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Yesterday was a bad day. And a bad Bob day is not a day I would wish on anyone else. On reflection I should have gone straight to the ED. Hell, even today my vitals are Why oh why do I do that? If anyone else told me their heart rate had dropped to 40 and their diastolic had jumped up to 113, I'd be straight onto 000 calling an ambulance. The fact that this didn't change in the slightest for about 2hrs was still not a reason for me to head into the ED. At this point even I can hear the lyrics to Smash Mouth's, Allstar...
She was looking kind of dumd with her finger and her thumb.
In the shape of an "L" on her forehead.
...playing in my mind.
And it is stupid. I can admit that today. Yesterday, not so much. Oh sure there was that little voice screaming at me to go straight in but I silenced that quickly with a big ball-gag of denial. Instead I rode it out. I drank my body weight in fluids, wept a couple of tears in the privacy of my bedroom, and deluded myself that getting my heart rate back up into the mid 50s meant I had over-reacted earlier.
Someone once told me the world is gonna roll me
I ain't the sharpest tool in the shed.
The conversation in my head went something like this:
It's just a dip. The switch will go off and it'll stabalise. Okay so it's going on a bit longer than I expected. But it does that every now and then. I'll see if anyone has any tips on Facebook. I know everyone is saying go to the ED but I'll give it just a bit longer. Hmm that chest pain's a bit intense. Wish my neck and left shoulder weren't aching so much. Probably just a strain though. I'm obviously over-analysing things. Maybe I should give my inlaws a heads up that I may need to go in? But I know they'll worry. I can't deal with worry. I'll just keep and eye on it. Damn I feel crap, but sure as eggs I head into the ED it'll start to go up and they'll look at me like a hypochondriac. Plus the wait. Ugh. I hate the wait. Plus the germs from all the other sickies in there. I don't need another infection. I'll just wait it out. Damn heart just stop with this stupid pain business. Ooo look my heart rate has nearly hit 50 I'm improving! No point going in now. Anyway, I really don't want to go through the whole explanation thing AGAIN. The hassle of the ED just isn't worth it. How do I explain that my normal is abnormal or that my abnormal looks normal? Or that there is a huge difference between lying and standing obs? Might as well try and hold an octopus into a string bag. It's just as futile. 50's not bad anyway. I've had worse. And my cardio is on holidays so they can't call her. Plus Mr Grumpy's away and the kids need to get to school. And the dogs will go ballistic alone in the house all day. I can't afford to stay overnight if they do find something. It just wont work. Too much hassle. I'll just drink some more and maybe sleep for a while....Look I made it through the night. I OBVIOUSLY didn't need to go into the ED after all. Harden up, Princess. Bloody drama queen.
Yes. The dumb is strong in this one.
But that's how it works in this deranged old mind of mine.
When you are sick 24/7 your idea of what is ED worthy becomes skewed. My everyday health especially my heart rate and blood pressure would send average healthy folk running to the ED. Basically, I live in 000 (the emergency number here in Oz) territory 24/7. If I went every time it bottomed out or went too high, or I lost feeling somewhere, or it felt like someone was forcing a railway spike through my head, or any of the other daily crap I deal with, I might as well just set up a little camp site in a corner of the waiting room as I'd simply never leave. Overtime it's become harder and harder to discern just when I should worry. Even talking to my cardio about this very issue a while back, she was hard pressed to give me guidelines as to when I really should go into the ED. And stupidly I always think of the ED as a place for people who are really sick, not when your sick is just an extreme of your normal sick (I really need to be studied for my high level of stupidity).
Add in that a trip to the ED is also a crap shoot. The chance of getting a doctor who understands, let alone has heard of your condition is slim. Trying to explain the complexities of your health and why the vitals or bloods they are getting aren't good is often an exercise in futility. Will they believe you? Will they call for a psych consult? Will I even be in a fit state to articulate any of it. Lets face it EDs aren't designed for complex conditions. If it bleeds or it's broken they are great, but when your needs are complex it can become a nightmare. I do respect those who work in the ER. It's not a job I'd want. Having a sister who used to be an ED NUM I know only too well what she has put up with over the years. And I understand I am complex. I still remember the look on the poor registrars face when I did my last disc and she was asking me about the sensation in my leg. Widespread neuropathy does make it a little hard to assess. Needless to say she ran off to confer with the consultant a bazillion times. In reality it's hard work on both sides of that breezy hospital gown. But all of it ends up with me preferring to dig my eyeballs out with a rusty spoon than go to the ED for treatment.
Add in the responsibilities of children and families and all that malarky, and I end up with a conversation of stupidity running through my mind every time.
