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.

PT, Fish & Tea

Well. Today definitely had some rough patches. I've been having that thing happen again where I wake up and can't stay awake, I have to summon all my willpower to try and prop myself up to a semi-sitting position, or else I fall back asleep so deeply it's like I've lost consciousness, and in fact, I've often debated whether or not I actually do. So that's annoying and been going on for a week or two I think. Usually not a good sign, it's happened in the past when I'm really not doing well, or on my way there.

Worse, usually even if I'm down in the dumps the night before, I wake up okay. I dunno, might it was that I had to answer a call from the doctor right after waking up, pushing me right into overdrive mode. No chiropractor after all this Friday, cancelled, it's a holiday. And I'd realized I had another missed call from them, the transcript of which I didn't understand, so I had to talk to that person too. Which reminds me, I have another phone call, another appointment to make, ugh. Oh, right I'd forgotten. Also an e-mail saying my Internet charge didn't go through, and not a penny more coming in...

So I was grumpy and trying to get ready without stressing out, debating whether to shower or not, that kind of thing. And then I called my Mom for something, she said something that struck a dissonant chord with me (something along the lines about examining what I may have done wrong to bring all this awful stuff on myself) and then I was just fuming, because even though it's totally irrational (unless little kids with cancer have done something wrong and are being punished for it too) of course I've asked myself things like that, more though, like, wondering if this is some kind of karmic payback, in which case there's not a thing I can do but live through this. Still, there's always the guilt, like, I should be able to fix this, I must not be trying hard enough...but you don't need to hear that ish from your own mother...

Anyhow, I was falling apart, feeling like imploding. Like, I'm emotionally, physically, and spiritually so tired, and I feel like I might snap, and where do I turn? But then it was time for my Physical Therapy Evaluation appointment and it was time to pretend to be sane again.

Which turned out to be a good plan. It was just around the corner, so close, and the Physical Therapist was just amazing.

This tiny little thing, cheery, not ridiculously so, but full of energy and on top of her game. Took an extremely thorough history, so much so I realized things I'd never put together before, also gave me some input on the severity of my back problems after looking over the new records/test results I brought with me, and best of all she was interested in the entire picture, not just my problem area, and came up with a plan to try and help with my general well being, not just strengthening my shoulders & stuff, although she wants to wait until I see my Neuro & Cardio docs to have them clear me for some of it. I hope she's not toooo overzealous though, she wants me to start cardio twice a week for 20 minutes...even though I told her I was barely managing 15 minutes and had been planning on re-starting at 10. Well, I will see...I think she's right, I need to do SOME exercise for my well-being. Not just my weight, which continues to go up, but my circulation, muscle tone, and sanity. So that was that...

Tomorrow, mammograph and ultrasound. Yup, they required I throw that first one in with the ultrasound, ick. I've always thought that whole procedure sounded barbaric, but oh well, just another indignity of the female human condition to endure. Besides, if I have cancer maybe I can finally convince the SSA I am sick! No, I'm just kidding, I'm sure I'll be fine. Besides, I feel my case is looking stronger every day...I think maybe something about me has changed, but these days, instead of feeling defensive when I go to the doctor, I find they believe me before I have a chance, they acknowledge that I'm pretty unwell & I've been blessed with a primary care provider that is on top of her game, and willing to do her best to help me, even if it means learning new things, and she even cared enough to suggest I get a cat! Ha! (For those of you that don't know, I had one for 15 years until December of last year, she got sick and passed away, and I'm actually allergic to cats as of a few years ago.) So she suggested a fish, lol. I actually think she's on to something. She convinced me to try doing washing 3 dishes every day, since that's been an issue that's frustrating me. Finally did it today, did 5 actually, lol. Flared my trapz again, badly, but I got to have soup and tea. I was feeling SO tired & stressed, like wired, uncomfortable, so I made some Kava tea, and the stuff is lovely...tastes chocolate-like and relaxes one.Totally got rid of the awful wired feeling. Yay for clean dishes! I so wanted to do more but something is something, right? What kind of fish should I get, any ideas?

