How I spent my birthday

Warning: contains GIFs.

This isn’t the most fun birthday story, nor the happiest, but I believe it’s important to be honest about my symptoms to promote understanding of life with chronic illness. It doesn’t take a break when it’s your birthday! (Though I wish it did.) And if it helps others who share the same experiences, even better.

 

It’s lunchtime, and mum and I are preparing toasties. Suddenly, a wave of exhaustion washes over me, and I head back to my room for a quick rest before the exertion of sitting upright at the kitchen table. I’m nearly at my chair when – THUD. I hit the floor.

Hans Moleman: down I go.
I’m pretty sure this is the most-used GIF on this blog, but it’s just so damn accurate.

My knees go first (that’ll bruise) then the rest of me, landing in a bizarre, contorted position, my arms and legs pointed one way and my head the other.

Fuck. So close, too, I think. Ah well, I’ll just lie here for a min while the sandwiches toast, then get up and eat.

 

Mum is at the (closed) door. The sandwiches are ready. I try to reply, but the words won’t come out, except in a slurred mumble. Bugger. No wonder she can’t hear me.

I can move, a little – enough to reach for my hankie and dab at my eyes. That’s about it. I patiently await her return, sure that I will be able to explain the situation and get up soon.

The house creaks around me, the pipes rumble, and after what seems an age, mum returns to announce the kitchen is free. I try to call for help, but my vocal range seems limited to desperate humming. She must think I’m unwell and need a rest. I’m stuck here.

 

This isn’t my first time down and out. Collapsing occurs on a semi-regular basis, and forms one of the vast array of symptoms that make up my life with ME/CFS. I much prefer pre-syncope, which at least makes some sort of physiological sense, and can be remedied with drugs, lots and lots of Powerade, and elevated legs. When my body goes from 100 (or whatever my current functioning is – maybe 10) to 0 in a split second, it’s confounding.

I'm shocked! Shocked! Well, not that shocked.

And before you ask, I’ve detailed this symptom (and so, so many others) to practically every clinician I’ve seen in the past. It’s not a particularly wise thing to disclose, as you start to see the shutters go down and the “SHE’S FUCKING CRAZY” look appear in their eyes. Even if I get sympathy, there are no answers for me. So I wait it out.

 

I hope I’m not down here for long. We’re having Thai for tea.

 

It’s a quiet day. I hear the whirr, whirr, whirr of the fan overhead. It’s 40C out and I thank my past self for turning it on this morning.

My right arm, sprawled next to my left ear, bears my cheap Aliexpress watch. Tick, tick, it plays in my ear. I didn’t even realise it made sounds until now.*

Meanwhile, my body seems to have set like concrete, with even limited movement impossible. As much as I will it, my limbs do not obey.

 

Whirr, whirr, whirr.

Tick, tick.

 

At this point, I’m still holding out some hope for rescue. Find me, find me, HELP ME, I cry (with my thoughts). It’s times like this I wish The Secret did really work, or the universe could perceive intentions or whatever crazy shit people believe to make life seem more palatable was true. Every so often I build my strength, compress my lungs and let out what I hope will be a cry, but is really just a glorified hum.

Eventually, I lose strength and give up. I wonder when someone will find me. It’s a bit like having ME/CFS, really. You desperately cry for help, but even if someone does find you, there’s nothing they can do.

 

Whirr, whirr, whirr.

Tick, tick.

 

I try to distract myself with thoughts and daydreams, but my mind is incapable of playing out actions that my body is currently prevented from performing. Periodically, my body spasms, then forgets how to move as quickly as it remembered.

I take short breaths in and out – all my lungs are able to muster – and swallow when able. The fan and watch play a soothing, white noise symphony that I try to relax into.

Time seems meaningless – I could have been down here for minutes or hours. Too bad I can’t see my watch.

 

 

Whirr, whirr, whirr.

Tick, tick.

BANG! BANG!

That’s new

BANG! BANG!

My brother must be playing his PS4. The sound is grating and unpleasant. Possibly in reaction, my body spasms – this time more violently, enough to allow me to let out a yell. Nobody comes, but the spasm has rolled me onto my side, a far easier position to crawl up from.

I take a brief glimpse at my watch – damn, I’ve been down here for an hour – and start trying to move. I flop onto my stomach and apply all my available strength to my arms and legs against the floor. No movement, but I let out another yell. Good.

I try again, and this time I succeed in lifting myself up onto my forearms. Not for long – down I go again. But I can move.

I slowly activate my body, straining against the floor, wriggling around like a caterpillar trying to get up again. But it is in vain. I’m 30cm from my chair and I can’t even reach it. Fuck. There is some sort of exquisite agony in being trapped in a body that will not respond to your internal demands.

Let's throw the expected out the window.

 

The tears flow freely now, out of my control. The realisation that my carefully applied makeup will be ruined is enough to impel me onto one last try.

“ARGGGHHHHH!!!!” I scream, as I fling my body up towards the chair. I made it! My upper body, at least. I’m clinging to it like a seal on the rock, trying to engage my legs to push me higher.

