I tripped over a Stone | My life with Fibromyalgia.
This blog is all about My life with Fibromyalgia. I have had fibromyalgia for over 20 years and have learned a few tricks to deal with it but it is my stone in the road. I am a Fibromyalgia Advocate, I have co-authored a book; The Shadow Boxers, Fighting Fibromyalgia (your personal journal)
How do you carry all your medication? What if you are traveling to care for elderly parents like I am? What if you have kids to run to school and after-school activities? What if you can never find what you need because it’s in the bathroom medicine cabinet? Or is that the kitchen cupboard? Bedside table? Who really knows??? It’s like an Easter egg hunt on a daily basis.
You need to take your medication on time! You need to have medical papers with you when you are away from home. Accidents happen. Activities run long. The quick cup of coffee out with your friend… well you have a lot to talk about! We can plan. We do plan. Then life happens.
The diaper bag! I never had kids so this little bag was completely foreign to me. I’ve carried one when I babysat, fully stocked with everything the little one may need… But. I’d never had the need to purchase one. Guys, these bags come in many shapes, sizes, and colors; find one. These sit perfectly behind your front seat. You can leave it in your car if you run into a convenience store for something… who’s gonna steal a diaper bag?
How many pockets do these bad boys have? Goodness, it’s a dream come true! I found this one on Poshmark for $12. Score. (I’m addicted to Poshmark.) I went into a few stores and just looked at some bags then searched for the one I liked until I found a reasonably priced diaper bag.
Now to get all of this into this bag!
And I did!
Ready for travel, no one is the wiser. Plus my therapy belt and some toiletries fit with ease! There is no problem anymore. I never have to explain my bag full of medications… I’m just carrying a messenger bag, that happens to be a diaper bag, that also doubles as a medication bag!
I have had a nickname since high school, my friends began calling me Emma. (Long story.) Many of you know I wish my name was C.C. Rockefeller but we don’t always get what we want. C.C. Rockefeller would be the confident, smart ass, public persona part of me. (FYI: I don’t have nor have I ever been diagnosed with multiple personalities but I do respect those who have.) The part of me who is Emma is the best friend, the listener, the compassionate one.
Emma Blue is just the best parts of me, all rolled up into one. I love that she has no fear. She could care less what others think and is never one to turn down a challenge! She is fun! She is who I long to be.
Hello! You probably know my name is Kim and I have Fibromyalgia Syndrome. I also have significant cognitive difficulties because of it… so I blog! It is definitely mind work. I wanted to start writing some bits and pieces that I remember from different times in my life. The reason? These memories are called ‘magic’simply because I can remember them!
My husband (Jeff) and I got actually got married at the Boy Scout Camp I will be talking about. We rented the entire camp and threw a weekend wedding party… but I’m getting ahead of myself. This is about my husband, as well as my three brothers, and my nephews who were all members of The Boy Scouts of America. Only my husband went all the way and received his Eagle Scout rank, meaning he earned all his required merit badges and completed all of his service project requirements by the age of 17. That, folks, is the pinnacle of honors. Our nephews followed along in Boy Scouts starting in Cub Scouts, then Webelos, to Boy Scouts. You need to get specific merit badges to complete each level, and you age out at 17.
My husband continued to serve his Boy Scout camp as he worked there the summers he was home from college. Eventually, he went to ‘camp school,’ to become an instructor. Jeff’s area of expertise was shooting… he was (and is) a dead eye. [Fun fact: Whenever we run into his old camp instructor buddies there are multiple low whispers of “s-h-o-o-t-e-r…”] My husband became the range instructor, eventually independently writing the current manual used by the Boy Scouts, to this day, “Range Set-Up and Safety.”
Here’s my man in full instructor mode in the following picture.
(I need to be clear, this is NOT a post about gun laws or opinions. This is only a post about how my family members learned gun safety and awareness, starting with proper training in The Boy Scouts of America.)
First, and always there is respect shown to the United States of America’s flag.
The Webelos shooting range is for BB gun practice only. The older scouts may join in. That is my father-in-law in the foreground (he is a decorated Scout Master) with one of my nephews in the first picture. In the second picture, two of my older nephews, who are Boy Scouts, are participating in the BB gun shooting range.
This following picture is the range for the Boy Scouts who learn everything there is to know about a .22 caliber rifle and also get to practice shooting these guns with instructors on site.
I consider this a magic memory because this was done on a family weekend. Three generations together, learning, growing, and enjoying puppy breaks!
We (the hubby and I) begin simply enough in the bedroom… on weekends we watch movies in bed. Popcorn, puffy pillows and two massive smelly dogs happily snoring at our feet. I was telling him I wanted to interview him for a post about the healthy ‘partner’ living with a chronically ill loved one. I explained when one person gets a chronic illness, there is a very high divorce rate. He was reluctant, and I was insistent. What started as an interview turned into me writing as rapidly as I could! Jeff had powerful feelings on this matter…
Kim: Ok, honey, let’s just start with why did you pick me when you knew I was chronically ill?
