This post was originally written in April 2015. However, a reminder came up on Facebook where I shared this post from my personal blog site and I felt that it might help others living with fibromyalgia to express what they struggle with on a daily basis. Please feel free to share AS LONG AS you give me CREDIT.

​Dear mother, father, sister, brother, cousin, aunt, uncle, grandmother, grandfather, son, daughter, friend, co-worker,

     In speaking to a close friend recently, I realize that this letter isn’t just important, but crucial. Fibromyalgia awareness day is May 12th, so this letter cannot come sooner. I need to share some important information: Chronic pain is not a choice, it’s not enjoyable, and it’s not faked. Whether it’s LYME, Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Myofascial Pain Syndrome, Lupus or any of the other disorders and diseases that cause chronic pain. According to the Mayo Clinic: “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals”.

     We are not looking for pity, and for those that are lucky enough not to deal with chronic pain, we don’t even require understanding. What we do ask for is respect. Respect that our pain is real, that the side effects of our pain and the medications we take for our pain are real.

     “How are you?” is a loaded question. Do you want the answer that is given so that you don’t have to hear the whole *sordid* story; or, do you really want to know how we are doing? Because, we, as chronic pain sufferers, are phenomenal actors and actresses. I believe we should win awards for our “I am fine” answer. When we talk to others who suffer from chronic pain, we ask about each other and give a number from 1-10, in terms of level of pain, with 1 being low and 10 being out of control. I’ve been lucky to have some friends catch onto that and ask me with the rating.  I guess what we want you to know is that our fine is usually different from your fine. Chronic pain means just that. Hardly a day goes by without some level of pain; however, we do have some days that are better than others. But, just because we “look good”, doesn’t mean we are ready to tackle a marathon or swim from Cuba to Florida (as one fellow fibromite made news – a clear exception to the rule – my mother is waiting for my turn to do the swim – just for clarification, I’ve NEVER been a good swimmer). Some of us are lucky enough to deal with low pain, and some of us are in so much pain, we require aids to help us walk (i.e. canes, walkers, wheelchairs).

     Pain affects every functioning part of your body: physical, emotional, psychological, and sensorial. It affects your sleep, often causing disordered sleep. Some can’t seem to get enough sleep and some actually aren’t getting enough sleep. It causes depression and anxiety. It affects all five senses. Because you are in persistent pain, it’s difficult to exercise, whether it be gentle movement or anything at all, on some days. It affects your ability to focus. For me, to be able to sit still is nearly impossible. If I’m watching TV, I’m also playing a game on my computer and texting with a friend. If I am reading, sometimes I need to re-read a paragraph over and over again. Some of us lose time. I am not referring to blackouts, per se; however, for me, I will stare off for what seems like moments and its 20-30 minutes later. We can be forgetful and have what’s called “brain fog”. It literally feels like there is haze around your thoughts. It’s as if you have to wade through pea soup to be able to complete simple tasks. Honestly, sometimes I would prefer the pain to the fog. Up until a few years ago, people were fascinated by my ability to remember things. My long term memory still stands strong; however, my short term memory has become quite weak. I try to play puzzle and quiz games to strengthen this present weakness.

     My chronic pain diagnoses are fibromyalgia and chronic fatigue syndrome. Interestingly enough, these are two disorders that my father researched over 30 years ago. There are many overlapping characteristics that fall within these two disorders. I am lucky and grateful that I have had a friend introduce me to support groups (all online) which in turn have brought me more friends that *get* me. It’s nice to be understood in that respect.

     So, I am open, as are most of my friends, in talking about our chronic pain disorders. Please feel free to ask me any question you’d like about either of these two disorders. I can tell you how I feel, and if I don’t have answers for other questions you might have, I have places to direct you, including (but not a comprehensive list): Mayo Clinic, National Institutes of Health, and National Fibromyalgia and Chronic Pain Association. Just please understand that chronic pain illnesses are often thought of as “invisible illnesses” because you can’t see visible reason for the pain. This doesn’t mean we aren’t hurting. So, the next time you see someone that you know has a chronic pain disorder, or you see someone walking out of a car in a disabled parking spot with seemingly no difficulty, please don’t judge. Don’t assume. And for goodness sakes, please don’t ever say, “But, you don’t look sick.”

