How My Chronic Pain Affects My Everyday Life
Imagine one day waking up and not being able to use both your hands. Your non-dominant hand suddenly has some pain that feels like lightning shooting from your pointer finger and thumb, down your hand and through your wrist. You can’t grip anything – touching the door makes your wrist feel like Hercules himself has a mad grip on it. You go to pick up your bag to leave school, then drop said bag because now, the pain is in your shoulder and lifting anything sends waves of throbbing pain through your shoulder, arm and hand.
Imagine, one minute you’re fine, sitting outside with your friends, when your head begins to hurt. It isn’t just any hurt though; the light from the sun makes you feel like your eyeballs are trying to crawl out of your head. The laughter of your friends makes your head feel like someone is taking a pickaxe to your temples. Your best friend’s perfume makes you incredibly nauseous. Your heart rate increases something fierce. You can’t turn your head now, because it is stiff, and feels like the base of your skull got hit with a 100 mile per hour fastball thrown by the world’s best baseball pitcher. The pain laughs at the Ibuprofen you took, and you’re not feeling like you can hold any fluids down because you’re still nauseated by the smell of your friend’s perfume. If you’re wearing a ponytail, the skin on your face and head feel like they’re extra tight and ready to snap off your body at any moment. Even if you do let your hair out of that awful ponytail, your hair still hurts your head. It feels heavier than a pile of soaking wet towels.
Imagine one day, you wake up and go to babysit, but suddenly it feels like your knee is about to give out and snap. It hurts to put weight on it, as if someone hit you in the knee with the hammer of Thor. The pain cackles at your acetaminophen. No longer can you chase after your little cousins. Letting your nephews sit in your lap sends horrific, debilitating muscle spasms down your legs. Bending to get anything at work feels like there is a fire in your knee.
Imagine that one day, you’re crouching when suddenly, there is a shooting pain and ferocious stiffness in your hips. It’s almost as if your hips have rusted, and decided that work would be the best place to fall apart. It feels like there is sandpaper cushioning the joints in your hip. Your pelvis isn’t supporting you as it should, because that is tilted. Balance doesn’t exist and you land on your tail end, in front of your co-workers, and you scramble to get up – but end up putting strain on the knee, where the screw is broken, and that sets off a whole other chain of aches and pains that you push through until you can finally sit down. But, once you’re sitting, your spine reminds you that it, too, hurts – feeling like it is bent in the middle because the scoliosis wants to come out to play. Sitting up straight makes your muscles tighter than a rubber band pulled to its limit, but slouching sends lightning bolts of pain through your shoulder blades.
Now, imagine when you go to the doctor to get all of this checked out. When they touch your knees, hips, shoulders and neck, it’s as if you want to crawl out of your skin. You can feel your soul leave your body while these physical exams are being done. Your doctor orders blood work and an MRI. You have claustrophobia, and the MRI is of your wrist, so you go in head first. The panic of your claustrophobia sends your pain receptors on a wild ride that you just want off of. The next MRI is of your hips and lower back to figure out what exactly is causing the pain. You can’t move your legs, because if you do, the MRI won’t come out properly. The thought of not moving your legs makes you feel incredibly anxious, which then in turn makes your legs feel like they have electric shocks shooting down them, and your muscles cramp like you’re dehydrated and haven’t had a drink of water in a week, although you had two giant bottles before your appointment.
I live with mixed connective tissue disorder (MCTD), fibromyalgia, chronic migraines, scoliosis and arthritis in my lower back. I have two screws, one of which is broken, in my knee because my knee cap was out of place. Everything in my right leg had to be shifted because of it. The biggest bone in my wrist is inflamed, and I don’t ever recall fracturing it. I am currently being tested for lupus and rheumatoid arthritis; currently, the doctors are leaning towards a diagnosis of lupus.
When the weather is going to change, I feel it in all of my joints because of the fibro and the MCTD. If it is going to rain or snow, I will get a migraine and my hips, knee and lower back will start to flare. The pressure in my head from the migraines will make it feel like someone is blowing up a balloon in my head. My hips, back and knees feel like all ghost joints went for a roll in the sand without me then returned to my body specifically to make my life miserable. If I get stressed out, my pain flares. If it is humid, I can feel my joints start to swell and become stiff.
I am lucky enough to have a fantastic support system. They make sure that I stay on top of my health, and they make sure that when I have a bad pain day, that I am drinking enough water and not over exerting myself.
It is said that when the going gets tough, the tough get going. I am continuously reminding my friends that if I let the pain control me, that I’d never get anything done. When you see someone who is having a hard time with their symptoms, ask if there is anything you can do, even if it is just spending time with them watching movies. Being in chronic pain can be isolating for so many, and knowing that friends are there can help to alleviate that sense of isolation.
For me, spending time with the people I love helps to deal with the excruciating pain, and the occasional loneliness that I feel. Being a disabled person who works and has managed to get this far with a body that is so dysfunctional isn’t easy. It’s difficult to work in a retail job with bright lights and a perfume counter just feet away. It is painful to walk to work some days, especially when your hips and knees feel like they may crumble beneath you at any given moment.
When dealing with emotional problems or a high stress situation, it is difficult to not only deal with that, but also to deal with your body feeling like it is on fire from the waist down.
If I could help anyone understand how I felt, I’d ask for patience on my bad days, and understanding on my good days. I’d ask for patience while my walk is a little slower, or when I’m feeling extra moody because I feel a migraine coming on, or I’m snappy because I’m overwhelmed with pain from the fibro. I’d ask for understanding that while in this moment, my symptoms are under control, that could change at any given moment in time. A certain food could trigger a migraine, stepping a certain way could make my knee hurt, bending to reach my purse could make my hips and back feel like they’re going to give way.
Patience, understanding and friendship are truly the best things anyone could give to a friend with chronic pain. These issues aren’t anything we asked for. Remind us that we aren’t in this fight alone, that you love us on the bad days just as much as you do on the good days. Continue to invite us out; we may say no, but the fact that we were even thought of to be included makes being in chronic pain so much easier to cope. Love us and be a good friend to us.
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