Stayin' Alive, Stayin' Alive
For about the last week or two I have been really wanting to write a post about disability representation in media, specifically sparked by Brian Cranston’s new film “The Upside.” But between incredibly bad flareups causing severe, mind-numbing pain, migraines for days, overwhelming fatigue, brain fog, and a pretty severe depression/CPTS(D) flashback spiral that I’ve been fighting for a while, I just haven’t had the energy or focus to do so. So instead I’m doing a bit of stream-of-consciousness journaling.
I put on a pretty good front I think, but to be honest I struggle so much to keep my head above water. To keep on keeping on. Not just to pay my bills and thrive in life, to be able to get out of debt and still indulge in coffees and lunch dates, to grow and expand my businesses and find creative new ways to give back and better my community. No no, beyond that. I struggle on a daily basis to stay alive. Let me explain.
I realized yesterday that I cannot remember the last day that I didn’t think “it would be okay if I died.” To be clear, while I’ve had Major Depressive Disorder and Complex PTS(D) my whole life and have struggled with suicidal ideations many, many times in the past, I am not suicidal. I do not want to die. I am not thinking about how to die, or anything like that. It’s more of an analytical assessment of, “I am in excruciating pain every moment of every day that is only getting worse. I am fighting tooth and nail to try and get health care that will actually cover my medical care so I can try to get some pain management (since there is no cure for the things I have). I am living a life of flashbacks and triggers, and until I get insurance I can’t see a therapist. I work so hard to get so little back, to barely make ends meet. I know I am difficult to be with at times and feel guilty for burdening those around me. If I were just to not be alive, that would solve a lot of these problems.”
Again, I am not suicidal. I am just very, very tired. I am suffering and struggling a lot. And I know I write openly about what I deal with, but usually with some sort of “but it’s okay, stoicism, positive spin” takeaway. I don’t often directly say “I AM SUFFERING.” But yo, I am suffering. Majorly (winter is really hard on me, physically).
I became symptomatic somewhere around 15 or 16 years old. I got my first major flareup that landed me in the hospital for heart failure when I was 18 (my heart was “fine,” as it turns out. It just doesn’t do heart things sometimes. Holla, a-fib/dysautonomia!). This is the point at which I received my first diagnosis. But looking back, I can see early signs of my illnesses all the way back to my very early childhood. But anyhow, pain and migraines and weird other symptoms started around 15ish, before I knew they were symptoms of something bigger. I am 30, just shy of 31 now. Ever since then, more or less, and very consistently since I was 18, I have been trying to find help. Treatment. Pain management. Anything. For those of you counting, that’s between 12 and almost 16 years. I’ve taken dozens of medications, done every therapy under the sun, seen every specialist in this hemisphere, but I cannot get “pain management.” Because pain killer abuse and addiction (not by me, to be clear), “The Opioid Epidemic!”. Like, I get it. But my pain levels on good days are about that of a cracked, infected molar, and my bad days exceed that of natural childbirth, and can last for WEEKS (sometimes longer). There is no time whatsoever that I am not in pain. I cannot remember not-pain. FOR THE LOVE OF DEITY, SOMEONE PLEASE HELP ME! But there is very little help to be found. It’s a fight to even see a doctor. It’s a fight to get them to believe my diagnoses. It’s a fight for them to take my pain and other symptoms seriously. It’s a fight to get ANY sort of treatment or help, even not pain-management. And I’m chronically fatigued. I’m so tired, and in pain, and falling apart, and anxious, and depressed, and I just want someone to believe me and help me. But no one does.
So I get up every morning and pop all my bones back into place. Some days I can’t wear fitted clothing because it feels like it is scraping my skin off. Some days I can barely make it down my stairs on my own. Or I can’t stand to cook my own breakfast. Or I faint in the shower. Or it’s unsafe for me to drive to work. Or my heart is acting up and I am stuck in bed for days on end. Or my lungs don’t work right and I have to wear my (awesome) vogmask to keep them from closing up on me, or from even mild fragrances triggering migraines that cause me to collapse. Or I lose my vision partially or entirely. Or my brain doesn’t work right. Or when I sit up my sacrum dislocates, and my ribs pop out of joint, and when I walk my patellas slide around and my toes subluxate and nerves get pinched and my joints hyperextend and… And it’s hard enough to explain all this fucking weirdness to my doctors who literally have advanced degrees in this stuff, but try explaining to your clients, colleagues, friends, family why you know you made plans, but you have to reschedule that appointment, or can’t make It to their kids birthday party, or need to skip girls night because your heart is skipping and randomly stopping then racing then stopping again (but no, you don’t need to go to the hospital), or part of your spine and most of your ribs are dislocated making breathing blindingly painful, or your migraine is so bad you are on the verge of gouging out your eyes with a melon baller, or because you barely have the energy to respond to a text message, much less GO anywhere.
