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A Day in the Life of Someone With Rheumatoid Arthritis

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Contrary to what people think, rheumatoid arthritis (RA) can occur in anyone at any age. As a 19-year-old living with this autoimmune disease, as well as fibromyalgia, I’ve nearly heard it all when I tell people I live with RA. Despite what some people may think, no cure for RA exists. While it can be managed with the right mix of medication and/or alternative treatment, it’s a chronic illness that will be with me until we find a cure.

They say never judge someone until you’ve walked a mile in their shoes. While I can’t exactly hand my shoes over, I would instead like to attempt to explain a day in the life of someone living with RA.

Chanel McCalman.3

Imagine waking up one day with extreme fatigue that you just can’t shake. Now I’m not just talking about being tired. No, this is more. Imagine how you would feel if you’ve been up partying all night with no sleep mixed and a long-lasting hangover from hell. Now imagine doing this for a whole week nonstop, and you’re left with the feeling of how you wake up when you have RA. Only you haven’t had the joys of a night out.

You roll over to your side, trying to get up in the most comfortable position without putting your already aching body in too much more pain. As you put your feet on the ground, you brace yourself for the day ahead. You know it’s going to be a tough one as you wake up feeling like you haven’t slept. You’re in an intense amount of pain already. It’s your feet and hands that have been giving you the most trouble lately. You curse yourself for the days when you took your healthy body for granted. You wish you could go back to being pain free.

As you limp to the kitchen, you try and get your “normal” walk on since you don’t want to alarm others.

Every single step and movement you take is a struggle. You feel stiff and wish the constant sharp, stabbing pain would go away. but you know you’ll be lucky if it disappears before midday. RA is always worse in the morning. It’s especially hard to complete your simple morning tasks you once did so quick and easily.

You pick up the jug to fill it to make a cup of tea, but your hands are so sore you can’t lift the half-filed jug. You opt for a glass of water instead and wonder whether it was that little bit of extra walking you did yesterday that’s making you feel even worse today.

You’re not particularly hungry. In fact, you are feeling rather nauseous. You realize it’s probably the new medication you started on that’s making you feel so ill. You curse your body for not cooperating with the other four medications you have already tried but failed on. There’s a long list of side effects to this new medication, but you’re hopeful this will be the one that finally works. You know there is no miracle drug for this type of disease, but that doesn’t stop you from wishing for one.

Because you are in so much pain, things are taking longer than you thought they would. Having the curly (frizzy) hair that you do, it’s crucial to wet it before leaving the house unless you want to run the risk of looking like Sideshow Bob from “The Simpsons.” You usually have a shower in the morning to do this, but you’re off to a rather slow start as it is and knowing that with the amount of pain you’re in it’s not going to happen this morning.

You struggle to get undressed without aggravating your already sore body. You can barely lift your arms above your head since your shoulders are in so much pain. You opt for a button-up shirt so you don’t have to raise your arms again. Luckily your fingers aren’t too sore today so you can do up the buttons.

You know driving today is going to be extra hard. Your wrists have a mind of their own and decide it’s a good idea to ache today. This means steering and changing gear is going to be very painful.

As you wait at the doctor’s office, you see some kids coughing and spluttering and pray they don’t come near you. You usually love kids, but your immune system is already low and you can’t risk picking up another infection. They remind you of your younger cousins, and you feel guilty for not having the energy to play with them like you used to.

It’s off to get some more blood tests done. You just about know everybody at the lab by name, and all the receptionists know how to pronounce your name correctly. That’s one advantage of being a regular at the clinics I suppose.

You plan to meet up with friends for lunch and a walk. But after this morning, you’ve decided you’re going to have to reschedule. You feel guilty for cancelling on what seems about the hundredth time. But you know there’s no way in hell you’re going to be able to last the afternoon without a rest. You are slowly learning to listen to your body and accept what it’s telling you, but it’s certainly not easy. It never seems to get any easier telling your friends that you can’t come. You try explain to them how you’re feeling and why you can’t come, but you’re always anxious they won’t understand.

It’s home to bed for a rest. You set your alarm for late afternoon so you can get up and do some jobs. But you’re so tired you don’t hear your alarm go off and next thing you know it’s dinner time and you’ve just woken up. You still feel like absolute crap. That new medication is really knocking you around. You feel dizzy, nauseous and still extremely tired despite the big sleep you’ve just had. Your body is still so sore, and you wonder for the millionth time that day if things will ever get better.

You’re tired of not being able to do the things you once took for granted. You’re tired of nobody understanding. You’re tired of rheumatoid arthritis consuming you.

Is there no end to this crippling disease? You pray that things will be better tomorrow.

Follow this journey on C.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: December 15, 2015
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