A Day in the Life of an FM/CFS Patient: #1

Intro:
I'm going to try something and make this a series of posts, so if you find you like them, you can read, otherwise skip to the others.
A Day in the Life...Will a glimpse into a day in the life of and FM/CFS patient which illustrates unique challenges faced by people like us every day. Some of us are healthier, and some of us less so. Personally, my abilities fluctuate, from day to day, or week to week, which is another reason I think this might be beneficial, for illustrating that.

I worry that all these details will be tiresome for some people. But then I remember that it is my aim to help people out there going through what I am, and I think that just maybe, if they see their own lives in my words, they will know that they are not alone in dealing with the hassles of life with chronic illnesses such as FM/CFS. I know it lifted my spirits the other day, when reading someone else's blog, I came across a story that sounded like something right out of my life, but that I'd never shared with anyone, because I felt like it was something I alone was dealing with. It was really good to know I wasn't, and next time I find myself in that situation, I will remember that, and I think it will lighten the load a bit.

As for any non-patients reading this blog, my hope is that I will help you to better understand your loved one and what they deal with from day to day, and raise awareness of how these diseases interfere with everyday life, and better understand why we need to raise awareness, and continue to encourage research.

So here goes...

Today started out well. Lazy Sunday. Slept in as late as I wanted.
Got up. Didn't feel tooo stiff, or sore. Place all to myself.
Took my allergy medicine, to stave off the more and more frequent asthma

attacks.
Ate, watched a little TV, and felt like CLEANING.
This was a big deal. It made me HAPPY! (I grew up with a clean-freak Mom
and I've been known to practically have a meltdown when I have to let someone see my apartment a mess, which I can assure you NEVER happened pre-Fibro). Lately, I've been having a hard time feeling up to anything that practical though, guilt or no. For some reason, my stamina has PLUNGED, meaning I get worn out FAST.
But today, I felt about as normal as it gets, and decided to put it to good use!
So I tidied up the living room. Tidied up and organized the kitchen.
Same for the bathroom. I was hoping to get to the real cleaning, sweeping, mopping, dishes, that stuff, but I was already worn out, feet aching threateningly, and legs tired, and I'd promised myself I'd do some Yoga, too. (Lately I've been trying to put into practice the idea that even if I start out feeling great, and feel really motivated, that's no reason to drive myself into the ground. Simple logic, right? Unfortunately, once I get started, I want to do it ALL. Just call me the Queen of Excess!)I hoped maybe the Yoga would stretch me out, relax my muscles out of
their complaints against the tidying up, and I'd manage just a little more, but I reminded myself not to push it. Still, I got part of dinner cooking on the stove before I got started. I tried to be extra careful not to stretch too hard, as good as it felt, because I've gotten totally out practice the last weeks, and last time, even chair yoga strained some muscles. (That's really a new low, I don't know what's up with that! The great thing about this Yoga program, which I reviewed below, is that even on bad days, it made me feel better, and there was never any real fall but...before. But last time, I could barely walk for a couple of days.)

