Friday, May 23, 2014

POTS Chronicles

Oh my. This is starting to really get boring. I think it's been about 6 weeks, this POTS flare-up that's plaguing me.  Post exertional malaise is in full effect. I found a girl to help me out around the house, help me get the place ready for a roommate, and even though I'm mostly just overseeing her, I'm wiped out the next day, and the day after I've only managed through will power and pain pills. My heart is palpitating as I type, both sides of my neck are uncomfortable with that feeling like someone's got a finger on my artery, and half the time I'm afraid to eat... Especially breakfast, because my heart starts pounding as soon as I get up, and takes 30+ minutes to settle down, so I'm afraid food will start it back up and tie me to the couch even harder, or my stomach will spazz out, literally, it seems to go into a spasm after eating 1 out of 3 times lately. I feel weaker and weaker as time goes on, probably from spending so much time on the couch, trying not to aggravate things. Fortunately I still have one of my recliners, and the last couple of days I've discovered why I was so fond of it in the past. Maybe using it instead will help slow down the weakness. At any rate, it's more comfortable, with it's big comfy arms, and it's supposed to slow down atrophy of the leg muscles or something, so they're recommended when you have POTS versus a couch. I think it engages your core a bit, too. Right now I had to switch to the couch because my laptop needed to be plugged in, and even though I've got my legs curled up and am leaning sideways so I'm not fully upright, my head is hurting a bit, it's like I can feel the blood vessels stretching across my scalp, trying to grab onto as much blood as possible or something, grr.

I'm toying with the idea of starting on my recumbent bike again, maybe super slow, 5 minutes. I wonder if that could be what triggered this flare up? I was up to 30 minutes, it was awesome. I'm not sure that was it though. I've had a half-formed theory for awhile now, because I've noticed that I seem to get worse, sicker and weaker, when I'm not stressed out. Whenever I can really start to relax, it seems like I get worse, but when I'm stressed, even though you'd think that that would aggravate things, it's not as bad... It will be hard, and I"ll swear I'm about to break down it's so hard, but I don't. (Or at least I've never gotten that far, although I think I was close last year before things started to go right.)
So anyhow, I think maybe adrenaline has something to do with it. Like my heart and Autonomic Nervous System freak out when I don't have enough and my system starts collapsing. I suppose I should do some research on that, but it's so hard to concentrate, and I'm so tired of researching... It's just so discouraging, because I want to get on with my life so much, and I'm stuck here, and I know I'm so lucky to have help now, at least I don't have to worry what will become of me if I get worse, but I've also realized, I don't WANT someone doing EVERYTHING for me... And I so wanted to start having more of a social life. I got fed up a couple of weeks ago and went out with a friend for a bite and drinks, two things I'm normally afraid to do when things are acting up, and sure enough, it ended disastrously with my almost passing out while sitting down  and then vomiting explosively all over the bathroom. I also had to make up some excuse not to go out for lunch with my friend on his birthday, well, I didn't HAVE to make up an excuse, but I guess at the time it seemed preferable to be evasive than pathetic... Ah, so exhausting. Well, I've emailed a POTS specialist for a phone consult and am waiting to hear back. I wish she'd order some testing

Friday, May 9, 2014

Musings on a Manifesto

Today as I sat waiting for my new allergist to finish discussing IT solutions with an employee (or perhaps a salesperson or contractor?) and order the tests he'd told me he was going to, a headline on my phone's News widget caught my eye: ME/CFS Manifesto . 

Whhaaat? I thought. Intrigued, I tapped on the ticker and went scrolling through the actual app for it. (Fortunately, I have it customized, so I have a whole little section that imports any news with the key word CFS for me.) I found it, was even more intrigued to see it was from the website (which I consider to be a premier source on all things CFS/ME & FM) so I tapped on it, wondering what this could be about, what the angle was, what in the world exactly was a CFS Manifesto WAS.

I haven't done much digging, so I can't say I'm familiar with it's author, a Mr. Llewellyn King, but all it took was reading this small paragraph to know he knows CFS/ME:

I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -- and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.

Lately, those ideas have been floating through my mind, spinning around, I've been examining them from different shapes and angles as they spin like a 3-D hologram, every which way, as I wonder, if I will ever have a chance at happiness again, especially if I really have forever said goodbye to the person I was. Oh, to be honest, I know that I have said goodbye forever to bits of myself and my life as I knew it... My 20s are gone, but at least I had some of them, my 30s are the big shock, I completely feel like I missed out on them, and now suddenly, I'm at that point where time seems to be running out...Just this evening I overheard a TV doctor telling this 35 year old woman that it was too late to freeze her eggs, that she was at the time when pregnancies started to automatically be called "high risk" and she should just do her best to get pregnant ASAP if she wanted children. Ha! Imagine! I thought to myself, well, maybe since most people think I'm about 25 I'm exempt? Ha. Right.

There's been the whole trying to find help thing, too. I've more or less accepted it and stopped feeling quite so guilty and awkward. Even having more help than I've ever had since I got sick (though not as steady or as much as I need) I can see now that try as I might, I can't keep up. Just trying to find help takes excruciating willpower! (It's not like I can just call up an agency with a budget of $10/hour!) Especially when I'm laid up as I have been the last 3 weeks or so with my blood pressure so low it makes me feel like an invisible hand is choking my jugular, and my heart dancing around like a spastic butterfly, and otherwise stifled by anxiety and an unusual, motivation-sucking form of depression...

I'm looking for a roommate, and it sucks too, because I know when I find one, I will be faced with more evidence of my limitations, as I am forced to watch as they lead a normal life, perhaps, ask me to join, and I can't fake it or keep up for long. I hope that they won't judge me unfairly, assume that they probably will, and that it won't be such a big deal because it's almost to be expected, and for once, I won't be the one who has to leave my home because of it.

Now, even as bad as things have been, and how much I fear a future where I will be left with nothing because of my illness, again, I don't think I'd go as far as to say that my daily life is a tool of torture and punishment...but I know that in the past there have been times where I have felt that was true, days when I have lay in bed, sweating, heart racing, body tingling, feeling like an elephant was sitting on my chest, wondering if I was going to make it through this, and that for many people who suffer from these illnesses, it IS some form of torturous hell EVERY. DAY.

That said, reading this man's manifesto gave me hope. I don't know enough about lobbying and fundraising and all that, but if what he says is true, I hope we can all pull together and do what we can to facilitate it. For a second, I contemplated volunteering to go to Washington and do it myself, and then I remembered, again, that I'm not the person I once was...sadly, but still...delusions of grandeur (and health) aside, if we could do this, and it worked, that would be amazing. Winning my SSDI was a reprieve...but I've always known it was only that. Even with money, I am struggling so much, nearly every day, I have to try SO hard. I know not everyone who has these illnesses is as alone with it as I am, but I know there are many, and alone or not, it is a war that should be recognized, aided, and abetted. If you agree, spread the word. Read, then share this article: A CFS Manifesto

Think of things you can do to help. Comment. Message me. Organize. Kickstart. There are so many of us. If there's anything I've learned through this illness, it's that when no one will help you, it's up to you, and you have to at least try. So let's do this.