I’m working on a couple of other posts, but here’s something that’s actually very relevant to a lot of things lately, which I just posted elsewhere. (Not least, why I haven’t been able to write very much lately.)
Reblogging two things just now having to do with seizures reminded me again that a lot of the “Cannot brain today” fog I’ve been experiencing is most likely an aftereffect of when I was regularly having multiple seizures a day, several years ago. (I thought it might be temporal lobe epilepsy, but it seems to have been coming totally from fucked-up electrolytes from celiac deficiencies.) I hadn’t even thought of this in a while, probably because of the damned brain fog and frustration! *facepalm*
From the brain fog link, I ended up trying the Online Cognitive Screening Test from University of Florida, out of curiosity, the other night. The results were both encouraging and, erm, really not. On one hand, yeah, I’m not just imagining that the brain fog is a significant problem; OTOH, scoring 1st-3rd percentile “very low” on an assessment intended for people with Alzheimer’s when you’re tired is more than a little demoralizing. Not that verbal memory and task switching are my strong points at the best of times; I’ve been hesitant to retry it when just “normally” fatigued. But, again on the brighter side, maybe I’m not coping so badly (and/or Not Trying Hard Enough) after all. *wry smile*
Not surprisingly, that also helped bring to my attention just how much crap I’d internalized about the value so often placed on being able to demonstrate certain kinds of “intelligence”. Erm, yeah, not so important—and not at all to your basic worth as a person. That even applies to me. Usually I don’t feel like I have that much extra to prove because of the “but you’re so smart!” expectations and autistic unevenness in abilities anymore, but sometimes it still sneaks up to bite.
The fog has improved some since then, but it’s still a major problem, with pain making it worse.
That hasn’t happened at all for (I think) at least a year and a half now—with no bitten insides of the mouth or other signs of night seizures either—but every seizure does damage.
And kicking yourself over the Cannot Brain really doesn’t help. I’ve been in a similar place before from intracranial swelling, and it probably will improve to some extent with time and patience. Even if it doesn’t, getting impatient with yourself over things you cannot control doesn’t help at all. Perfectionism sucks, even when you have only learned to apply it to yourself.
As the “intracranial swelling” link above suggests, I ran into enough “there’s nothing wrong, and you should just feel lucky to be alive!” denialism before that I only found out more about this stuff as an adult, and still haven’t been able to talk about it much because I was made to feel so ashamed of even admitting that I might possibly have some cognitive problems from it. If you know someone who has experienced some kind of injury–even if it wasn’t the spectacularly obvious skull-cracking kind, and even if you can’t see many of the problems they’re experiencing with their own brain (which nobody else can)–PLEASE do not act that way toward them. It’s about the least helpful thing you could possibly do, it can make people feel horrible about themselves, and it’s likely to reduce their ability to cope when they’re already having a rough time. And they might end up needing to write stuff like this a couple of decades later, yeah.
If you think they should feel terrible about having cognitive problems and other symptoms from a brain injury, you should just stay the hell away from them, and pretty much everyone else who is not that awful–until or unless you fix your own problems there.
A related pair of links. I can’t help but feel like I’m sounding like a broken record lately, but too much of my life lately has been revolving around dealing with the aftermath of this kind of stuff.
“Sarah Mulenga’s death from a sickle cell crisis was a needless tragedy. Emergency staff must treat sufferers with respect”
This week an inquest into the death of Sarah Mulenga ruled that failures to follow basic procedures by London Ambulance staff contributed to her death two years ago. The two trainee paramedics called to attend to Sarah’s sickle-cell crisis in January 2011 failed to carry out a basic set of observations, treated her rudely and refused to take her to hospital because she had soiled herself. Another ambulance had to be called 45 minutes later, by which time her condition had deteriorated; she later died in hospital.
This was an extreme and tragic case. But many sickle cell anaemia patients have felt a similar lack of emergency care within the NHS…
Often emergency staff do not have basic knowledge of the disease. But ignorance about sickle cell disease is not an excuse for NHS staff to fail patients. “The NHS has a duty to deliver the same quality and standard of care regardless of how uncommon or unknown a patient’s disease,” says John James, chief executive of the Sickle Cell Society.
Speedy response and urgent treatment, most often with painkillers, is critical in a sickle crisis. Severe crises can lead to major organ failure of heart, lungs, kidneys and liver. Even in hospitals that have detailed procedures for chronic patients, these are often ignored by A&E doctors hesitant to give high levels of painkillers.