Man, I have dozens of unopened, un-responded-to texts, emails, facebook messages just because the idea of having to open, read, process, and respond to a message is so exhausting that I nearly break down in tears. There are days that lifting my phone is an achievement! And I’m sure I come across as pretentious, flaky, too busy/too good for people, antisocial, unreliable, or whatever else, but the truth of the matter is I’m just so tired and my brain isn’t working right, and I literally cannot respond (there’s also a lot of guilt and anxiety about responding after a long time, which doesn’t help). Writing something like this entry takes a shit ton of energy. But I also know once it’s done, it’s done. But if I respond to a message, then people write back, and I have to respond again. And on the cycle goes. And I desperately want to talk to folks (most/some folks, at least), but I’m so tired. Just… so tired. And that Chronic Fatigue and pain and struggle is just from my physical ailments. Add in the exhaustion, lack of motivation and drive, lack of focus, and so on from living with depression, anxiety, and post traumatic stress (disorder), and jesus fuck… there are just so few spoons left to be had!
(Please don’t stop reaching out to me. I’m sorry for my fatigue and everything else, but please don’t give up on me.)
And I don’t think I have it any worse than so many other people. I know everyone is dealing with stuff, many much more severe than myself. But man… I’m struggling with my existence right now. Like… I love my life, don’t get me wrong. And I love my friends, partners, jobs, hobbies. I love love love the work I do. I love the people around me (even as a very tired introvert). I’m blessed as fuck! But also I’m so incredibly overwhelmed with and beaten down by life as a disabled, chronically ill woman.
There’s also this weird self-doubt that makes things really hard. Like… Monday and Tuesday I was in so much pain from the cold and exhaustion that I was barely functional. It was a “life is 100% not worth living if this is my new “normal” pain level” day(s). Wednesday was rough. Thursday depression was bad but pain was fairly manageable. But today, Friday, I had breakfast with a friend, we walked around Mystic and had a grand ol’ time, played scrabble in the library while I petted the library cat. I had an adventure with my partner. Life was good! My pain was… tolerable. All those other days… was I imagining the pain being that bad? Am I really just being a total drama queen? Blowing my “struggle” out of proportion because I’m lazy and feel sorry for myself? But then, almost as if answering my own question, I got hit with a migraine that rivaled all others, and was home throwing up, and laying in bed in searing pain. Like boiling water and glass was sloshing around inside my head while it was in a vice grip. Light hit my eyes like daggers and every sound was like electrocution throughout my whole body. My skin burned. As I began to feel some relief (from the ridiculous amount of Excedrin I took… don’t tell my doctors), I felt the depression kick in. It had been there, but was “dormant” for a few hours. The allodynia (skin pain) did not alleviate. I cried over some pretty serious things I don’t really want to talk about right now. I sobbed in cycles. Absolute break down, then okay-ish. Then rivers of tears again. Which, of course, brought the migraine back. And I dislocated my knee by just rolling over in bed, and shrieked and sobbed in pain. And my back spasmed for hours. And I wondered “oh, for fucks sake… what’s the point?”
So I share all of this not to try and garner pity, because fuck that. But to try and help you understand what I mean when I say “life as a disabled woman is rough” (and to remind you that not all disabilities look the same). So, with all of that being said, I still have to work for a living. That is getting harder and harder. But bills are still a thing regardless. So… /shrug. I’ve been thinking about re-applying for disability, but part of me feels like I might not need that (yet) if I could just get some goddamn help with my illnesses. But also, getting on disability is not an easy thing. First of all, I need a doctor. I’ve been through 3 PCPs in the last year. I have thousands of dollars of medical debt. I now have Medicaid, but don’t have my cards yet because the government shut down. So I’m insured, but effectively uninsured. I cannot afford to continue to see doctors while uninsured/self-paying. But once I get a doctor, I have to now convince them of my ailments. I have diagnoses. TONS of them! But some docs seem to think that they can just… disagree? Like I haven’t been going through this and dealing with this and treating this and doing tests of all varieties for this for over a decade now. But okay. Let’s go through this whole process again, I guess.
