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by Tiffany E.
My first thought of every day is pain.
Long before I’m aware that my husband is noisy (he’s always up before me) or that my dog is curled against my side snoring like a truck driver with a deviated septum, I’m aware that this day is another day of pain. I don’t say that to evoke pity; it’s just a simple fact–as true as saying that every day I wake up and still have a nose. As September is Pain Awareness Month, I feel like that is an important point to make. For those living with chronic pain, pain isn’t something we experience sometimes. Yes, some days are worse than others, but ultimately, there is never a thought or action that occurs without going through a filter of pain.
Before I get out of bed, I do an inventory to see if any joints have dislocated during the night. Many days, I use my adjustable base bed to sit up, because I can’t sit up unassisted. I stand up with a cacophony of creaks and pops from my lower body, and I start my day. I take my dog outside and I hope that I’m able to navigate the steps to get her in and out safely. I fix coffee and sit in the most comfortable chair we have and try to urge my body to do what is expected of it.
You see, that is the hard part of living with chronic pain. It’s always there. The pain is there when you’re having friends over. The pain is there when laundry needs to be done. It’s there on your birthday and Christmas. There’s never a moment of reprieve.
The day continues, and it’s full of compromises and trade-offs. Should I go to the gym? If I do, I probably won’t be able to cook dinner. If I take a shower, will my shoulders be too painful to dry and fix my hair? Or should I trade cleanliness for cuteness? Is there anything going on in the evening? If so, I can’t do much during the day. For me (as well as many other EDS patients), I don’t have the luxury of doing what I want. I have to decide what is most important and use my lower pain hours to accomplish that. If I decide that laundry must be done, I’ll probably also decide to forgo cooking dinner or running errands. If I want to join my husband for lunch, I’ll probably save my shower for later in the day so I won’t be exhausted and in more pain than normal when I see him.
For those of us living with EDS (or any chronic pain condition), our pain becomes a full-time job–and we become experts at hiding the toll it takes. While my pain is a constant as I continue throughout a day’s activities, I can’t always acknowledge it. I make decisions and adjustments to try to keep it at bay, but, ultimately, it’s not something I mention. I walk upstairs and strain every muscle to try and keep my knees and hips from dislocating, but I make a joke about getting old and keep going if anyone notices my struggle. I have to take a break from driving because my shoulders hurt from the exertion of turning the steering wheel, but I tell others I simply needed a Diet Coke break.
My day ends much the way it starts. I’m very aware of pain when I lie down. I stare mindlessly at television or smart phone apps in hopes of distracting myself into restful oblivion. I search for the position that is least likely to cause an overnight injury, though I’ll wake up every 30-45 minutes all night because I can’t tolerate any position for long. I fall asleep grateful for another day in a beautiful life surrounded by wonderful people, but also very aware that I’ve spent the whole day fighting, struggling, hurting–but always smiling.
As we spend this month trying to educate ourselves and others about the difficulties of living with chronic pain, I hope we also use this time to remind ourselves to be kinder. There are a lot of struggles hidden beneath jokes and smiles, and we can all be more understanding to what lies beneath. We can offer help or a listening ear. We can share a joke or a silly meme. Chronic pain patients often long for understanding and compassion–and, fortunately for us all, that’s a gift we can all give freely.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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