The Question Rises. Again

And the question is: Do I try and go back to work.
The same old question.

Right now, I'm not working, because I don't feel well enough. I'm tired of failing. I'm tired of making myself sicker everytime I try and hold down a regular job, or in the case of the last few months I lived on my own, trying to survive and keep a roof over my head.

Oh, I've made a couple of attempts to start a home-based business. But I get so overwhelmed with the ups and downs (I believe my adrenals are extremely fatigued, and my Central Nervous System gets over-aroused far too easily, been doing some research on that, which I will share soon)I end up giving up.

I've been trying to be patient and hang my hopes on the idea that my Social Security Disability could come through any time, and then I'll have all the money I need to seriously pursue holistic treatments that have helped in the past, try some new ones, and (here's the key) actually have the means to see them through to the end. ("The End" being my being cured, or at the very last well enough to work enough to make the money to maintain that level of wellness.)

But lately, I see myself declining in a whole new manner. It's not so much depression, as it seems to be a spiritual poisoning of sorts. I've come so far in other ways. I've progressed by leaps and bounds as far as acceptance goes. I've let go of the misplaced shame and judgment I'd felt at not being able to overcome my health problems and lead a normal life. I've felt much more like me than I had in years. But I'm so angry inside so much of the time, and the dynamics of the environment I'm living in is so warped, I feel as if it's a sort of darkness that is invading my soul, eating it up, and could ultimately destroy and warp the essence of all that is good in me if I don't take action to stop it.

My intuition tells me I need some energy healing. Experience tells me I need some adrenal supplements, which seemed to be helping a couple of weeks ago. I'm so anxious lately, like a generalized sort of anxiety, I've botched my diet...I probably bought $80 worth of junk food with my grocery money and ate it all in a week. It made me feel better. (Can you say headed for an eating disorder?)My stomach's a mess, IC is acting up, and I've gained back some weight.

I need money so much. I'm thinking of just doing it. What's the difference anyhow? I don't work and die a slow, spiritual death, or I start getting some gigs, which maybe I won't do well, but they will get me some cash while it lasts, get me out and around people, which will lift my spirits, and help me afford treatments that might save me or at last make me a little better.

It seems worth the risk right around now. Failure is not much of a fear, I've become accustomed to it...So we shall see...

Article: When Working No Longer Works

This article struck home big time. I went back to work 3 different times after being diagnosed. I hadn't realized how much of my identity and self worth were dependent on my job until I couldn't do it. Especially when it became apparent that I was only hurting myself by continuing to try.

Also, to add to the identity crisis, I had been determined to be financially responsible and successful...I had just gotten my first solo apartment, and was a little over a year into my first car loan.

I still struggle... I can't reconcile myself with being poor. It's not what I envisioned for myself, and it's VERY stressful, having to try and juggle things I need and stretch dollars, and most of all, feel constantly deprived of things most people my age take for granted; going out with friends, buying clothes, the newest techno-gadgets...I'd also hoped to travel...Instead I'm juggling prescripton prices, and drowning in copays and other medical expenses.

Instead, I find that my twenties have slipped away, and, far from having bought my first home, I've moved in with one of my parents, in a new town, far from the friends that helped make life with chronic illnesses bearable. Not to mention that instead of getting better I'm getting worse...

And to top it off, I get to put up with people judging me. I had one aunt imply that I moved in to take advantage of my father. My own mother told me to go back to work, because it's okay for her to be disabled because she's of retirement age, and when I've had the gall to ask for help cleaning up, my father told me it's all in my head.

I'm finally beginning to understand that I can't expect people to understand, not my illness, and not my not working. Why should I care anyhow? They weren't there when I made the decision to stop, hoping it wasn't too late to prevent another crash. They weren't there when I tried to act like it was okay because it was the only sensible decision to stop banging my head against a brick wall. They don't know that despite my outward non-chalance, I took a nosedive into a deep depression, or the panic I felt at the uncertainty of my future, so much so that I actually got even sicker after I stopped working... They don't know, and I'm tired of trying to explain myself.

Agh. Sob story, I know. I'm trying to get more positive, I swear!

So anyways, here's a great article from the Fightingfatigue.org blog, I feel for the author, but at the same time, it's good to hear someone describe something I've been through...

ME/CFS & Fibromyalgia: When Working No Longer Works : FightingFatigue.org

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...

The Evil of Heels, 48-hour Backlash, on Painkillers, and Financial Frustrations

Happy New Year everyone!

I somehow managed to get out to celebrate a bit. I got superstitious after feeling too sick last year, and having the year from HELL. (Had to give up my apartment, moved in with a bitchy roommate, barely made it through school, had to move to a Sr. Community an hour away from the life I'd so painstakingly begun to form, and lost another appeal with the SSA for Disability Insurance. And that was just the major stuff.)

So I did get out this year, though I almost felt too ill at the last minute, but that was because my allergies were acting up. (Definitely allergic to dogs now too, as it turns out. Another consequence of CFS whacking out my immune system.)
I had a pretty good time, especially after the alcohol kicked in. For some reason, alcohol relaxes my muscles, numbs any pain completely, and gives me a ton of energy, all of which makes me very happy while it lasts. It's the next day that it usually kills me. I don't get a hangover, at least not like normal people.
Most of the damage seems to come from the fact that I don't feel the pain. So whereas if I had been sober, I wouldn't have been able to stand even standing in my inch & a half heels for long (I actually did have to sit down after about 5 minutes because my legs were getting shaky and hurting.) After a drink or two, none of that matters. I even had the gall to DANCE a bit in them. (How can you not have dancing at a holiday party?)
Now, I thought by some miracle, I'd escaped the consequences of my actions when I woke up feeling just a little sore today. (For some reason the worst pain of all comes the 2nd day after the offending activity, whether it be pushing a little too hard at the gym, dancing, or slipping & falling.) But by this evening I was feeling like I'd been hit by a truck.
But thank goodness for pain medicine. Until this past year, I hardly ever took it when I didn't have something absolutely pressing to do, usually if I was at home, I'd do everything else possible. But right now, my mood is a little precarious, and the hellishness of a severe flare can push me over to THE DARK SIDE.
Besides. One of the biggest reasons for my enduring the pain was the little voices in my head of people who did not approve of my taking pain medication. Usually people who couldn't take it themselves for one reason or another. (Their body's intolerance to it, or former addiction.)
I've learned to trust myself though, and especially as my pain levels have steadily increased w/the lack of access to chiropractic & other alternative care, I don't need to listen to those little voices anymore because they just don't make sense, and I don't need to justify myself to them.

I knew I'd made the right decision when I found myself making dinner instead of desperately wiggling on my massage chair trying to get all the bad spots and overheating myself to misery on my heating pad, and found my mood lifting back up as I no longer felt the mood crushing effects of my connective tissue burning and aching.

(I'd also carried a heavy backpack to my car, against my better judgment, so my whole upper body was aching too.)

And a good thing, too, because I soon found out that apparently my car insurance has been lapsed for weeks now. It's enough to make me want to work myself into the ground if I have to, just so I have some control over things like that.
I started wondering if maybe I should've pushed harder and tried to do things even if I was feeling super sick, instead of worrying more about taking care of myself at the moment. I tell myself I'm not going back to work because my body just can't take it, I'll just end up sicker. But then stuff like this happens, and I ask myself if maybe I should do it anyhow, because the stress of not knowing if things are being handled as promised is just about as bad...

Of course, then I realize I have been doing the best I can already. It would take too little time to work myself into the ground, not enough time to really make a difference or make it worthwhile, so I better just hang in there for now...

It's okay, I'm still hanging on to my optimism.