C.A.L.L. FOR Wales
Category Archives: Fibromyalgia
I use Dailyo diary and mood tracking app for this:
This just about says it all… 😞😖😢
When you are going through it, it’s bad enough… But to see it like this… You really do get to see “in black and white” as it were…
It was terrible to go through. It was a Hellish Month! 😰😖 … I hope that this next month will be at least somewhat better.
I’m not holding my breath or anything, though… 🥺😞
Costa | 23°C
In Costa again… Oh, Frikkin Gods.. What a Morning… 😩😖🤯😣😱☹️ ‼️
I have been through the ringer… Drained of everything and more that I have, and have ever had, inside… I’ve been pushed beyond what I am really capable of coping with, dealing with, managing…
S pointed out that, Regardless, I am still managing it, because I am not actually having a Meltdown.
That’s… fair. I’m not. But it’s WW3 inside me and it’s suffocating me… 😖😣 … crushing me…
It started with sleeping in. Until nearly 1pm…! 🤬😱🤯🥺
After the last few days, and some careful planning of the day, that was so entirely unacceptable!! 🥺😖😖😖 Dear Gods, we were supposed to be in the shopping centre by then!
It destroyed my insides… Wrecked them apart and tore them, like an IED went off inside… This is was the Dragon of Disappointment going bananas inside me, and burning everything that I had inside. I was done…
Somehow, S soothed me enough to help me wrap some kind of shell around the devastation, and allow me to at least try and function. Slowly, I got dressed and even managed a little makeup (even if it wasn’t exactly… great).`
However, it was late when we got out. Around 2:30pm. It was so hard for me to process this. My reasoning was, in the main, that the extra sleep — for me, at least, — was utterly pointless, and a complete waste of time.
To my horror, I had inadvertently squandered precious time outside, to sticking to a good plan for a nice and relaxing day outside — and instead spent extra hours in bed sleeping.
I have Fibromyalgia, and the symptoms that are the basic foundation of Chronic Fatigue — there is no way in hell that any of my sleep was going to be helpful, restful, recuperating, or healing. So, any “lie in” was a complete and utter waste of time.
This bugs me so much… I try to work so hard to master this damned curse inflicted upon my mind and body… and yet, still, it manages to somehow get the better of me, when I am at my weakest, to wreck havoc with my mind.
The Dragon of Disappointment is merciless… Fear and Cold Terror turns everything white and frozen… Panic and Horror make everything explode like devastating fireworks in an oil rig — leaving nothing in its wake but ashes and embers and ruins…
It all makes my Aspic/Autie brain hurt. It goes into hyperdrive, and then destroys itself completely, and then everything else along with it.
It turns it into a blabbering mess; a pile of burned ash, slushed into a soggy mess in the torrential downpour of the storms that harm it so greatly… Until there is nothing left, and I am naught but a shell of emptiness and a robot in Shutdown.
It might be marginally better, and less destructive… but only on the outside and to other people… But it is still a horrific and destructive and Traumatic thing to endure, nevertheless.
It leaves its mark. It leaves it deeply — because it is not flung out into the Nether, like things are in a Meltdown. The Meltdown blows its top, and violently expels everything that you find within it that has hurt and harmed it so much, it has done this.
A Shutdown, however, Implodes, scarring everything inside, blowing everything on the inside, causing the devastation there instead. Arguably, to me and my mental health, it is worse. And even worse than that… Nobody can see it…
I’ve done nothing to deserve all of this.
I’ve bent over backwards, and all ways, to try and be good, try and contain myself under extremely stressful and frightening circumstances.
And yet… More just keeps coming. 😖😖😖
I think I am aware now that it will probably Never End… But this Warrior is tired… Needs a little R&R from this… war of ill-health — of a broken body, a broken mind, and a broken spirit…
#scared #helplessness #angry #blackburn #irritated #premierinn #miserable #imprisonedfeels #furious #overwhelmed #trauma #alexithymia #dragondisappointment #exasperation #despairing #anxiety #panic #drowningfeels #fatigue #asd #confused #resentment #aggitated #dismal #caredfor #frustration #stressed #sara #exhaustion #upset #fibromyalgia #agony
Still can’t think beyond the pain. My brain is zoned out.
I’m in no shape of, or for, anything.