Jeff: Everybody comes with something. Whether it’s a weird sexual preference, maybe they like being slapped around? [Kim gasps.] I don’t know! But everyone comes with something. That’s ultimately the truth. When I got you, I thought I knew beforehand what I’d be dealing with, but it was so much more. I made sure I was all in before we said our vows.
Kim: Why do you stay?
Jeff: That’s not the right question. Why don’t THEY stay? What the f*ck is wrong with them? [Jeff is now pacing the room.] You get married and promise to love this person, then you bail? What’s that about?!?!
If you are not growing, as a couple, then what is the point? Obviously, that person stopped maturing. WHY?!?! Did you take the same vows I did? For better or worse. I meant it. I just don’t get it… bailing.
Kim: Alright love, let’s go back. You just found out I had Fibromyalgia Syndrome. What did you think?
Jeff: You were in trouble. Here is my life long friend and you are in deep trouble. I wanted to help you, there was no question. But, was I in love enough with you to marry you? I mean, we loved each other. There is a love between friends, and then there is the passionate love. You’d like both, but you have to separate the two. I was trying to decide if I was going to be your friend or your lover? Did I want to be both?
It’s like seeing a car wreck.
Kim: Now I’m a car wreck?
Jeff: You aren’t the wreck, this is the only way I can think to explain. Hey! You wanted me to answer questions.
Kim: Right, go ahead, I’m sorry I interrupted.
Jeff: It’s like seeing a car wreck and you have to decide to stop and help or not. I am going to stop and help! This is who I am. There is no question, it’s a given.
I made a decision to commit to you, to us. It isn’t about ‘you’ getting this diagnoses. We both got the diagnosis! I was the one who signed up for this! I mean, to come home and sit in your lazy boy because you put in your time at work and do nothing all evening? You do nothing for your spouse? You are in a relationship! This is not OK!
I understand divorce. I do. One partner matured the other didn’t. They didn’t work on it together, they didn’t grow as a unit. It’s like getting your driver’s license. You have to work at it. Are you going to give up because it’s hard or do you want to be able to drive that car? Work at it! Learn it.
I’m not a quitter. Never have been ain’t gonna happen! I may be tempted or dissuaded, but I am not a quitter.
If they thought going into a marriage that it was going to be all rosy I’ve got news for them, it’s not. Does anyone even stop to even conceptualize the reality of spending your life with another person? Where’s the common sense? You’re an idiot!
Kim: Maybe you should be a marriage counselor?
Jeff: It’s like signing a 30-year mortgage, you aren’t getting out in year six when shit starts falling apart in your house. Either you are in, or you are out. Who in their right mind thinks everything is going to stay the same? Really. That’s the question.
Kim: Well, okay then! Thanks for participating in this weeks blog post.
Jeff: I was forced!
Kim: Happy wife, happy life.
Jeff: More should pay attention to such things.
A lifetime doesn’t seem long enough with this man…
(Originally written in 1987. I attended three funerals of relatives in close succession. After the third funeral, I wrote this and burnt my ‘funeral’ dress ~ hoping to stave off any more funerals, I was 18. There, of course, have been many more funerals over the course of 30 plus years. I recently attended two funerals in one week and felt this was fitting to publish. I doubt I will be burning any clothes.)
May is Fibromyalgia Awareness Month (with May 12th being awareness day). Today I thought I’d cover some of the frustrations with fibro. Okay, so the frustrations are potentially limitless, but I thought I’d pick just 5 to explore. Let’s not be greedy now! Perhaps you experience these too, or maybe they will help give an insight into life with this condition.
1. IT’S UNPREDICTABLE.
Plans are made to be broken with fibromyalgia. It’s a different experience for everyone, but you may have some tolerable days, maybe even some good days. You may have unpredictable flares that last anywhere between an hour to several weeks. You may have more unbearable days than you can count. I can’t tell you how I’ll feel in a few hours, let alone tomorrow or whether I’ll be able to follow through on plans for the next week. This can have a knock-on effect on mental health, relationships, friendships, social life (what social life?) and family. Just like with stoma problems and migraines, symptoms of fibromyalgia can be hugely unpredictable; it’s highly impractical, not to mention monumentally frustrating.
