Tag Archives: fibro flare up

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.

Advertisements

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.


Keep Going…

Has anyone ever been through this before?! It’s not on the Internet if it is… or very well hidden! My catheter issues are exhausting me and causing even more pain than I already have… but without it, I can cope even less.

That point was proven yesterday, and part of the day before. And today, I’m really suffering for it.

Twice in 24 hours! I can’t believe it came out within just 8 hours… and I thought it coming out 24-72 hours was unnecessarily awful…! It’s caused unbearable pain, in me, who usually can’t really feel anything. I had no choice but to agree with them that the bladder and urethra required some time for R&R… even it it was just for a day, or a night.

After agreeing to leave the catheter out for as long as I could bare it, for at least 24 hours if possible, I did it. I tried and fought and it was horrible. Emotionally, physically, psychologically, it completely messed me up – which was something I did not require during a massive Fibro Flare-Up. Now I’m broken into even more pieces and too exhausted to barely move  – and don’t get me started on the fibro pain and even less moving parts than normal.

I lasted until 5pm yesterday, which is over 24 hours. It was a struggle, and… disgustingHumiliatingExhausting. Shaming. When you’re struggling to manage to change your own paper Grown Up Huggies Pull-Ups every 2-3 hours (if you’re lucky), struggling to move from a Fibro-Flare-Up, when there is no one to help you, when you’re stitting in your own ick because you just can’t move and are unable to – too exhausted to – change, and you don’t sleep. At all. Except for a short catnap between about 8:30 ad 9:30am… if that counts at all…

Eventually, I caved. I had to have it put back in. But it wasn’t happy from the start. As usual. By 1:00pm, it was already seriously trying to wiggle its way out. It’s pressing against… something, I don’t really know, I presume it’s something like the pelvic floor area, maybe?… and it’s setting off this pain like electric shocks and strange body-wide pins and needles and tingles – especially when the bladder spasms and pushes out more water.

At 5:15pm it was pressing so hard it wouldn’t take much more of a hard Release flood to take it out. It was at the 24 hour mark, so it seems inevitable. I don’t win, either way. I need that Suprapubic Catheter ASAP. Except the Urology Department doesn’t seem to be taking much notice of it.

It’s in Retention-Release, despite also slightly draining as well. During the Release, it leaks (bypassing), and creates an immense amount of that pain mentioned just before. It’s so overwhelming I can hardly breathe and makes my eyes really water badly, as well as making me feel quite lightheaded and disorientated. It’s not nice at all.

It’s hanging in there but not my much. One big Release is probably all it will take now…  😦

*

Also I’ve had enough about the OT and social worker. I cannot get anywhere with them, and they won’t talk to me (despite my dad and I leaving messages with them since last week), and thus I have put in a complaint against them with Conwy Services. I’ve also had to call what they call single point of access to request a referral to a new OT. My fourth one now.

This is also along with the fact one of the district nurses thought it was perfectly OK to go and call the incontinence nurse to ask about getting me medication for bladder spasms, and then take that request to the GP all without informing me or getting my consent. I’m hopping mad about it, and she’s not even in today… Naturally. I wouldn’t have even known about it if the GP surgery hadn’t call me to tell me my prescription was ready. So, confused, I obviously ask, What prescription? And apparently it had all been done and dusted for me without my knowledge, my input, my consent. I don’t even know what it is. Or if I have sensitivity or allergies to it, or whether it will conflict with my von Willebrand’s.

Now I have to wait until tomorrow to see what this is all about, and, frankly, expect an apology from them. I’m a very tired and grumpy Lel right now… you really don’t want to get on my sulky side… It’s not pretty, and I will say what I think!