Plus I'm tired. Really, really tired of this sick business. I actually can't recall the last time that I felt well. I can't recall when I didn't hurt, or feel nauseous, or dizzy or all the rest. And that kinda sucks. And I am over doctors and tests and all the other medical paraphernalia that you have to deal with when you are living with a complex chronic condition. Makes me a bad patient and my own worst enemy at times.
Now if ED doctor's looked and sounded like Dr Kovac on ER (does that show my age?) well I may just change my mind about ED visits. Because even a crappy "it's all in your head" would almost be worth it spoken in his delicious accent. Maybe I could put that in the hospital suggestion box?
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Back to bed I go.
Michelle :)
Given how extra exhausted and brain deficient I've been the last few weeks, maybe month, I do now wonder if I am living more in Bradycardia. I don't usually take my readings unless I'm particularly crap or something changes so not sure. May be time for some more regular readings.
Michelle :)
Given how extra exhausted and brain deficient I've been the last few weeks, maybe month, I do now wonder if I am living more in Bradycardia. I don't usually take my readings unless I'm particularly crap or something changes so not sure. May be time for some more regular readings.
I am So glad I am not the only one having this conversation. . . .Ok, very similar conversation. . .with myself. I was doing the exact same thing today, even got on Facebook to ask for advice and yep, go to the er was the final consensus. But did I go, of course not. I'll just see how I am through one more night of this horriblness and decided if I want to go tomorrow. Having to deal with so much unnecessary frustration in th er, its not my first choice to be when I am feeling so crappy!!!
ReplyDeleteI hope you are continuing to feel better Michelle and I pray that my numbers stabilize on their own so I don't have to go in either. But, dealing with my numbers being far from my "normal" since Fri night, I don't think I can take another day of it. Ugh. . . .k another conversion starting in my head. Oh I hope I can get some sleep tonight, already 2:45am and so far, no luck. :-/
Thanks for this blog! I can't always, well usually can't, put into words how I am feeling through all of this and your words in this explained it perfect!
Here's to hoping we all have a better tomorrow!!
Dedee
Hi Dedee
DeleteHope your numbers stabalised and you are feeling a little better. Is it wrong to say it's nice to know I'm not alone? No matter where we live around the globe we all seem to be having the same crazy conversations. Better tomorrows all round xxxx
I have the same debate with myself more often than I care to admit, and like you, I often don't go because I know getting good care in the ER is often a crap shoot.
ReplyDeleteIt really is a crap shoot isn't it? Every now and then you get a great doc, but sadly it seems that the bad stories outweigh the good.
DeleteThis is very much understood. My wife and I this last week decided to just tough it out again and not go in. The daily frustration of trying to weigh my supposed health care and getting the kids to school or whatever event is tough. I hope things progress positively for you.
ReplyDeleteThanks Coercus. It is hard when you have kids as well. I'm lucky mine are teenagers so are more self sufficient, I can't imagine how I'd cope if they were younger. As you say, sick or not, as a parent you have to get kids to school and events makes it hard to manage your own health in the process. Wishing you both a symptom free day.
DeleteOh yes I am VERY familiar with this inner monologue! Yesterday, I had an "episode" at my dad's house and on came the argument with myself (aided with advice from others around me of course)--I don't know what I'm waiting for to go to the hospital--maybe to be catatonic? Arresting on the floor? In my mind, something so obviously bad/wrong that even the ER docs can't argue....Yes the dumb is strong in this one too! Like you, I'd have to set up a permanent camp in the ER if I went in every time I probably should have. And like you, I probably could have done with a big bag of IV fluids and some hospital "TLC", but alas, I made it through the night again and patted my dumb self on the back for such good decision-making and brave perseverance--Ha! Great post! Spot on as always! -Jennifer Pfaffl
ReplyDeleteI think you hit the nail on the head. I'm waiting for the "something so obviously bad/wrong that even the ER docs can't argue". Maybe we all need some sort of intervention. The prediagnosis days of being told "it's all in your head" leave you with a lot of baggage even years down the track.
DeleteOnce again you articulate so clearly exactly what so many of us are going through. Thanks for this. I cannot even remember all of the times I had this conversation with myself and sometimes with my family. When I see other people posting their vitals on the Facebook pages, I know the "right" answer is to tell them to go to the ER, but having been there myself, I rarely do that anymore. I would never encourage someone NOT to go to the ER if they felt that their symptoms warranted it, but I know from experience that in most cases going to the ER when my vitals are terrible only makes things worse - it adds stress which can exacerbate symptoms, usually leads to unneeded tests like CTs or X-Rays, racks up medical bills that I don't need, puts me at risk for catching nasty hospital germs, always results in lots of blood draws which always makes me feel sicker since I'm already battling hypovolemia, and most importantly, never leads to any actual improvement in my symptoms - most ER doctors don't get us, nor do they care about us unless we are about to croak. I have had more than one ER doctor tell me that. "We are here to save your life, not help figure out what is making you feel so sick or how to fix it." Well, at least they are honest.
