Sunshine, Sleeplessness and Soporific Solutions

I hope you’re appreciating my post titles of late, they’re jolly good, don’t you think?! 😁. 

On Friday evening I didn’t remember that my productive day would lead to a pain-filled night, courtesy of my #spoonie conditions, and so I failed to take the double dose of medication that should have ensured that I slept regardless. Consequently, I spent the entire night awake, not even the beautiful tones of Neil Nunes reading the Shipping Forecast could placate the pain. I distracted the night away by reading and making occasional writing and journaling notes.

I took my daily digestive disorder medication around 8am yesterday. Breakfast was a treat of two cranberry and sultana hot cross buns and a large mug of tea. My ‘spoonieness’, exacerbated by lack of sleep, had me feeling very nauseous, weak, unsteady on my feet and fatigued. I climbed back into bed and with pain finally easing quickly fell asleep. 

I slept for around five and a half hours until 4pm. I really dislike sleeping, even napping, during the day. It doesn’t fit with my orderly seize the day attitude. Going ‘against the grain’ is a requirement of living with chronic illness.

On waking I worried that I wouldn’t be able to sleep that night but then determined that I would. 

I did some low-level activity, made and enjoyed a tasty dinner of two vegetarian sausages, root mash (pre-prepared) and peas, while silently rejoicing that this week I’d had the means to organise, fund and receive a supermarket grocery delivery. I emptied the dishwasher and washed some glass jars that I’d soaked for a time. 

Later I did some writing, messaged a friend via social media then watched some telly on my tablet.I’d taken a double dose of my Fibromyalgia medication and soon felt sleepy. Pain grumbled then roared in my legs. I teetered on the edge of sleep, too drowsy to be of use to man or beast, automatically manoeuvring said legs in the manner of physiotherapy exercises hoping to gently soothe my sacroiliac joint and attendant pains. Thinking about that I realise that in my prone and feeble state I’d make a easy meal for a beast, so some use then … 

At some point, soon after midnight I think, I dropped off. I woke briefly at 9am this morning, conscious but too groggy to be coherent, I quickly succumbed to sleep again. Next I woke at 1pm … really 2, since of course the clocks leapt forward overnight. Praise be for my automatically updating mobile phone and tablet computer. With a fancy for the horological, I’ve more than a few clocks to alter. 

I caught my heart just before it sank at the realisation of another day half slept away. No matter, we’ve got this, I told it, or at least I encouraged myself with a general sense of that.

Blogging and a bath are the priorities of the remains of the day; insistent period pain and associated digestive consequences an unexpected companion. 

That significant post that I mentioned the other day really needs to be written today as it’s a vital part of the process of trying to finally secure support, that process shifts up a gear tomorrow with a visit from my advocate. 

It’s been a weekend of sunshine where I live: all clear blue skies and brightness. I’ve witnessed it fleetingly through my kitchen window. I ache to be out there, on a sunlit and ‘spring-embracing’ walk, but I shroud that desire and, to cope, focus instead on my alternative sunshine. I have food, I have some contact with friends, I’ve slept, I’ve been reading, I’m cleaner, I’M WRITING AGAIN, a vital meeting is set to take place tomorrow, I think there may be hope; there may not be enough hope. I’ll concentrate on the first part, leaving the latter part of that sentence – oh God, how it feels like a sentence to be served –  to languish in the fog

Dear Reader, I wish  you some sunshine of your own. 


Too much? Too bad!

If you read this post I hope that you’ll forgive me the cheeky title :).

I’m aware that I’m suddenly posting very frequently, and apologise if you’re trying and struggling to keep up but I can’t stop just now because it’s doing me good. 

I don’t know how long it will continue. I’ve often aimed to post daily but have rarely managed to post even weekly. The last thing I expected this week was to suddenly find myself posting several times a day!

It is really helping me, by providing me with an outlet, giving me a sense of connection, and it’s also helping me to celebrate my achievements and keep motivated. 

 

Eating Insoles

Since I posted Terror earlier this evening, or rather yesterday evening as I’ve just spotted as I write that it’s 12:01am, I’ve ventured into my kitchen, consumed a catarrh pastille, made up a large jug of powdered skimmed milk in the absence of any fresh, taken my daily medication for my digestive disorder, written and published a second blog post and fiddled about with some of my blog settings. 

Said catarrh pastille was rather pleasant, at least in the context of I’ve failed to clean my teeth for almost two weeks, I haven’t eaten or drunk amything in at least 24hrs, my mouth is like the bottom of the proverbial budgie’s cage … this pastille is nectar! 

Said meds should be taken first thing every morning, at least 20 minutes before I have anything to eat or drink. My usually highly organised routine went out the window as crisis took hold and continued to deepen. 

