Please Stop Making Fun of Me for Falling Asleep at 5 PM

You might think it’s funny when I fall asleep at 5:00 p.m. or throughout the day, you think it’s hilarious that I can’t stay awake through a TV program or a film, but let me explain why that happens. Let me explain why it hurts when you think it’s so funny that I am always tired.

1. It’s not just being a little tired – my whole body aches with the effort of trying to stay awake. I’ve had days where exhaustion just overwhelms. It is fatigue and fatigue is very different to tiredness. It’s very hard to explain, but tiredness can be rectified by a nap or a couple of good night’s sleeps. Fatigue is relentless – your mind and body are tired. Lifting your arm hurts with effort. You can barely string a coherent sentence together and thoughts stay fleetingly in your head before flying away, never to be seen again. You cannot stay awake however hard you try because the effort of staying awake is in itself a huge effort. Think about trying to swim in a pool of molasses with a full near costume on – could you do that? Not easily!

2. I have insomnia and painsomnia and that’s not fun. Insomnia speaks for itself. I tend to go to sleep OK but cannot stay asleep. 2:00 a.m. is my normal wake up time where, if I don’t get up I end up feeling worse. I therefore have made binge-watching box sets of DVDs in the early hours a new art. Painsomnia is something that people without a long-term condition often haven’t heard of. Instead of just being unable to sleep, painsomnia instead is where you cannot sleep because of pain. Usually I wake up because I’ve dislocated or subluxed a joint. Waking up with a hip or knee out of place on a glorious midnight walkabout is not really my idea of fun. If it’s not those, it’s my shoulder making my arm do a great impression of no longer belonging to me! It’s not exactly conducive to a good night’s sleep. The midnight dislocations are inevitably followed by the lengthy relocation process, wriggling about until the glorious pop moment when you know it’s back where it should be. I know then that I need some painkillers and a recovery period so again am to be found on the couch binge-watching box sets. Now much as getting to watch my great DVDs is good, the timing could definitely be better. I’d much rather be watching TV at a normal time and sleeping seven or more hours a night, but my body has other ideas, and so, with an average of a 2:00 a.m. wake up time, is it really any wonder I drop off at 5:00 p.m.? To me I’ve often been awake 15 hours!

3. What takes you 10 minutes has taken me 40 and used every last bit of strength I had left. Now a lot of people use the spoon theory to describe our energy stores. The theory goes that you start the day with x amount of spoons, and during the day everything takes some of those spoons until you have no more left. Most people have the chance to replenish their stores during the day with either food or less taxing tasks. To me, however, there are no less taxing tasks – each one is hard. Some, yes, do take different amounts of my energy, but they all take energy and so before the second half of the day I’ve already run out of “spoons.”

4. You think I’ve been sitting doing nothing all day, when in fact that “nothing” has taken so much effort I’m exhausted. Just sitting takes a lot of energy, especially on a bad day. Ehlers-Danlos syndrome makes any movement difficult, the threat of dislocation looming at all times. It is an effort even using brain power, especially with brain fog when you cannot really even think what your own name is. You have to think about how to get up off the sofa, you have to think about how to do everything to minimize either having symptoms or to make sure you don’t have an accident, e.g. fall or trip, etc.

Having postural orthostatic tachycardia syndrome (POTS) and my other conditions means that maintaining an upright position, even seated, takes effort. My pulse races and so I constantly feel ill from that; it’s exhausting. Added to that I have a mountain of appointments, and every few weeks I have to plan how to get to said appointments – who can take and assist me – and then I have to plan what I am going to say. I find that so many people in the medical profession haven’t heard of EDS, or if they have, many more have lots of wrong ideas about how it can affect you. This means I have to go prepared and read up on things too!! It can be a full-time job. I also complete surveys. It keeps me busy and gets me vouchers to spend on things I couldn’t necessarily afford. These take a lot of brain power and again effort just to sit up doing them.

5. It means you don’t understand what I go through and why I’m so tired. Your teasing, while not meant to be mean, shows me you don’t understand all these problems. You don’t understand just how much it takes for me to live day to day. How hard I find it to do anything, how even sitting takes a lot of effort for me. You don’t see that I don’t like that I can’t stay awake, that I’d much rather be watching programs I like and doing crafts. You don’t understand that however much or little sleep I get I’m still fatigued all the time, and you just don’t see that I don’t choose to fall asleep. It is simply that my body has given up, has no more energy left and has no choice but to shut itself down.

So yes, I do fall asleep a lot in the evenings and yes, I can’t stay awake and am constantly tired. But I believe I actually have good reasons why that is. I’m not after pity from anyone, but some more understanding would be appreciated.

This post originally appeared on Crafty Insomniac.

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Thinkstock photo via cyano66.