Done naught but a few words in Daylio and Jouney Journal, then blindly and mindlessly poking around the internet a little.
Somehow, it’s now 5:30pm. I have no idea how that could have happened. I wanted extra meds to help play Skyrim. Guess that didn’t work out.
It’s horrible outside. Cold, rainy, high Humidity. The isobars are decent-ish at 1016mb. I’m so cold… But I can’t move, and in too much pain to do anything about it… 😣🤕🤨🥺
There are a few emails on my system now that I haven’t read. Refused to read. There’s 2 about the Boots thing, 1 about the Ubisoft problem with Assassin’s CreedUnity (the downloads run at 3mb/s & then the game won’t load anyway), and 1 from Sophie the OT regarding people coming here to install my shower.
I’m too scared to read them. Or, more specifically, I’m way, way, way far too way into OTT & TMI to cope with facing them or processing them, let along answering them…😟😣😢
I don’t know where the “Me” who used to jump at all correspondence, had Zero outstanding emails in her inbox, is avoiding messages and has nearly 7,000 “unread” emails in her inbox 🤯😫😟… 💔
… I could really do with her right now…
I’m in 9.95 Pain… I can’t think past it, or of anything else, and my mind is blanking to try and deal with it…
- I’ve been rushing around checking into, and booking, Premier Inns…
- Mentally preparing for the crapload of Appointments we have to deal with and somehow manage through in May, including 2 big hospital appointments far enough away to require overnight accommodation…
- I’ve had to deal with the last minute Car Tax thing and go out to do it, causing this latest flare up of agony (because I don’t have a shower)…
- My glasses got snapped in half, and I had to circumvent my immense panic and Dragon of Disappointment long enough to get new ones.
- I’ve had a good couple of mini-ish Meltdowns caused by other people…
- My Catheter came out after only 6 days, and at 10:22pm, of all times… Late at night is *never* good; at least the nurses are great 👍🏻 🙂🤕
- I’m even more exhausted because my mattress was being mean to me, and causing several nights of extreme pain and nightmares.
- I flipped the big Hypnos mattress with Dad, and had to empty and redo the bed with Sara.
There’s been too much stuff, way, way, way too fast. Too much pain. Too much chaos. Too much… everything-too-much-on-top-of-everything-else.
NB: I think the new Food Plan is going to have to go in the bin, for today. There’s no way I am eating between 6pm and 7pm when I am like this. I’ll need at least 6:30pm meds to have kicked in, as well as an extra mini-dose of Oramorph, to manage to eat anything.
Before 8pm, food has no chance of happening. 😖🤕😣😔
I use this great diary & mood-tracking app… It was quite a good idea, actually, to help me with my ASD 🤔
Well, I’d probably say the graph says it all, how my last month went. Seeing it like this, though, is a bit of an eye opener. It’s really no wonder I am a mess, of this kind of emotional chaos is what I am living with… I think this was what I wanted and expected out of using Dailyo — but it’s rather different when it ’s actually there, right in front of you.
The only shame is you can’t sync it through different devices… that part is annoying, but the rest of if it is pretty great, actually… 🤔🤨😎
It’s disturbing how all-over-the-place the peaks are. It’s there, in front of you, undeniable. It wasn’t OK. It was Chaos, Brutal, Upsetting, Difficult, Emotionally Unstable… Destructively Unstable… I realise now how strong, stubborn, I’ve had to be, in the wake of that chaos… The reason I am so, so very Exhausted. Run-Down. Severely Hyper-Vigilant & Easily Startled. Anxious As Hell 24/7.
The last thing someone who craves… Needs… emotional stability, is this… I am ASD, with (probable) Alexithalmya. What I need is is for that to be solid in Green.
Green means Neutral. Not Happy. Not Sad. Not Scared. Not Angry. Not Anxious. Neutral. What I’m seeing is, quite frankly, the exact bloody Opposite!
I am aware there is no ideal, per-se… However, it cannot be too much to ask that it remain at least somewhat in the Green/Neutral area a little more than twice in one month…?!
Temp | 11°C
The Catheter just came out again…
It lasted only 6 Days, this time… 😳😔☹️
It’s so annoying, having to undo all the straps and sort through all the tubing, and whatnots, when disposing of a shoved-out Catheter.
