Tag Archives: catheter

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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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.


Life In The Doo-Doo Lane…

Sometimes…. Just… No.

It’s 12.21pm — Sitting in Table Table, heavy nausea in my tummy, not enough food or coffee anywhere near me, miserable because it’s my own fault I’m here right now, and wishing I was still stuffed in my bed, either awake or asleep.

… Adulting is Hard…!

All my fault because, apparently, my brain thought it was a good idea to not close the stopper on my cath leg bag last night, causing it to leak all over my side of the bed. And then, just for good measure — you know, because that’s not quite enough destruction — I spilled half a cup of coffee over the side of the bed too. Whoopee. Yey.

Grrrrrrrr….!!

Context — I’m in Table Table with a companion, S. We’re in Caearnarfon Premier Inn, to celebrate our joint birthdays (born exactly one week apart, precisely the same year). Sounds Strightforward, right? In theory, absolutely. In actuality…? Oh, Hell No!

It was all going to Hell in a Handbasket before then, anyway. That was the main reason for going — some R&R. Except, from even before we left, it was all going wrong. It should have been a sign. But since it wasn’t bight, neon, and flashing in screamingly-loud electric-blue… I missed it. And, so, the games began. Nothing has gone right, and this is the latest in the boo-boos list. And relatively speaking, not even that bad.

… I’m sure there are many, many more of them still to come!


So, we have been forced to allow housekeeping into the room. Therefore, I am hiding from them in Table Table, until the coast is clear to return to the room, and the scary strangers are gone.

… Dear Gods and Spirits, I feel like crap. I wonder if this is what hangovers feel like…? If it is, I finally feel sorry for the bastards who have one — although, theirs were knowingly self-inflicted, and mine was most definitely not. I would never knowingly do anything that did this me!


13.50pm…. Finally returned to the room. Only… Nothing has changed. Except a towel that was on the floor for them (so they know it’s to be taken) in the bathroom was removed. I’ve done a better rush-job at making the bed whilst in a super hurry than they did now — it looked like no one had even bothered, to be honest. I’m not sure they had, since I’d also made it this morning.

Cups changed. Towels changed. Bed linnen not changed. Have I been in hospitals too much, or in posh overseas hotels too much, or do Housekeeping just not change bedding anymore…?!

This was a pointless morning; they did nothing useful….!😟 I’d have most certainly been better off staying in bed and not killing myself trying to get out of this damned room before they got to it…


So… that’ll be one more boo-boo to add to the list!



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…

 


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