My Full-time Job...and Other Catastrophes

Ha! I bet at least one of you thought I finally "decided" to go back to work. Nope, sorry. Definitely not yet, and definitely not full-time. I already have a full-time job, which is something people do not understand. Lately I've been hearing it from my brother. He just assumes I should take on things he doesn't want to face because "I don't work".  Honestly, I don't have time to work. Taking care of myself is a full-time task for me, one I can hardly manage to do as well as I'd like. See, this job changes every day. Every. Day. Some things have taken discipline, and work to get right, like taking my medications. (I had to get a pill box. No, not like  M-F one, or an AM PM one. An actual 5x7 box to fit most of my essential medications and supplements. And I still have to decide every day which to take. I get to do things like try to figure out what is causing the pain in my lower abdomen. Is it my bladder (IC)? Is it the Endometriosis or Adenomyosis?  Is my belly distended from one of the above, or is the stomach virus acting up? Why am I nauseous? Actually, that doesn't really matter to me, as long as it's gone, so I gobble down as many ginger chews as it takes. Same if my stomach is upset. 

How badly do I need an anti-inflammatory today? (Are my pinky joints sore & red? Does my neck feel like I have a scorpion attached shooting irritating venom onto the vertebrae?) Is my stomach up for it, will the irritation to my stomach take that discomfort over the edge? 

Is it worth it to take 1 anti-histamine because I'm running out when it usually takes 3 twice a day to keep my allergies managed? Or do I take 2 and hope I find money to buy more sooner?

Did I get distracted and forget to take that beta blocker for my tachycardia? Or is my body just not responding so I need to take another and add something else?

How many days before my period? Is it still safe to take the blood thinning enzymes that help my allergies and inflammation and stomach? Or is it cutting it too close, risking copious bleeding that would be inconvenient and take me back a couple points over to being anemic and lower my volume even more, aggravating my POTS & OI?

I have no motivation and no energy. Must convince myself to eat breakfast. Can I summon the willpower to cook? Will I be okay up on my feet that long today or will it just wear me out and ruin the rest of my day? Will the food agree with me? Or will I end up having to lie down for hours? Which leads to anxiety because I've gotten nothing "productive" done. There are doctors to be called, forms to be filled out and signed and faxed for free or discounted medicine, utilities, stray dollars and cents to be transferred to cover bills and necessities, anything that can ease the stress of the never-ending cycle of running out of medications, money, and getting behind on my bills. 

I'm dying to go to the gym and use that wonderful recumbent bike. To sweat and push myself and feel like there's something physical I can STILL do. But even if I hadn't been having dizzy spells, and my stomach wasn't draining the energy out of me, I need to shower. But I can't shower, because I don't have any clean towels or clothes, so I have to do laundry, and when I'm done with that I'll be too tired for the gym.

Oh, wait, it's too hot to do laundry. I'm barely keeping cool, and my body is not coping as well as I thought with the heat, not regulating properly, hence the dizzy spells, squeezing headaches every time I stand up, crappy balance, and feeling like I'm going to fall over, even hanging onto whatever wall or doorway or whatever.

Did I mention I need to call the over-worked Community Clinic staff to follow up on a Specialist referral, important test result, fax, make an appointment, choose one, or a couple. Wait on hold. Get voicemail that I know from experience won't get answered for a week or two. And billing at the hospital ER I ended up going to because I was in pain & couldn't afford to go to another county for the third time in a week to try and get the tests that I needed that they keep telling me the other doctor will do? I have to stop and rest for a bit.

But it doesn't last long. My car insurance is expired. I'm out of a couple of medications. I need toiletries, from the 99 cents store, if I can recycle some plastic bottles for the gas to get there, but if I leave this late in the day, there won't be parking when I get back, exhausted, and not be able to walk a couple of blocks, with packages, purse, water, etc. It's hot out. And there might be lines. Lines are like a little piece of hell on Earth to people with Orthostatic Intolerance & related issues... Anxiety, sweating, feeling sick, trying to act normal, while shifting stances as subtly as possible to keep the blood from pooling...