2. THERE’S NO CURE.
Okay, so maybe we’ve already given up hope for a magic bullet of a cure, but it’s disheartening to think this situation is ongoing. It’s frustrating not finding things that can help symptoms, or prevent flares. There’s no cure, and there’s very little help for managing things from day to day. It’s hard to accept that when you just want to feel better and reclaim some semblance of the life you used to have, only to find there’s no way to ‘fix’ the problems, only manage the symptoms. I get frustrated feeling like I’m missing something, frustrated when doctors and specialists say it’s ‘all part and parcel of fibromyalgia’ and therefore nothing can be done. We have to advocate for ourselves and keep pushing if we think there’s more to the story, whether that’s another medication we want to try or other diagnoses/deficiencies alongside fibromyalgia that hasn’t been adequately investigated.
3. THE RELENTLESS CHRONIC PAIN & EXHAUSTION.
Exhaustion is overwhelming. It’s bone deep. Those with fibromyalgia and/or ME/CFS will likely know this all too well, that it’s just not being ‘tired’ or worn out. It’s shattered beyond belief. Brain fog and problems with concentration are part of this and are hugely frustrating; I find the inability to think clearly, make decisions, write, focus in general to be some of the most annoying issues, perhaps because I’ve always been more brain-oriented with writing/reading, rather than sports-oriented or hands-on with my interests. In addition to that, chronic pain can be a longtime companion, forever irritating in its relentlessness, bringing you to tears at times, making you question your ability to keep going.
4. ‘BUT YOU DON’T LOOK SICK’.
It’s an invisible illness. For the most part, we probably look fine. On the outside, we’ll put on a smile and try to keep going, showing the world what we want them to see. On the inside, we may be crumbling. It’s hard to be believed sometimes, by those around us or medical professionals. We can also worry too much about what we think others think. I find it incredibly difficult to use a public disabled toilet for this reason; I look fine and others must think I’m just jumping the queue of the normal toilets, rather than that I need this one because I have a stoma. I’ll be the first to give up my seat to someone else on the bus, and that’s expected as I look ‘fine’, and I won’t ask anyone else for a seat when it’s busy even if I’m in agony and about ready to fall over. It can be a very isolating experience.
5. I FEEL GUILTY.
I feel guilty for so many parts of this experience. For not doing enough, for not achieving anything with my life. I feel guilty for losing my job due to stoma surgeries and that fibromyalgia changed the playing field once again to keep me out of work. I feel guilty not knowing where to go from here with money/jobs/career. I feel guilty for days when I just get by. I feel guilty for feeling frustrated or miserable about it when I know others have things much worse. I feel guilty for times when I smile.
The butterfly – The symbol representing fibromyalgia.
I planned on doing Fibromyalgia Awareness posts all this month, every Wednesday. It was a sound plan. Then my parent’s neighbor died, she was very ill. This was expected but when it happened it was still sad. About two days later… my uncle died. He, too, was very ill. In fact, he was in hospice care, his kidneys were shutting down and he opted not to receive treatment. He passed very quickly after that.
I had been planning to take a week and spend it at our family lake home. It was all planned. My health had been questionable for some time and I was hoping a change of pace would help me over the last hurdle. However, two funerals in one week were not planned.
How was I going to get through these funerals?
Would I get through these funerals?
How was I going to be of any use to my parents, who are elderly, during this week?
Would I be able to follow through or fail again on my plans?
When you have fibromyalgia you don’t get better. You never get better. Fibromyalgia is a chronic syndrome. We say illness or disease but it really is neither. Fibromyalgia is a syndrome because it has many contributing coexisting conditions. These coexisting conditions tend to be progressive, worsening over time. But fibromyalgia itself is not a progressive ‘illness.’ (I am not the ‘syndrome’ word police!) This progression of symptoms is very confusing to those of us with fibromyalgia. For the rest of you, it must seem like a damn soap opera!
[Scene: Betty and Jan are talking about their friend Laurie; camera pans to Betty.]
Betty: Then Laurie said she had Fibromyalgia Syndrome and Chronic Fatigue Syndrome. But now she calls the Chronic Fatigue Syndrome some weird word; mya-lgic- encepha-something?
Jan: Myalgic Encephalomyelitis.
Betty: Which is it!?!? And what does THAT word even mean? I swear she made that up! AND Laurie says she has depression, migraines, restless legs syndrome, and [whispering] bathroom problems … how can one person have that much wrong with them?
Jan: I know! Like, go get it fixed already!
Betty: At least pick one thing. Jeeze!
[Betty and Jan roll their eyes and sigh, end scene.]
The truth is, WE DO have that much wrong with us and many times much more! Take a peek at this sweet little list of possible coexisting conditions!
So, how did I handle my week at our family lake home? I attended everything that was planned. I rested when I could for as long as I could. I wore my therapy belt and snacked on protein-rich foods. I did my fibro exercises. Basically, I went ‘old school.’ I treated my body just as I had right after I was diagnosed with Fibromyalgia. I was very aware of every ounce of energy I spent and was meticulous with my medication. I called my husband frequently. I continued to check in with my tribe for support and received it with a grateful heart. I made sure I was mindful every day of the beauty around me …