venting – Page 5 – Urocyon's Jaunts 2.0

Awesome combo already: Eczema and hot* weather!

How can we make it even better? Make that infected eczema. That you have to keep wearing compression stockings over. (Which probably had a lot to do with it getting infected to begin with.) While trying to heal a freaking leg ulcer 😱

Chopping this foot and ankle off wouldn’t help the overall situation much, but it’s feeling too tempting about now.

(For an extra level of fun, what set off the outbreak and made my skin start peeling off in the first place was some cohesive wrap with latex in it. Never reacted to latex before, so of course that’s the perfect time to start. Turns out that this isn’t an uncommon thing, with the existing ulcer inflammation making it so you can get sensitized more easily to just about anything. Of course.)

* Even British-hot weather, when you’re not used to it anymore. At least it’s not 90F+ like when I was a kid, is all I can say.

Ridiculous Annoyance OTD: Forgetting to do a thorough antiseptic mouthwash rinse before I went to bed. Popcorn strikes again! 😬

I should maybe go ahead and try buying some “hulless” variety, with the aggravatingly fragile gums and my apparent inability to stop eating the stuff. When I know full well there’s a decent chance I’ll be feeling it later.

I could tell last night that some inflammation was starting up, and while the rinsing doesn’t totally fix it? It usually calms down a lot faster if I do. Thank you executive function! 🙄

This time it’s making it hard to chew on the one side of the mouth where chewing works. Both the top and the bottom at the back of that side. Annoying, hopefully it will calm down again (and a couple of molars will stop freaking itching too) ASAP. Soft food in the meantime.

I am getting very, very tired of that contender for the most ridiculous seizure trigger ever.

It will just suddenly kick in at about the most troublesome part of the cycle, with no obvious warning. So even if I do drop everything and manage to get out of this part of the house/grab headphones and get them going pretty quickly? I’m already fucked up for hours. Spacey, totally exhausted, uncoordinated, and migrainey even if it doesn’t make it into full-blown seizure mode. My nervous system still gets flash fried enough to make things hard.

No getting around it. And it’s pretty much every day, sometimes more than once.

In here trying to put together some supper now anyway yet again, because what else are you going to do? When it is a regular occurrence.

Things were already hard enough, but this additional layer really isn’t making things more liveable right now.

Dermatitis herpetiformis outbreaks (THE CELIAC DISEASE OF THE SKIN!) : The gift that just keep on giving! 😩

Anyway, I was hoping that this garbage was starting to clear up. It had been several days since more patches came up. But, that would be way too easy after just a couple of weeks.

Not super bothered so far by the hand/forearm stuff, distracting as that can get. I really could have done without more coming up at the edge of my armpits, though, and of course irritated more by the extra warmth/sweat there. Not in the actual pits so far, at least. *fingers crossed* As much as I hesitate to even think about it.

(Almost wishing it had been a new reaction to the same deodorant I’ve been using for several years now, like I thought at first. But, unlikely. Especially with it cropping up other places and looking/behaving like our old friend DH.)

Not being an allergic rash per se, antihistamines don’t help much with the itching and burning either. Trying not to use too much hydrocortisone cream, especially since this stuff wants to hang around so long at a time. But, I think those patches really need some cortisone before I have a meltdown.

clatterbane:

Just reminded with those replacement headphones coming in very handy again, I have a relatively new contender here for the most ridiculous seizure trigger ever:

The noise and vibration from upstairs’ washing machine! 🙃

It is a relatively new one, and as I commented before when that blocked drain was flooding our patio, they run it at least once a day. Usually more, and at unpredictable times. Even though they do have a kid and a dog up there, I’ve had to wonder if they’re also taking in laundry or something. It’s running that often.

At first I assumed it was just the sound, but then I had it blocked out pretty well one night and still started getting muscles twitching and jumping in rhythm with the vibrations. And it kinda went from there. That effect was freaky enough with music my nervous system hated before, but geez that was a weird experience. Happened more than once since, too, with no idea of what might have been different those times.