Mufasa from The Lion King is held off a cliff by Scar.
Seal, cartoon lion, whatever. LONG LIVE THE KING.

My vocal cords are working enough now that I grunt and yell (quietly) with every movement. My body spasms and shakes with effort as I flip myself over and bum-scoot my way up, nearly ripping my shirt in the attempt. I made it. I’m sprawled like a starfish but I FUCKING MADE IT.

Tears flow (god, my makeup) and I heave short breaths as I rest on my throne. Careful, careful with my next steps so I don’t fall down again, this time perilously further from a chair. Once my body feels ready, I test my weight on my legs, then drag myself along the house using walls, chairs and doors. I flop my upper body onto the bench to reach for my sandwich, then collapse onto the couch with my prize.

Scene from IT Crowd, a woman's makeup runs down her face as she cries.
Above: me.

 

Time for more rest. Reality still shimmers in front of me, as if a mirage. But I’m up. Half an hour more on the couch and I can stand (sort of) again.

It will take several hours for me to regain full moderate half capacity, and I’ll be shaken for a few days. Later that night, I will burst into tears from the sheer horror of lying there, paralysed, fearing no one would ever find me. But for now, I get up and carry on.

 

Happy fucking birthday.

I guess at times like this, all you can do is laugh.

 

 

*Guess I thought it was too cheap to make actual, watch-like sounds.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

20 thoughts on “How I spent my birthday”

  1. There’s no way I can click the like button on this one. It’s beautifully written, but I don’t like that you’ve had to experience such a thing, especially on your birthday. It sounds terrifying and just so damn unfair. Having your body fail, for unknown reasons, to be cast aside by doctors who are unwillingly to even admit that they just don’t know, it’s all just overwhelmingly frustrating. Hoping that the rest of the day went as smoothly as possible. And thank you for sharing this experience because if we don’t put these experiences out there all of us are going to continue to think we are suffering alone. What’s becoming so vibrantly clear is that we are not alone, and we are not just going to continue to allow doctors to ignore us, and we have a voice, a voice that is reaching farther and farther, to ears of researchers and doctors that do actually want answers. Sending you strength🌸

    Like

    1. Thanks so much for your support. That comment was a bit of a disclaimer for those who would have inevitably demanded why I haven’t told a doctor about these symptoms – as if the thought had never crossed my mind! I have had some investigation which has turned up trumps, very frustrating.

      You are right, we are not alone, we are powerful and strong together ❤️❤️

      Liked by 1 person

  2. Shit oh dear. No one needs such fuckery, a birthday thrown in just seems like a very, very bad joke. God woman, have you thought of one of those personal alarms you can wear round your neck/on your wrist so that you can alert someone if it happens again?

    Like

    1. I know, right? It seems like the universe was playing a massive prank on me. I was actually considering a smartwatch which I can use to send an automated text to my parents, but I’m struggling to find one in my research that suits all my needs (accurate HR monitor, texting, matching an Android phone!). Honestly the only one that seems suitable is the Apple Watch and I don’t want to get an iPhone just so I can use it!

      Liked by 1 person

      1. gah! While you’re waiting for the perfect one, it looks like you may need to get an OK one. No more lying on the floor attention seeking my girl, GET THAT ATTENTION. Don’t make me come over there and kick you up the butt xxx Seriously, you have to have some sort of alarm on your person at all times, it’s too fookin’ stressful worrying about you lol I bet your family were pretty pissed off too huh? mwah Spoons in cartloads xxx

        Liked by 1 person

  3. That was so painful to read Siobhan, though not a fraction of the pain you have gone through, and I thank you for your honesty and bravery in sharing your journey. God I wish there was some way to make things better. I’m sending you love and wishes for better birthdays to come xxxx

    Like

  4. Siobhan, all I can say is how can I support you?

    I really appreciate your candor in describing your experience and I’m just thinking that while I don’t have anything particularly smart to say, I can at least offer my support.

    Thinking of you.

    Like

      1. Definitely interested, and definitely willing to support you even in my small way. Hang in there. I have hope it will get better, but I’m willing to listen in those times when it gets worse.

        A dear friend of mine got an initial diagnosis of ME/CFS a few months ago, kind of at the point when her doctor about ran out of other ideas. I told her about your blog as soon as I learned.

        Sending you virtual hugs.

        Liked by 1 person

  5. That sounds awful and excruciating in at least fifteen different ways. I’m so sorry you had to experience that – and that it’s not unusual for you. It, frankly, stinks.

    I often think many things would be more bearable if you could just put them on pause for a day. Or perhaps they’d just feel worse to go back to… but I’d be willing to try and see! Whoever designed human bodies and this whole system did a poor job imo (I guess that’s what evolution will get you…)

    This is a beautifully written post, but I wish it didn’t exist because I wish you hadn’t had the experience. Wishing for vastly fewer days like this for you. ❤

    Like

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