The Yoga felt really good. I felt things releasing, muscles finding more normal resting positions. A little more relaxed and centered. But, my body felt even more shaky after, mainly from the lower back down, and my shoulders down to my hands. Weak, and shaky. I figured maybe I just needed to lie down, rest, and it would pass. So I did, but it didn't. And the rest of dinner was still waiting to be cooked, so I did it. But I was hungry, and thinking maybe my blood sugar was low. So I drank some milk w/protein mix.
By the time dinner was done, my hands felt so weak, I was afraid they might give out unexpectedly while I was serving (my fingers have been known to do that) so I figured I'd better ask for help.
My Dad, had just gotten here, so...he got to do the honors, and I went and
got my trusty Thermaphore pad to see if it couldn't coax my muscles into relaxing while I ate dinner. Unfortunately, I was too tired to hold much of a conversation, the effort just seemed like too much, so I don't think I was much fun at dinner, maybe, just maybe even a little cranky...
Funny, I'd been sooo happy to have gotten some cleaning done earlier! But
in reality, I realized all I'd really done was give it a lick and a promise. I tried
to tell myself that at least the illusion of cleanliness was something. The place definitely looked a lot better, at first glance, anyhow.
It's just crazy how fast I've gone downhill lately. I'm actually HAPPY to stay home Friday nights and weekends lately, especially after that concert I forced myself to go to. I'm actually kind of relieved that I don't know anyone out here, because if people were calling me to go out, then I'd have to deal with the feelings about a.)Having people think I'm no fun (the horror!) or b.) Wanting to go, and knowing I shouldn't.I find myself having to lie down so much more during the course of the day,
and my blood pressure hasn't even been feeling low lately. Even sitting at the PC is a lot harder on me than it used to be. Usually when I get up, I'm stiff at the waist, takes a second for me to straighten up. Lately the top of my back hurts and is so stiff and bent, I feel like I'm going to become a hunchback! Kinda funny, I guess! Unless I do!I think I'm just wayyyy overdue for a chiropractor visit. Unfortunately, I don't see the finances granting me such a luxury any time soon. No matter how
hard I try, I can't seem to find the energy to get a steady income going.
(I'm waiting on the infamously screwed up Social Security Disability Process. This is Appeal #2, Year 2. Next decision: Approximately 16-22 months.)
So odd, you'd think after hanging in there through the last couple of years,where I didn't even know if I'd have a place to live from month to month,continuously, for TWO YEARS, now that that problem is taken care of, that I'd be doing so much better. But maybe I was on the verge of collapse for a long time, and my body was just gracious enough to wait until the right time.
Maybe it's not such a maybe. Because I felt like it so many times, like I just couldn't possibly go on, keep jumping through all the hoops, keep being disillusioned at things not working out. Being so tired, feeling so sick. I FELT myself pushing myself beyond capacity, and then some more. But it didn't kill me, so I can't on pushing. (Like Missy said in her comment to my last post, bad idea. But I really had no choice.)
It's hard to know what to think. Part of me says, okay, the basics are taken care of, so relax for a bit.
But part of me fears everything is still on the edge of spinning out of control,
and if I don't take steps and take some action, things will go to hell. Part of me says, hey, it should be easier now...take advantage of that and maybe life could be normal again. And part of me also wonders, what if I'm deteriorating from not trying enough? Maybe it was the trying that was keeping me functioning.
These are the types of dillemas a driven, productiveness-obsessed person with a chronic, fluctating illness faces. Especially one who abhored financial instability, and now finds herself stuck in a neverending spiral of it.
So much guilt and confusion.

Oh, and just to top things off, my beloved heavy-duty heating pad blew it's fuse a little while ago. That's where that whole relaxing for now plan blows up. I can't afford to relax. Yoga may be a temporary substitute for the Chiro, but I'm afraid if I put it off too long, I will join my many fellow FM friends who are in constant, excruciating pain, and knowing I might have prevented that...it's just too high a cost. Relaxing is just not an option. You can never truly relax when you're broke, anyhow. I have to find a way to make a living, sick or not. There has to be something I can handle. I can't believe there's not a way...

Well, I have stuff in the works. But sometimes it's just hard to imagine if the pain and stiffness get so bad from the extra time I've spent on this blog in the last week, and if I get so wiped out just tidying up around the apartment, how I can manage more?

No choice but to try though. The good ol' U.S.of A., land that I love, is just not the best place on Earth to be when a chronically ill person.
In England, or France, if my doctors were telling the government I couldn't work, that would be the end of it, I wouldn't be living in the lap of luxury by any means, but at least I could quit worrying, see the doctors and get the treatments I need, be sure to get all my medications, have some peace, and have a better chance at getting better. But here, the government would rather believe some doctors who talked to me for 5-10 minutes than years of medical evidence from my own doctors, and would sooner see me on the streets than help me. It makes me ask, how many people aren't as lucky as I am, and do end up on the streets? I swear, one day I will found an organization to help those people.

For now, I will remember them as I vote on Election Day. Five thousand dollars a year for health insurance just isn't gonna cut it for people with real medical problems, if even for the average Jane. We need universal healthcare, and there are already good examples to follow. We just need someone who isn't afraid to do it.