Another CFS & Fibro Awareness Day is here

I’ve been sick now for about eleven years. It started for me in the summer of 2007. Chronic Fatigue Syndrome. Fibromyalgia. I’ve been diagnosed with both. They’ve already ruined my morning, and I’m going to try not to let them ruin my day.

I woke up this morning to the International Day of Awareness for these disorders being all over my social media feeds, which meant I was in tears before I got out of bed. Fine, whatever. It’s just exhausting.

And you know what else is exhausting? Not having anything to point to, that communicates anything about this part of my life to anyone. What do I point to? The couch? You can’t point to an absence of things. I don’t have a broken bone, or a malfunctioning organ, or a torn muscle, or anything else that I can point to and everyone can make a fuss over – or that CAN BE CURED. Nobody gets to nurse CFS for attention. No one wants to hear about it. It’s exhausting to have, and it’s exhausting to listen to, because it’s hopeless. There is no cure around the corner. You aren’t waiting for your operation that will solve everything.

You can’t give anything for anyone to rally around, and people love things they can rally around. If they can’t rally, guess what?

You fade away.

People with this disease are invisible. My oldest group of friends, people I’ve known twenty years, made a book group and never invited me. Took me months of feeling devasted (and stabbed in the chest every time I had to listen to members talk about it) to finally screw up my courage to ask why I wasn’t included.

“Because we assumed you wouldn’t come.”

We are invisible.

We do not exist anymore. We’re photos on Instagram. We’re people you used to know, people you used to socialize with. We’re Facebook posts you “like” but we aren’t people you actually talk to anymore. You don’t invite us over. You don’t include us anymore.

My dreams, the ones I don’t have any decent odds of achieving, are invisible, too. I won’t be traveling out of this country, or even across the country to visit my family, anytime soon. I look normal. No one sees that I can’t shower without a stool to sit on, that my stepdad picks up my daughter from school every day to save me the 20 minutes of energy that driving there would take. No one sees that I just sent my boat to my dad because I can’t go sailing anymore or take care of her maintenance. That I sit inside my house all day because if I drive myself out somewhere, even just to a local park, it’s possible I won’t be able to drive myself back. Or that when I do, I will be so exhausted that when my daughter gets home from school, I’ll be unconscious on the couch, which isn’t how I want her (or her brother, who comes home later, with Greg) to remember me later.

Today I need a shower. But I have to put it off until the end of the day (if I have any energy left), or until tomorrow, because the family wants to go see a movie today and I can’t do both. Important note: many people with CFS/ME couldn’t even go see the movie, and this wouldn’t even be a question for them. I’d love to be one of those back-to-college success stories, but I don’t have the energy to finish my degree. To do that would require getting in a car, driving to a school, parking, walking into a building. Sitting for a few hours, having the mental energy to follow a lecture and take notes. Get myself home. These things aren’t currently possible. I talk to friends like those things will be soon, but the fact is, they were possible a few years ago and haven’t been since then. And I get worse every year.

Those tasks are very similar to what’s required for a job. Can’t do that either. I had to leave a great job at Tom Bihn, that I enjoyed very much, because I was just too tired. My shifts were actually quite short, only four hours or so, the staff were so wonderful about working around my illness. My work was enjoyable, not stressful. Despite that, my energy tanked. I’d find that on the drive home I’d be dangerously tired to be behind the wheel, and when I got home, I had no energy left to interact with my kids. So I begrudgingly left a place where I got to talk about buying and making travel bags all day with customers, sewers, and designers (if you know me, you know that this was basically my workplace heaven), and returned to being at home. I have some amazing bags that would love to take me around the world. If I’m lucky, they take me on the train down to Portland.

 

I know, I’m smiling. You know why? Because despite what you may have heard, complaining all the time isn’t that fun. But for the record? I hate that I have to do this. Sailing was my life. It was the thing that gave me the greatest joy. I’ve obsessed about it for years, in the most glorious way – read about the concept of “flow” to get some idea of how sailing made me feel. Nothing makes me feel like that. And now my fat little twenty-foot tub is gone. I got three years of doing the thing I love most. My relatives in their sixties and seventies have been sailing their whole lives.

I don’t shower or bathe alone, because those things can sometimes trigger attacks of weakness that make it hard to get out of the tub. I don’t move around the house when I’m here alone, without carrying my cell phone with me everywhere, so I can talk to my husband if I need to or call for help if I’m crashing.

Everyone makes fun of me for carrying around a heavy bag, jokes that “This is why you’re so tired,” but I carry that bag because I’ve found myself out in public too many times, too tired to get up from the table, or to leave the bathroom, or to walk to my car, and I need that bottle of water and that bag of snacks. I carry that extra battery in case my phone dies and I have to call a ride. I carry that scarf because if I have a bad panic attack, wrapping it around my head is one of the few sensory tools (carrying that bottle of essential oil is the other) that will really make a difference in how much calm can be regained while I’m waiting for my Ativan to kick in.

You want to know what’s really beautiful to me? Every time we’re out, my husband Greg says, “Want me to carry that for you?” He carries this bag wherever we go. He knows I need it. He doesn’t tease me about it anymore. He stopped. I just realized it’s been months since he said anything about it. Come to think of it, half the time he doesn’t even ask. He just takes it off my shoulder and slides it onto his.

There are so many good things in my life, too.

But those are the visible things. And we tend to get assessed on the visible things. So, I’m assessed as Very Fortunate, which I am – that label isn’t wrong. I’ve been married to my best friend for 22 years. I’m more in love with him now than ever. I (and we) have great relationships with our kids, and they are truly funny and good people. Is there some kind of karmic bank that says I can have these things but I can’t live a normal life? Am I supposed to just know that this is enough? I shouldn’t want a career, or the chance at a degree, or the ability to find out what I’m capable of as a human?

Is this all I’m capable of? Blogging about being sick? Sewing a few things?

I miss the person I used to be.

When I first started sailing. The pain and fatigue weren’t as bad, then. I wasn’t a very energetic sailor, but I could do it safely for a couple hours at a time.

I miss the person I could be. I think she’d be pretty cool. I think the world would be better off for her.

I texted my friend this morning. She has chronic pain issues and has struggled with the cycle of feeling hopeful, then burned when something didn’t help, or didn’t help enough. She’s used to us talking in a more hopeful way, but this morning when I wrote that I just needed someone to say, “I see that you’ve gotten worse, I see that it’s happening,” she said it. She saw it. And that helped me so much. She knows what I meant. I don’t need to dwell on negativity (we both find that tiring and draining), and I don’t need to wallow. Every so often I just have a day where I want the bad stuff to be noticed. Acknowledged. It doesn’t have to be every day, or even most days. Maybe one day a month? Would that be okay?

If you’re so inclined to do anything else…

  • You could watch Unrest. It’s on Netflix.
  • I met a great person through the interwebs (they are good for something besides dog photos, it turns out), Siobhan, and she has a great blog you should read. She even has a post about this awareness month we’re in.
  • While you’re at it, please read this post from Siobhan where she talks about different kinds of fatigue. Just in case you think that all I need is to “go walk more” or something.

As for me personally….

If you want to help me, Hollie, just say you see it. That’s it. That’s all. If I post about this somewhere? Just tell me you see it, and it sucks, and you care about me and you wish it were different. That’s it.

 

10 comments

  1. E says:

    As another person who’s had both diagnosis, don’t give up hope. It can get better. Probably never cured, but finding all the underlying causes and treating them can make a huge difference in quality of life. I have seen your recent decline. It breaks my heart.

    • Sewbiwan says:

      Oh wow, thank you for saying that. Hugs! I felt so bad when I didn’t come over the other day but then made you come here – and good lord, talked your ear off (sorry about that). It was hard to say out loud, “The idea of coming over feels tiring.” I always worry the friend will think I mean that _they_ are tiring. Thanks for coming over!

  2. Shelley says:

    Hi Hollie!,
    Just a quick note……I see it. I have been stalking … I mean following your blog and insta for a while now and I feel so so bad for you. I can see you are so much worse it seems. I’m so sorry.
    I had forgot about it being fibro awareness day since I am not on FB much anymore.
    I was diagnosed in 81. I’m not going into that right now because this is about you.
    I’m so glad your family supports you. Take care and know I am aware of you and your disease and it sucks and I wish you didn’t have it!

    I hope it is sunny up there today. I live south of you 36 miles west of Eugene, Or. and it is sunny today and warm. (Which helps with everything 😉)

    Shelley

    • Sewbiwan says:

      Oh no, go on, it’s okay! I don’t mind! I’m so sorry you have fibro! Diagnosed in ’81, wow. So you know! Here I am whining about eleven years!

      And HELLO ALMOST NEIGHBOR, I haven’t announced it here on the blog officially or anything, but we’re moving to Eugene, Oregon in a year! I’ll write about that soon. 🙂 If you’re west, does that mean you’re near Florence? I’m really hoping we can drive out to the beach more! That’s a big draw of Eugene, among so many other things. Less traffic, less noise, more outdoors, the rivers! On and on and on….we visited a few weeks ago and loved it.

      It is sunny today! It’s lovely out! Greg and Beth and I ended up skipping the movie, but we got lunch and then they took me to a bookstore for an early mother’s day present, so I got to have some fun. I’m in a much better place than I was this morning.

    • Sewbiwan says:

      Oh Pam thank you! 🙂 I felt bad when I moved to self-hosted, lol! I was wondering if I should ping you and get your opinion. But then I just dove off the deep end.

  3. Siobhan S says:

    Gosh Holly, reading this broke my heart all over again (after yesterday, of course). I wish I could refute you but you write so well about the reality of chronic illness – I felt every single word. I’m so, so sorry you had to give up your boat (and so many other things). People don’t really get it, but our identities are wrapped up in our boats, or whatever has meaning to us, and when we lose them, a little part of ourselves dies with it.

    Thanks so much for linking me. I’ve just shared your post on FB, as it struck such a chord with me. I can’t tell you things will get better, or that there is some cure waiting just around the corner – though there might be. But as I said on FB, if I’m glad for one thing, it’s “meeting” people like you online. I see you, and think of you often.

    • Sewbiwan says:

      I feel the same way about your writing! And yes, exactly. Our identities _are_ wrapped up in these things that have meaning to us. All anyone ever hears is “you could afford a boat, you’re so privileged”, which yes is true, I’ve never for a second denied that. But does that mean I can’t feel grief when it’s gone? This thing that made me feel real, feel alive? Thanks for hearing what I was trying to say, I really appreciate it. I see you too, and also think of you often! I’m sorry I’m not commenting more, I need to rectify that.

    • Sewbiwan says:

      Hello! I’m sorry to hear that. Please send her my best! I so want there to be a day when we can all talk about having these illnesses in the past tense.

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