No, this is not a medical post. This is a personal perspective…so maybe if you know someone with Fibromyalgia, you’ll have a little insight into what it’s like. Why? Several years ago, I was diagnosed with ADHD and there was an article about Post it notes and doorknobs – and it was such a great explanation of what it feels like…So, here’s my Fibro version of that…it won’t be as elegant…or pleasant…or amusing…but I’ll make a go of it…
fi·bro·my·al·gia/ˌfībrōmīˈalj(ē)ə/Learn to pronouncenounnoun: fibromyalgia
- a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.
Last summer, a dear friend was on her way to a local pool with her four children. It wasn’t uncommon for her to call or text us on the way and say, “Hey! Come swim with us!” That one day that I recall so vividly because it was so obvious that she had literally no idea why simple things were so hard…Which I loved…it was always fun, and the sunshine and water are so healing…but that particular day…it felt like she asked me to pack up my entire house and move across country…today…daunting would be an understatement. “What’s hard? Put on a swimsuit and grab a towel?!” Not that simple. It wasn’t happening…
I was having what we call a ‘Flare Day’. What does that mean? Different things for different people…for me, at that particular time…think of basically having a bad case of the flu without the fever, chills and cough…and there is really nothing that can stop it. Nothing but rest, and TIME.
A lot of rest. A lot of time. It might mean a few hours, it might mean a week.
So, here are a few things I can share that you might not know. And might help you be a good friend to your person…
- The ‘flu’ can strike at any time.
- If you’re exposed to the actual flu, you’re never quite sure if you actually have the flu, or just a bad day…because it basically feels like the flu. Did I say that already?
- We can ‘manage’ the ‘flu’, to a point…but that means saying “no” to MANY things…so we can say “yes” to one thing.
- A bathroom should always be close by…secondary, and not an issue for all…
- Brain fog is real…
- Words just aren’t there…if I’m struggling to come up with the word, it’s OK to help me finish the sentence.
- I literally might FORGET something EXTREMELY important. Alexa & Siri are my best friends.
- If I’m late, I promise I tried…I don’t like being late. It makes things worse…but I’m still adjusting to this reality.
- I didn’t mean to forget your birthday…or whatever other special thing…it’s not because I don’t care…I just literally don’t have the capacity for all of the things all of the time.
- Every movement is contemplated. Will it hurt? Will it help? Will it be too much? Can I actually even do it?
- Every bite of food and drink of liquid is contemplated. Is this my friend or foe? Is it worth the aftermath? Is it even an issue? How bad do I want it? If I don’t want it, is it important enough that I REALLY have to eat/drink it?
- Medication and supplements are not ‘optional’. I prefer an integrative approach to wellness. That means some medications, and a lot of supplements…and a lot of intentional physical & mental activity, and lack there of at times. All of these things are important to my well being, and my being a FUNCTIONAL and useful member of society.
- Showering and getting dressed, some days, is basically like running a marathon. A short one…but still…Have I ever run a marathon? No. Because I don’t like it running. I tried it, back in my non fibro days. And let me tell you, those you that do it, are AMAZING!
- Too many things in one week WILL destroy me. I will reschedule or cancel…
- Naps are sometimes not optional….Remember staying up all night to study, and then still not sleeping much for a couple of days? yea, basically, 10-12 hours of sleep daily is necessary at this point…and I still nap. So, do the math…that’s not many productive hours left in the day. Forgive me if I drop a few of the balls I’m juggling. I literally slept through a visit to my father on Father’s Day. The good news? He understood and didn’t judge or get his feelings hurt.
Here are few things that, personally, drive me BONKERS…
- I’m at a basketball game (2 of my 3 children play). Some days the bouncing of the balls are like Chinese tap torture.
- Also at a basketball game: use the stairs, not the seats, to walk up and down the bleachers. And there is no need to pounce. Just walk. It hurts. I mean really, physically hurts…and makes it near impossible to focus on the team, the game, or even my child.
- Fidgeting. Yep. That coming from a person with ADHD. I get it. People fidget. I fidget. Well I used to. Now, it’s all happening in my head. Fidgeting, also, is like Chinese tap torture. Some days, even your shifting on the couch beside me…is like you just pushed me off a tall tall ladder onto the floor…and the pain radiates…
- Staring at me with pity or a smile, like it’s cute, when I’m struggling to walk up the stairs or a slight slope. It’s not cute. And I don’t need your pity. If there’s a remote possibility of my losing my balance, take my hand, or put your strong healthy arm under my elbow, or around my back to steady me. If I’m about to sit, clear my path. Make sure I have room to sit. It won’t be graceful.
- Not having a clear path. Having to move around 4 people or things to walk in a straight line. I know, you and whatever you are doing matter, too. I assure you, I do my best to stay out of the way of your productivity if I can’t help you. But, if you can, just take a step out of the way. It takes more energy and focus than I ever even knew possible to forge a new path. Because, remember? I just basically ran a marathon to shower and get dressed.
- Settling in and having to get up…again…I promise I’m not lazy…but if I ask you to hand me something…or don’t offer to get up and refill your drink…it’s because I’d rather expend that energy on YOU rather than your drink…or grabbing that paper, or pen, or blanket…or water…or whatever….
- Offering solutions…or trying to sell me something…I promise, I’ve read and heard about them all…there are many things that I am trying and utilize that are amazing, and many that did not help…for now, I’m making progress in my own baby step, slow pace way. And I have a couple of people that know exactly what those steps are. Most people don’t, and that is OK…I don’t really want to talk about it all the time…because guess what? The goal is for life to be as normal as possible for as much of the time as possible.
Ok, that’s all I’ve got…I hope you find it helpful. The big question is this…is this fixable? Is there an end to it? For some people, maybe. For some people, No. There are so many different options for relief…everyone has their own journey, and some things work for some people, that don’t work for everyone else. In my personal experience, and interactions with others dealing with fibromyalgia…the one common factor is that REST is critical. Please remember that your loved one is tired…pretty much all of the time. The pain, the brain fog, the energy levels, the ability to function…this will vary SO GREATLY from person to person. They are on a long, long journey…be kind, be understanding…if they ask you to help with something, please do it if you are able…and be gracious about it…asking for that help is sometimes harder than living with the pain and doing it yourself…but we have to find that balance…
Thanks for humoring me through this rambling…feel free to share with your friends. If you have a loved one with fibromyalgia, let me know in the comments if this was insightful…If you are a fellow #fibrowarrior, please let me know if you can relate and if there is anything I might need to add here. I’d love to hear your story.
Much Love, and many blessings,
A link to the ADHD article that I mentioned above:
My favorite place for treatment: The Vanderbilt Osher Center for Integrative Medicine