Friends

So, I was reading this (PDF), and realizing... I'm not getting better. I'm getting worse.

For a while, before reading the (very long but worthwhile) article I linked to up there, I kept thinking to myself, "Every time I get sick, I don't recover. I have still not recovered from getting the flu in...in...in..." And then I am reminded how much my cognitive abilities have degraded.

I used to have an exceptional memory. Exceptional. It is what allowed me to be the best at nearly everything I did. I have recently had to admit...that's gone. It's gone. I can't remember things well anymore. I can't remember yesterday, last week, last month, last year.

My aphasia has returned, even when I am not having a migraine. I desperately cling to participating in an online text-based storytelling game because it keeps me thinking and writing. I try hard to understand what I am reading and I try just as hard to write good sentences with proper grammatical structure and style. It is, in a way, the perfect mental challenge for me at this point, because each "round" of this storytelling game is short. As in, someone writes a few lines of text, I read it and then write my own couple of lines of text in character. I play this game a lot because a) it is fantasy and I need the escape b) it's the only thing I have left that I can do that challenges my mind but doesn't demand things from me on a particular schedule or timeline. I can say, "I don't feel well, I need to go" and leave anytime I need to.

But even then, I've noticed lately that I can't remember my words. This isn't because I'm not using them often enough to remember them. It's just because...I can't. I sometimes spend two or three minutes struggling with a simple word. It would be a lot more embarrassing if it weren't an online game where no one can see me struggling with it.

I can go out twice a week. TOPS. I went out on Tuesday and Wednesday this week. Today I was supposed to attend Matthew's mom's birthday party, but in spite of loading up on caffeine, provigil and alprazolam (the latter is to even out the shakes from caffeine and to reduce the pain in my hips and stuff), I couldn't quite make it past taking a shower. I was so exhausted that... well, to be honest, I'm not really sure what happened. I'm going to guess that I was just too tired to stand anymore and couldn't walk, so I just laid down on the floor between the bathroom and bedroom. I can't really remember doing it, but I remember Matthew coming upstairs and almost stepping on me and then having to haul me up off the floor and put me into bed. And even though I had just had a bunch of stimulants, I fell asleep within minutes.

I go to my doctor every month. She's great and I love her, but she doesn't know what to do with me. She sees me every month to monitor my medications and talk to me. To make sure I'm not about to commit suicide. She's basically acting as another talk therapist.

But no amount of antidepressants and talk therapy are going to make my body any better. I was at one point feeling incredibly better, emotionally. I was really coming to a point of acceptance and hope. I'm not sure what happened. But my body never got better. My depression can get all the better it wants to, but my body is not getting better. And exercise is not going to make me better. That's all the national health/disease organizations can come up with. Treat with antidepressants, psychotherapy and exercise. That might help if you only have depression. But I have a real physical illness in addition to depression that can't be explained by depression or treated with the same remedies for depression.

I just don't know what it is.

And no one else truly does either.

So I can't be fixed.

And I'm getting worse.

It doesn't matter how many times people want to tell me that fibromyalgia is not degenerative; I am getting worse. I used to be able to drive to Kirkland to get my electromuscular therapy. I can't do that anymore. I stopped being able to after that bout with the flu that knocked me out for a while. I never recovered.

I have to do an elaborate song and dance with medication and planning just to take a fucking shower, people.

There is something. wrong. with. me.

Why do I keep saying that? Because even I don't believe me. Because medicine doesn't believe me. Sure, right now, I am willing to accept that my psychological conditions (hypervigilance, anxiety, depression, past trauma) can exacerbate my existing health issues.

But they aren't causing them. The entire medical community seems to want me to believe they are. They're not. I promise you, they're not.

I have so much...so much more to say, but I've run out of energy to say it. My mind has gone blank, I'm as mentally exhausted as I am physically exhausted, for no apparent reason and with no solution in sight. I'm so frustrated and so scared.

I remembered something I wanted to say. I am considering doing something odd. I am thinking that from November 19-December 1, I will do "sleep therapy" wherein every night early in the evening I will take an entire muscle relaxant (note that even a quarter or half of one will knock me out for like 12 hours) and zolpidem and sleep for as long as humanly possible. When I wake up, I will do the absolute minimum self care - I will perform basic hygiene, drink water, eat food, interact with birds and possibly Matthew (if he is not at work by then), and then perhaps attempt to do some reading or the game playing mentioned above (or maybe I'll get rid of my computer for that entire time and play Brain Age on my DS instead), see if I'm sleepy, and if so, I will lay down and go back to sleep. Basically, I will try to remain sleeping for 13 days. Thirteen is not a magic number, it's just the number of days during that time that I do not have any appointments. The only exception is Thanksgiving.

