It radiates from the center of my back, down my right leg, waves of agony, like someone is taking a claw hammer to the back of my calf and thigh.
It circles my neck, my head, growing tighter and tighter until I think my eye might pop out of my head.
It leaves my body exhausted and wobbly. The drugs I use to counteract the pain leave me woozy, dizzy, like I am floating in a bowl of jelly. I care about nothing, and nothing cares about me. I get up, eat breakfast, take my pills, then fall back into bed like I haven’t just slept eight hours.
I am so utterly exhausted, but more than that, I am tired. Tired of being in pain.
I am lucky, I know, that on a day to day basis, my disability does not cause any actual physical pain. About a month and a half ago, however, I was moving some furniture to clean behind it to show that I am a Real Adult who Spring Cleans Like a Grown Up Person, and I did Something. Something, I’m not sure what, all I know is that since then, there has never been a single day when I am not in pain.
I’ve been to the doctor, and the ER. A massage therapist really helped, but I could only afford two sessions, (and I’m grateful for affording that.) A chiropractor, who did fifteen minutes of manipulation that left me almost vomiting in pain and resulted in another ER visit. (Chiropractors are quacks, by the way. All of them. They are not even medical doctors.)
They say I have something called sciatica, which is a bit like calling a stuffy nose a cold; they really have no idea what exactly is wrong, but that constellation of symptoms means that diagnosis. So when I am standing in line at the grocery and almost crying, I tell people, ‘oh, it’s just my sciatica acting up.’ When I am forced to sit down in the aisle of a big-box store because my leg is spasming so badly, I say, sciatica. Only it’s not just acting up, it is throwing a gosh-darn tantrum, the kicking-screaming-spluttering-crying kind, a performance worthy of any tow year old.
I go to physical therapy. I dutifully do the exercises. I don’t see any difference, not yet, anyway. Next week I am seeing a Fancy Back Doctor, a physiatrist. I cannot wait.
Until then, I have this thing called a life I am attempting to live and the constant pain makes it rather difficult.
Pain is now the center of my world, and like any center, it affects everything around it.
I walk and hike for exercise and mental health benefits. I literally cannot walk across a room without pain now, and so I feel sluggish both physically and mentally. My brain is in overdrive with regards to anxiety. I am exhausted all day long yet lie wide awake at eleven, deep fear and panic filling my soul. My social life is curtailed. I cannot help out friends who are moving, cannot attend events that require any amount of walking or moving.
My energy is all taken by dealing with the pain, and so I have less energy, less patience, less willpower, less determination. I should be doing this. I should be doing that. I should be doing something, anything, but I am not. I am only lying, flat on my back in my bed, dealing with pain.
Pain makes you cynical. It makes you vulnerable. It takes who you are and remakes you into a darker, more twisted version. It is harder to bite back comments, it is harder to not snap. The cashier at Trader Joes asks how you are and you cannot find any words to answer him. Words are harder. Writing is harder. Everything is harder. The sun is hotter, the humidity is worse, you live off of sugar and carbohydrates because cooking is just too much work.
Somehow, I drag myself to my part-time job, with the aid of copious amounts of caffeine and painkillers. Somehow, I keep living, though that implies I am much worse than I am. I’m not, I’m just, like millions of people all over the world, in pain. I am acutely aware that many people live in much worse conditions than myself and with much worse conditions. I acknowledge that I am the epitome of a spoiled American brat, but……….I am in pain.
And pain, of late, is my whole world.
Stuff I’ve Learned From This Injury/Sciatica/Clusterfeck of Pain
Or, Dealing with Doctors While Autistic
- Never go to the ER alone. Take a friend or family member. Also, if you’re bad enough to go to the ER, you’re probably too bad off to drive.
- Take your laptop/ipad/phone. You can often hook into the hospital wifi while you wait.
- Take all the bottles your meds are in. Do not count on remembering your exact dosages and names of them if you’re bad enough to be in the ER.
- If a certain prestigious local university is graduating the night you are going to the ER, remember that they may have some really, really awful traditions of Jumping Off Bridges and Landing in the ER, and you will have to deal with a longer wait because of that. (Seriously.)
- If you’re dealing with a problem and have to see multiple doctors/therapists/specialists, keep a log on your computer about the problem, who you’ve seen, what you’ve had done, what meds you are on, etc. You can simply add a line or two every time you see someone new, then print it out to take to the latest doctor.
- I also wrote a paragraph about my autism and how I best communicate, behaviors they might notice, etc, for doctors and the physical therapist and they seemed to appreciate it a lot. (see below)
- Wear loose, baggy clothing to the doctor, often, if they can access your chest/back, they will not make you change into one of those horrible gowns.
- If you can’t bear to wear one of those horrible plastic bracelets, tell them that you are autistic, you cannot wear it, but you will hold it.
- I am still learning this one, but don’t beat yourself up over your lost productivity. You are doing all you can right here and right now. Nobody can ask for you to do anything more than your best.
- You should not be in pain. If you cannot get the answers you want from your first doctor, keep looking, keep searching, keep going until you do get an answer.
Here is the paragraph I included with my health history. I have been told by doctors and therapists that it is very helpful. Please do not steal it but I do encourage you to write your own.
Very Important Information: I am Autistic. I have Aspergers syndrome/sensory processing disorder. This means that I process and communicate information differently than many people, and that my sensory system is very different than most people’s, including the way I sense and process pain.
Communication: I find it very difficult to make eye contact with people when talking with them but I am still listening even though I do not make eye contact.
My facial expressions do not typically portray what I am feeling.
I need you to: continually let me know if what you are doing/I am doing should hurt, and how much it should hurt. I am willing to endure pain to get better but I do not know how much pain is acceptable. Talking while you are doing things helps me take my mind off the pain. I need you to tell me exactly where you are putting your hands on my body as well as how deep the pressure will be, and how long you will be doing it for. In general I prefer deep pressure to any light pressure.
I process explicit verbal information the best. I may not understand gestures or inferences. It may also take me a second longer than other people to answer you verbally, especially if you have any sort of accent that I need to decipher.