(One day after I got up, I managed to get a fun combo of seizurey shit from that, and one of the pain meltdowns exacerbated by having to use the headphones when I was already that overloaded. Great fun.)

If I’m on this side of the house (including the heated rooms where I spend at least 90% of the time) when it’s running, usually headphones with the right music going at a sufficient volume to drown it out will head off the worst of it. But, I suspect it’s fucking me up and sapping more energy I don’t have to spare on a regular basis now Definitely staying headachy and spacy a lot more again.

It’s particularly frustrating when there’s basically nothing to be done about something like that. I mean, at least it’s not like when we had that horrible abusive asshole up there whose loud electronic crap kept scrambling my nervous system before–and I knew good and well that if anyone said a word, he’d up the ante on purpose. Just that kind of jerk.

But, you can’t really just say, “Hello, neighbors who don’t seem to particularly like us anyway. Possibly because we come across as weird. You know that new washing machine you bought a while back? Please stop using it, because it’s giving me/my spouse seizures.” 🤔 😩

At least it’s more manageable than the awful music situation so far, and I haven’t been waking up with a chewed-up inside of the mouth or anything so far. But, that’s still been a further quality of life hit that I could do without.

Also, I have pretty much exclusively seemed to have noticeable problems with this shit when something else has been lowering my seizure threshold enough to cause problems. (Which helped it get missed and misinterpreted over the years, yeah.) Medications, celiac deficiencies, whatever rather serious factors. I’m kind of concerned now about what else might be going on to make me more susceptible, but it probably ain’t good.

Didn’t think to mention earlier, but reminded by it starting up again just as I was wanting to go to bed. (In one of the rooms right under the worst of it 😬)

This would probably be less aggravating if it were a US-style top loader with the much shorter wash cycles. With the standard European home front loaders, which heat the water and all? You’d better not want the clothes very soon. “Short wash”/“fast wash” tends to run about an hour and a half. Regular wash cycles, at least 3 hours.

Thankfully, that thing doesn’t vibrate our floors and walls for the whole 3+ hours straight. Just certain parts of the cycle.

From experience, I’ve still got probably half an hour before it settles down enough for earplugs to be enough to let me get to sleep in there, though 😩

Thankfully this is the first machine anybody has had up there that’s so strong with the noise and actually made our place vibrate. No idea what would even do that. I considered that maybe it’s some extra heavy duty commercial model, but those usually also finish a load much faster.

Just reminded with those replacement headphones coming in very handy again, I have a relatively new contender here for the most ridiculous seizure trigger ever:

The noise and vibration from upstairs’ washing machine! 🙃

It is a relatively new one, and as I commented before when that blocked drain was flooding our patio, they run it at least once a day. Usually more, and at unpredictable times. Even though they do have a kid and a dog up there, I’ve had to wonder if they’re also taking in laundry or something. It’s running that often.

At first I assumed it was just the sound, but then I had it blocked out pretty well one night and still started getting muscles twitching and jumping in rhythm with the vibrations. And it kinda went from there. That effect was freaky enough with music my nervous system hated before, but geez that was a weird experience. Happened more than once since, too, with no idea of what might have been different those times.

(One day after I got up, I managed to get a fun combo of seizurey shit from that, and one of the pain meltdowns exacerbated by having to use the headphones when I was already that overloaded. Great fun.)

If I’m on this side of the house (including the heated rooms where I spend at least 90% of the time) when it’s running, usually headphones with the right music going at a sufficient volume to drown it out will head off the worst of it. But, I suspect it’s fucking me up and sapping more energy I don’t have to spare on a regular basis now Definitely staying headachy and spacy a lot more again.

It’s particularly frustrating when there’s basically nothing to be done about something like that. I mean, at least it’s not like when we had that horrible abusive asshole up there whose loud electronic crap kept scrambling my nervous system before–and I knew good and well that if anyone said a word, he’d up the ante on purpose. Just that kind of jerk.