The powered skimmed milk is entirely palatable. That is except in tea or coffee, alas. It will be far more enjoyable than the Sainsbury’s ‘Basics’ Cornflakes which I’m about to pour some of it over. They taste rather like I imagine the insole of a shoe might taste … 

I’ve smiled more than once while writing this post. I amuse myself if not others 😉 . But, to be serious, I haven’t been able to smile in quite some while. I am aware that those very real terrors have not diminished let alone gone away, and that desolation still lurks with terrible menace, as though it were ready to pounce and suffocate the life out of me.

It seems that this evening since writing that first post, I’ve managed to make a space in the fog to just be for the time being. 

Inspired by an earlier commenter, I’ve also delved into my bedside drawers to retrieve this lavender sachet – a one-time gift – and am ‘partaking of its aroma’ at intervals!

Champions

This is just to say huge heartfelt thanks to those who leapt to comment on my previous post within mere minutes, seconds even.

I’ll try to reply individually but please pleaae please know that each one of those comments is the equivalent of a life raft or a chink of light in an impossibly long and dark tunnel.   

If you’ve never been alone in the world, without anyone in your corner, wirhout anyone to whom you can say “I need help, please come now”, if you’ve never been desperately vulnerable and at risk, then your value here on this blog might be difficult to appreciate. I’m telling you that it’s priceless. x 

Terror

In light of the day’s devastating events in London, that title might seem crass …but it is what I’m feeling, little me, in bed, at home, facing my own terror. 

I’m torn between terror and desolation, or perhaps I’m feeling them both at the same time. It’s difficult to tell; I’m very disconnected, dissociated perhaps. It would take many more words than I could manage to write now to explain it.

That disconnection makes it very difficult for me to blog. I’m trying. There’s a dense fog obscuring my communication highway and terrors lurk within in it. 

If you read this, let me know you’re there, it will help. 

More soon, I hope.  

Thank you. x 

Daylight and a whiff of fresh air

It’s 6pm. I’m sprawled on my bed, tapping this out on my phone, squinting because I’m tired and I’m not wearing my specs. 

I’m feeling sore (meaning in this case in pain rather than angry or grumpy, should I happen to have any American readers :)) but I’m also feeling accomplished.

And here I relent, shift myself to close my bedroom window and the window blind, before putting on a light and then donning my specs after cleaning them. 

It’s not easy to type a blog post on a phone when you need to hold said phone at arm’s length to prevent the text from becoming blurry. I really need to visit my optician. I was due to have an eye test last June but have put it off because for now I can’t afford to buy a new pair of glasses.

Still, I digress, I’m feeling accomplished because I’ve had a productive day … although perhaps not what many people would consider all that productive or fruitful.

I spent an hour detangling my dirty matted hair; cleaned my teeth and took a shower for the first time in a fortnight, before getting dressed.I stripped my bed and threw open the bedroom window, giving me my first clear sight of daylight and.hint of fresh air in two weeks.

I liberated my kitchen from under the detritus strewn worktops by way of three dishwasher loads, a sinkful of dishes, and much wiping and tidying. 

With seven extremely brown bananas begging not to be wasted, I baked a quick batch of banana and oat bars using four of them (I’ll make a banana loaf tomorrow to use up the rest), four cups of organic porridge oats and eight tablespoons of milk. They make a healthy snack. They’re pretty irregular in size, today was not a day for perfectionism! BBC Radio 4 was a very welcome companion, particularly the engrossing Resistance by Val McDermid.

I cleared and dealt with the mound of mail piled behind my flat door, and organised a batch of recyclables.

I composed and sent vital emails to my physiotherapist and a local advocacy service. I’ve crunched my way through  a bowl of cornflakes, quaffed a very large mug of tea, and scoffed a couple of the banana oat bars. I’ve blogged … twice!

I am very tidy and very organised and other people often describe my home as immaculate. I care about and take care over my appearance. I’m also resourceful, driven and very self motivated. Exceptional circumstances left me unable to take care of myself or my home in recent weeks. Whatever you might imagine, I doubt that you could guess correctly … 

And on that thrilling cliffhamger, for now I must stop writing for the sake of my increasing pain levels, and your attention span ;), and I must remake my bed before I seize up entirely! 

See you anon … 

I am awake and content to be so. 

I’ve woken this morning, for the first time in many days, without the feeling that I can’t bear to be awake.

This morning I did not so desperately clamour to again escape into sleep that I forced myself away from wakefulness and into a half sleep, punctuated by nightmares of the darkest variety. 

This is progress.

***** N.B. Hello again dear readers. It’s been a while since I posted, and there is quite a story a tell. It would be too large a task to try to bring you up to date all at once, and it would certainly overwhelm me, and perhaps you too. With that in mind, I’m going to do as a middle-aged American woman, with a passion for fly-fishing and a plethora of strategies for overcoming the overwhelming, once told me … don’t try to catch up, just jump in where you are. I trust that in doing  this the fuller story will, in time, unfold. This is likely to be one of many ‘bite-sized dispatches’. In the meantime, I’ll just say that it feels good to be back and that I hope you’ll encourage me in my quest to post regularly. *****