Sincerely yours,

Kate

     Y’all know what I’m referring to when I talk about using my spoons, right? This is an important concept for anyone living with a chronic illness to know about. It’s especially important to use to explain to someone who does not live with chronic illness. In the case that you didn’t know about it, Christine Miserandino developed The Spoon Theory. 

     So, on Sunday, I had a lot planned. That was my first mistake. I knew I had to leave the house at quarter to four to pick someone up to go to a late afternoon concert. Before that, I wanted to fold my clean laundry that hadn’t been folded yet, do the laundry that had piled up from last week, clean the kitchen and living room, shower, and get ready for the concert. That’s a lot of spoons, people! Yet somehow my fibro addled brain thought I could get it all done.

     HA! That morning, I woke up with my alarm. And, while I got a decent night’s sleep, my only focus was to figure out when I could get back into bed. I try not to make a habit of napping daily but there are just some days where whether or not you do nap, you aren’t going to get as much done because you’ll be thinking about how sleepy you are, how much you need that nap, and your productivity level will drop. So, I decided to not do the laundry. I still had clothes I could wear - plus, it was SO cold outside, I couldn’t imagine getting out of my snuggie unless it was into a warm bed. 

     Change of plans - no laundry but nap was needed. So, I ate a hearty and healthy breakfast (I think, as I don’t really remember) and crawled back under the warm covers. I napped for an hour and a half (or so), and got up. I chose to start with the least difficult of the tasks and tackled my living room. It took a short time, just picking some things up to throw away and do a quick vacuum and swiffer. Easy enough, right? NOPE. I think I woke up with some of my daily allotted spoons already missing and after this “simple” task? Boom - spoons gone! I still had to shower and get ready for the concert. All other plans were pushed to the curb. I don’t know about you, but for me, sometimes showers invigorate me and sometimes they exhausted me. On Sunday, it was the latter. 

     After showering, getting dressed, doing my hair and makeup, I was done for the day. But, the day wasn’t done. I had been counting down the days for this concert and despite my exhaustion and pain creeping up, I was NOT going to miss it. So, I went to pick up my friend, waited in line to get our seats and sat down. As soon as I sat down, I felt my body just go slack. I had pushed it too far. Thankfully, this wasn’t a concert where there is a lot of standing up, sitting down and dancing, so I could sit quietly and enjoy the show. I was just worried that not only had I used up my spoons for Sunday, but for Monday as well. And, while most hate ending their weekend, Monday is one of my favorite days as I get to spend a couple of hours with some super cute babies. By the time the concert was over (which was amazing by the way - I sang every song along with them), all I wanted to do was to go home and crawl into my pajamas and get ready for bed. But, I had to drop my friend off, come home and make some semblance of dinner, and then get ready for bed at my regularly scheduled time. As the night wore on, I started to notice even more so that my body and mind were deteriorating with all I expected myself to do - and I hadn’t even done half of it.

     I’m not berating myself at all, but I knew my list of things to do was too much for this fibro body to handle. My coach, and friend, once said to me, “somethings are flare worthy,” meaning that sometimes you have to be prepared for whatever may come to you fibro wise in order to do something you really want to do. She’s right. The concert was flare worthy. But, I am blessed to have a flexible schedule so that if I am in a flare, I always have the option to move things around. My time with the babies is voluntary so I canceled that, and took the time on Monday to be kind to my body.

     My fibro diagnosis is about five years old now, although my symptoms have been present for much longer. That may not seem a lot to many, but I’ve learned more about what my body can and cannot handle in these five years than all of the rest of the years put together. I’m not perfect, as sometimes I forget and push myself to that flare point (worthy or not). But, with my training as a coach, coaching others, and just learning about myself, I think I have become pretty good at keeping many of the more common fibro symptoms at bay.

     Is this something you are struggling with? Would you like some guidance in how to plan for busy days, how to use your spoons effectively, and how to treat your fibro body kindly? Drop me a line and let’s set up a time to chat. You can do that here. I’m looking forward to hearing from you! =)