“The problem for emergency staff is that they can’t get their head round the level of painkillers you need to control the crises,” says 41-year-old Delroy Efemini, a sufferer. In 2005 he attended his local hospital A&E in crisis. A known patient there, he was subjected to hours of waiting and only given over-the-counter painkillers. In excruciating pain he took a cab to another hospital but staff at the first hospital called through and told them to refuse him treatment. He was then forced to return to the first hospital and was finally admitted having spent over 12 hours without any pain relief. “Going to hospital is a gamble for sickle patients”, says Efemini. “All the time you’re just praying that the nurse or doctor who knows you is on duty, otherwise you’re screwed.”
Another patient I know was, in severe crisis, refused oxygen, pain relief and fluids nine times.
Later that day she suffered a pulmonary embolism and went into cardiac arrest. She almost died in intensive care.
“If this disease purely affected white people, this simply would not be the case,” says John James. He believes that stereotypes surrounding black people and drugs lead to patients being treated suspiciously and their requests for pain relief ignored. “The first thing they think when you ask for controlled opiates is that you’re a druggie”, says Efemini.
I hadn’t even had reason to think about it before, but I’m not at all surprised that it’s a much rarer problem in the UK, even with a decent amount of relatively recent immigration from the Caribbean and assorted African countries. As someone pointed out in comments there, with the major concentration of Black immigration being in and around London, they have even less excuse for treating people here badly out of ignorance.
Even coming from a part of Virginia with a much lower percentage of Black people in the population than in the regions which used to have slavery-based economies, there seems to be much more awareness that sickle cell is a thing. I know a couple of people back home who have it–and probably more who just haven’t had reason to mention it. I wouldn’t be surprised if people in crisis often still get lousy care, but they’re less likely to act like you can’t even possibly know what you’re talking about, and must be just making up a disorder, when you’re having a crisis. And the people in the ER have probably seen it before, multiple times, even if they then decide anyway that you’re some kind of drug-seeking fraud.
I don’t have any personal experience with sickle cell, but it sounds like flat-out torture, either way.
It’s appalling, and I am sure that racism plays a big part there, especially in its continuing to be viewed as some exotic condition that’s so vanishingly rare you don’t even need to learn anything about it. Though, I honestly have no reasonable expectation of any better quality of care for something like that. The lack of respect is the big thing, in general, and the differential respect based on racism and other xenophobia ain’t going to help.
Which leads us to this one, with commentary previously shared on Tumblr. I also expect that xenophobia is part of the problem here, too, with the amount of anti-Eastern European immigrant sentiment going. I think I’ve gotten some different treatment at times, even being an apparently middle-class, usually light-skinned native speaker of a colonial version of English (and thus about as “acceptable” as immigrants get). There’s also the “pushy American” stereotype to deal with, when I’ve really had more problems with being assertive for self-protection. But, all of that’s a complication on top of the main problems with the system.
The language barrier is usually raised first, when people are asked why they’d go private, but I think that’s out of politeness. Certainly Alicja, 25, who paid £60 to see a dermatologist in Tooting for her eczema, sounded less than plausible when she explained: “I wasn’t sure that I would be able to understand a GP. Medical language can be quite specific.” (her English was perfect).
The dermatologist elaborated: “I wouldn’t want to make a generalisation, but where language isn’t a problem, there is sometimes disappointment. GPs don’t refer people to specialists. There must be a reason for that, and I guess it’s economical.”
Piotr Miklewski, a 29-year-old practice manager from PMC in Ealing, said: “There is this stereotype that the UK prescribes paracetamol for everything.”
Wiki, 29, who broke her rib ice-skating, said: “And they don’t x-ray you. In Poland, you would always be x-rayed for a broken rib in case it was endangering your lung”. She added, “The doctor told me to take a paracetamol”…
Personally speaking, I would never knock the NHS for its paracetamol name, the reputation it has for never referring anybody, never prescribing antibiotics, never scanning anyone and trying not to waste x-rays. It makes us sound thrifty and stoic.
But if we think people are travelling here to make the most of our health service, we’re dreaming.
This is the kind of thing I’m talking about, when I talk about managed care on steroids.
Yes, I’m another foreign ingrate daring to criticise the way the system works. Theoretical universal access to health care is an excellent thing, and everybody should have that; that definitely doesn’t mean there’s no room for improving how the system actually works on the ground. [I also forgot to add that I was, indeed, very glad to have ready free access to health care as soon as I entered the UK on a fiancée visa. That doesn't mean this motivated me to come, even from a country that's renowned for spotty, extremely unequal access to the most expensive healthcare in the world.]
