Not the weekend I hoped for

[liv]

TL;DR: I had a medical problem, I got appropriate treatment, and I'm now safe and recovering.

So I picked up a cold at the end of the week. I was feeling a bit grotty Friday evening, but still basically functional. And Saturday I was finding everything unreasonably tiring. I decided to sleep in rather than going to shul, and I agreed with jack that instead of going out for a long walk in the country we would drive into town and have lunch in a restaurant. I was pretty wiped out by walking a few blocks from the car to the restaurant, so clearly hiking was not the right choice for our date.

About 8 pm Saturday evening I found I couldn't really speak without having a coughing fit. I didn't think much of it; it happens that the tail end of a cold often turns into a cough. In retrospect I wasn't being very sensible; I kept saying, "I can't breathe, but not, you know, in a bad way". And I did a lot of panic-apologizing to jack for coughing instead of answering his questions. I decided it was probably a sensible idea to take my inhaler, thinking, well, asthma inhalers don't really work for colds, but it's probably better than nothing. jack went out for an evening walk, and waiting for him to return I found I didn't have the energy to do anything except sit on the sofa and play mindless mobile games.

I had a bad night, but not, I thought, unusually bad for the tail end of a cold. I used my inhaler several more times; more than once in a night is unusual for me, and I started counting to make sure I wasn't taking it more frequently than four hour intervals. In the morning I woke up and called Sunday School to say I didn't think I was well enough to come in. I thought I was probably being a bit of a wimp; I had a mostly recovered cold, and I hadn't slept well, but I wasn't actually ill. On some not quite conscious level I realized that even if I didn't feel particularly "ill", I couldn't manage cycling three miles to the school, or standing up in front of a class and talking.

The effect of my morning inhaler wore off alarmingly fast. By midday I was really struggling to breathe, and counting the minutes until I could take another dose. With the increased clarity that came with being able to get enough air, I thought, you know what, this may actually be bad. I had recently read tajasel's account of a much worse asthma attack than mine, and I recognized the description far too well. Exactly like Katie, my asthma was always the textbook definition of well-controlled. But having that essay in mind reminded me that an "asthma attack" doesn't necessarily look Hollywood dramatic, it can just be chest tightness that goes on for more than a few hours and doesn't respond to inhalers. So I was looking up relevant websites, like the NHS patient advice and Asthma UK, and thinking, well, I sort of tick the boxes for an asthma attack, but it's a bit borderline. And I'm definitely experiencing quite severe discomfort in the three hours out of four between doses, but I didn't think I was in any danger of not getting enough oxygen to my brain and tissues. I was also aware that my self-monitoring was kind of shot by not being able to breathe properly, so I decided that on balance it might be a good idea to get a professional to reassure me that I was worrying about nothing.

I called NHS 111 and went through all the triage questions to establish that I wasn't having a heart attack or a pulmonary embolism. I was finding it a considerable effort to understand and answer the questions coherently. Eventually the phone operator came to the same conclusion I had: it was borderline whether my problems counted as an emergency or not, so she'd get someone medically qualified to call me back. I waited five hours for the callback, time I spent mostly sitting on the sofa, propping my shoulders up, sometimes managing conversation but inconsistently so, conserving my energy for walking up the stairs to the toilet.

The person who called me didn't introduce himself and I never worked out whether he was a doctor or a nurse. I was in a pretty bad way by this time, so I think the unsatisfactoriness of the consultation was not entirely his fault. But he spoke very quietly, didn't seem to be taking a history in a systematic way, and sounded basically annoyed that I was wasting his time. I had got to the point where I was ready to advocate for needing medical attention, rather than hoping to be reassured, so I headed off his leading questions which seemed aimed at trying to get me to admit it was just a cold. I used keywords like saying that this was the worst asthma I'd ever experienced, that my reliever medication was not working, that the pain was distracting me from everything else, that I couldn't carry out most activities of daily living. All those things were true, but I felt I needed to make a point of phrasing them exactly how they are written on the checklists. Eventually I convinced him to make me an appointment with urgent care for 10 pm, which he described as I suppose I can make an appointment for someone to listen to your chest, then. He did at least assure me that I could take 7-10 puffs of inhaler every two hours rather than 1 every four hours. The higher dose still only lasted about an hour, but being mostly able to breathe one hour out of every two was more pleasant than half an hour out of every four.

Another five hours, alternating between being scared and in pain and miserable, and feeling guilty that I was the sort of person who turns up at Urgent Care on Sunday night just because I am feeling a bit low with a cold. At some point during this ghoti_mhic_uait turned up to take jack out, and I was trying to reassure them that, yes, I have asthma, but it's never really caused me any serious problems, and yes, I have a hospital appointment, but only because the out of hours service in Cambridge is physically located in the hospital, it's not like I'm actually "going to hospital". Of course it's fine for them to have their date, I can easily get a taxi to the hospital. Actually they compromised, because I clearly wasn't thinking straight; they went out for a meal, but at our local pub rather than in town, and they came home early so jack could drive me, and most importantly accompany me to the appointment.

Urgent Care-inna-hospital was great. No waiting; I had an appointment for a fixed time, so I was seen at exactly that time. We had to walk past A&E which had a hand-written sign saying, we're exceptionally busy, minimum two hours wait. But Urgent Care you can only be referred into via NHS 111 or a GP, so they have reasonable control over how many people they see. The doctor was a complete sweetheart. He talked shop a bit about my research, apparently he'd done a PhD in cancer cell signalling before he decided to become a clinician. He had a really nice bedside manner; he wanted to make sure I understood everything but didn't overwhelm me with information or patronize me. He was fine with my saying, yes, I have a pretty good grasp of the pathobiology of asthma, and he was also fine with jack asking if he could explain anyway. He did a pulse oximeter; I wasn't going to look at the numbers but he reported them anyway, I had 95% oxygen saturation (99% or higher is normal, less than 98% is bad) and a pulse of 130, about twice what it should be at rest. I said I wasn't really at rest because I'd tired myself out walking from the carpark to the clinic, but a normal healthy adult doesn't have a racing pulse or a need to sit down and rest after walking a few hundred metres.

So doc said, you did absolutely right to come in, this is bad. He confirmed the outline of the history but agreed with my self-diagnosis that the cold had somehow triggered asthma, and he could treat that without needing a lot more detail. I had predecided that I wasn't going to quibble if he prescribed oral steroids, even though those are potentially scary drugs and I will have to declare them when applying for travel insurance in future. But I flinched slightly when he printed out a prescription for prednisolone, which as steroids go is among the scariest.

And then we went to the midnight pharmacist to pick up the drugs, which is a bit of a miserable system. They have a glass dispensing window which opens out into the carpark, and it has a decent quality mic so you can speak to the pharmacist through the glass. Standing around in a carpark at 11 pm, discussing medical issues while struggling to breathe was not exactly pleasant. I assume they would have been able to let me into the shop if I were deaf or physically unable to stand in the carpark, but still. At this point it had been about 3 hours since I last took my inhaler, and the cold air wasn't helping, and I was tired and scared, and starting to get incoherent. The pharmacist said I should wait to take the first dose of prednisolone until the morning as it might stop me sleeping, but the doctor had told me to take it asap to control my breathing and I didn't think I could sleep when I was this uncomfortable anyway. I wasn't doing at all well at discussing this with him, so I'm particularly glad I had jack with me. I kind of fell to pieces when he asked me if I wanted to get a pre-payment card since four prescriptions costs more than a three month card; the pharmacist was trying to be helpful but I couldn't handle even the simplest of financial decisions at that point.

And then we went home and I took the scary steroid and it helped almost instantly. So far the worst side effect that I've noticed is very mild visual hallucinations; about half an hour after my dose I settled in to bed and it looked as if shadows were rushing around the bedroom, even though I know that the darkness in my bedroom is usually entirely steady. I confirmed with jack that the chasing shadows weren't real, and fell asleep. I had no trouble sleeping that I noticed; maybe I felt slightly less sleepy than normal but nothing I could be sure of.

And today I'm off work, at least partly to reassure myself that the medicine isn't making me crazy, but mainly because I am absolutely exhausted after that weekend.

This felt mostly like an example of the NHS working well. I mean, possibly if I had private healthcare I would have spent several hundred pounds (maybe more, I'm never sure of scale) but not had to spend 10 hours of misery before I got seen. But more likely I wouldn't have the option at all because asthma is a pre-existing condition. Worrying about financial and insurance consequences would have been much worse than worrying about whether I was wasting NHS resources and I think on balance I'd rather have the 10 hour wait. At least I got to spend that ten hours in my own home, rather than sitting in A&E triage.

And I disapprove of NHS 111; basically they cut costs by switching from a service run by nurses to a service run by barely trained call centre operators, who can't do much more than run through a checklist as a fairly crude triage. This isn't a cost saving in the long term because it means more people end up in hospital who could have been helped over the phone by someone medically trained, but given the service had to make cuts, it's not a front-line clinical service so it's somewhat more acceptable to cut. In this case it did work pretty well; I was in fact not an emergency on a scale of minutes, and the phone line passed me on to a doctor who got me an appointment within hours, which was medically appropriate given resource constraints. The actual out of hours clinic was run by a subcontracted company, Herts Urgent Care. I have massive political problems with the NHS commissioning private services like that, but again, in this case it worked well; it kept me out of A&E, it meant I could be seen the same day rather than waiting until GP hours today, it got me efficient, good quality treatment. And probably the nice doctor who was doing the night shift gets better pay and conditions than he would if employed directly by the NHS.

At this point, comments I would find helpful are: expressions of sympathy; discussions of healthcare policy. I would prefer if you could skip telling me your own stories about asthma and breathing troubles, and I don't really want to hear any experiences with prednisolone right now. I know that's not very socially appropriate of me when I've just told you a long story about my asthma experience, but I find other people's descriptions of asthma triggering and my breathing still isn't quite right. And prednisolone has an effing scary side effect profile, so I'm trying not to scare myself into believing I have any symptoms, so I would rather wait until after I've finished the course to compare experiences.

Comments

[kass]

Oh, my dear, I am so sorry. What an alarming experience to have had. I'm glad that you are on the mend.

[angelofthenorth]

Oh my.

Lots of love - that sounds like it was a horrible experience healthwise. I'm pleased you have the right drug for you - Mr Smith was on pred for a while before he got put onto shots for his asthma.

[lilysea]

I got appropriate treatment, and I'm now safe and recovering.

I'm glad.

That sounds
scary
stressful
unpleasant
exhausting.

[redbird]

I'm glad you're recovering well. That "oh, it's not that bad, I don't need a doctor" feels familiar; not from asthma, but thinking of cattitude and adrian_turtle pushing me to call an ambulance when I fainted this summer.

On this side of the Atlantic, I suspect that one of the problems with our approach to healthcare funding is that it means a nontrivial number of doctors and nurses are sitting in insurance company offices, making decisions about treatment for patients they never see. But that's not saying "call this helpline instead of coming in": back in Seattle, when I fainted, we called the insurance company's nurse helpline, which had a doctor call me back, and he then told me that I should go to my GP if they could see me that day, urgent care or the emergency room if not.

[hatam_soferet]

Poor you! I entirely sympathize with that feeling of not really thinking it's worth going in because you're not actually critical. I'm glad you had resources to get you in, and I'm v glad you had Jack there with you to be a backup brain.

For what it's worth, in the US you can often get insurance for pre-existing conditions, like UD with his Crohn's, when it's chronic and not too expensive; you just generally end up paying more for premiums unless you have a very large employer.

[monanotlisa]

Oh, honey; just reading this made my heart clench. Much love to you. I'm so glad you went to the hospital. Don't tut-tut things down when they're potentially dangerous; I know it's a British thing, but as you know yourself, that doesn't mean it's good for you. :/

PS: Don't mean to berate you; just worried. Perhaps projecting (the last time I was doubled over at the kitchen table my wife had to force me to go to Urgent Care because I was still able to grit out, "I'll...be...okay...").

[marymac]

Oh dear, you poor thing, that sounds like the same utterly miserable dose that's going round our place and which landed me up to Out of Hours too (evil fever, which is much easier handled than an asthma attack thankfully). NI does OOH with doctor or practice nurse calling you back and triaging from there which is much more sensible than 111 but probably not practical on the English scale. I'm still peeved about the demise of NHS Direct, it was so useful to have an immediate professional point of contact without the callback carry-on.

[forestofglory]

*tea and support*

[ewt]

I read this whole thing, and I'm sorry you had such a rough weekend. Thinking of you and glad you got care.

[siderea]

For what it's worth, in the US you can often get insurance for pre-existing conditions, like UD with his Crohn's, when it's chronic and not too expensive; you just generally end up paying more for premiums unless you have a very large employer.

... this is, literally, what the ACA made illegal – discrimination against insurance applicants with pre-existing conditions in either enrollment or premiums – and the abolishment of which was being debated by Congress at the end of last September, to the extreme upset of much of the US population.

[hatam_soferet]

Point. We left before the ACA came in, and I'm afraid we're not too optimistic about its chances of survival :( :(

[siderea]

At this point, comments I would find helpful are: expressions of sympathy; discussions of healthcare policy.

"ROBIN! THE SIGNAL! TO THE BAT CAR!"

But first, how about some sniggering like 11yos at:

Herts Urgent Care

That's up there with the now defunct Long Funeral Service.

Anyways back to sympathy and healthcare policy. Accessing health care, on both sides of the pond, has become a lot like magic, in that you effect it by pronouncing exactly the right syllables in the right order at the right time. This is all sorts of problematic. It makes healthcare differentially accessible to those who know the magic words – and knowing the magic words is a matter of educational and social privilege – and to those who are willing to use them, which is its own kettle of fish. There are people unwilling to advocate for themselves for any a number of reasons good and bad, including deference to doctors and not wanting to preëmpt the physician's judgment. And it puts the patient in the position of having to advocate for themselves even when the presenting symptoms may be impairing their cognition, judgment, or verbal skills. Like, say, hypoxia. (See also: hypothermia, heat exhaustion, poisoning, stroke, etc.)

And it puts patients in a position of, effectively, conducting their own triage. Instead of having a trained and qualified medical professional check out your symptoms and tell you whether you're actually having a problem in need of treatment, you have to decide for yourself you're having a sufficient problem to demand treatment – otherwise you never get to see the medical professional at all.

And then, on top of all that, some patients will use the magic language to get access to health care they really don't need. I had a patient I caught lying about her symptoms to her PCP; she was in session with me when she took a call from her doctor's office, and described some quite alarming potentially-psychiatrically-relevant sx to the nurse; when she hung up, I said, "You never told me you were having [sx]. How long has that been going on?" and she airly waved a hand, "Oh, I don't. But you have have to exaggerate things or they'll never see you." Same patient called our clinic complaining of an intolerable up-tick in her depression to convince the receptionist to book her for an urgent psychiatric appointment; when she actually saw the psychiatrist, she said nothing about depression, but importuned him for more benzos.

As an aside, it never ceases to amaze me when physicians allow themselves to be moulded into practicing this way, because that is simulatable by a computer. If dx is going to proceed on simple vocabulary matching the pt uses to describe their sx, we don't actually need MDs any more. A crucial role of MDs is to hear "so angry all the time" and "lost my temper" and "I been fine, but for some reason, since I started the prescription, god, everyone at work has been such a tosser" and think "ah, 'elevated irritability'"; to hear "I get floaty in my head when I stand up" or "I get woozy and have to sit down" and think, "ah, 'orthostatic hypotension'." Doc, if you're not going to do that, if you're not going to chart "elevated irritability" if the patient doesn't use the word "irritability" and instead says "anger", if you're not going to chart "orthostatic hypotension" if the patient doesn't say for themselves "orthostatic hypotension", then we can replace you with an Android app on the patient's phone that prompts the patient to click buttons labeled things like "elevated irritability" and "orthostatic hypotension"; it will suck because patients will get it wrong, or not know what those terms mean, or lie, but it won't be any worse than what you're doing. Why would you marginalize your own profession like that?

(Why, yes, I have a recent case of my own in mind.)

Anyhoo, two-level attitude: Re:

I used keywords like saying that this was the worst asthma I'd ever experienced, that my reliever medication was not working, that the pain was distracting me from everything else, that I couldn't carry out most activities of daily living. All those things were true, but I felt I needed to make a point of phrasing them exactly how they are written on the checklists.

I don't know the Brit version of the checklists, but I would actually not necessarily expect this to work in the US – it's not got the right magic words. Would you like some possibly-US-biased suggestions for tightening your give-me-medical-care game?

[falena]

Oh no! What a miserable way to spend the weekend. I'm glad you got the medical help you needed, even though waiting 5 hours for a callback seems a bit too long, considering how awful waiting must have been for you. Not trying to diss the NHS, btw. I get that with cuts and limited funds this is the best system they could come up with. *hugs*

[batdina]

as my former students would say: "that sucks". so sorry for your bad day.

refuah sh'lema.

[watersword]

That sounds like an extremely unfun time. I'm glad you're okay and home safe and feeling better.

[watersword]

I for one would be VERY interested in this information, even if liv is not; it would make a pretty great Patreon post.

[graydon2]

Oh how rotten! Glad your breathing has returned to being more-regular.

[siderea]

In the general form, it would, yes, and it's something I have vague plans for. (I recently re-sourced a copy of a very useful textbook to this end, that I had loaned to a colleague and never saw again. :)

I was thinking something a lot more specific for Liv, though, along the lines of "given those sx, here's what to say".

[owlfish]

I am so, so glad you're getting enough oxygen again! What a miserable way to spend the weekend.

[hairyears]

Thanks for the reminder: as someone with mild (but needs 2 meds to manage it) asthma, I have been very unwise in putting off my flu jab.

I'll make do with sympathy and empathy, not emulating a weekend like *that*.

[worlds_of_smoke]

That sounds super scary. I'm glad you were able to get in to Urgent Care.

[ursula]

Eek! That's really scary. I'm glad you're feeling a bit better.

[ceb]

Oh bleh. I'm sorry you had to spend so much of your weekend feeling miserable. *hugs*

[altamira16]

I hope this is on your list of okay things to say. Thank you for reminding other asthmatics to get their symptoms checked out.

I am sorry that you went through all that.

[lilacsigil]

I'm glad you're more oxygenated now! I didn't know the NHS was paying to run private Urgent Care clinics - it seems like it would be cheaper to run it themselves if only due to economies of scale with the hospital, but outsource everything, rah rah rah, is the catchcry here as well.

[silveradept]

That was quite the incident, and I'm very sorry that you had to make the decision as to whether your symptoms were bad enough to warrant care.

As a matter of health policy, it seems the current trend is to foist more work on the professionals we already have, lowering the standard of care, rather than giving incentive for people to go into medicine and make it less prohibitively expensive as a college profession (at least on the States.) More people, especially those who will work for the socialized medicine spaces, would make a lot of things easier and better for everyone.

[(Anonymous)]

Eek, sorry you had to go through that, and glad it's basically sorted now.
I apologize if I'm wrong, but I'm inferring you would be OK with positive prednisolone stories. My sister took it for most of her teens, for Crohn's. They took her off it every now and then because of concerns about long-term effects of taking it all the time, but I don't remember her having any side-effects while taking it, certainly not anything like hallucinations.

Rachael / woodpijn

[mrissa]

I think it's entirely socially appropriate to ask in out loud words for what is helpful to you when you're the one having an issue. I'm glad they've found something to help, and I hope it's as helpful as it's supposed to be very soon and in its entirety.

[naath]

That all sounds quite horrid, I am glad you got care.

