Chronic Illness, Depression, Fibro Life, Fibrolmyalgia

Endlessly Relentless.


I literally don’t remember the last time I woke up feeling any benefit from having slept.

It makes no difference if I sleep for 20 minutes, an hour and a half, 3 hours, 8 hours, 12 hours, or am engulfed by my old friend the 20 hour coma.

It’s always the same result. I wake up feeling run-over, beaten up, and poisoned.

Why do I sleep at all? What’s the point? 

It’s an endlessly relentless cycle of exhaustion and pain, sleep, exhaustion and pain. It’s depressing. I see no end to it.

I was hopeful last night. I nodded off early, whilst I was still sitting up in bed watching TV with my headphones on so as not to disturb my beautiful sleeping Ben. Ordinarily, I doze, wake up, rewind the bits of the programme I’ve missed, watch it again, doze off again, wake up, rewind….lather, rinse, repeat.

At this time of year, high summer, I somehow feel compelled to keep watch, stay awake, be alert enough to protect the house, until the sound of bird-song seeps under my headphones and fingers of soft dawn light gently lift the darkness out of our bedroom. Only then will I feel safe enough to turn everything off, move my heat pad off my back-pillow, take my last lot of pain-killers, remove my glasses and tuck down. Fibromyalgia perpetuates anxiety. I don’t feel safe when Ben is asleep. Ben is my protector.

But recently, the exhaustion has been greater than usual. It has closed my eyes when I don’t want to close them. It has enveloped me in unconscious sleep against my will, and instead of dozing for a few minutes at a time throughout the night, I have been waking up sometimes three hours later, head off at an awkward angle, neck cricked to the extent of having to re-position my head painfully with my hands. I feel like a battle-ship’s look-out who has been caught asleep on his watch. I am always heart-in-mouth amazed that no-one and nothing has taken advantage of my gross dereliction of duty, that no punishment ensues.

But if my body insists on sleep, if it’s going to bully me into unconsciousness, then I must work with this, pre-empt the bullying by taking control and making sleep my choice. So I up my anti-anxiety meds, and I prepare for tucked-down, properly horizontal sleep the first time I surface from nodding-off. I take another batch of pain meds, another valium. I slide the heat-pad off my back-pillow and place it on the floor. I turn off the TV and the box. I quietly put the remotes on my bedside drawers. I put my glasses next to the remotes. I tuck down feeling sensible. I am doing my body is telling me to do. I am not fighting the urge to sleep.

I am listening to my body’s needs, if not my mind’s.

And I sleep. I sleep for several uninterrupted hours, which you would think would be a relief, to be out of pain for that long – or at least be consciously unaware of it.

But I guess that’s the thing. I may not be consciously aware of it, but it must be eating away at my subconscious throughout that time. I awake in pain. My back hurts. My fingers and hands hurt, my neck hurts. My hips hurt. I can identify few areas that don’t hurt.

This morning, my head hurts, too. If often does. The migraine is relatively low-grade today, but it needs heading off at the pass before it breaks into a gallop all over my brain, stomping its big blunt hooves into the softness inside my skull. I need Imigran. But what do I take first? My morning doses of steroids, pain-killers and hormones, or my migraine meds? They don’t work well in combination. The mixture makes a sour-faced cocktail, sullenly diminishing the required effects of all.

The Imigran nasal spray? Perhaps my ordinary head-pain steroid nasal spray instead? Or a tablet? Can I take a tablet, or will I have to take my morning pills much later to avoid the conflict? My migraine can’t be that bad, because evidently I am capable of thought.

But if it jumps up, if it’s merely lying in wait so it can later sneak up and smash violently into my head in a blaze of searing pain, it will need an injection.

I can only choose one option.

I have only one life left in this video game of Migraine Wars, and to pick the wrong choice of weapon means a day of Ben encasing my head in ice-packs, of swollen eyes, nose and mouth, of nausea and vomiting, of feeling my head is about to literally explode, and repeatedly losing consciousness, of yet another lost day. What should I do? Which weapon do I defend myself with? What’s my best choice?

I go for the middle option, the mid-power weapon of the tablet, and pray to the universe it will be enough to blast the migraine into oblivion.

Now I must wait at least 20 minutes before I can take my morning pills, including the pain-killers my muscles and bones are pleading for.

20 minutes is a very long time when you’re in pain. 20 seconds is a long time when you’re in pain. But I must also now wait at least an hour before I can take another Imigran tablet, or I run the risk of a serotonin storm. If I have made the wrong choice and needed to have plucked another, more powerful weapon from my available migraine arsenal, I could be in serious trouble, both pain-wise and serotonin storm-wise.

So I must wait. I must hope I’ve made the right choice. And I must wait at least an hour before taking another tablet, and then that’s the maximum allowed in any 24 hour period, so if it only pretends to be dead from two tablets and leaps up in renewed anger at my attempts to obliterate it, I will be up shit creek sans paddle. I must wait through another 60 minutes of potentially increasing, brain-bashing pain before I will know if even stage 1, tablet 1, has worked.

I must also wait out that 20 minutes before I can take my morning meds, and all these different areas and types of pain are currently competing for supremacy.

And, dammit, now my lower gut is cramping, and I must of necessity find my way to the bathroom. Fast. Ben stirs besides me, disturbed, no doubt, by my shiftings and reachings out to my meds drawer, for my bottle of water. I feel nauseous. I reach for the anti-emetics. Ben awakes.

“You ok?” he asks sleepily. Poor Ben. He works impossibly hard to try and take care of us, of me,  of our little family of three unbelievably loving yet demanding cats, of our home, our bills, our everything. I hate breaking his sleep. He needs every minute he can get. I worry that my illness is making him ill.