Catheter Conundrum…

This catheter situation is starting to get a little beyond out of hand. Yesterday, it came out twice. Within 8 hours of the first one being inserted, it was out. And I thought 16 hours was being ridiculous…

In the early hours of the morning, the night staff from the District Nurse office came to reinsert it. Fortunately the people there are lovely. And patient. I have to call them out so frequently (or go to their clinic, if I am able to) it’s beyond a joke – it stays in for 24-72 hours mostly.

img_0887The one that first came out yesterday had been in for 5 days… I don’t know what the secret was. But strangely enough, I had no sensation of it coming out (there’s usually a sensation of a stun gun that has a very sharp pointy end stabbing me and shocking me). The one that replaced it was in for 8 hours… so go figure. I barely felt that come out, but there was a bladder spasm at the time, and I vaguely felt it being shoved out.

To put into context, they’re supposed to stay in generally 8-12 weeks.

It comes out with the balloon intact. A filled 10ml balloon at least 3-4cm [or about 1.5″] in diameter. I can’t even tell you how teeny a urethra is, but it gets shoved out of it. Sometimes it feels like my body is trying to lay an egg… Every time this happens, that is what happens – and yet no one has done a bladder scan or checked how much damage is being done to the bladder and urethra by this constantly occurring. I imagine it’s a lot.

The worst pain comes with bladder spasms and what I term “Retention-Release“. This means the bladder goes into retention until the spasm that causes it is unable to keep the pressure on the full bladder. Then, when it cannot keep it up anymore, it releases… all at once, and causes horrible pain. Now, though, it’s through the roof. And if I can feel it, and it’s unbearable, then it must be bad.

This morning the bladder has been going into Retention-Release badly. There was less than 100ml in my night bag (attached to leg bad, which was empty). It wasn’t until 11:25am that it overfilled and released (after coffee, a diuretic). And it hurt.

It released about 300ml at once. It was agonising. It feels like… a stun gun with a very sharp and pointy end both stabbing you and electrocuting you at the same time. It’s like that constantly right now, but when it released, it’s unbearable. If I already didn’t know what utter agony was, I’d be screaming. But I do, so I don’t.

My urethra now feels like it’s being tasered to death. It is well over a 10 in agony. And as someone used to living with agony 24/7 for five years, I can tell you it is horrific if it affects me that badly that I care and feel the pain.

I cannot sit on it. I literally cannot stand, so that’s out. A little bit of being raised on my kneed on all-fours like a baby helps a tiny bit, but it’s not like I can keep myself balanced there forever, it’s not like my legs can keep me up… So I’m stuck with it.

I feel dizzy and sick (as in seriously nauseated) by the agony. Lying down doesn’t help either. I’m stuck with it, and I probably will pass out from it. And I’m home alone with no one to help me.

Paraesthesia is no joke – it is my pain, my agony, what causes screaming both inside and out. It’s the same intensity and agony as if you had been crushed and fallen several stories from a building and survived. But if you did that, you’d get Fentanyl, Ketamine, some serious Morphine. What do I get? Tramadol, and if I’m lucky some soft-crap Oramorph (just 10mg).

The formally-empty night bag now [at 11:48am] has over 600ml in it.

Come 12:17pm and it starts again. It floods. It comes out. I’m vibrating from shaking.

I’ve had to agree to keep the catheter out as long as possible now, up to 24 hours, or more, if possible. I’m not seeing it… But I agreed to try. Doing it though… Well, I’m not so sure about that. My bladder is still in Retention-Release. It’s very painful when it does release (all at once). I’m not going to be drinking much now. How can I, if the consequence is, effectively, wetting myself? In a grown-up nappy, sitting on a incontenence may for babies? And nappies that I have to change ever couple of hours?

The only reason I’m even agreeing to this is because my current Fibro Flare Up is so bad I cannot move or go anywhere anyway – otherwise I wouldn’t be able to go anywhere because of this, and I find that unacceptable.

I’m highly anxious. This makes me feel…Gross. Ashamed. Like I’m a baby again. Or a puppy that is still learning… I can’t stop it, I can’t change it, and I can’t help myself… There is nothing I can do about it. It looks like I might not even be able to be catheterised anymore, if this is what it’s going to do. I’m at a loss as to what I can do, and the professionals are at a loss as to why. All waiting for Urology to come and fix it. Except they aren’t listening, or making it quicker.

But that’s my life now… All about the waiting… and, thus, the suffering…

 


%d bloggers like this: