On the edge of nobody’s empire. 

As I came into consciousness this morning and rolled over, before I’d opened my eyes, I felt the room tip sideways and then slosh back again. I tried to look at my phone to see the time and my eyes wouldn’t track properly. Like marbles rolling uncontrolled, I couldn’t make my vision focus on one point. And, in an instant, the fear collapses in on me, crushing my lungs, sucking all the air and hope out of the room. I wonder if the vertigo is caused by the way I slept – something physical tweaked in my neck – or my new thyroid medication that I started yesterday, or did I do too much decorating the tree? Was it the drop of milk in my tea? I wonder how long it will last and does it signal another relapse. Having the borders of my world change from the downstairs sitting room to the four walls of my bedroom seems immeasurably cruel. Facebook is a lifeline normally, but torturous today. Christmas cheer, family fun, laughing faces, out and about doing things, going places, making new memories. One friend is going to a play in NYC, others are going ice skating in Glasgow, and a photo of a pumpkin spice latte sends me over the edge.

Every day, every hour, that my headache isn’t too bad or my brain isn’t too muddied and labouring, I focus on a future where I may be able to leave the house, interact with friends, have time elapse without a constant focus on my malfunctioning body and precarious health. But, as soon as there is a shift – my sleep disappears, my muscles are poisoned, this vertigo tilts the horizon away from me with the slightest movement and the room spins sickeningly even while still – despair eclipses everything. I feel like I’m buried alive, dragging my fingernails along the wooden coffin, screaming at the top of my lungs, while people deafly live and laugh six feet above.

This is where I was this morning when Jen Brea posted this song by Belle & Sebastian. I didn’t know the singer, Stuart Murdoch, had severe M.E. I needed this today.

———————————————————–

As I was about to publish this post, my two dogs just got past the gate to the upstairs and both bounded onto my carefully kept-clean bed with muddy boots from tearing around the garden, barking at the passers-by. It is the first time that they’ve been on my bed in three months and it felt like how it must be to have excited children, brimming with life-force, jump into your bed on Christmas morning, holding fistfuls of treats that crumble all over the sheets and wearing smiles of oblivious delight. Yes, their visit caused my world to teeter-totter even more violently, but it also lifted the heartache a little. This too shall pass.

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10 thoughts on “On the edge of nobody’s empire. 

  1. Jackie says:

    I hope this passes! You’re right on the children front. It doesn’t have to be Christmas morning. When I haven’t seen Emma in a few days, or even a few weeks, and she comes running in, thrilled to see me — it brightens my whole day. It doesn’t matter the energy it takes to see her.

    Liked by 1 person

  2. Jackie, I know… I love how much you love her. It’s a beautiful relationship to read about. I remember seeing your photos of the two of you in the park (where you did the somersault around the bar, I think?) and I thought, the only thing that can get me out to the park expending that much energy is my kids, too. 🙂

    Like

  3. kneillbc says:

    Oh, I’m so sorry you’re having such a rough go right now. The actual physical sensations are different, but I do know that first thing in the morning feeling that says ‘whatever you had planned today, it will not happen’. I wish I had the perfect thing to make it better, but I don’t. What I do know is that there will be good days that go along with the bad. I am wishing with all my heart that tomorrow will be a better day than today, and that you start to have more good days than bad.

    I also know the feeling of my children jumping into bed- and not the pooch kind. One of the worst feelings is when you just can’t get up and do something for them, but those are far outweighed by the good feeling of a hug from a child. It’s extraordinarily therapeutic.

    I also know the feeling about FaceBook- you wrote that so beautifully. Some days it makes me feel less isolated, some days it makes me ache with the desire to do something. Anything. Go out for coffee. You’re a Pacific Northwester- not being able to go into a coffee shop makes you an outcast in an instant. It also makes it VERY difficult to find public washrooms…

    Karen

    Liked by 1 person

  4. bertieandme says:

    I felt every word of this post. Christmas is a hard time to be sick and isolated. However, I always think people who are telling you about their exciting lives on Facebook aren’t having as good a time as you think – if they were, they wouldn’t feel the need to tell everyone about it!!! They’d be too busy doing it and not caring about other people. Only disconnected people feel the need to tell the world about their exciting life – truly happy people are too busy to be doing status updates (I know I would be if I were healthy and out in the world). xxx

    Liked by 1 person

    • Jak, I dunno, I think, if (when) I am finally out and about, I’m going to be screaming it from the Facebook rooftops, so that everyone can be a part of it. I’m going to be annoyingly memorialising every moment to inspire others (even healthy others) to get out and let go, enjoy life, allow laughter, notice the good times… And, for the record, one of those people ice skating was my best friend and I KNOW she knows how to have a wonderful time without taking it for granted. It’s just this time, seeing it, I wanted to be there so badly! We’re not getting any younger, you know? Who knows how long we’ll be able to ice skate! Anyway, I so appreciate your trying to make me feel better. 😉 The good news is, I slept relatively well last night and I think the vertigo has lifted (although I haven’t stood up yet). Much love, lady. X

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  5. oh, Elizabeth. Me too, all of it.

    Liked by 1 person

    • I was thinking about you last night as I was trying to go to sleep. I thought, just turn your phone back on and shoot Michael a message. I didn’t, but please know I think about you all the time. Hang in there. X

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  6. Anna says:

    I had no idea Stuart M has ME. That’s so interesting.

    Sorry yesterday was rough. I hope today is better. Love you!

    Liked by 1 person

  7. I hope today is better than yesterday and tomorrow will be better than today. It is an old saying, but the hopes for your future are not old – they are fresh and in the now. And come with honest, positive feelings. Hugs. 🙂

    Liked by 1 person

  8. Thinking of you as always and hoping better days are following. xx

    Liked by 1 person

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