"Just" Fibromyalgia: The "Feels"

I finally pulled out my chalks and created something, though it wasn't what I expected to come out. I kind of expected an abstract, but a stylized representation of me, asleep, and nightmares creeping in is what came out. I've been dealing with a lot of nightmares in the past few days, horrible dreams where the ones I love are hurting and people are in pain and there's nothing I can do about it. Many of them involved injury, death, violence, bad people, and inexplicable series of events. Due to the constraints of my illness I can't resist the sleepiness that overcomes me, but I don't like to be there because I wake up aching on the inside and out. Sleep used to be my refuge, but it's become a war zone of late. I hope this is just a phase that passes quickly. It's probably the subconscious workings out of my tortured body and mind, the considerations of the future that terrify me and the thought that "ending it all" might not be so bad except for the pain it would inflict on others. I guess it comes down to the question of how selfish I am. Can I stand to offload all my pain and suffering onto those I love to gain a surcease from my own constant torture? Unfortunately for me, I am not inherently that selfish, but I can't say what rash decisions I might make in the throes of agony. You've been warned.

Rose and I have plans to meet up for a few hours tomorrow during the Celebirthsary weekend that Drogo and I have planned. She's out west for spring break and I'm up north for those two days, so what's the harm in going a few hours more northward to see my bestie? No harm; none at all. I'm SO excited. We've only seen each other for a few hours in the past two years, and though I love her mom dearly she kind of put a damper on our last reunion and it wasn't possible to just sit and gossip over a chick flick like we would ordinarily have done. I was happy just to see her, of course, but I'm looking forward to our reunion amidst the pines and fresh mountain air of the bible college we both attended and were roomies at. We were discussing the rejuvenating effect the wilderness has on us, and how we both come alive when we're able to go out and explore and adventure and just wander… and I guess that conversation brought home the thoughts that have been percolating in my head for some time. The sense of loss when I realize that I can't join her in a merry hike amidst the trees like I want to. Remembering that I have to be sure to pack my pain pills and my other meds and my walker and the footstool set up for my walker so that Drogo can push me when I am too tired/hurt too much to walk anymore. The reality of my situation crashing home, once again.

When I was told that I am dealing with "just" fibromyalgia and not any autoimmune disease of any sort, it was a brutal shock for me. I didn't think that it was possible for "just" fibromyalgia to so drastically affect someone's life, health, and well being in this manner. I was positive that there was something behind the scenes aggravating and inflaming the fibromyalgia symptoms. There had to be something else, something treatable, so that when we found it and started working on it the fibromyalgia would recede as well. That was my working hypothesis. It turned out to be false (unless there's something neurological at play here, which the twitchies would suggest, but who the hell knows anymore?), and now I have to face the reality that it's "just" fibromyalgia, something that is not taken seriously in many cases and places… and something that I didn't really take seriously, in all honesty. But now I have to face the facts, and that includes the fact that my misery is due in large part to fibromyalgia, a little understood neuro-immunological disease/syndrome, and none of the treatments for fibro have improved my situation at all. I've simply continued to worsen. When I learned that it was "just" fibro, the horrible  reality that came crashing home was this: I've had active fibro for about a year and a half, during which I have not responded to any treatments and have worsened dramatically. If I'm looking forward to years and years of this, if the progression continues on the same scale that it has in this past year and a half… will I even be able to walk by the time I'm thirty? How much pain will I be in by then?

There are certain expectations that I have, unless something dramatically improves, certain things I've had to grieve and come to terms with… that I'm still coming to terms with…

I cannot have a family. I can barely take care of myself, and I'm not so good at that, so a baby is out of the question right now. If I were to get pregnant and if I could carry the baby to term (something I've been unable to do so far), I would have to be off of all my medicines, including pain killers. How sick would I be, how much agony would I be in, and how would that affect the development of my baby? The emotions and state of mind of the mother affect the baby, as those things result in chemical secretions. I want to be a mom, to have a family… I broke down crying the other night, and while Khal Drogo was comforting me I sobbed my apology to him that I cannot provide him with a family like he wants. It's something we both wanted, part of our shared vision for our union and our future… and right now it doesn't look like it is going to happen. Maybe if I get some better, and my friend acts as a surrogate like she volunteered to do… maybe I can have a family in the future. We were going to wait several years anyway, to get financially stable and make sure that we can actually take care of any children we might have. No going into debt unless emergency dictates so, or strategic financial planning.