But, you can’t really just say, “Hello, neighbors who don’t seem to particularly like us anyway. Possibly because we come across as weird. You know that new washing machine you bought a while back? Please stop using it, because it’s giving me/my spouse seizures.” 🤔 😩

At least it’s more manageable than the awful music situation so far, and I haven’t been waking up with a chewed-up inside of the mouth or anything so far. But, that’s still been a further quality of life hit that I could do without.

Also, I have pretty much exclusively seemed to have noticeable problems with this shit when something else has been lowering my seizure threshold enough to cause problems. (Which helped it get missed and misinterpreted over the years, yeah.) Medications, celiac deficiencies, whatever rather serious factors. I’m kind of concerned now about what else might be going on to make me more susceptible, but it probably ain’t good.

clatterbane:

Keep reading

That issue seems to be getting worse, which was kinda my suspicion anyway.

Feeling freshly overwhelmed, as is hopefully understandable. But, I did come up with some ideas.

Following through is the hard part, especially with already pretty much operating in emergency mode where what few spoons are available have basically been going into getting through the day. And of course worrying about what I haven’t been able to do has been sending it into deficit a lot. Been an issue for a while, but the energy available is probably at an all-time low.

Anyway, I didn’t say before, but I finally did hear back from that advocacy organization, and they did point me at another one that is supposed to cover our area. Looking at their site, I get a stronger impression that I am just Not Disabled Enough on paper to qualify for much assistance. (Even if I were, not having officially lost my civil rights in any way–yet– might be enough to get shifted to rock bottom priority.) And that it might go beyond limited funding. That was just the vibe I got.

But, their NHS complaints service specifically sounded a lot more possibly inclusive. It probably couldn’t hurt to try to get them to help with the “dropped from ophthalmology, basically because I am multiply disabled” rationing by obstacle course situation. To hopefully get some of the specific concerns there addressed as well. (No energy to get into that.)

Maybe, if I detail the larger situation and am very lucky, someone might be willing to refer me for some other help dealing with the unfamiliar system. Not counting on it from the sound of things and general experiences here so far.

(How does whoever I might be dealing with feel about weird foreigners/gender variant people/etc.? We just don’t know. And the staff looked very older White British.)

But, hopefully they can at least get ophthalmology willing to see me again when I have probably already permanently lost some sight due to bad accessibility.

Trying not to get hung up to a paralyzing extent on that right now, but of course I am concerned about the likelihood of my being able to make and navigate any future appointments without some of the other underlying issues being addressed. Including access to (competent, halfway respectful) basic diabetes treatment, to hopefully help keep everything from continuing to get worse.

And of course I keep kicking myself for “letting” things get to this point at all…basically by being disabled and otherwise marginalized, without necessary supports available. I know it’s fucked up, but these messages are persistent And not just something my own personal craziness cooked up.

Anyway, I’m trying to figure out how to get that underway in spite of already low energy getting sucked by terror. And fighting PTSD. It might help, and probably couldn’t make the situation worse.

In the meantime, if it get too bad, there is a limited hours emergency eye clinic at the local hospital. (Would definitely drag Mr. C along for whatever backup he could provide, especially after my half-deaf ass’s last experience with the regular ophthalmology clinic there and their terrible communication/mixups I witnessed in one visit/etc.)

Assuming I could make it through triage–particularly with the atmosphere right now–and ophthalmology didn’t just turn me away because I did get dropped from regular services.

Still, it is another option. And “I am probably having retinal bleeding as we speak” should hopefully qualify as an urgent thing. Not so sure at this point, but hey.

I am kind of freaked out right now, because it’s become obvious that no, I am really not imagining some visual disturbances. Not noticeable all the time–or super serious yet–but yes it’s a thing.

It’s not going to improve on its own, but progress. And I don’t know of much to do about it.

Especially after getting dropped from ophthalmology (on the verge of needing laser treatment for retinopathy over a year ago), basically because poor accessibility and the support available made me miss/have to reschedule too many appointments. And without GP access, for assorted reasons including the same. Even if I could make a GP appointment and get there with communications support/general backup that’s just not available, I have no reason to believe they would listen to me about it even with the dx’ed retinopathy. Particularly after that totally unsolicited “mental health review” letter a while back.

