(I know, I know, I was supposed to write this last night, but I didn’t, because I decided I didn’t want to. So here it is now)
I have Ehlers-Danlos Syndrome, probably. Most likely. I exhibit the symptoms of Hypermobile Type, including joint hypermobility, subluxations, weirdly velvety skin, easy scarring, easily broken skin, etc. Like, my knees bend backwards. So do my fingers, to a certain extent. My ankles click whenever I move them (seriously, click click click click click). So do my wrists, and sometimes other joints as well. My thumbs pop out of socket easily, and I have hitchhiker’s thumb (where it bends totally backwards). Here’s my thumb out of socket:
Also, one of my tats. Yes, I have Egyptian blood in me. I didn’t get it out of nowhere. But anyway.
So yeah, what comes with Ehlers-Danlos (or fibromyalgia with hypermobility syndrome, which is what one doctor said in order to avoid a firm diagnosis of EDS) is a fuckton of pain. See, the connective tissues in my body don’t work right. They don’t hold the joints together very well. So the muscles around have to do the job, and they don’t do a very good job either because they weren’t designed for it. So I get muscle pain and weakness, because they’re doing work they’re not supposed to, and I get joint paint, because all my joints aren’t being held together and go POP and subluxate (that is, partially dislocate) or totally dislocate at any opportunity. I’ve had to have my chirpractor pop my hip back into socket before. There’s nothing quite like hobbling around and then hearing a big snapping sound from your hip, like…I could feel it in my ass. That wasn’t fun.
So yeah. Chronic pain. And it’s been going on since I was 14 or 15 years old, starting small and getting much worse over time. Every year I lose some mobility, some stamina, some tolerance for the pain I am constantly in. I mean, I have good days and bad days, but lately the bad days are overwhelming the good days, especially since I started work. I mean, I’ve been dealing with pain for about half my life now, and I’m exhausted. And it will never fully go away. Especially because doctors just aren’t treating me. They barely listen to me. I mean, I finally found a team of doctors who are listening to me now, but they still aren’t totally cooperative and won’t get me definitive testing so I can get a real diagnosis of EDS and then like, go on disability or get more physical therapy (I only got four weeks’ worth of sessions from my insurance with a Fibromyaglia diagnosis, because that’s not “serious” enough, which is also bullshit by the way–and I haven’t been able to continue going because I can’t afford the “wellness program” that lets me use the therapy pools and equipment on my own.
So when I say I’m tired, this is what I mean. I get flare ups where I can barely move for days at a time. And I still have to get up and go about my day, especially because my husband doesn’t sympathize or empathize with me. Like, he also has long-term pain in his back and knee because of his Marine Corps service, he also has plantar fascitis, and yet he cannot conceive that I might be in pain all of the time. He’s convinced that working out will solve all my problems (physical therapy will help, yes, but guess what, running on a treadmill just doesn’t work for me, trust me, I tried for six months and it was a crapshoot). He doesn’t believe me half the time. He doesn’t have any support for me. He’s had to literally drag me to the ER I’ve been in so much pain before, but he always insists I tell him I have to go and then spends the whole time rolling his eyes. He’s literally walked over my body on the ground because I can’t stand up and ignored me until I begged to go to the hospital.
And now I’m working. I’m running around for seven hours a day, anywhere from 3-6 days a week. I got a doctor’s note from my PCP stating that I have chronic pain and might need days off occasionally to deal with flare ups, but that wasn’t enough for my bosses? They want a detailed report on my work restrictions. Which is fine, I can provide that if I talk to my pain specialist. Clearly my PCP can’t be counted on, because when I asked her to provide me with those restrictions, she basically wrote, “She doesn’t have any restrictions, she just wanted you to know about her chronic pain in case she decides she has problems, she’s the one who asked for the note, we don’t know what’s going on” and it was just the most pitiful and disgusting thing, like I went to them for help and she was just like SURE OKAY and then when asked for details goes LOL GUESS WHAT NO (I threw the second letter out without giving it to my bosses, fuck that shit, she made me look like a crazed attention seeker and totally twisted how the conversation with her went down in the first place). So I’m waiting on my pain specialist to get back from her THREE WEEK VACATION so she can see me in an appointment and actually talk to me about these things instead of writing bullshit.
But then, doctors have proven I can’t trust them. FINALLY my pain specialist went through every medication for things I DON’T HAVE (seriously, why do doctors insist on rheumatoid arthritis when I don’t have any blood markers for it and don’t display matching symptoms and the twelve different RA medications they tried didn’t work) and put me on muscle relaxers, at least, for my spasms. But the everyday pain isn’t being treated. Apparently narcotics aren’t indicated for chronic pain (lol, I know plenty of people who have them for chronic pain, but 27 years old woman means “hysterical drug seeker” to pretty much every doctor I’ve ever seen) and the only thing that DOES work is currently not available for treatment in my area with insurance, even though it’s legal. I’d have to pay hundreds of dollars out of pocket for just one appointment with a medical marijuana specialist, who are over an hour away, and then $50-150 every time I had an appointment after that, plus the impressive cost of the medication. And I won’t be able to get even that if I don’t have a proper EDS diagnosis because it’s not indicated for Fibro in New York State. And my doctors STILL WON’T SEND ME FOR GENETIC TESTING LIKE I HAVE BEEN ASKING AND ASKING TO GET THE FUCKING FINAL ANSWER.
And so I’m just in fucktons of pain, I’ve been running around with untreated pain, I’m working heavily now and it’s worse than ever, I literally cannot stand at the end of the day, and my doctors just don’t seem to care, and yet they are the best doctors I’ve ever had. I’ve had several doctors just say, “Well, we can’t help you. You’ll just have to deal with it.” In those words. Not exaggerating, not paraphrasing.
I’m so fucking tired. You don’t know how many times I’ve considered ending it because I’ll never be out of pain. I will probably be in a wheelchair at some point in my life. And I know perfectly well that that is not the end of the world, I know many handicapped people who are wonderful and strong and great people and love life. And to be honest, I kind of look forward to a wheelchair, because that means I won’t have to walk and hurt from that anymore. But I can’t imagine the rest of my life becoming worse and worse in regards to pain. It’s already so bad. How much worse can it get? It’s progressive, I know that much. It’s going to keep getting worse until…until what? I give up? I’ve survived a lot in my short life, but I don’t know how to survive this. I’m already so so so tired.
So…that’s been on my brain for the past several weeks while I work. And I feel so alone and misunderstood about it (waah waah teenage drama so misunderstood waah yeah I know). I just want my husband to comfort me of his own free will sometimes, without me having to ask him. I know that’s HIS failing, not mine, but damnit I wish I could hook him up to a machine and have him experience the pain I feel everyday. Like when dudes get electric pulses to simulate contractions so they know how painful pregnancy is? Like that. But for chronic, all-over pain.
Maybe one day.