And I forgot to talk to my lawyer's office. And a couple of other of things on the lists that are what keep me sane.

My family, who I'm lucky if I can beg and cajole to help me only on the very vitalest of matters, always has some drama or needs to be tip-toed around or want me to do something for them. 

My hair is turning greyer and greyer by the day, it's no longer annoying, it's almost shocking. And I can't afford to dye it. My nails are finally growing normally instead of splitting, peeling, and breaking down to the quick, shorter than in my life. At least that is a good sign. But I can probably kiss that goodbye if I go back to the stress of a few weeks back. It's not that I'm that vain and adore my nails, although I'm told they're impressive (when they're normal) it's just that nails are an indicator of health, and having them growing again was a good sign. 

I finally take a break from all the phone calls and thinking and planning and medicating, and stern prioritizing. I'm starting to feel that odd anxious sick feeling and forgetting to breathe that denotes I've been upright far too long, and I've got to lie down, for real this time, flat, so I turn my attention to the TV because if I let my mind wander, I will find something else I need to do like, at least empty the dishwasher, and end up with my upper back in that weird crippling pain from not enough blood getting to it. Then my brother gets home, just as I'm finally winding down and resting. And find some reason to get mad. Perhaps, that I didn't do the dishes. Which was actually on my to do list, but maybe prioritized too low?

And because, like I said, there is never a dull moment, or happy news in my family, after a day like this, I find out my Father, who hasn't bothered to get in contact in two years since he took off like a thief in the night and dumped the wreckage of his former life in my lap, all because I wouldn't indulge his bad behavior and I got maybe a little hysterical on him after he bailed, has had a stroke. And no one bothered to tell us. For weeks it turns out. 4-5 siblings he has, and each bearing them many cousins of mine, and not one said a word. Not even to my brother, who although he was very hurt and upset by his actions, never said a bad word to him...

So nevermind that I didn't go to South America to try and ride out the time till my hearing back in February because I was too sick and realized if I was going to end up in the hospital I wanted it to be in California rather than the foreign-ness of the 3rd World... and that now I get airsickness, with vertigo that lasts for days afterwards, and travelling just to Texas wiped me out despite wheelchair service, and that last time I went there I got altitude sickness that triggered acute episodes of POTS (and it wasn't chronic back then, like it is now) I was willing to go, because I know my brother couldn't handle it, he takes after my Dad and avoid confronting problems. No money, but where there's a will there's a way I told him. And this is what I do. I'm good at emergencies. I fix problems. I do more than I should for the people I care about, without thought to the cost to me, and then I get nothing in return. And I'm kind of tired of it. And I start to realize I couldn't and shouldn't do this alone. In fact, if anyone is not wanted there, it's me. Later, upon more contemplation and a little research, I realize just how foolhardy it would be to take on such a journey alone with my health in the state it is and the effect the altitude would undoubtedly have, unless I wanted to end up in the hospital there myself! After all, I had an episode so bad just from staying one night in the capital there that I came home on the next flight, because I couldn't stand feeling so sick and having no one really give a darn what I needed, and I swore I'd never go on a trip where I was so out of control again.  Really, I might just end up in the hospital here even before leaving here, I've been having old symptoms come back all this week. 

Plus travelling when sick takes extra forethought & preparation.  And somehow, still, all of this evades my brother. All he can see is how this affects him and that I don't work. 

I know my presence may not even be wanted there, and that my Father is in loving hands, and I have to take a back seat and let my brother step up for once. But I'm so tired of this life, of being sick, and helpless, and having a family that not only doesn't support me, but gives me no hope by the way they live their own lives. And I find myself having that feeling like I can't breathe again. I want to escape this nightmare of life where nothing ever goes right and everything goes wrong, but I can't give up now, and I'm angry that I can't do anything about it.