ReplyDeleteI have found a better approach to be finding a good doctor who is willing to see you on short notice and who has a good answering service for nights/weekends. Easier said than done, but well worth the search. I only go to the ER now when my doctor tells me too (which is too often if you ask me!).
Hope you are feeling better today.
Why is it we can look at someone else and say "yes you need to go to the ER" but we have the same exact numbers/symptoms and um and ah about it? Over here we don't even have the cost issue to contend with as public ERs are bulkbilled, so free. I do think part of the issue is that ERs simply aren't set up for patients with complex heath needs. Not sure where that leaves us when it comes to when we have an acute exacerbation.
DeleteKovac is sex on legs! No sign of him in this hospital either!!! :p the dumb is extra strong in me too only for my hubby i dont know if id still be here, i blame the brain fog for our potsie thickness!!! :p
ReplyDeleteSee this is why I like you Lette, Kovac IS sex on legs!
DeleteHiya,
ReplyDeleteI am exactly the same. Now I have morphine and oxygen at home I no longer "need" to go to accident and emergency. I have a bp monitor and pulse ox and know through being sick and countless ambulance trips to a&e that all that will happen is the drs will have to google my condition, stick me on a drip, monitor my vitals and send me home after either a few days or hours. To be honest I'd rather not spend that time on a ward with old ladies who bless them have dementia, cursing at me and throwing shoes at me! (this happened last time!). Plus I really dont need the added bonus of a hospital acquired infection! As you said ER or a&e in the UK are for accidents or medical emergencies if its a chronic illness thats decided its not going to behave then its not the place for you. Plus in the UK there have been a few horror stories lately that people with EDS who have suffered dislocations have been told to stop wasting the drs time! The fact that they cant get the joint to go back in doesnt seem to bother the medical staff. So I try to avoid hospital and manage my condition myself as I know it best and will ask for help when I need it!
Wow that's shocking about the EDS issue. Wasting the doctors time because you're dislocated, bloody hell. Glad you are now set up at home so you don't need to go in as often. As you say between the infections, angry grannies etc it's sometimes the healthier option to stay home.
Deleteoh wow... I've heard this exact conversation inside my own head.
ReplyDeleteAnd yeah, I'm right there with you on prefering to dig out my eyeballs with a rusty spoon rather than go to ER.
Sad that removal of eye balls is far more preferable for many of us. At least we can take some sort of weird comfort in the fact that we are all having the same crazy conversation. ;)
DeleteOnce more, POTS twin, you wrote something straight out of my own saga...I relate to this so much I could have written it. The sad part is, I know I will do this exact thing again. Rinse and repeat... -Shae
ReplyDeleteWonder twins power activate! Okay now you need to start making those cool rings ;)
DeleteAh, I've been there. Only decided to go to the ER once. I have a horror of being diagnosed as a hypochondriac/head case. But this time, not only was the tachycardia and labile hypertension way out of control, but there were indications that I may have had a stroke (though apparently that right-side numbness was just another freaky-deaky dysautonomic dysfunction). The ER doc gave me a lovely epitaph--though I will probably donate my body to science, as after I'm dead, I don't need the space--what's the point of a grave and a headstone? But if I had a headstone, it would say what that ER doc said--that I was a "puzzling case."
ReplyDeleteI think most of us are worried about being labelled as a head case, especially given so many of us have been told similar things in the past. You'd think after a diagnosis and clear symptoms we'd be past that by now. The good old stroke-like symptoms, now that's a barrel of fun. Glad you're okay, well okay in the chronic illness sense of the word.
DeleteMy Mom and I (I'm 24 and live at home) often have this conversation when I'm sicker than usual. Should I go to my regular doctor? Cardiologist? Rheumatologist? Hmm....it's after hours, maybe I should go to the ER? No, they all have way too many germs. I'll just wait a few more hours. Fast forward to the next day....I really should have done something about those symptoms. Oh, well too late. So glad I'm not the only one who goes through this process.
ReplyDeleteCarly, you are definitely not alone. I must admit when I wrote this I wondered if people would think me crazy, or tell me off for not going. But it seems that it's a common conversation people are having.
DeleteWell, you're ok and blogging, so I guess you made the right call!
ReplyDeleteHere's a tip though: Get your cardio to print out a brief explanation of your condition for you to keep in your handbag at all times. (On her letterhead, signed, all official!) That would remove the need to explain to doctors who don't know you or haven't heard of what you've got, and remove any consideration of chucking you in the psych ward!
HA! Yep, I tell myself it was the right call. I'm very good at ignoring the damage such a low HR and poor O2 could do to my organs. I am the queen of denial.
