One of the most consistent things I’ve heard over the years is, “it’ll get better, this is only temporary.”
I understand the sentiment, but at this point, it’s not temporary. At this point, I’m disabled, in all likelihood permanently, and constantly being told that my pain, my struggle, my numerous and ever multiplying ailments are temporary prevents me from accepting my baseline level of existence. It makes every bad day feel like a write off and every good day a fleeting hope that now is when it will all turn around. But it never is, and four years into the decline of my health it’s time to stop believing this is temporary, and time to start the journey of acceptance and accommodation.
The disappointment of a bad day doesn’t need to be disappointment. I don’t have to experience the death by a thousand cuts that is the dashed hope of every fleeting good day possibly signaling the turn around.
My expectations need to change, and that’s okay. It’s incredibly painful and difficult to even admit that, because admitting that means another identity shift, which seems to be the defining quality of my 20s. From changing degree courses in college, to my debilitating milk allergy disappearing (again), to the end of a decade-long career, to learning that I’m autistic and what that means for my understanding of my entire life, and now to shifting into and understanding my life as a disabled person, to getting married in the midst of all of that!
I am no stranger to change, my life has basically been an unending string of changes that I am acutely aware of and race to acclimate to by the time the next change has arrived. Change and I may not get along, but I think I’ve done a pretty damn good job of accepting it as it comes and doing what needs to be done, despite being wired to be deeply upset by it.
This current wave of unending change started four years ago when I injured my knee and had a third knee surgery, which I never fully recovered from. While recovering from that my bladder decided to jump ship, I have had chronic pelvic pain and no urge to urinate (I cannot tell when my bladder is full until it’s too full and very painful) for nearly three years. Two years ago I had my fourth knee surgery to correct my unsuccessful third knee surgery and still cannot ascend or descend a standard-height staircase with my left knee, I cannot run, I cannot walk the dog, and I cannot stand on a moving bus. 18 months ago my childhood asthma came back with a vengeance. I developed a chronic cough that lasted about 7 months and returns any time my asthma gets out of control again.
Then I developed a new mysterious ailment. I started having sudden onset episodes of tachycardia, shortness of breath, fluttering heart, and near syncope. I had a full battery of tests, most of which came back normal (just as they did when my bladder condition started until the urodynamic test came back weird), except for the orthostatic test, which showed an increase in my pulse from 95 while laying down to 126 when standing. This led my cardiologist to order a bubble study echocardiogram, where they inject tiny bubbles in your vein while they image your heart to see if there are any holes that allow the bubbles to end up where they aren’t supposed to be. This came back abnormal but was never addressed again (bubbles came through the wrong side but not until 12 beats later, which was apparently weird, but not important enough to follow up on. I then saw an electrophysiologist who diagnosed me with Inappropriate Sinus Tachycardia and sent me for a tilt-table test to confirm or rule out Postural Orthostatic Tachycardia Syndrome (POTS), which came back positive in July 2019. Around the same time I went to see a rheumatologist, who diagnosed me clinically with the Classical Type of Ehlers Danlos Syndrome (I’m waiting on the results for genetic confirmation). I had an upper endoscopy in August of 2019 to investigate the damage my worsening GERD was causing and rule out some concerns and since then every time I eat any amount of food my stomach distends and hurts and I get nauseous for at least an hour. I started Physical Therapy around the same time with an incredible woman who both has and specializes in treating POTS and EDS. The program will take at least a year at the rate I’m going. I’ve been receiving weekly saline infusions since October 2019 because I’m unable to stay hydrated due to the combination of POTS and my GI issues and just had a chest port implanted because we had so much trouble placing and maintaining peripheral IVs (the port is amazing and I love it, I just don’t love that I need it).
In January of 2019 I had to reduce my work hours, by March of 2019 I was signed out of work on medical leave because I couldn’t safely perform my job duties. I haven’t been able to go back. I can’t go grocery shopping on my own, I can’t take a bath (an important part of self-care for me) without my husband being home to help me get out or monitor me when I inevitably trigger a POTS episode. Even showering sets my heart off and necessitates about 30 minutes of recovery time.
Every week I have two 1.5-hour infusion appointments, two 1-hour physical therapy appointments, and one 1-hour mental health appointment, at minimum. Most weeks I have follow ups, specialist visits, and tests on top of that.
I have applied for SSDI, because am physically and psychologically incapable of working a full-time job while maintaining any semblance of self-care and general day-to-day functioning (I have been rejected twice and now have an attorney at the hearing stage).
This is not for lack of trying, I’ve done my fucking best, and there is nothing more I can do to make myself better. I mostly follow the Mediterranean Diet (modified for the GI issues). I don’t drink caffeine. I get at least nine hours of sleep every night. I practice mindfulness. I check in with my body multiple times per hour to see if I’m hungry/thirsty/need to pee/hurting anywhere/have an elevated heart rate/holding my body optimally/breathing well etc. I do yoga stretches on days that I can. I see the doctor when something is wrong. I follow the doctor’s directions. I actually do my PT exercises. I don’t do weird shit to my body. My phone filters blue light after 4:30 and I try not to even look at it for an hour before bed at least. I am sensitive to my autistic needs and embrace and accommodate them.
I do EVERYTHING I can to be well, and always have, but I am not. So please, stop telling me this is temporary, because it’s not.