Then there’s the Dragon of Disappointment, and all the other damn “emotions” and crushing, suffocating “feels” that go with it.
… Certainly makes me more determined to get a good meeting out of the Suprapubic Pre-Op Hospital Appt. next week…
I really feel… horrible… Betrayed, almost, by the damned thing. Strange, but true!I thought I could at least make it through another month, but apparently not. My stomach is all knotted… I feel something… crushing, twisting, fiery, scratchy, bitter… upset…😢
I am not in the right space for this to happen along with everything else… 😖😖😖
I was miserable enough without this…
It’s been spasming all day. No doubt due to all the stress I’ve been under. Or… maybe more like I put me under… 🤨🤔… 😒😒😒
Between fearing the arduous and overwhelmed task of flipping the mattress, and the issues I’m having, now I’m arguing with Boots about whether or not people in wheelchairs should be treated better than naughty puppies, I’ve been in a lot of depressive misery today.
Boots made me feel small, pointless, miserable, undignified, insulted, belittled… Vulnerable… I’ve been in scared and sorrowful misery all day.
But then I got some balls and got going with sorting out the mattress, because there was No Way I was sounding another night like I had been, in that much pain. I’d had enough painful nights and nightmares, and last night was the final straw.
But I guess it was too little, too late, and the stress of all of it was too much…?
Either way… The bastard thing is out again. 😒😒😒😒😒😒
#upset #frustration #fatigue #exhaustion #fibroplegia #dragondisappointment #irritated #sad #pain #dignity #suffocatingfeels #catheter #fibromyalgia #anxiety #aspie #healthcare #alexithymia #stressed #dismal #depression #resentment #helplessness #disabilityPowered by Journey Diary.
Well, Storm Hannah has well-and-truly landed here… My entire body feels like it’s being crushed and outside the wind has been playing up something terrible…
Oh, the lovely Horrible Hannah…
I truly am in a boatload of pain. Now, between the big storm and the bed that was supposed to help my back but is now hurting it, I’m not even really functional. And my fingers are on another planet of horrible, with all kinds of Paraesthesia running rampant in them. Numbed. Achey. “Buzzy”. Severe Paraesthesia. Difficult-to-Impossible to move.
They can’t even type on the iPad screen keyboard properly, for here. Not just through function, but also because the electrical stimulation in the fingertips is what actually makes a touch-screen touchable. And when fingers are numbed they have a hell of a lot less of it, to make it work. 🙄
Today is clearly as frikked up as yesterday, and I don’t think anything is going to be right with this day, either.
Yesterday was all planned out… Until something went snap. We were going to flip the mattress, change the bedding, and make the bed not try to kill me with pain. I had a huge bag of beanbag beans come specifically for that day, so I could sort out the giant beanbag, and beanbag pouffe, to go with the nice, fixed-up bed.
I even had a Loot Crate box come. Although… I’m mad at them right now, for losing one of my boxes, then being an annoying bitch about it, going around and around, trying to wheedle out of any responsibility for it. I also asked to skip this current month’s crate, but they sent it anyway, probably because I bought a 3-month “subscription” from them.
So, the “skipped” one received is currently shoved in a far corner of the room, because I never really wanted one with a bunch of IPs that I’ve not even played, let alone a fan of, in the first place. And, to make it worse, the box is diddy.
Today is already going the same way. So much Pain. Cold. Storm Horrible outside. Back, Spine (Skull To Sacrem), Fingers, Hands, Head, and Left Arm, all hurting and aching and being horrible a lot. My left arm being in such pain is different, and a bit of a Big Deal, as it does a lot of things… and I can barely lift a coffee cup with it. Not Good…
And on top of all that, Dad is out in the storm (with the dogs, if course…), rushing around trying to get emergency Tramadol for me from the Out of Hours system, because Mam accidentally ran out, and only realised last night that there was only enough for this morning in her box.
It was Friday night, so OOH was the only place to turn to.
Thankfully, they ponied up a prescription that could be picked up this morning, so after waking me at 10:30am, Dad left to go pick it up from the Hospital and take it to Boot’s to fill it. All ready in time for next Meds at 1:00pm.
