Most of the rest was written yesterday, what I call 'live blogging'. I imagine the general public envisions 'spoonies' laying around on the couch being tired all the time, and oh how I wish that were the simple case yesterday...
This is a writing exercise while I deal.
Years ago, all my symptoms were a big vague nasty mess. Over time we've been sorting it all out, alleviating this, working on that, slowly sifting all the things down to specific locations and causes, which isn't easy to do with referred pain from nerve injuries on top of a nerve disorder like fibro.
Today is one of my tough days. It's not anything new, or particularly different, except that now we're much more aware of what's going on, and it's becoming so easy nowadays to connect symptoms to triggers. Once this particular thing gets triggered, the symptoms get very confusing. My blood pressure spikes to the moon, I feel confused for awhile, sometimes my throat hurts for no apparent reason, ears ring like mad, face goes numbish, a maddening itch behind my eyeballs drives me crazy, and occasionally some sort of headache shows up. I've lived with this for 35 years, and it's been weird enough to make EMTs jump and flummox doctors. I've lost count of the variety of imaging scans I've had of my head, neck, and brain, with no obvious causes. Things that keep being ruled out are multiple sclerosis, autoimmune flare in the blood vessels in my brain, strokes, tumors, syrinx of the spinal cord, bone spurs, whatever you can dream up, they've looked for it.
My latest conflicting treatment challenge is CPAP. I love it. I sleep so good with CPAP. My apneas are down and I'm having a really good spring in general compared to years of extremely difficult springs, but it's focusing my attention now on this other thing.
I survived being ejected from a car and lived with and tolerated thick scar tissue that grew around one helluva whiplash for decades. I've been through so much pain that it almost seems ludicrous to still be having problems since we've been able to knock the pain levels way down via several years of physical therapy and now sleeping so well on CPAP. The problem, as much as I can tell now, is laying a certain way that puts pressure on the craniocervical area for too long, and then spending the next several hours or a day getting through some pretty outrageous blood pressure spikes as that area readjusts to the pressure being taken back off from laying on it. CPAP sleep hasn't necessarily made this worse, but it's almost accidentally helped highlight it since I hold still much longer at a time in my sleep, and since it's also helping me feel better enough to notice more specific cause and effect.
I lived with that pressure for so long under so much duress that you'd think this would be a piece of cake. Sudden high blood pressure coming from the top of the back of your neck feeling squeezed right under your skull is technically considered a possible emergency situation in some cases, since it could be from so many dangerous things.
It's very uncomfortable living like this. I can hardly believe my normal everyday life used to always be this. I've come to enjoy relief from this more often that not nowadays, but once in awhile, all my attention is riveted to waiting out another triggered event as calmly as possible. There is nothing more miserable during this kind of event than an ambulance ride, strapped onto a gurney putting pressure on that spot through all kinds of traffic for at least half an hour (because I live in Mirkwood) and then spending another 6 hours in ER and finally being offered a pain med that I'm not supposed to even take because there is nothing else they can do, and the pain med super spikes the apneas, and then it's all about recovering from going to the ER. So... I'm blogging instead.
I've talked about other triggers I wait out on some days, like costochondritis pain mimicking heart attack or pulmonary embolism pain. Thank goodness I'm not having actual PAIN pain today, but it's still very unnerving. I've learned how to remain calm even when my blood pressure goes nuts and it usually comes back down over time. I'm still holding 157/102 a couple hours into this, and if it doesn't come down I'll probably go in. My neurologist has a pending MRI on order if symptoms change, and today was unexpected, so I've called and got an appointment for this week, but ER might just do it themselves if I go in.
And since this may be involving CPAP, I might have to pull my sleep doctor in for opinions. I keep telling myself people can live for years with this kind of stuff, and then a little voice says "Yes, and I already have..."
