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My insomnia has been replaced by sleeping like a corpse.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.