Where did I come up with this nutter idea? I am remembering that one experimental therapy for chronic pain is an induced coma. It's extremely dangerous and can have terrible side effects. But the idea is a major change to the system, something that allows the body to do its regenerative stuff. I don't know if 13 days excluding Thanksgiving will be long enough, or if I should start again from Dec 3-15. Or maybe more, I don't know; the appointments I have then are psychotherapy ones; if I've been sleeping the entire time, maybe I won't need them. Who knows. All I really know is that I want to be present for Christmas somehow. I want to have a happy Christmas eve, Christmas morning, Christmas dinner and the annual Boxing Day shopping with my aunts.

And I want to have anything, anything, anything that might make me feel better and I am feeling like I'm just at the end of the line and I have no idea what can be done. I'm not being treated, there's no treatment. There's just no treatment. How can I ever possibly expect to get better? I mean, what's left, here? If what I have is a virus, can I get antivirals? Who would even help me with that? Would my doctor? I'm seeing her soon enough. Electroshock therapy? Seriously, I'm not even joking. I need something. The migraines are getting worse again lately and I can't stand this life anymore.

Do you know how awesome I used to be? Once upon a time I went to school full time and I was a budding artist. Once upon a time, I walked around a large campus, to and fro and fro and to without a second thought and I felt fantastic when I wasn't being stricken by migraines. Once upon a time, I danced the Lindy Hop six out of seven days of the week. Once upon a time, I worked full time...and then I started to unravel. Once upon a time, I had acupuncture and started to regain some functionality and went on to work full time somewhere else. Even the headaches decreased. But then I started getting flus and colds all the time. I got tons of infections. I passed out at work. My grandfather died of cancer rather suddenly. I couldn't reliably see my acupuncturist anymore because my work schedule was so erratic and I rarely got schedules in advance enough to make appointments. And then I was too tired to go anywhere after work. Work, sleep. Work, sleep. Work, sleep. And then I was in too much pain and distress to keep working there so I got a different job. And I was still awesome, I still knew everything and was sharp mentally and I was working. But the migraines got worse, the hip pain got worse, walking became more and more difficult. Simply getting out of bed in the morning became difficult. I started becoming quietly suicidal because of the increased migraines and fear over my declining medical condition. I lost my job. I became so depressed I was dead inside.

But once upon a time, I was an incredibly bright, energetic, bubbly, happy, driven and ambitious person. Even with the migraines. Even with the past trauma. Even with the latent depression and anxiety. I was highly paid, I loved my work, I loved my clients, I loved my co workers, I loved the freaking world, man. I loved art once, I loved ... I loved.

Now I'm even afraid to love. I'm afraid of everything and I am mourning, mourning, mourning the me that died several years ago.

The state tells me I am fine! There's nothing wrong with me! That I must just be too lazy to work or not want to work. I WANT TO WORK SO BAD I COULD KILL. But I can't! I WANT TO. I want nothing more than to be the bright and energetic person I was once. I want my life back, I want me back.

I'm trying to get disability so I can pay for stuff like a housekeeper to help keep the house clean because I can no longer do it. For cab fare to get me to doctor's appointments or maybe back to electromuscular therapy. For some kind of no-impact, compact exercise equipment that I can use for...thirty seconds a day. Then a minute, then five. I can't get dressed and go to a gym. I can't get dressed and drive to a pool. I can barely make it downstairs every day. I want disability so it can pay for my psychotherapy that isn't covered by insurance. I want disability so I can see a psychiatrist (not therapist/counselor) so I can be prescribed provigil because my doctor won't. I want disability so I can pay for the experimental things for which I can work up the courage to try that will inevitably not be covered by insurance. I want disability because I paid into it for ten years and I deserve it now. I want disability because I hate being so entirely dependent on Matthew. I want disability so I can stop being so humiliated by my utter lack of contribution to the household.

I don't want it so I can laze about the house and do fun things on the government's dime. I wish I could laze about the house and do fun things. Instead, I spend all day uncomfortably shifting in my bed trying to prevent my hips from seizing up, struggling to keep my mind active, struggling to participate in mentally challenging activities, struggling to find things to distract me from my pain and suicidal ideations. I spend my day planning meticulously for the days I must go out to see my doctor and my psychotherapist. I spend my days working up the energy to go downstairs and care for pets I really don't have the energy to care for anymore. I spend my days trying to ignore all the things I wish I could be doing and carefully calculating what I can do without making myself sicker. I spend my days scared of the future and wishing there was a way to magically erase myself from existence so no one would be upset if I killed myself.

Yeah, state of Washington, I'm really trying to pull one on you here, with this super fun invalid life I'm leading after once leading a very active and fulfilling life. Jerks.

This post rambled but at least I feel...a little bit lighter.

Current Mood: distressed