Doable Exercise: Beat Fatigue with Yoga DVD

Found this DVD and decided to try it out. Found it was pretty good. Not all of it is quite as easy as Healing Yoga for Aches and Pains, but you have more routines to choose from, and there are even some you can do in bed, so it works out. I'm going to give it a long term try... And of course, if you want to buy it or check it out, click on the link below and go to my store. :)




Description
Beat Fatigue with Yoga' really is a unique DVD release. There are several DVDs available on yoga but most of them involve supermodels and perfect bodies. This DVD is for the ordinary person who gets tired; and that includes almost anyone. The programmes on this DVD are designed for people in different conditions. The DVD features Sue Delf, one of the UK's most experienced yoga teachers who teaches at the famous TRIYOGA centre in London and Fiona Agombar, author of the well known book also titled ""Beat Fatigue with Yoga."" Both have gentle and encouraging style, perfect for those just starting doing yoga, and those who already have a practice.

Pets, Walks, & Reiki

Managed the trip to the vet. It was exhausting, emotionally and physically. I got my Father to come with me, but I guess he didn't get that I needed him there for moral support, and for help if I got tired or my brain went on the fritz. As it was he took about 15 minutes to find parking (I had him drop me off, they were doing a little construction, plus I was late and overheating, but it wasn't more than a 30 second walk) and hadn't gotten to the waiting room until after I was called in. (Kinda like my last trip to the ER, where he ditched me to make a phone call without letting me know he was leaving.) Ok, trying not to be bitter here. Just another reason I can't wait for my SSDI to come through though, so I can get some help around the house & running errands if I need it, hopefully, cuz I get about as much help here as I did when I lived alone.

Anyhow, I couldn't remember exactly when the last time kitty ate a whole meal was, and the doctor was putting the pressure on, telling me it was really important to know the exact time, because it was life & death, basically. It ended up being a huge ordeal, because all I had was $60, and they wanted to do X-rays, which were almost $200, plus blood work for another $150. I ended up getting her an IV, which has helped, she ate after we got home, and finally is sleeping, plus I found out cats can take probiotics, so I'm going to try that before I go back to the vet Friday.
I was so wiped out when I got home, it really makes me thankful I don't have human kids, as much as I adore & want them, I can barely handle a cat!

Pets are such a comfort to the chronically ill though! Lately when I'm feeling really lousy physically and don't know what to do with myself, I brave the allergies, grab my kitty, and make her cuddle with me, and I feel SO much better. Silly, I know, but whatever helps, right? She's been my constant companion all these years, I just hope all the sadness and strife haven't affected her too much.

Speaking of which, I had an amazing weekend. I started out Saturday, feeling stuck and resentful and not wanting to be in these four walls. I was trying to find a reason to get out, and I realized I could just make it to the gym...so I did, ten whole minutes on the recumbent bike, and a minute and a half on the arm cycle, woohoo! I left feeling SO much better, and decided to go walk in this parky area next to a creek, close by, find somewhere to sit and look at the duckies...I found them all splashing around, took pictures, got teased by butterflies, had a ladybug land on my phone...it was lovely. I even did something I can never manage, I had a relaxed walk!
So I did that, and had a sort of wandering meditation (well, I did find a rock overhanging the water to meditate on, and a backless bench to lie on & contemplate the blueness of the sky...then came home filled with joy and with the stuckness lifted. I was giddy, and had tons of (very sporadic) energy when I got home, and was tempted to just go continue meditating, hell, meditating my life away...I figured, hey, if it makes me that happy, and is that good for me, why not? It's not like I have a job to go to...Maybe the extra rest will do me good...

Then Sunday I went to a Reiki Class (an alternative healing therapy that sends energy through your body to heal your chakras & stuff) got & gave some healing, and had some interesting experiences. I left there feeling like none of the bad stuff matters, all barriers were down, and anything was possible. I felt like my writer's block was possibly lifted, fear dissolved, anger & resentments set aside, just free. And maybe a little altered, lol. Anyhow, now I can practice on other people. I'm not sure I have a great talent for it yet (although that might just be because some of my classmates were actual psychics, no fair!) and am not really up to doing it on people as work, but I think I'd like to try some distance treatments, so if anyone wants one, let me know.

Night at the Movies

Had a rough day emotionally, so treated myself to a night at the movies, and saw Australia. Beautiful, inspiring movie. Made me want to drive cattle through the Australian Outback. But wait, I'm a vegetarian. Okay. Maybe run off to a dangerous country and deliver humanitarian aid and kick asses of people who use systematic rape as a weapon.

Yes, I decided I'm NOT going to be sick anymore, plain and simple. I WILL go out and be the badass chick I planned on being, save the world or something. Oh wait. I try that just about every day. Hmm.

