What Does Rheumatoid Arthritis Feel Like?Without a doubt, I’ve heard the question “What does rheumatoid arthritis feel like?” more times and in more forms than anyone can even fathom.  What that says to me is that there is a desire among people to truly understand what it is like to live with RA or another chronic illness day to day, on a long-term basis.

Next year will be the 30th anniversary of my rheumatoid arthritis. An auspicious anniversary to be sure, but I have lived through so much over the tenure of my illness that’s it’s difficult to put into words the full scope of my experiences.  There has been a disgusting amount of pain and suffering, but there has also been an equally fantastic amount of learning, meeting people, sharing, and being honored.

I have contributed to Poet’s Corner before, and I always try to do something more on the artistic side, instead of just writing another blog. This time, for this Poet’s Corner, I’m going to do my best to answer the thing that people ask me most about my disease and describe what rheumatoid arthritis is like. It was surprisingly easy to come up with an answer. It’s half stream of consciousness, half allegory, and, hopefully, all evocative….

What Rheumatoid Arthritis Feels Like…

Having rheumatoid arthritis is like spraining all your joints at once and having someone wrap them all with tiny heating pads while they force you to move.

Fatigue, fatigue, fatigue.   I’m so tired, all the time.  I need more coffee.  I need more caffeine pills.   I can’t fucking sleep forever, either.  Ten hours last night, what the Hell??  I can’t sleep my whole fucking life away.  I wish I didn’t have to sleep at all.  Bah.

I have to see my doctor for narcotics every 30 days.  Fucking drug addicts, this is what they did to us legit users.  Why do I have to get a script every single month, schlep into the city, and pay for a visit, because they find shyster docs who they pay cash for Oxycontin??  I had to fight my insurance company for a year and go before a judge to get the pills I need because some junkie snorted up his future.  Now they want to limit the number of pills a pharmacy can get per month, regardless of the amount of scripts they have to fill?  Wonderful.  Disabled people screwed again.

God I’m so thirsty all the time.  I don’t get it.  I drink so much water I feel like I’m going to burst, and it’s doing nothing.  I still wake up in the middle of the night and my tongue is stuck to my cheek.  Ugh.  How can someone who drinks enough water to pee 15 times a day still have dry mouth?

Hip hurting.  Fear.  Afraid it is wearing out after 20 years.  It’s going to go soon.  The doc said I don’t need to replace it all, only the top part.  Of course, if the fucking doctor who screwed up my first hip but the old hip in, then I’m screwed.  Scared.  Angry.  Frustrated.

Allison just came home from work.  She works so damn hard every day, I can’t even qualify for a work at home job.  Worthless.  Inadequate.  She knows she will probably be the only stable full time income and she still married me?  She is so compassionate. Love. Admiration.  My stupid disability check is a pittance.  Embarrassment.

Ankle hurts.  My foot hurts.  Tried of walking on the side of my right foot.  This botched ankle replacement was supposed to fix everything.  Fury.  Anger.  Fist clenched.  Foot hurts where the metatarsal bones have begun to poke out on the side.  Goddamn this disease and everything with it.  Now I have to schedule a second surgery for this ankle.  Fuck. FUCK. FUCK!!!!!!!

I’m going to play so video games to relax.  I hate doing it especially during the day when Allison works, but I have to unwind.  I boot up the game and after 30 minutes, hands hurt.  Fucking right thumb hurts now, can’t play any more.  Defeat.  Exasperation.  Frustration.  Mouse on a wheel.  What’s the point?

I’ll write something, that is always a joy.  Hands hurt.  Don’t care.  This blog came out great!  It will be well-received, I know it.  Man, why can’t make a ton of money writing?  I mean I know I’m good at it.  Wonder.  Questions.  I guess I will try to write another book, I know if I keep trying it will happen for me eventually.  Optimism.  Pride.

Alarm. Time to take my pills. Sigh.  Fucking heart attack pills, fucking doctor stole 20% of my heart from me.  Shouldn’t have cleared me for surgery.  Extreme anger.  Defibrillator installed.  I literally gave part of my heart to this disease, what better allegory can there be?  Pride in stoicism.  Toughness.  Ah, I can take it, I can fucking take anything this shit will throw at me, and keep on ticking.  Never cry. Always stay positive.  Fuck yeah.  Superiority over the weak.  Pride.  Confidence.

Having chronic illness is like being hooked up to a torture device with a madman at the controls.  A true madman, that is, not one that has a method, or an ethos, or a procedure.  Someone who turns on the torture machine at will, whenever he feels like it.  There’s no way to predict when or how it will happen. The uncertainty takes many years to master dealing with, and the fact you never know makes life with rheumatoid illness and other chronic diseases extremely difficult.  More so than other, less unpredictable, diseases.

Time for bed. Another restless night.  Back hurts.  Foot hurts.  Neck hurts.  Fucking still have to get my teeth replaced, 60 thousand dollars I don’t have.  Here we go with the air conditioner, ready to freeze me and make me suffer another night.  Still better than sweating, I guess.  Exasperation. Exhaustion. I’m sure I’ll wake up fatigued again tomorrow.  Maybe I’ll take an extra dose of steroids tonight just so I can have a good day tomorrow.  Yeah I will.  Shame.  Feeling of being scolded.  Don’t care.  I’ll read some.  Pass out. iPad hits me in the head, wakes me up.  Flash of anger.  Subsides.  Give up.  Sweet sleep, where nothing hurts.

This is the best example I can give you of what goes on in my head (and body) on a daily basis.  Having a chronic illness and the unpredictability of the disease is something that is almost indescribable, so that’s why when you ask one of us “what it’s like?” we have trouble answering.  I hope this gives you some insight into the struggle, and also makes you realize that you might not be that different.

 

Daniel Malito wrote this expressive essay for the latest issue of Poet’s Corner (& Artists Too)…

creakyjoints.org/blog/poets-corner-artists-too-issue-32-dreams-hope-cure/

…the CreakyJoints literary publication that features the stories, poetry, photographs and artwork of those who refuse to let chronic illness stand in the way of creativity. If you would like to submit some of your work to Poet’s Corner, please contact Editor Brenda Kleinsasser @ [email protected]

 

CreakyJoints wishes our good friend and featured blogger Dan Malito a speedy recovery as he heads into his latest ankle replacement surgery

Do you experience difficulty describing what it is like to live with chronic illness to others?