I would be a kickass mom. I so would. I have a strong maternal instinct, kids just gravitate to me, and I practically raised my siblings when I was far too young to have to do so. Did you know that one of my nicknames up north was Mother Goose because of how the kids flocked to me? It makes me smile every time. I love kids. I want to have kids. I want to be a mother, and it kills me that I can't seem to carry my own and that right now it looks like I won't be well enough to care for a family. How fair would it be to bring a child into the world when I can't adequately care for them? Not fair at all. I don't want to disadvantage my babies that way. I dunno. We'll see. I still refuse to believe that I'll never be a mother, and the timing isn't right for a family right now anyway. So this one is on hold. It's far too painful to believe willy nilly.

Okay, here's another one: hiking. I miss being active; long walks at night, day hikes, backpacking trips, just being out and about without paying for it for the next few days. I miss going on adventures, challenging myself physically… Hell, I miss cleaning my house. I miss being able to do stuff myself, instead of relying on others for assistance. It is so infuriating to have to wait for someone else to get around to doing what I would be able to do seven times over in the time it takes them to get around to it (because people have their own lives), and I could do it so much better than them to boot. I have such good intentions of just gritting my teeth and doing a little bit at a time of the things I want to get done… but when the time comes I'm just so tired and nauseous and dizzy and I hurt and I just don't want to do it. It's like trying to function with a really bad flu, and it sucks.

I miss being independent. I am so reliant on other people and it kills me. I used to be the one that did things, that took care of other people, that made things happen… and now what? Now I don't. Here's another one: working. I miss my work as an admin assistant/office manager and peer support group leader and advocate. I miss being able to contribute to the home financially, but more than that I miss being able to make a positive contribution to the world around me, to my community, to the lives of broken girls and women. I miss giving. If life were fair, I'd be able to receive just as much as I gave, but that's kind of in short supply… there are a few key people who help out as they can, but for the most part I feel pretty abandoned. It's like, if you can't do anything for people then you get pushed to the back of the list. I can't claim that I didn't do the very same when I was still capable; I can't remember. And that's just the thing… I get forgotten. Left out. Left behind. I'm needy now, and an awkward burden to carry. I would love to say that I don't blame people for it, but the truth is that I'm super bitter about how little help I get even when I ask, which is a hard thing for me to do. I did find a friend that has committed to helping me clean and cook for a few hours every Saturday, but I'm skeptical as to whether that'll last or not. It's not exactly thrilling, sweeping floors as I hobble around helping where I can. I notice that people tend to not like being around a young person that's ill and un-fixable. It reminds them of their mortality, how misfortune can strike at any time and any age, and that's just a plain ol' downer.

I have to air this out, but only this once because I feel really ungrateful and like a jerk for even having an issue like this… but I'm really ticked about my birthday party. It was so much fun and I had a blast and I was so happy to have so many of my friends over… but so many of the people I invited didn't come. The ones who did show up are the ones that are the most consistent ones in my life, the ones who show up even when there's not cake. But the ones who didn't? They're the ones who claim to love me and we were close, once, for the most part… but they couldn't even be bothered to come to ONE thing? I don't ask for much, I don't think, but this was really important to me. I don't get much of a chance to have a happy, fun day. Most of my days are pretty flat and painful, sprinkled through with little things that make me smile. I have to hunt for them, though. See, about the people who didn't come… every person who bothered to make an excuse had a good one… but they all had excuses and didn't/couldn't come… and that hurt. A lot. Just another example of being shut out, left behind, and forgotten. Ouch. I'm also upset that I had to throw myself a birthday party. Like the logic doesn't even work-- everyone knows that I'm really sick and have a hard time with basic life, but it's left to the girl who hasn't even been cooking because it's too much to plan and execute a party. People knew I wanted a party, but as the saying goes, "If you want something done, you have to do it yourself." Not only did the sick girl have to make her own party happen, but the majority of people didn't even come to the thing that took so much effort and destroyed me for days upon days. Not cool, yo. Not cool.

