This may surprise some of you, but I love coffee!! I love the smell of coffee, I love the taste of coffee, and I love the energy boost that coffee gives me!! What I don't love is how I get judged, questioned, and chastised by people who don't understand my affinity for coffee. So now it is time to inform the uninformed and set the record straight.
Being an RSDer is a challenge in and of itself. The pain, the ever morphing symptoms, the balancing of medications, and the restructuring of a semblance of a life is a daily battle ... and it's friggin exhausting!! Normies, think back to the last time you were sick or injured. You slept quite a bit, didn't you? The drugs that the doctor gave you made you feel woozy and hazy, didn't they? Your energy level was lower and it took time for you to heal and bounce back to your "normal" self, right? Here's the deal ... there is no cure for RSD, therefore I do not heal, nor do I bounce back. I need "spoons" to get through my day, and without caffeine there are no spoons available to me outside of an adrenaline rush, and I don't get many of those. One of the biggest problems that an RSDer faces is movement of our affected body parts. It hurts, dammit!! But we have to move or we fall victim to atrophy and loose the use of an appendage all together. In layman's terms, atrophy is when when a body part (arm, hand, fingers, leg, foot, toes) begins to turn in on itself/themselves from lack of use. The muscles waste away and there isn't much hope of getting them to straighten out again. Soooooo ... I've gotta move in order to keep myself at my own personal "normal," and that's where coffee comes into play for me. It gives me the energy to move!!
Yes, I know that caffeine is a stimulant and I know that it is not beneficial to my central nervous system. I am constantly informed by people, who think they know better than I do, that my caffeine intake is the reason that I don't sleep well. Ahem!! You ... are ... WRONG!! For the most part, I do not have a problem falling asleep. I am so exhausted from fighting pain all day that I pass out at night!! Some nights it takes a little longer for me to calm the muscle spasms and skin fizzies so that I can sleep, but I can still fall asleep!! It's not the caffeine that inhibits my ability to stay asleep either, it's the pain!!!! All it takes is for me to roll over in my sleep and tweak an arm, or get a leg hooked on the other leg or trapped in the top sheet, or another spasm hits and a flailing body part hits a wall and I'm awake!! If it's a mild "whack" I can usually get myself back to sleep, but if it's a major "whack" I'm up for good!! Some nights are insomnia nights that have nothing to do with my caffeine intake and everything to do with my pain levels. On those nights I try to stay away from the coffee until 3a.m. in order to give my body a little bit of time to rest and reset, even if there's no sleep involved ... but I'll hit the button on Flo (my coffee maker) right at 3 so that I can start gathering up my energy (spoons) for my day ahead.
Life as an RSDer is not easy, but life, in general, is worth staying awake for!! When I was married, my ex-husband could not stand the smell of coffee. It made him physically ill. For those years, my coffee drinking was at a minimum and I slept 12-14 hours a day, on average, due to the pain and painkillers and muscle relaxers. I missed out on a lot of life things, good and bad. Since my divorce 5 years ago, I have been able to drink my coffee any time, anywhere, and I have missed out on very few life things in comparison!! Some of my fellow RSDers have picked up on the whole caffeine/spoons connection and they clutch their cups every bit as much as I do, I just admit it more often. Some of them drink tea or soda pop to get their caffeine buzz, I have opted for coffee. I have been known to swap out my hot coffee for an ice cold Pepsi, but coffee is always my first choice, hot or cold.
My trips to my favorite coffee shop, Ziggi's, have been called into question as well, but for financial reasons, not caffeinated ones. The answer there is just as simple ... No, I can't afford all of my trips to Ziggi's, but every few months my parents will give me a $20 Ziggi's gift card (I call this my Emergency Relief Fund) and most of my trips happen during the week after I get my Social Security Disability check. You know, while I still have money!! (FYI - I buy Folger's Black Silk coffee in bulk for my daily brews.) For the other 3-4 weeks per month, I use my gift card or the free punch on my Ziggi's Punch Cards (I have a few saved up). So I guess when push comes to shove, I really can afford my Ziggi's runs so the naysayer's argument is moot once again!! :-P
I have faith that I will continue to drink my coffee and advertise my need for it. I have faith that my family and friends will continue to come to my defense when they hear other people question my "addiction" to coffee, because they know that my real "addiction" is to life things, not the coffee. I have faith that my 2nd pot of coffee will taste every bit as good as my 1st and it will give me the strength, energy, and spoons that I need to get through my day.
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