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For the past three years since 2015, I had spent hours and hours and hours talking to my mom and working through my feelings about having a late autism diagnosis at 22. It was a long process of recognizing behaviors and scenarios that seemed unrelated throughout my childhood and adolescence, but gradually all the pieces started popping up and coming together and with it, a profound sense of relief. Years of feeling like a fish out of water finally had an explanation and I couldn't have been happier. I had had other issues with my body for some time at that point, but for one reason or another never got around to pursuing it and just lived with the pain that eventually would cause me so much hassle that I was going to make an incredibly difficult decision. At that time, one diagnosis had distracted me from the urgency of the situation that was to come.
It was mid-morning on one February afternoon. I was very upset—crying on a Facebook call with my mom because I was saying out loud for the first time that I had come to the conclusion that I would never be able to work full time because of my pain. It upset me greatly when I recounted my body's events to her that day. I had an immense, shaking pain in all of my joints and it was so unbearable that I could not get up off the couch and I had a headache that pulsed and radiated through my teeth. I tried to brush it off, but it was aggravated again after my daily walk with my husband and our dog that evening. As I stumbled through the front door, barely able to hold myself up, I then laid down in the living room on my foam roller as I usually do when my body is not cooperating. Except for this time, the pain was so incredible that it could not be relieved with the usual methods. So there I lay sobbing on the floor with the foam roller under my back even though it was totally futile. I heard my husband call out to me asking if I was alright, unaware of my tearful display. I forced myself up and went into the kitchen, unable to describe how I was feeling, so I just waited for him to notice how wretched I looked.
He noticed and of course as you do when you are asked what's the matter, I could not contain the well of tears. I sank into his shoulder and cried, mourning for the body that I wished with all my might that I could have and realizing just how serious this truly was as I attempted to describe my pain to him.
"It's in my back... and... it goes all the way down my leg... All the way up my shoulder... and.... and all the way down my arm... and up the side of my face..." I struggled through this sentence. It sounds so much worse when you actually say it out loud. Especially having dealt with it silently for so long.
He grasped my arms firmly, looked me in the eye, and asked, "What can I do for your pain right now? You have got to not hide your pain from me."
I just about melted when he said this and proceeded to feebly request a hot bath, a cup of tea, and a back rub. With that, he sprang into action, helped me into the bathtub and tried to cheer me up with all the boxes of tea for me to choose from. We then had a cozy evening on our couch watching videos on our devices and sitting quietly in each other's presence. He had his phone in one hand and rubbed my creaking back in the other. We sat like that for the whole evening and then went to bed. It was then that I had solidified the theory from the morning. I cannot have days like that if I work full time. Again, another sense of relief as I closed the chapter on another painful conclusion and drifted off to sleep.
This is a story of one of my worst days. Not all days are like this. Of course, after this particular incident I have made a few more doctor's appointments, but waiting for results and diagnoses takes a lot of time and effort and I know that there will be more days like that during that time. I know that there are many others who deal with chronic pain like mine on a daily basis. Because of that, I have compiled a list of the methods I practice to make each day with pain a little bit more bearable.
- Do not feel guilty for not being able to complete all of your tasks and reward yourself for what you do manage to complete. If possible, do a smaller version of those tasks, just to feel that you checked something off your list and even if it's not the exact version of how you wanted to do it. E.g., Sometimes I paint, but my hands might hurt or I might experience brain fog and therefore find it difficult to work out what I want to do on the page. When that happens, I do a few strokes of one or two colors for maybe less than ten minutes and then I stop. I can still say that I painted and I reward myself for completing the task.
- Discover and have a relationship with your pain. Talk about your pain. Explore your body. What kinds of pain are you feeling? Burning? Stinging? Radiating? Heavy? Educate yourself about the human body and your symptoms so you can use precise language with your doctor.
- Re-evaluate a gentler approach to what success means to you. All life is valuable and meaningful. Your worth is not defined by what you can do for society. Find and create a support network that can help you transition into a better self-care approach to your life. It may be that it takes longer for you to accomplish certain things or that you need more help than before and that is okay. This process can be emotionally exhausting and disconcerting but is ultimately worth it. Being comfortable asking for help when you need it will only make life that little bit easier.
- Look into mobility aids and communication adjustments. On my high pain days, I prefer to keep physical activity to a minimum and to use my wheelchair for most of my getting around the house. There are so many different kinds of good quality second-hand mobility aids available for reasonable prices online. An excellent option for someone exploring what will work for them. Equally, on days when my pain (or my autism) is causing brain fog and executive dysfunction, it can be difficult to communicate verbally. Typing on a computer or tablet (or writing on paper) to speak my mind and ask for what I need has removed that barrier that is present when I cannot speak effectively and enabled more successful interactions with others. This is one of many different solutions to these situations, so researching different ways that your body and mind can get its cogs moving again in addition to finding ways to communicate when your energy is low is a great way to learn about yourself, but also to bring you closer to others.
- Make therapy and feeling good an essential part of your day. Don't give up on improving. Keeping yourself comfortable, content, and understanding your limits will enable you to make the most of the energy you wake up with every day rather than running yourself into the ground. These activities can be anything from using a foam roller to massage your muscles, taking a bath, or any other thing you do for yourself that you enjoy. Even if it's just for a few minutes, engaging in these rewards may give you an extra boost for a task you want to get done and your body will thank you for it, too!
I'm not going to say that it gets better and that you can overcome it. Pain is an individual experience. Your pain may be constant or episodic, conditional, or lifelong. Sometimes on my low pain days, I question whether I am disabled at all, only to then come crashing down a few days later and have to start all over again. These are the methods that I remember as of now, through grit and perseverance, while my body is rebelling, but as technology progresses and healthcare advances we may see a brighter future for a society that is more receptive and inclusive of the disabled community.