Category Archives: Fibroplegia

Painsomnia

 | 15°C

Painsomnia… Aptly-Named...

 

For days… weeks(?)… I’ve been unable to say words in writing. My head aches at the mere thought of making sense of my Feels enough to attach actual words to them… 

Dailyos haven’t been filled in (will have to do them retrospectively… Somehow… Using this log…). Even this Journey Journal hasn’t been used for anything much more than a LogBook. 

I’ve found this to be a Notably Reliable Indicator of Depression. Not the bad kind… No. The Really, Really, Badly Fucked Up Kind.


What’s been happening over the past few weeks, along with the God-Awful bitter hopelessness of recent times, is ensuring my brain is being cemented into the Wonderland of my Mind… And it seems I am, once again, being packed up and flung down that Rabbit Hole, ready to be destroyed and torn to pieces all over again. 

Chaos. Fatigue. Exhaustion. Grief. Confusion. The inability to process complicated Emotional Feels. Not enough time to process Complex Emotional Feels. It all just builds up and up and up, until I’m so completely and entirely overwhelmed…

I am done in… Distressed. Frustrated. Overwhelmed. Frightened. Anxious. Wound Up. Agitated. 

I fear sleeping again. I’m not even sure if I know why…

I am am in such a physical mess… And not just the Fibro. Not being able to wash my body, or my hair, or engage in any proper self-care at all is heartbreaking. But it also has an actual knock-on affect in so many other ways, too. You cannwot get properly cleaned with wet wipes. You don’t get properly washed to prevent catheter infections. Taking all your clothes off properly means that heat rash, allergens, creams and oils, groom and backside areas get properly washed, rinsed and sluiced. 

I need to get some kind of grip on it… Quickly. Before it become next to impossible to wrangle The Beast back without an all-out war…

#anxiety #anguish #asd #aggitatedPowered by Journey Diary.

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Just… Isobar Nightmares Again..

 | 15°C

More Storms…

More Miserables…

More Skydiving Isobars...

 

This is what I have to look forward to Friday through Saturday, now…😟🤯☹️😖😣😥😢

 

… To make it worse, all of Friday is in the 900s too…

#weather #pain #isobars #anxietyPowered by Journey Diary.


Surviving Trauma with ASD

My Story… My Life…

The Second Time My World Imploded into PTSD…

When I was 34, literally my entire world fell apart. I was so ill I couldn’t move and was in 24/7 agony from Fibromyalgia, and after 2 years of this illness and 10 years together, my partner snapped and she sent me home to live with my parents. Actually, she asked them to come and get me.

Just one random day. She stopped texting me. Then vanished. Never came home. I freaked the crap out. Turns out she went to her mums house. I had to track her down. And her step dad was a bitch to me on the phone.

Then she told me everything was done, we were done, and she wasn’t coming back until, I was packed up and ready to go.

My. World. Died. And. Ended. In. That. Moment.

She took the last remnants of things I had left — and I had already lost the career I loved and the data migration project I was just about to start. And destroyed them. Just one random day. Just like that.

It was nearly 4 years ago, this November it will be.

It was utterly sheer hell. I didn’t know if or how I was ever going to survive. I was delirious with agony and pain, screaming and blacking out from it every day, my parents were yelling at me, screaming at me, doing other bad things at me. I had several meltdowns per day. Everyday. The worst ever kinds. I used to come round to disaster and injuries I had no idea about constantly. It was horrendous…

It went on for years… I tried to OD twice. Was in an ambulance for it. It was a waking nightmare of exceptional proportions.

I don’t know how or why I am still here… But I am. And, frankly, I’m proud of myself for that.

And I survived long enough to get a very special person back in my life. And it’s in a better way this time too …. 🤔

So… I get it. I truly undoubtedly do.

And, also, that is how I know that others can survive this. Because I have, I do. We do. Cos we’re strong and kick ass and have to take far more than anyone could ever frikkin imagine. All. Day. Every. Day.

💖💖💖💖💖💖💖💖💖💖💖💖
💝💝💝💝💝💝💝💝💝💝💝💝💝


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C.A.L.L. FOR Wales

FREEPHONE: 0800 132 737

TEXT: HELP & Your Question To: 81066

VISIT: www.callhelpline.org.uk



C.A.L.L. FOR Wales
🏴󠁧󠁢󠁷󠁬󠁳󠁿 Community Advice & Listening Line 🏴󠁧󠁢󠁷󠁬󠁳󠁿

🏴󠁧󠁢󠁷󠁬󠁳󠁿 C.A.L.L. I GYMRU — Yn Gymraeg 🏴󠁧󠁢󠁷󠁬󠁳󠁿
(In Welsh)

💜💝… With All The Love & Care That There Can Be… 💝💜


JUNE 2019 — Daily Mood Chart • Disturbingly Not Good… 😔

I use Dailyo diary and mood tracking app for this:

https://www.daylio.net

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… 🥺😞


A Futile Fibro Flare-Up Day…

Temp| 8°C

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. 😖🤕😣😔

 

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April 2019 — Dailyo Mood Chart Stats

I use this great diary & mood-tracking app… It was quite a good idea, actually, to help me with my ASD 🤔

https://www.daylio.net

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…?!




Catheter Chaos • Boots Discrimination Discomfort…

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

Catheter tubing, leg bag & Night Bag
The Reality of the Indwelling Catheter

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. 😒😒😒😒😒😒

Catheter tubing & Night Bag
This is what it should be doing… As opposed to shoving itself out of me…🤨😒

#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.