I can personally back up the hesitation to refer or order diagnostic testing, to the point that it reminded me of being uninsured in the US, when suddenly you don’t need all the expensive tests. (There is some happy medium there.) I didn’t get sent for any nutrient status testing or bone scans, or referred to a gastroenterologist—as is standard practice elsewhere—after the celiac not-quite-diagnosis. He also didn’t send me for all the usual tests to diagnose that. Nobody even suggested supplements. Some complications, like fractures and hypocalcemia seizures and lots of misery from severe deficiencies, may have been avoidable if that had happened. That particularly lazy, pennywise GP fouled it up in the records so that I also can’t get low-cost gluten-free food on prescription, which I didn’t think was an accident at the time. And still don’t. That one also wouldn’t refer me to a dermatologist over something I was concerned might be skin cancer. (Good thing it seems not to have been.) The next one left me on the cheapest first-line drug for type 2 diabetes, even though I had constant diarrhea and other nasty side effects for almost a year (until I just went off it myself, and stopped going there), and that malabsorption really crashed my health on top of the celiac.
Our local hospital is bottom of the barrel, with very poor CQC ratings and abysmal patient satisfaction ratings, especially for the A&E/ER department. They’re actually being sued by a bunch of people for human rights violations now. I can believe all of that. The only trip I’ve made there for a knee injury that had me throwing up from pain, my partner and I had to repeatedly insist that they x-ray it (yes, my kneecap was indeed cracked)—then sat for a couple more hours, with the dry heaves over a no doubt germy trash can my partner had to grab for me to barf into, before they came back and sent me away. With no pain relief at any point (on Christmas Eve, so I couldn’t even buy the paracetamol/Tylenol) and my ankle wrapped up. It was a good thing I already had a cane, because nobody gave me any crutches or anything, with a cracked kneecap and that leg giving out with much weight on it. I was happy to get out of the place by then, anyway. I couldn’t make this shit up if I tried. The total farcical absurdity is rather funny in retrospect—almost the comic epitome of bad ER care—but not at all at the time. And that was with someone else there advocating for me.
[And I could go on with the personal examples, but chose not to bore people unnecessarily.]
But, the thing is, similar experiences have turned stereotypical among people who aren’t as used to that kind of thing, when pretty much every hospital in England is rated better than ours. Some systemic problems there, yeah. And it’s a decent bit of the reason I’ve been having to avoid medical care. I just don’t trust them to place priority on my wellbeing over cost-cutting, even more with the austerity funding cuts [and galloping attempts at privatizing everything now going on].
If I weren’t really concerned about language issues (when communication is already hard when I’m sick or in pain), I’d honestly be tempted to try a Polish clinic. [There are also Swedish dentists and probably medical clinics, with no concerns about language barriers there beyond the disability-related ones. I actually had to get tickled at a couple of ads for dentists in some Swedish Chamber of Commerce publication Mr. U was getting, with not so subtle "looking for the quality of care you expect?" messages.] I’ve seriously considered trying to find a private GP, anyway; good thing we can just about afford it, even though AFAICT that would also mean paying for prescriptions which are technically free under the NHS because diabetes.
When I was uninsured or on Medicaid, I was previously used to getting treated with more respect than has been usual under the NHS. (Never mind when I had good insurance coverage through both parents.) And I still had some pretty bad experiences in the US system. Part of the problem, IME, is that under the HMO-on-steroids setup, there is much less incentive to treat people with respect. Where else are they going to go, if you treat them like crap? People also seem more used to putting up with those good old “paternalistic or prescriptive behavior patterns”# which particularly rub me the wrong way. Those too often include acting like you can’t possibly know anything about your own body, as illustrated by the sickle cell bullshit.
I try not to criticise the system too much in front of British people, because that does come across as rude and ungrateful. (Similar goes for the weather. ) I even hesitate to write about it much, not wanting to come across like some kind of jerk. But, I do get tired of hearing all the “Thank goodness for the NHS!”, even in cases where the treatment would not be covered. (Yes, I did have to comment on that one.) I imagine that some of them will be in for surprises when they need treatment for anything more complicated than a sore throat.
In some cases, it seems to be a weird chauvinistic symbol; look at the bizarre Olympic opening ceremony dance thing. I can’t help but think that some of the points in Fred Clark’s Theodicy and foreign policy: The U.S. is not omnipotent, also apply here, with the “ultimate goodness” and the whole house of cards falling down if you admit that any part of what they’re doing sucks.
I don’t hear the rah-rah stuff so much from people who do regularly need to deal with the system as it exists. That’s a big difference with the rah-rah approach: I will readily admit that the way the system in the US works for the vast majority of people is totally busted, and the people resisting real reforms to make it more accessible and generally less crappy should be ashamed of themselves for aiding and abetting the harm being done by a busted system. Which is unlikely to happen, yeah. Real reform, or their being ashamed, for that matter.