“No,” I admit, reluctantly.

He sees straight through any attempt at denial and I long ago learned it is futile to try. I have a transparent face. – Put me on a stage, or in front of a camera, or any audience of people who don’t care about my illness, and I can deliver a convincing performance of Ok-ness. If they gave BAFTAs and Oscars for “Best Performance Of Ok-ness”, our shelves would be heaving under their weight. I am a consumate actress in this field, as so many of us are.

But in real life, to those close to me, to those few who actually give a damn, I can’t pretend. I am incapable, apparently. So I reluctantly tell him I’m not Ok, that I need his help to get to the bathroom.

Uncomplainingly, he gets out of bed, comes round to my side, and lifts me out. He holds me semi-upright from behind, hands me my stick. We shuffle to the bathroom. We yank my pj bottoms down, and he lowers me on to the toilet. He tells me to call when I’m done, or if I need anything. By unspoken agreement, he leaves the room and closes the door. I am embarrassed by the noises and smells I know are on the way. I am embarrassed by my body. I am betrayed by my body.

I hate that.

I realise I should take my IBS meds, too. So many pills, so little time…..They will have to wait until the Imigran has kicked in, which might be never. Oh well. At least that 20 minutes I have to wait before taking my other meds is being put to use!

Eventually, it stops. The gurgling, the gushing, the violent evacuation of whatever my ridiculous digestive system has taken offence to this time. I call out for Ben. He comes back. We reverse our earlier process and he lowers me back into bed. It’s now gone 7.30am. He hands me my morning pills, and the yoghurt drink I take them with. I take them. Coffee is on the bedside drawers, but I still feel too nauseous to drink it yet. But that’s Ok, because I don’t mind drinking cold black coffee later.

Luckily, the Imigran has kicked in while I was in the bathroom. I’ll be sleepy for the rest of the day now, so in that sense it will still be another unproductively wasteful day, but if it’s zapped the migraine assassin then I’ll take that. Now I have to wait for the steroids and pain-killers to start working, and I can take my anti-spasmodics for my knotted guts a little while after that.

While I’m lying there, contemplating the complexities of multiple symptom management, wondering at those less fortunate than I, those who have to juggle more meds and more conditions than I have learnt to, I get to thinking about mornings, and how they have been horrible for almost as long as I can remember. Once upon a time, I know there was a time when I could leap out of bed, eager to up and at ’em, eager to get to my horse before school, eager to be doing things, learning things, achieving things. But that was what, 4 decades ago? I can’t pin-point exactly when the last time was, more precisely than that. And even then, it was inconsistent. But I coped. I was an achiever. Now my biggest achievement is getting to the bathroom ahead of an accident, or successfully juggling my meds. Sleep leaves me exhausted and in pain.

But if sleep gives me so little discernible benefit, why do I sleep at all? Why am I going through a period when I am sleeping more than I usually do at night? What’s the point? What does my body get out of it?

Why do I feel worse when I wake up than when I went to sleep? 

What am I doing wrong?

Short answer is that ibromyalgia prevents us from entering the restorative stage of sleep, the Stage 4 Deep Sleep that everyone else slips easily into night after night. They might be exhausted by their lives when they fall asleep, but they wake up feeling refreshed, better, ready for the day, ready for activity.

We don’t.

I’m so jealous of that ability. I used to have it, and then I lost it. I don’t know what I did to chase it away.

Time asleep is also the longest time we go without our meds, so our symptom relief, if any, is suspended. Which brings me back to my original question:

Why do I sleep at all? What’s the point?

And fat, hot tears of desolation slide out of my eyes.

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6 thoughts on “Endlessly Relentless.

  1. I can identify with most of this, but I have one more sleep problem. I have sleep apnea so even if I get more than 30 minutes at a time the sleep apnea is waking me up. I am not sure how I keep moving around. But right now I am having a sleep problem . I am sleeping all night, and all day and still feel heavily exhausted. I had to cancel an appt because I couldn’t drive like that. I felt drugged more than usual. Hope you get some restful sleep soon. Just like I would like some restful sleep. I feel like a freaking zombie right now. I want to answer a few of these while waiting for the room to cool down.

    Liked by 1 person

    1. Poor you. I think sleep apnoea does the same interruption to deep sleep that fibro does, so I understand how dreadful you feel.

      Have you had a sleep study yet? There’s a mask thing they use over here, can’t remember the name for it, MCAP or something (or maybe not) but you sleep in it and it keeps your airways open. I think it gives you oxygen as well. I know apnoea is successfully treated with it. I tested negative for apnoea. They gave me an oxygen monitoring kit to use at home one night. It’s just a thing that slips on a finger, and it stores info about disrupted oxygen supply throughout the night you use it for. Could be worth looking into.

      Disrupted sleep, whether we realise we’re being disrupted or not, is a huge problem that causes multiple knock-on problems too. I hope you can get it sorted out soon.

      Thanks for your kind words, as always 🙂 I’m on a permanent wish for restful sleep for myself, and wish the same for you too.

      L. X

      Like

      1. I have had 3 sleep studies and I use a BiPap machine, but not much use if I can’t sleep. It won’t work if I am not sleeping and waking up every 15-45 or so minutes is probably useless. I need to talk to my pulmonary dr in July about it. Maybe they can raise the amount of air it puts out. That might help.

        Liked by 1 person

      2. Hmmm, bummer. That name sounds different from the name I’ve heard here. Maybe there are different machines/ masks? Or maybe upping the oxygen, as you say, will help. Keep me posted.

        L. X

        PS Can you bring that appointment forward? You’re obv going through an extra-bad time with the apnoea right now, so every night will just make it worse. X

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