), which would mean shipping her down to Portland. She wouldn’t be too far away if we did that, which would be nice. She wouldn’t really be gone, that way.

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