Thursday, December 8, 2011

A Day OFF!

Finally, tomorrow, no appointments, dinners, or birthdays. I've been dying to write for over a week now but was just too tired to summon the will. Seems like every second I'm not doing something I'm trying to rest...but as I was trying to explain to my Physical Therapist today, I need a LOT of rest! Once I get exhausted like this, it takes 2-3 days of doing nothing, and I mean pretty much nothing, to get back to my "normal". I have to say, I almost didn't go today, because I knew she was going to get on my nerves, little spitfire dynamo that she is, and I was so tired, I just wanted to go back to bed or at least RELAX. And sure enough, she has to argue with me about every little thing. I tell her I need 9 hours of sleep a night to be at my best, she says no, that's too much 7-8 is enough. (Nevermind that I only got 5!) I tell her my cardiologist agreed with me that exercise is okay, but she wants me doing no more than 10 minutes on the recumbent bike to start, and Ms. PT wants me to walk & goes on a tirade about that. (Fresh air, blah, blah, whatever,I agree but I have an anxiety disorder so I hate walking around by myself in a place where everyone stares at me; just what I need, more stress?!) I tell her hopefully next time I come I will not be so tired, because I can't focus or coordinate the exercises she's teaching me and she says, no, I want you to come when you're tired and at your worst.(!?! I'd get it if I was in pain, but I'm talking when I'm so exhausted I can barely hold myself up and I can't think straight, and therefore can't learn the exercises properly, which makes me less likely to do them at home.) And this after she's talked for half an hour! Oy,oy-oy.

When she finally tried to tell me that I felt like I needed to sleep because I was depressed (which I totally have NOT been lately! Upset, frustrated, overwhelmed,at moments, maybe a day or so, but depressed, no.) I finally had a little tirade of my own. Ha, writing this I'm really fully realizing the nerve of her trying to tell me I don't know my own body! Yes, I know my health could be managed better, but I've been working my butt off on it lately, and if I'm excruciatingly tired after days of not being able to rest properly or even get enough sleep, it's because I need to rest, my body, and my psyche! It takes a lot of will power to keep going when you're feeling that bad and it wears you out mentally, too! Yes, I know feeling tired all the time CAN BE a symptom of depression, but I also know all too well what depression feels like. (And I always got out of bed anyhow.)

Oh my, this is turning into a rant, isn't it? Well, long story short, I ended up cutting her short a bit after I'd explained to her 3-4 times that I understood PT required my effort to work, that I'd put so much thought into whether I should be even trying it right now with all I have going on that I even spoke to my therapist about it yesterday, and assured her that because I finally have a break from 2-3 appointments a week (sometimes a day!) and all kinds of other craziness, I would now be able to focus my full attention and make the effort and reap the benefits. The reason is, that she kept trying to tell me about some guy my age who had been in an accident but did his exercises and saw rapid improvement despite having to work 2 full-time jobs...which is great for him, and yes, I know, PT can do wonders if you work at it...that's why I'm going, and why I'm telling her I plan to start taking advantage of it. See, anyone who's not sick reading this will probably do like my aunt, say I'm exaggerating, but being this chronically ill IS like working two jobs! And yes, I HAVE worked two jobs before, so I do know what that is really like. But just getting from day to day, taking care of my basic needs, stuff that most people take for granted, for me, that's as exhausting as a full-time job. Then add the marathon of appointments, followup phone calls with lawyers, doctors, faxes sent & received, social services issues, more faxes sent & received, prescriptions to pick up, getting records together that pertain to each specialist, figuring out how to get money for gas to get everywhere, how to stretch my budget, plan my days, micromanage myself so I can keep on doing it even if my brain fails me (thank goodness for electronic calendars and lists!) and managing all my symptoms (nausea, upset stomach, tachycardia, low bp, anemia, numb/tingly and cold extremities, near-blackouts, spells of being freezing & not being able to warm up, night sweats, allergies, pain, weakness, ovarian cysts twisting, irritated bladder, need I go on?)Add in some holidays, new foster kitties & making the house presentable, and mine and my brother's birthday (I had to get up early on mine to sell a piece of furniture I'd put on Craigslist, and then spent the afternoon trying to convince myself to go to my brother's to celebrate BOTH our birthdays and being unsuccessful until I finally gave in and took a nap...and went.)Now try stuffing random things you have to do everyday anyway in all the little cracks of free time...Like I finally told Ms. PT, I'm so exhausted from all that I've had going on and because my body is asking me for rest, my mind is so tired of pushing it, that if I push myself any harder I'll be on the verge of a nervous breakdown, lol. I then reminded her that I do have chronic infections taxing my body and am coming off medications to manage them, too...And then she tells me I need to stop thinking of myself as sick. Which I understand, am already aware of, and I actually am doing better at, but when I'm at health appointment having to explain myself it kind of does come into play... (I mean, seriously, if I sat around thinking about how sick I am, would I really have even gotten through the last few weeks?) Although it's been exhausting, and I'm glad I get a much needed break, it's been wonderful in a way, to feel like I'm living again, doing all this stuff, so despite the fact that I've been dealing with medical records & Disability cases & specialists galore, I've mostly been busy just living...no time to dwell on the bad or cry about the world collapsing around me, or people being mean, or anything, really. If I did, I simply wouldn't make it. Even when I'm busy keeping my symptoms in check, I hardly notice, it's become almost automatic. If I'm nauseous, I take some ginger. And go about my business. If it doesn't go away when I realize it's been awhile, I take some more, or try another remedy. Then continue. If I'm feeling weak, tired, cold, in too much pain, or my back or feet are telling me, I rest. Then get up & continue. I don't sit around thinking Oh no, OMG this sucks, I hate my life, I'm so nauseous/sick/blah. I mean, I probably actually took it to an extreme, which is why I stopped trying to get help, so I could think about it less, lol, and why I'm having to see all these docs now as part of taking care of business. (Well, that and it's really damn complicated and exhausting, especially when you have no insurance and have to beg for every little bit of help.) Now that may be hard to believe after reading this rant, that I don't focus on my illness, but...well, this is my place for that.

Alright. No more dwelling on this negative stuff. Whatever. I'll do my PT exercises from now on, I shall get my rest & be ready to go, and if Ms. PT tries to lecture me again, I will cut her off again, cuz I'm over it. I know I'm doing my best, and also that my best will be better next week. My next post (oops, did I say that before?) is about the awesome cardiologist I found who can and is actually going to try and treat my POTS! How's that for an awesome birthday gift? I'm so grateful that this little marathon of doctor's visits has been fruitful, so very grateful for all of my docs, and yes, even Ms. PT, because I know she means well, that tiny little dynamo.

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