I’m pretty sure that there isn’t a health care system anywhere in the world that couldn’t stand some kind of improvement.
The NHS is a very good idea in theory, but in practice things just don’t always work out so well. And too many people don’t even want to look at how the system could be improved–which is far from a unique situation, and maybe more frustrating because of that.
As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again. Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis…
The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded. I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.
Similar goes if you are experiencing symptoms like these, and it’s getting treated as “all in your head”. (As mine were for better than a decade.) All the counseling and antidepressants in the world aren’t going to “fix” nutritional deficiencies, nor actual#CFS .
I got diagnosed with #fibromyalgia in college, with some added bone pain and neuromuscular problems from chronic deficiencies on top of what this blogger mentions; this is not unusual among people with undiagnosed #celiac . Neither is totally inadequate treatment once you do get diagnosed with either non-celiac thing, sad to say.
I’m actually still having some problems with this stuff, but that’s after about 30 years of malabsorption before figuring out what was going on. (A major reason I haven’t been around much lately.) Just knowing what’s happening makes things feel a lot less hopeless, besides equipping you to actually deal with the base problem.
ETA: I forgot to add that I have to suspect that something like this is going on in the majority of cases where people end up with syndromal diagnoses of exclusion. They usually test for a few things perceived to be relatively common problems, then stop there out of frustration. There’s something going on there that they could do a lot better at treating, if they actually found out what it was. Which is definitely not to say that CFS and fibromyalgia are not “serious”, in and of themselves. Rather the reverse.
I would also like to add this, now that I have tracked down the post (source article linked there):
Besides the frustrating antivax theme hurting people, I can’t help but hope that this bit filters into the diagnostic trenches:
“Adolescent girls are the group most often affected by chronic fatigue syndrome”
It’s enough of a problem with adults, but this is maybe also the demographic most likely to have such a cluster of “vague” symptoms dismissed as a psych problem, based on bias/laziness/shedloads of assumptions which are anything but evidence-based. This can also be extremely harmful.
As I’ve written about here before, vitamin D deficiency is an appalling common and un/misdiagnosed problem, even without malabsorption complicating things. I never did get that link post done on the links between low vitamin D levels and chronic pain/fatigue, but there has been a decent bit of research there (to the point that trying to collect a good sample was kind of overwhelming). And sometimes “fibromyalgia” symptoms and back pain are the main presenting symptoms of celiac. Maybe I can put something together before too long. But, yeah, it’s only classified as a vitamin at all for historical reasons, and the vast majority of people don’t get much in their diets even if they can absorb it fine. It’s actually a hormone, which affects every system.
If a deficiency isn’t recognized and treated, that can cause you a variety of serious problems, up to and including death.
And another BBC story posted six hours ago, which I ran across looking for something on another absolutely horrible case* which did result in death: Too much sun cream results in Leicestershire boy’s rickets:
Chris Head, from Lutterworth, always had factor 50 sunscreen on when he played outside blocking the sunlight from his skin.
His mother Suzi said she was shocked to discover her precautions had resulted in a painful condition for her son.
So much for some sources that claim rickets is not painful. (How would that even work?!) I’m sorry these things keep happening, but also glad that there’s more awareness now that guidelines on avoiding UV exposure are really horribly inappropriate in a climate where the majority of White adults (and IIRC all the non-White ones tested in that large study) are deficient.
Another study, in which “deficiency” as defined is probably “profound deficiency that will give you bone density and other severe health problems” (“< 10 microg/L”==10 ng/mL; the ranges in the above graphic are actually running on the low side by current knowledge): Vitamin D concentrations in an UK inner-city multicultural outpatient population. I just ran across that one, and couldn’t resist throwing it in. I don’t want to sound like one of the unbalanced vitamin D as panacea folks, but yeah. That really does no doubt contribute to a lot of chronic health problems and suffering, which are totally treatable if properly diagnosed.
* I haven’t been able to write more about that one, but it was an absolute clusterfuck of medical malpractice and racism, resulting in the death of a baby and his (young, dark-skinned) parents getting convicted of killing him. The poor mother’s own vitamin D levels were so low, at 16, that the child was born with basically no bone minerals–and nobody believed her when she kept taking him for medical attention because something obviously wasn’t right with him failing to thrive and crying in pain all the time. (She could not have been healthy at all, herself, even before a pregnancy and nursing using so many resources.) That article I picked barely goes into the horribleness there, but it’s easy enough to find more. Including speculations that similar keeps happening, with at least one study happening into how many children assumed to have been beaten to death may have really died from complications of severe rickets.
OK, I am probably not going to try to write more about that in future. My eyes are starting to bug out of my head, as it is.