Exhaustion, Fibro Life, Fibrolmyalgia

I Just Don’t Know What To Do With Myself

The last few months have been worse than before.

The last few weeks have been worse still.

The last few days have been the pits.

I’m just so tired. 

My brain feels like it’s trying to waddle through treacle. Thick, sticky, treacle. I can usually work out what I need to do to take the edge off the latest arrivals to the Party Of Fibro Symptoms. I can usually find a particular med, or a particular supplement that makes me feel better. I’m used to managing my symptoms. Dammit, I’ve had enough practice over the three decades I’ve been dealing with this .

But the last few days, I haven’t felt *just* fibro-ill. I feel ill-ill, like acutely-something-wrong-ill, as opposed to chronically-ill-ill.

And that scares me.

My insomnia has been replaced by sleeping like a corpse. Whereas before, my norm was to fall asleep for a few minutes or maybe an hour at a time from 11pm onwards, and finally “go to sleep” at dawn/ 4-5am, now I’m falling asleep at 11pm, waking up briefly then properly passing out by midnight. I’m not waking in the night. I’m not even waking when B brings me coffee and my yoghurt drink to take my morning pills with at 7.30am. I’m still asleep, buried deep inside a black blanket of unconsciousness, when he brings me breakfast at 8.00. It got so bad that we had to change my breakfast to a completely cold one. Congealed scrambled egg is never appealing. Plus, I’m waking up feeling even more nauseous than usual. I have to take my meds, plus some anti-emetics, before I can contemplate putting anything else in my mouth.

Then, when I’ve eventually dragged myself free from the clutches of the big black blanket, I find I’m in tears. I force my breakfast down me. I take my supplements. I try to keep the blanket off me, I push with all my might, but it takes all my strength; I fall asleep again.  I don’t wake for hours, sometimes not til tea-time. I’m sleeping all night, then again til 4.30pm. Then I’m asleep again – properly tucked-down asleep as opposed to dozing sitting up sleeping – by midnight.

I’m sleeping up to 20 hours a day again, just like I was when all this very first got critical, back in my thirties.

Yesterday, I had to buy, write and post Father’s Day cards, and a birthday card. A simple matter of stopping off en route to the doctor’s where I was already a week overdue for collecting my monthly meds. I was to get cards, go to the doctor’s, collect my meds, order next month’s, come home, write cards, address envelopes, stick on stamps, and get B to post them in the very nearby post-box that I can only make it to on a really good day.

I managed the cards very quickly. I was slightly waylaid by a conversation with a fellow blue badge holder, over a mutual rant about non-disabled drivers taking up the disabled spaces, but nothing lengthy.  She was a pleasure to talk to.

I got to the doctor’s, but by then was so utterly exhausted that for once I was completely unable to fill out my repeats. My brain just wouldn’t do it. Waddling through treacle, it refused to even look at the forms. It was too busy concentrating on how to take the next step forwards to start mental gymnastics, even the low-level, forward-roll type gymnastics of ticking boxes. I came home, went straight back to bed and fell asleep til tea-time.

I fell asleep again after tea. Woke up at 9pm. B was working late, so we broke our usual 9pm meet-on-the-sofa agreement and got there at 10pm instead. He posted the cards for me before joining me.

We were back in bed by 11.30. He was asleep immediately (he always is), and I was asleep by 12.30. Practically unheard of for me. I was always a night owl, even before insomnia proper was booting me up the arse on a regular basis.

I had nightmares. Horrible, violently imaged nightmares.  But I did sleep through. And then found myself smothered by that big, black blanket of exhaustion and depression and sleep this morning.

Was it because I dared to go “out” yesterday when I felt too ill to do so? Was it the conversation in the car park? Was it buying and writing the cards? Was it something I took? Something I didn’t take? Something I took too much of? Too little of?

I had to go again to the doctor’s today. Monthly blood test time. Ordinarily, I try to combine the visits. I collect scripts/meds when I have a blood test or my monthly GP appointment, but this month I’ve been so ill that I was over a week late collecting my meds, and had to make an emergency run yesterday. I only noticed I was running out of essential stay-alive meds when I realised my pot of them was nearly empty on Wednesday. I’m never late collecting them. Never.

I was too ill to do the repeats yesterday, so told them I’d bring them in today. Fat chance. I was too ill today too.

The first thing that penetrated the black blanket this morning was pain. I seem to have pulled a muscle in my shoulder during the night.  Then nausea. Then gut cramps.  Then my mouth tasting like a dirty bird cage. Then enveloping exhaustion. Then tears.

Much later, I dragged myself out of bed. Dragged some jeans and a sweatshirt jacket on over my pj’s. Dragged myself in for bloods. Sat in the waiting room, with my stupid rollator, head resting on my arms, arms resting on my rollator’s padded handles. My arms hurt. My legs hurt, being shoved under the seat of my rollator, where I had to have it close enough to lean on. Tears rolled down my face.

My nurse was running late. She’s lovely. She took my blood, with the minimum of pin-cushioning (she’s the only nurse out of the 5 there who can successfully cajole blood from my recalcitrant, chemo-screwed veins) and sympathised with me.

I was still in tears on the way out through reception. The equally lovely receptionist intervened with The Tissues. Another receptionist joined in her efforts to comfort me.  I just don’t know what’s wrong with me.

I just don’t know what to do with myself.

When I got home, B took one look at me and put me gently back to bed, practically having to carry me upstairs.

“I hate this. I just want to be normal,” I sobbed.

All efforts at staying awake failed. Despite managing to make a couple of comments on here first, the black blanket smothered me again. Again, I woke up to B standing there with food on a tray for me. Again, I felt sick, tearful, in pain, exhausted,  I’ve slept more than 12 hours already today. Even the phone ringing didn’t wake me up. I vaguely heard some distant noise, but couldn’t surface. I just couldn’t.

And I just don’t know to do with myself.

This isn’t a flare. Or if it is, it isn’t a normal flare. I feel too ill, too toxic, too exhausted. It’s taken hours to write this. I can normally write faster. I type fast, think fast. My downfall is usually that I have to keep going back and refining, editing, changing things. It isn’t usually that I can’t think what to say, but how best to say it.

But I’m smothered by a black blanket and my brain’s waddling through treacle, so if it’s just a bit rubbish today, please forgive.

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.