But let’s say I get a doctor who is like “yes, I see you and believe you. Let’s handle this!” Well… I received all my diagnoses while married to a military service member. We divorced years ago. I requested copies of my medical records when we split, but was denied. My doctors have, and continue to request copies of my records from the NACC (Naval Ambulatory Care Clinic). Denied time and time again. Why? Because my medical records are “property of the US Government.” Yup. So I now have to go through all that testing and diagnosis process all over again. Once I get my diagnoses, which could take years yet again, depending on a lot of factors, It could take many years more for me to get approved for disability, if that even happens. Chronic pain is a hard one to get disability for because of the subjectiveness of the condition(s). There’s no blood test for pain. And not everyone functions the same at the same pain levels. So ability to work is very… case by case. So it could be years before I am approved for disability after (if) my doctor says “yes! You are certainly disabled.” Until then, I get to just keep working and trying to make ends meet while losing mobility, mental function, dexterity, and energy. While my pain increases. How? Beats me. Just keep working and hope maybe I can figure out the balance of “paying my bills” but not making too much money so I don’t loose my Medicaid. Because see, I can’t make enough to pay my bills and afford health insurance that will cover what I need without Husky. I’ve done the math. It’s just not a thing, it seems.
So i’ve been feeling pretty hopeless lately. Exhausted and frustrated and pained and angry and just hopeless. Going to live with my parents is absolutely not an option. My partners cannot (and should not have to) support me. Immigration is… possible-ish, depending on where I want to go. But then there’s a whole other world of difficulties there (another post for another day). So what’s a girl to do? How is someone supposed to keep trying to affect change, make the world better, add value and kindness and love and light and truth to people’s lives (and you know, stay alive) while feeling like a hopeless mess of medical mysteries who might as well die and save everyone the SSDI paperwork? I don’t know. I keep trying to cling to my stoic teachings, and they help a lot. Especially with the PTS(D). I try to focus on the good things. The people who love me. My cat. Good food. The cool work I am doing. But y’all… I’m just so tired, and struggling so bad. And I often wonder if the “good work” I’m doing is enough to be worth it, and the people I love and who love me… if their lives are actually made better by me or if I am just a financial and emotional burden?
I really don’t want the takeaway of this to be “Farrah feels really sorry for herself” or “wow I shouldn’t book appointments with her or buy tea from her because I don’t want to create more work for this tired girl.” Like… no! I don’t feel sorry for myself. Well, maybe a little, but this is just me trying to be really open. And please don’t stop working with me. I manage my schedule well so I can give 100% to each person I work with, and it brings me such joy to get to work with and serve others and create beautiful things. I need that in my life. I think things would be very un-worthwhile if I wasn’t able to help make things better and more beautiful for others despite/through this.
I am also stepping up my self care game, taking more time for me just to rest and do things that make me happy. I engage with people as much as I can. But I have had a lot of anxiety and depression and honestly a lot of trauma wrapped up in all of this health stuff. And much like my CPTS(D), sharing this is therapeutic for me. And I hope educational. And soon I will write a passionate article about disability representation in the media. But for now, I am going to have myself a good cry about very personal things that are utterly breaking my heart right now (maybe I’ll write about them sometime). And I’m going to drink some tea and take another pain killer and watch something happy on Netflix. And tomorrow I will tape my joints in place and go celebrate 2 of my friends birthdays and it will be grand.
And that, my friends, is my super honest article about how things are going right now. About what life as a disabled person is like. About the reality of what trying to stay alive in the US right now is (a super basic, vanilla version). Cheers!
As always, please don’t message me with “cures” or notes about how sad you are for me or whatever else. Unless you are a doctor who specializes in my condition or are my sister Rei, I promise you that whatever you are going to suggest I have tried. And I’m amazing and cute af, so don’t be sad! Be mindful of why disability rights, universal healthcare, and compassion are vital. Also, not all disabilities look the same. Never forget that.