Not going to vent much more right now, and it’s probably time to try and distract myself for a while. But, it’s overwhelming. And nobody would deserve any of it for being disabled. Or any other reason, including “laziness”, “being silly”, “being weird af”, “making people not want to help you” (thanks Mom!), etc. Yes, that includes me.

Needing to remind myself again that I’m probably not managing too badly, all things considered.

Especially when “all things” starts from a baseline of gimping around on a badly healing celiac-related pelvic fracture for too many years now. And yes, that really really hurts for just about anybody. Phrases like “severe decrease in functional ability and quality of life” keep coming up, too. How about that? 😩

And that’s before factoring in anything else that might be going on, just that type of injury. There’s also no way I’m just imagining it’s an ongoing problem, as well trained as the jerkbrain may be to keep circling back around to that idea. You can clearly feel the fracture line, and it would take some truly special mental powers to somehow make it keep swelling up.

As you might be able to gather there, I was feeling like my coping ability was running on fumes in 2013. But, here I am, plugging along with that “severe decrease in functional ability and quality of life”. With other stuff continuing to pile up. With that just one thing it’s easy to point to as a legitimate problem anyone would struggle with. What else are you going to do? You get on with things the best you can.

But, of course it wouldn’t be easy for anyone. And I would (rightly) feel like a mean-spirited jackass if I heaped even a fraction of the criticism on anyone else.

Looking at it rationally, it’s kind of surprising it did take as much piling up as it did to send me into meltdowns. Talk about overwhelming stimuli you can’t get away from, when it’s your own body doing terrible shit. No amount of fucked-up stoicism is going to change that, and it’s also just plain mean to lay that on any person.

But yeah, it can also be hard to tell when you are doing your best when that hasn’t tended to get much credit. And when you’ve been pushed most of your life to toughen up in ways that you just can’t, because disability. Major complications for too many people.

Another thing I picked up to try recently:

It’s GF and billed as pho-like, which sounded promising. Glad to spot some type of safe cup noodles, so I figured how bad could it be.

A little while ago I was freezing and very low on spoons, and I needed some hot food ASAP. So it seemed like a decent time to try those cup noodles.

That was the most disappointing soup experience since the last British-made cup noodles I tried. (Even after adding some salt, because if they’re pushing it as “Healthy” here I am going to want more salt.)

I probably should have looked at the ingredients more closely before buying them:

Yeah, no wonder that tasted weirdly candied, with freaking lactose and sugar as the next ingredients after the noodles. 😦 Even though I didn’t want to finish the broth, now I’m hoping it wasn’t enough lactose to send my digestive system into meltdown.

No wonder it didn’t taste like straight sucrose sweetness, though. The effect was very odd, which was what made me look at the ingredients more closely.

The flavor blend was very strange and not at all pho-like besides the sickly sweet factor. Not sure what I would even compare it to. It seemed like maybe they were confused and going for a pseudo-Thai theme, but didn’t quite get there either.

This also had an excessive amount of not the same kind of weird dried sweet red pepper in it as that other brand, but some unpleasant candied-tasting type I hadn’t encountered before. And I usually like sweet pepper flavor in moderation.

The noodles themselves were not bad, and I ate most of them in spite of the broth. (Which mostly went down the sink.) Because I really did need food, and paid like £1.50 for that cup o’ sadness 😵

Feeling pretty queasy now, and I’m just hoping it’s not from lactose overdose. At least that wouldn’t shoot my blood sugar up more, what with not being able to digest it. I really was not looking for a hefty dose of sugar on top of the rice noodles, though.

Not planning to buy anything else from that brand. This flavor put me off that much.

Though, as a bonus, their marketing would maybe be enough on its own. Maybe that’s just what happens when Brits playing samurai try to make instant pho.

(No, I don’t think they would appreciate any “noodle wisdom” I would share about now.)