Today is already completely kicking my ASS after yesterday… and to make it worse it is STILL 982mb THIS MORNING — FFS…!!!!! …. Could up some bit of lung-fluid and sticky-icky stuff. Came up easily enough with a bit of Ventolin… Thought it was because I might have aspirated meds, but it didn’t seem to be the case.
Aspirated yesterday, last night, but I’m not exactly sure what it might have been or when…
After coming back from the bathroom I hate half of the Subway, and sometime in the evening I ate my usual pasta thing and Walkers Baked Crisps Combo…
When I’d been trying to manage some of my crisps, I think I was already starting the BlackOut Cycle I was going through because I needed to go to the bathroom… I could have done it then most easy.
…. Other option was a small bit of water I had earlier slipped past (a rarity these days, luckily). But it didn’t seem like actual water-type fluid…. That always feels… thicker, or maybe heavier — usually, anyway…
… And I think I must have aspirated at least some of one of them, because before I got into bed I realised my chest wasn’t OK and I coughed up a LOT of fluid — I think it was lung fluid and therefore there had probably been some very small food particles (this is the pattern, anyway) there.
It came up relatively quickly and easily, using a small bit of Ventolin and Lolli banging my back.
Back is Wrecked... Trying to get out of bed was BAD. The Pain is DREADFUL -- it's TOO MUCH... Been Severely Blacking Out. It's not OK At All...
In very big agony 😞 mega blackouts can't really move at all... It's REALLY REALLY BAD... FND is OUT OF ITS FUCKING MIND... Fibro is having a FUCKING BALL ... Vestibular Migraine Set Off Like A Rocket....
BUZZING HELL... Can't see very well -- Vision is SO Damned Blurry, Moving & Jumpy...Dizzy & Disorientated... MEGA PAIN...
I am SERIOUSLY PAYING for going out yesterday… Just a GODS-DAMNED HOSPITAL APPOINTMENT… But now I have to suffer for Days… (Weeks…?) for the Privilege of being able to Go To The Sodding Hospital.
A day that started at 7am and didn’t finish till ALL HOURS of the MORNING — around 3am. For a 2pm appointment in a hospital that’s over 20 miles away. So, that’s what… 20 SHITTING HOURS of being UP and BEING ACTIVE and frankly Suffering, because ALL of it is NOT EASY Whatsoever.
Leaving the house to go out anywhere reminds me more of trying to get everything together to take a newborn infant out – swathes of Bags, Things, Nappies, Bottles, other required baby-things based on specific little thing’s own person needs… and it’s the same for us.
Detailed scheduling and plans are made at least 24-48 hours in advance. We go through 2 or 3 long checklists, depending on what we are doing, or where we are going. It’s Time Consuming & DRAINING, when it’s already bad enough you’ve got to give EVERYTHING you have just to Get Out Of Bed. To Get Dressed… and in easy to wear clothes, not nice clothes. To [at least try and] brush your hair — Forget makeup or making your hair actually nice.
I need enough stuff to warrant a large backpack, which I carry on my wheelchair. Healthcare & Medical Stuff is large, bulky, badly designed, and made without any effort to make them look either nice or proportionally space-saving. Also Multi-Devices are packed, along with Charging Packs and leads, because who the hell ever knows how long they’re actually going to BE at a hospital, appointment be damned…?
That’s on top of other vital things. Of having to remember them. To pack them. Of making sure NO Mistakes are made, because those mistakes will be anywhere from COSTLY to REALLY, REALLY BAD to DANGEROUS. We know. We’ve been there. Got burned, traumatised, overwhelmed, panicked… In need of IMMEDIATE Intervention. You Name It, we’ve had to deal with it.
I’ve been doing this TEN Years… And believe me, does it only NOT get Easier, it gets MUCH Freaking HARDER.
…The only thing I can at least say now is that I don’t have to take my Emergency Catheter Change Kit with me everywhere anymore, and relegated only to places within a certain distance of a hospital with a functioning A&E department to make the replacement.
I don’t sleep the night before or the night after. I am utterly, OVERWHELMINGLY TOO ANXIOUS, HYPER-SENSITIVE, OVER-STIMULATED, IN SEVERE PTSD, IN AUTISTIC OTT TMI [Too Much (Sensory) Information], OVER-PUSHED & UNABLE TO SETTLE WHATSOEVER.
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