~4 hours later~
Triage just checked me in at 201/115, so I guess I made the right decision coming in. This isn't my usual flare response. Kinda going into overkill, so super flare maybe. I've been firmly removed from grocery duties going forward, per @bonenado. As careful as I've been not lifting Bunny or doing any heavy work, I guess something caught up with me and now I'm paying for it. (A 15 pound frozen turkey has inspired Scott to shut down all my grocery shopping for awhile... I make poor decisions when I'm shopping alone, and this isn't my first backlash on overstepping weight restrictions.) Welcome to pain management 501, where it's all so old hat that I'm the most laid back person in a waiting room full of people popping with emotions and misery. One guy got so hostile with fear and panic that security had to escort him to a private room and hold him.
I wish @bonenado would live tweet his thoughts from the waiting room. He'd be super popular if he'd live tweet at all, because his sarcasm is unique to him, kinda cartoony. I'm just glad he drove me in. I told him he could go home and come get me later, but he'll entertain me by alternately crabbing, sniping, and mocking in really funny ways.
I've reached nirvana. Everything is surreal and I'm almost floating out of my body. The pressure around my upper neck is unreal.
And the cosmos perfectly timed that with triage calling for Randy Marsh. It's official- I'm in cartoon land. Wo, and the cops just escorted that other guy out.
~~~~~~~~~
Ok, now it's today. It's not unusual for my blood pressure to spike during pain response. What's unusual is for it to not come back down after 2-4 hours, or to keep steadily rising. High blood pressure doesn't frighten me any more. I've lived with pain spikes for so long that it's become more drudgery than anything- oh, this again *ug*, guess I'd better go make sure I'm not heading for a stroke... You know, because my mom went through hundreds of TIAs before she graduated to several major strokes. So far I've never had one vascular accident, and my blood pressure has gone much higher than my mom ever clocked hers at. At the core of my blood pressure management is pain management, so this is a pain management problem. But I wasn't having 'pain' this time. Just that godawful pressure at the base of my skull feeling like my head was being pumped up like a water bed.
First thing is always look into what's going on in the area, and the ER doc x-rayed and dx'd neck strain (one doctor years ago couldn't believe I was walking around with a "sprained" neck, he couldn't believe I lived like that for years) and they mostly just waited out the blood pressure and sent me home. What was so weird to me was that this is the first time I've gone through that without PAIN.
Any big change in a major nerve trunk area is a big deal. Not feeling pain isn't always a good thing when the ship thinks it's going down. I *hope* this is a good thing, that I'm progressing into a more healed state, but even a mild sublaxation putting pressure on the nerve trunk right below skull can be ~not good~. You wouldn't believe some of the long-term treatment options some people go through for that kind of stuff.
Just a reminder- anyone thinking I might be making a big deal, just wanna see you live through being ejected out of a flipping vehicle, which I didn't talk about or bring up for YEARS while I was hiding all kinds of problems and challenges, and now that I'm aging through all this nerve damage, I'm finding out just how much suck can really suck. Every day has to be strategically planned or I have a very bad day. Yesterday was me dropping the ball.
Anyway, I'm fine, but my neck is super tight and the rest of the week is designated recovery now. Just rest and keep my workload light. I'll visit with my neurologist tomorrow (:edit: Thursday, lol, just discovered it's not Wednesday) and see if he wants to continue checking on this, possibly cave to a steroid shot in my neck if he suggests it (*ug*), continue with my home core stabilization exercises.
>=l Stupid frozen turkey... I can't even carry 15 pounds 25 feet from my car to the fridge.
Ok, let's focus back on having a good day. 😁 Special nod to a couple lurkers in Europe who I know have been fandom webmastering for years through ugmo conditions (I've super lurked you, too), and the rest of my day is scheduled out- be silly, play minecraft, fold laundry, be silly some more, eat something, get supper laid out, maybe get a shower, be extra silly and play more minecraft at the same time before my people come home, and then love them while they eat supper and decompress from work and daycare, because they're why I'm still here hanging on.