Last weekend, it was my face. This weekend, it’s the Tramadol. I wonder what we’ll bug OOH for next weekend… 🤨😒😒😒
#medication #isobars #anxiety #dismal #weird #exhaustion #miserable #fatigue #weather #storms #healthcare #sad #exasperation #upset #outofhours #fibromyalgia #frustration
Weather | 11°C
Complicated. So Much… Too Much… Feels… Too Many.
… All over the place…
I don’t know what to do with them. They’re scary and confusing. I can’t even make sense out of, or even try to unravel, them…!
Nightmare day before it even starts. Managing to get to sleep (as in longer than 2 hour naps), on occasion, now, but dreams still come. Disturbing, or weird, or… unnerving ones. When Mam comes to wake me up, sometimes it’s a little bouncy for my sensibilities, and this was one of those times, unfortunately. I felt rather… rattled — but this is actually quite unusual for me. I don’t think I’ve reacted this badly for a while. I didn’t really do anything about it; I explained it to Mam — or tried to, at least. I don’t think I made much sense. This day was already off to a bad and complicated, confusing start.
Then the dogs were screeching everywhere, and no one downstairs was stopping the goddamned Wackadoos. Once again, I talked to Mam about it. But she got upset, and it all rather went south from there.
Mam came up, and when I tried to talk to her (apparently “in the wrong way”… 😕🤔😞 Which, for me, is unfortunately more common than I’d ever appreciate… 🤨😒), she started getting even worse with the defensive, the frustrations, and the squeaky “up tones”… which always makes me upended and upset, off any even-keel, and unable to cope. Adding that to the state I was already in before, and how I felt after this morning, and it was a nightmare waiting to happen inside my brain.
This escalated into a Meltdown Situation — just about managing to stay on the right side of sane(ish). One which I kept precariously balanced on the knife-edge of Full Blown Nuclear Volcano Meltdown, all furiously bubbling away inside me. It felt like a six-tonne boulder, that I could barely keep holding above my head. One that was threatening to fall onto my head. I was actually physically shaking from trying to keep it in check… It was agonisingly painful, both physically and emotionally/psychologically. I managed, sort-of. It stayed out of Meltdown Mode, remaining in the pending tray instead. Keeping a grip on it, keeping it up off me. I still don’t know how I succeeded.
To make matters worse, my friend S (kindly, compassionately, clearly, and “safely” … this girl should get a Bomb-Disposal medal for executing this so perfectly…!) informed me she had accidentally opened up an Amazon package that had been holding my precious birthday present — The SSD for my PC C-Drive upgrade, which has been put to one side, untouched and unopened, until such time I am ready to be able to upgrade said computer system.
… Now, I realise it should already have been done — going to Caernarfon was a big mistake, and I should have stayed home to do up my Baby. Now, he’s buried behind random stuff and mess, and I can’t get at him, to open him up and change the drives. Not only that, but because of what happened there on that “break” away, and how I am subsequently feeling because of it, I’m also in no psychological place to safely make the “brain transfer” that my Baby needs, between my original 120GB and the new 256GB SSDs.
Technically, that sanctity of that Gift has now been sacrificed after this mistake, and the packaging of the parcel is an opened mess… No More “Untouched and Unopened”… None of that for me now, for my Birthday Present from S… 🥺😫🤯😓😥 My First Birthday Present from S, with her being here with me. But, instead of being shocked or frightened by it, I am soothed and supported into hearing it and comforted whilst processing it.
This might be the first time that something usually so… catastrophic… does not go off and explode like an IED in my head. I’m upset. I’m horrified. I’m Hugely under the shadow of the Dragon of Disappointment. It smacks me hard, and it’s pretty awful that this happened. However, as I explained, it brought the Dragon of Disappointment, yet gave it nowhere to land. There was no Valley of Terror, Panic, Shock, Trauma, etc, for it to land in. So, he’s kinda flying around there, half-heartedly, until such time he gets bored and buggers off again. And I am free to just ignore him, because — although he’s there — he’s not really doing anything, nor (more importantly) Destroying anything.
Finally… Somebody gets it — Nailed it. The fact niggles, but it’s more like a bored and petulant huff in the background that you can’t really take very seriously. I’ll take it.
#anxiety #helplessness #frustration #ptsd #trauma #despairing #dragondisappointment #alexithymia #exhaustion #pain #depression #asd #lost #fibromyalgia #paraesthesia #drowningfeelsPowered by Journey Diary.