[mathcathy]

I HATE NHS 111. Let's see:

• Tightness from using a seatbelt too long ... emergency, must get you a doctor to call immediately (1 am in the morning)
• Desperately poorly with trigeminal neuralgia, screaming with pain: "Our system tells us you should try to see a doctor within next 24 hours"
• Needing emergency help: we will call you an ambulance (four hours later when it came after hours of agony and fear"Oh, we never take referrals from 111 seriously, they make so many mistakes, they probably only logged the call when you called 999 to see why no one had come yet")

[woodpijn.livejournal.com]

I agree.

* Child thinks she put a small sweet up her nose, but I can't see it and she's breathing fine and she's probably mistaken - GO TO A&E NOW!
* Child has been screaming with unexplained neck pain for the last twenty minutes - "Aw, bless her."

[liv]

Thank you for sympathy! It honestly wasn't that alarming at the time because I was too out of it to realize I ought to be alarmed. But yes, I am much much much happier than I was on Sunday.

[liv]

Thank you, and thank you for talking to me as well. You are really good at making me feel loved.

[liv]

Oh, thank you, I really like this response of listing some emotions I might be feeling, it's a great way to express empathy.

[liv]

It's really hard to get past all the sources of bias to one's judgement about whether medical attention is needed. It's easy to feel helpless, and think, something is wrong, I need a doctor, and it's also easy to feel medical care is a precious resource and shouldn't be wasted. And both those things are true, but they don't necessarily help to evaluate a specific situation.

Definitely one of the problems with your healthcare is that it's incredibly inefficient and uses up the time and labour of medically trained professionals. But it's telling that an insurance company, which is all about shareholder value and making a profit, thinks it's worthwhile having a nurse helpline; that really shows up how short-termist it was for the NHS to cut theirs.

Sometimes where you end up being seen is a function of which places are open. I might not have needed to be in hospital, but nowhere else was offering any care at all Sunday evening, and it's really hard to get a GP appointment on any time scale between, 'immediate emergency' and 'able to wait several weeks'.

[lilysea]

And it puts the patient in the position of having to advocate for themselves even when the presenting symptoms may be impairing their cognition, judgment, or verbal skills. Like, say, hypoxia. (See also: hypothermia, heat exhaustion, poisoning, stroke, etc.)

Once, when I presented to the emergency department with dizziness etc following head injury, suspected concussion, they insisted on separating me from my partner/support person/carer "for the privacy of the other patients" (they were fast-tracking me to a patient-only behind-the-scenes bit of the ED)

Due to my ongoing chronic illnesses, I have aphasia, brain fog, and selective mutism even WITHOUT a head injury - how the hell they expected a person with aphasia + brain fog + selective mutism + head injury to communicate my complex medical history and answer questions effectively with the doctors and nurses without my support person!

and then they got angry at me for how I communicated when stressed/Anxious/frightened/head injured and separated from my support person!
Nurse: "Why do you use a wheelchair"
Me: "I have trouble walking"
Nurse:"WHY do you have trouble walking"
Me: "I get exhausted and fall over easily"
Nurse: gets cross with me because what she wanted was a diagnosis, not a literal answer. (I get very very literal when scared/stressed/Anxious/tired.)

Nurse: comes up in my blind spot (power wheelchair limits my peripheral vision), grabs my finger for a blood-prick glucose test without verbally warning me, gets angry when I automatically flinch/jerk my whole hand away in startle/fright.
She grabs my hand again (again without verbally warning me), I flinch/startle/jerk my hand away on autopilot again, she says angrily "WELL I GUESS YOU DIDN'T WANT THAT BLOOD TEST THEN."

I had to say "No, I do" take a deep breath, and coax her into trying again.

I've decided if they ever insist that they have to separate me from my support person again, I will say "No, I can't communicate without them."

[liv]

Thanks, badger! There is a big hole between immediate life threatening emergency stuff, and purely elective stuff which can wait until a convenient time. But yes, I had resources and people and that helped a lot.

I've always thought an insurance based system wouldn't work for me at all, because practically the only reason I've ever needed healthcare is because of the asthma I've had since a young child. So there's no level of premiums which makes me a good risk for insurers. But the economics is always more complicated than I realize, so perhaps I should imagine more expensive premiums rather than uninsurable.