So instead I'm thinking, I'm gonna get me a timer.A loud, annoying kitchen one. I'll work for an hour, and then lie down and rest on my heating pad for 15 minutes, then do it again a couple of times. I figure if I can manage to work for 3 hours a day, things can be far more bearable.
I have no idea if it'll work, my usual thing is that I kind of randomly get on a roll, and then I go with it until I can't, think, can't take the pain anymore or am feeling too ill.

But New Year, new things...

Besides, I got a financial assistance scholarship at the YMCA. so maybe that will help build up stamina, kill more infection in the sauna. Can't wait to get started w/that. I think my calves are caving in, no lie. They hurt when I went out. Okay, so maybe it was the cold. But they ARE practically non-existent...Maybe then I can give the horseback riding lessons another try, too. Such an amazing feeling. Unfortunately, muscles are so weak, they shook just from holding the reins up, and I was in full-body pain and barely able to walk for 5 days from the jostling. Maybe it won't be so bad if I'm in better shape.

Off to walkabout in dreamland...

Goal for the Week: Stretching

In an effort to re-introduce some structure to my daily routine, I've decided to take some good advice...and start stretching daily, and nightly. I've made room in the living room for my yoga mat and a chair to do my chair yoga routine, which I pretty much know by memory from watching the Healing Yoga for Aches and Pains DVD so many times.

I've noticed I usually feel so much better at night...It's like it takes my body the entire day to warm up, lose the stiffness, and get going. I feel more productive, more flexible. So I got to wondering if there were any logical reasons for this. Did it just take me all day to warm up? Was it the muscle relaxer I take at night?
Well, I hate that I've even been taking that muscle relaxer every night (though that's how it's prescribed, I just would rather not) and I'm so groggy in the mornings, that doesn't seem to make taking it in the morning a good idea.

So I got to thinking about the idea of getting my body going faster. A good friend of mine goes for a morning walk. While "real" exercise like that, for me, in the morning is out of the question, I do remember when I was in a lot of pain this past summer, and having really tough mornings, even though just the light movement and breathing exercises at the beginning of the video made me want to crumple into a heap on the floor, once I got going it felt great, and I was feeling a lot better, getting through the day much more easily, in a better mood, and more motivated.

So if I can get back in that routine...

Then, I was also reading another blogger who mentioned she stretches at night, and I got to thinking, that that although I feel better in a sense, and more productive at night, it's when I have the most pain. Lately it's been driving me crazy. Tension, cramps, spasms, you name it. Lots of time on the massage chair. And the Thermophore. (Which incidentally, just pooped out on me!)Maybe stretching or Yoga is just what I need to help me relax...The big goal being, to get back on a more normal schedule. Lately, I'm lucky if I'm asleep by 3am, and frankly, I'm sick of it. Especially with the days getting shorter, I want to be up and at 'em, as early as possible. And that's still usually later than most people, even at my best, so...

Wish me luck on my new routine additions. Hell, on the idea of a routine, period!

The Power of GENTLE Movement, Breath, and Mindfulness: Great for Pain and Tension!

I recently moved and found this DVD I'd forgotten I had, that a friend had sent me. I thought it was great at the time, but I slipped out of the habit of doing it, and soon forgot all about it. I'm sooo bad at sticking to a routine! Maybe that, and the fact that the beginning can be a little challenging for me, especially in the mornings, so maybe forgetting was my subconscious way of worming out of doing it, which goes to show what a mess I am, because the beginning is just breathing exercises! But even that is hard for me in the mornings!

Anyhow, I can't do regular yoga. Even so-called Gentle Yoga leaves me sore and aching the next day. The only classes I've been able to manage are Relaxation Yoga or Yoga for Chronic Health Problems, specifically customized for me.

Still, Chair Yoga sounded a bit silly...But believe me, it's not! You're not seated the whole time, but you do use the chair for support and to modify postures. (Downward dog is one that causes me to pull/strain my hamstrings EVERY time. But the version on this DVD is PERFECT. Stretches, feels good, releases your lower back, and no injury/pain later.

If you listen & follow their instructions, you can literally let go of pain by releasing the tension in muscles. It's really pretty amazing. Not to mention, at the end I'm so relaxed that the modified Child's Pose sends me right into a state of meditation.
I'm thinking of doing this twice a day now!


Off I go!

Check it out:






P.S.~ I've got codes for free Online Rentals, so if you're on a budget but want to check this out, ask me! (I know what it's like to be broke and looking for some relief!)