DeleteI have started putting together some info to take in. I found wording is really important so saying I have autonomic dysfunction and progressive neuropathy makes them take me more seriously. Plus I was lucky to have that diagnosed by the most well known and respected neurologist round town. Mention his name and it gives legitimacy to my diagnosis. And yet still I don't go to the ER, I really should be studied for my level of crazy ;P
Ironically I've had the same conversation on a smaller scale for 2 days on whether to call my EP or cardiologist. :/
ReplyDeleteHope you've picked up Sierra. (hugs)
DeleteI'm glad I stumbled upon your blog! There's fellowship in knowing we aren't alone in our conditions or our seemingly absurd mental dialogue, and bless the Internet for allowing that! I don't come across others like me in the "real" world, but I feel less insane every time I encounter someone like me online. Thanks for posting!
ReplyDeleteI just got out of ICU and I came across your website because I am now dealing with the most oddest of situations and the puzzlement is overwhelming. This time out after a rough ride since Monday three ER trips and blood pressure and heart rate issues and my body arms and legs feeling like wet cement bags, I have lost my natural voice and it has been replaced back and forth with an accented one. They said they have learned this in school they have seen it in text books but they have never actually came across such a sight as me. They told my spouse I need to go to a speciality hospital that deals in autonomic disorders. Has anyone else ever experienced where there voice changed back and forth from normal to a accented voice in my case they are saying it sounds Italian, and trust me I am not from italy, my family is Salvic.
ReplyDeleteThanks so much for your wonderful blog and post- it so resonates. Just got through an ER trip for diverticulitis, and the only reason they didn't force hospitalization was that we had to bury my mother.
ReplyDeleteThe POTS/dysautonomia fatigue is so bad now (I was in denial), that I wasn't aware that when I fall into these coma-sleeps, that B/P is excruciatingly low. For example, after my husband tried to wake me up yesterday, it took him half an hour to get a response, and then after I was awake, the B/P was 79/57 and then 81/52. This went on all night, even after tachycardia kicked in when standing, and the b/p rose to 96/65, then fell again. Heart rate was so irregular it could not be properly measured. I thought I was going to die overnight, so I took my inhaler to make my heart rate rise (even as it was completely erratic). It worked. I don't have a POTS doctor, and I've only now just realized that the coma sleeps are tied to the B/P- the day Mom died, her B/P was 88/60 and they told me she was near death. Oh well. NOT going to the ER until I have a decent autonomic doctor who won't do a tilt table (that would kill me).
Dinet is down, and I can't get on to it, so I'm stuck in the dark (one of the staff/members who runs POTS Place went postal on me about 3 months ago for leaving her "favorite" F/B group because they were cutting me for not posting enough, and so I left them, and so now I'm blackballed by the whole lot of them). SO tired of EDS politics and mental weirdness- just want to get to solutions, without the lousy high school drama.
Has anyone been evaluated for Multiple Systems Atrophy (Shy-Drager)?
Again, thanks for this beautifully written blog!
Been having this convo with myself over the past few days and hours.
ReplyDeleteShould I call my GP? Ah, no, he is on holiday this week and the only one in the surgery who seems to give a damn. He freely admits he knows nothing about dysautonomia but at least he actually assesses and attempts to treat signs and symptoms. And listens and doesn't make me feel like a hypochondriac freakshow. Well you might get through to a different doctor, and you never know they might be "the one". Yeah, but how would I get to the doctors anyway? I cannot get out of a chair unaided.
What about going to A&E? and what good will that do? 4 hours in a waiting room on a cold metal chair while the cacophony of angry drunks, angry people having serious mental health issues, generally shouty angriness that I cannot cope with right now. Doctors who do not understand and who will either admit me to an overstretched ward where the nurses attempting to look after 12 patients each can barely cope and so cannot monitor me properly anyway. I would be better at home where at least I can get myself meds. and water. and salt. and lucozade. and I don't have to put up with some wet behind the ears newly qualified doc telling me "you shouldn't be symptomatic of a hypo at 3.5mmol/l" or whatever and anyway, once again, how would I even get there.
Why not ask a friend to come over? well yeah, maybe, but I don't want to worry them. People don't see me when I am this ill because I am too ill to see anyone. Them worrying won't help.
Yeah, I am probably fine, probably overreacting anyway. Waking in the night having a hypo, tachycardic, drenched in sweat and hallucinating (twice) is normal, isn't it, I am just being melodramatic. and the tiredness, nay extreme fatigue is probably from the 14 hours of disrupted sleep. I mean, its normal for it to take almost half an hour to get upstairs, isn't it, gives you a chance to have a good look at the skirting boards (they need cleaning).
Its laziness, probably, that means I cannot get out of my chair. And the fact I can only shuffle, as my feet won't lift off the floor, well, the gravity is just a bit strong today I guess. etc.
Oh god I hate this so much. This isn't my life.