[liv]

Thank you, I really appreciate the sympathy. I think I wasn't downplaying the problem because I wanted to be British and not cause trouble, I was downplaying it because there wasn't a clear bright line between, 'I'm a bit wheezy, I should take my inhaler', and 'I am really really not breathing well, I need medical attention'. Like, if the inhaler had definitely not worked instead of wearing off after half an hour, I'd have known it was a problem. Or if I had been absolutely unable to get enough air, rather than finding it uncomfortable to take more than shallow breaths, I would have been more insistent.

It's particularly hard when you have chronic stuff going on; obviously you can't just admit yourself to hospital every time something hurts, only to be sent back home. I'm glad that you also have a spouse who helped persuade you to the right decision.

[siderea]

Once, when I presented to the emergency department with dizziness etc following head injury, suspected concussion, they insisted on separating me from my partner/support person/carer "for the privacy of the other patients" (they were fast-tracking me to a patient-only behind-the-scenes bit of the ED)

I suspect they were separating you from the man you came in with to ascertain if he was the cause of your head injury, i.e. if you were the victim of domestic violence/trafficking/caretaker abuse.

I have no idea what to do about this, since it's such a legitimate concern.

I suppose a useful thing is that when your support person comes with you, they advocate for you in this way: that they go to the triage nurse or whomever and explain, "lilysea has some communications disabilities and I'm usually the person who helps her communicate. You're going to want to talk to her without me present, so can you find someone else to assist her for that?" It relieves you of having to ask for it, it demonstrates to witnesses your support person isn't trying to be controling of you, and maybe gets the job done.

Works better if there's some handy buzzword/label for the sort of communications support he gives you, that you can have him ask for by name.

Due to my ongoing chronic illnesses, I have aphasia, brain fog, and selective mutism even WITHOUT a head injury - how the hell they expected a person with aphasia + brain fog + selective mutism + head injury to communicate my complex medical history and answer questions effectively with the doctors and nurses without my support person!

Yeah. There was someone on my flist who had a stroke, and after recovering sufficiently to be out of the ICU, was moved to a rehab that specializes in TBI. Nevertheless, staff there had trouble with the fact that he was aphasic. He wrote something to the effect of, "You would think, of all people.... I mean, it's not like they've never met a stroke victim before."

[lilysea]

I suspect they were separating you from the man you came in with to ascertain if he was the cause of your head injury, i.e. if you were the victim of domestic violence/trafficking/caretaker abuse.

Huh. This didn't occur to me at all,

a) because he was literally in another country when the head injury happened (he was in Japan about to fly back, I was in Australia.) I was taken to hospital by ambulance on the day that the head injury happened, and then the dizziness, concentration difficulties etc got progressively worse and worse over the next 24-48 hours, and the Dr told me to go back to the ED to get a second CAT scan in case there was swelling in the brain (by which point my partner was back in the country.)

b) because at no point during the ED visit (either the first one or the second one) did anyone ask if my partner had caused the head injury. They just asked how it happened, I told them. They asked me to repeat the story a lot (I hit the front of my head VERY HARD on a metal towel rail while tidying up the edge of the spa bath in the ensuite bathroom), but at no point did they suggest that they disbelieved me or ask if anyone had hurt me.

To be honest, I think the reason they separated me from (partner) is that in the behind-the-scenes ED bit all the treatment beds/rooms were taken, so I was in a tiny "waiting room" that was really just a recessed niche-room alongside the corridor (walls on three sides, completely open on one side), that only had room to seat 4-6 people tops. I think it was that they were worried about overcrowding. In which case, given the niche was empty apart from me for 90% of the time I was in it, couldn't they have let [partner] be with me until more patients arrived, and then made him leave?

[lilysea]

Ideally, I would have a card like this, that didn't mention Autism (I'm not Autistic.) Do you think a card would help the hospital staff take my need for communication help seriously?

[khalinche]

This sounds totally exhausting and scary. I am sorry. *hug*.

[khalinche]

Also, this post reminded me that it would be good to go and get an asthma checkup and a current inhaler, so I did. Thank you.