I'm terrified that it's all in my head, and my limitations are self-imposed. I don't deny the physical aspects of this illness, not at all. But I am afraid that my "can'ts" aren't derived from past experience like I believe them to be but are rather mental constructs sprung up from who knows where. Maybe if I just tried harder I'd find that I really am not as crippled/disabled/sick as I thought? Maybe I just need to push myself more.

I guess I could go on, but the gist of this thing is that I'm reeling. Not only is there not something treatable lurking in the background, but this thing that I have has not responded to any treatments in the past or present. My year long sabbatical from the Healing Journey to get better? It's probably a permanent thing. My whole attitude of "just wait until I get better and then I'm gonna _______" is pointless, because there's not a "get better" phase to this disease that I can tell. I'm stuck like this, stuck like this forever… and I'm only 26. How many more years of untold suffering await me? I can't really think about that because it sends me spiraling into a panic attack, and do you blame me? Maybe you haven't seen my pain blog (which I only update sporadically now, because none of the doctors ever look at it so what's the frickin point?), but it's a dismal portrait. That… for the rest of my life… and likely to get worse. 

I need people. I need people to do random acts of kindness, to help with basic life activities, to listen to me vent, to throw me parties and buy me Arizona green teas and encourage me to exercise (and help me with it!) and all that jazz. I need people but I feel like I'm standing in this great void where my friends used to be. I do have some very strong supporters… but they live hundreds and thousands of miles away. They play an important role, to be sure, but I need people here. That's the part of my support system that's sadly lacking. I know, I know… people don't want to overextend me and make me sick or interrupt my naps or impose when I'm feeling poorly… I've heard that from my grandparents several times. Here's the thing, though… I don't feel good. Like, ever. Once in a blue moon, but it doesn't last long. If you're waiting for me to feel better before you interact with me, it's never gonna come. That's why I need you. I need help. I need love. I need friends, and I can't come to you. Can you understand that? Do you know what it's like to see your car out the window and know that it's just not safe for you to drive, to know that you're as stranded at home as if you had no vehicle at all? It's awful. I'm stuck here, and unless people come to me I don't see anyone. I'm that crazy old shut in lady at the end of the street, and I haven't even hit thirty yet.

"Just" fibro. "Just" a life sentence of pain, sickness, isolation, and the fight against depression.

Can you comprehend what it's like to know that your life is over at 26? The life I had planned is gone. It's like I died. Cassandra is dead, and I don't even know who I am anymore or what I can/want to do with my life. I was going to be a massage therapist. I was going to visit all 50 states, to travel overseas and try different foods and see art museums and antiquated buildings. I was going to have a family, have children. I was going to be a licensed peer support specialist, a licensed suicide prevention… person. (What are they called? Brain fog.) I was going to be the office manager for the HJ's new location, be the other half of the organization's head even more than I was before. I was going to hike all the way to Telegraph Pass. I was going to backpack from one rim of the Grand Canyon to the other. I was going to go to Alaska and hike in Denali Park. I was going to raise a garden in my backyard. I was going to unpack and organize my fucking craft room! There is so much that makes up Cassandra, so many dreams and ambitions and tightly held hopes… and they're all rendered pointless or impossible now. Maybe after some time has gone by and I've grieved appropriately I will challenge that word "impossible", but for now… the reality that I've been handed is very bitter, and I'm not sure how to handle it. I want to go hiking with my Desert Rose tomorrow, but I know that's not going to happen. I will feast upon her cinnamon rolls because gluten is a thing that's happening in my life again, and I am incredibly grateful for this (even if I am slightly allergic to wheat). It's so nice to have real baked goods again, and I've never gotten to taste Rose's baking. That's one dream that I can fulfill, at least.

Goodbye, Cassandra. Hello… whoever you are. Strong, fierce, stubborn, broken, sad, implausibly hopeful, beautiful, giving, intelligent (despite the brain fog), creative, flexible, sexy, hilarious, needy, angry, still standing despite it all. I feel empty inside from the wrenching away of my future, but I still have good things swirling around the ragged edges. The gaping, cavernous wound will heal with time, I'm sure, but for now… it hurts.