So I sometimes have others who are struggling to stay afloat with fibromyalgia reaching out to me on social media, feeling pretty hopeless (understandably!), and I’ve tried to write blog posts to reach out to them. Actually EVERY post is written to reach out to them, to give helpful insight and tips born from experience, while also trying to help boost one’s mental state…some posts are even solely geared at having HOPE.
Fibromyalgia is a tough battle, a daily onslaught of physical and mental challenges. And it’s complicated.
It’s vicious cycle after vicious cycle…that’s what makes it so difficult to manage.
And I can’t even come close to conveying all that I could tell them, going on nineteen years trial and error experience with this battle, in a tweet or two, or really, in any social media message. But when I try to direct people to my blog posts, I’m sure they feel like, oh she just wants me to read her blog.
So yeah! I do want you to read my blog!
So let me explain.
I do want you to read my blog. And please use it. And here’s why and how to use it.
An analogy came to me this morning. Maybe corny, but it really feels like it fits. If you’re feeling alone and hopeless and unable to navigate this fibromyalgia journey on your own…I’ve found a life raft…stumbled upon a life raft really…and I’m balancing on it out here and I’m hoping to share it with anyone else who needs to come aboard.
I’m trying to offer my life raft to YOU. (I picture it kind of like the homemade raft that Tom Hanks’ character finally paddles off the island on, in the movie “Castaway”.)
So yes, fibromyalgia is incredibly tough but I’m doing alright…I’m standing on my raft, up here balancing, staying afloat. And I’m reaching out to you (in the water), but you’ve got to grab on and help hoist yourself up to join me. Because I’m balancing fine on my own but if I reach too far, I may just be pulled off balance and fall in with you. (Managing fibromyalgia is an incredibly delicate balance!) Oh, I’m sure I could hoist myself up again, but I’ve done that too many times before (fallen and hoisted myself up) and I know how NOT to do that now. I need to keep a fair amount of my focus on my own balancing.
So I’ll reach and provide the raft, the tool, my blog, but you have to hoist yourself and get on the raft (and read) and learn to balance up here with me.
And I’m not alone on this raft anymore. I’ve already got company, others who are using my blog, reading it often, and we chat up here and get through our journey together. Some are pretty vocal and I know they’re always here…and we’re supporting each other. Others have silently crawled on by themselves and are quiet, until once in awhile they pipe up and let me know they’re on board…they’re reading and benefitting from my blog.
And it doesn’t matter to me if you want to chat or not (we don’t need to, but I’m happy to)…but COME ABOARD!! My hand is here, reaching out.
Grab it.
And start reading. Every post is filled with TIPS and HOPE…that’s it in a nutshell. Tips to help you navigate this fibromyalgia journey and hope to keep you afloat. Yes, hope is in every post because, well, first of all, I do believe there’s SO much to be hopeful for! And second, well, that’s maybe the toughest part of battling the ever-changing onslaught of scary symptoms, pain, and overwhelming fatigue that is fibromyalgia, keeping ourselves afloat mentally, not losing hope…so we can wake up each day with the courage to face another day of trying to function in our fibromyalgia lives.
So I’ve found, having fibromyalgia, I have to seek out hope…and cultivate it…and nourish it…truthfully, with fibromyalgia I find hope has to be fed pretty often(!) and personally I’m aiming to thrive, so I’m feeding and building my hope in some way EVERY day…because I want to be functional EVERY day.
And I’ve included everything I can possibly think of that has helped me to be functional for close to two decades now while living with fibromyalgia…every tip, every insight, every strategy.
Because I’ve found that significant lasting progress has come from the compilation of all these tips and strategies and adjustments gradually chipping away at it over time.
What may be helpful, what may not, how to think…the posts include it all…tips on how to live with it, how I’ve lived with it specifically, tips that I think could apply to others. It’s the experience of nineteen years of coping and functioning and (still actually) LIVING with it, talking.
You are not alone. I know what you’re going through. All of us with fibromyalgia, and there are many of us(!), know what you’re going through.
So grab onto the hand that is reaching out to you and TAKE IT. OPEN YOUR MIND and READ. Find what resonates with you…everything may not…but something will! And hold onto that and let it help you get through another day. Then read some more and find another tip or strategy or little gem that resonates with you, that perhaps triggers hope, and use that to get through another day. Tie your hope to something…anything…anything positive…until you feel strong enough for your hope to be solidly anchored within you.
If the posts are too long, read parts, even paragraphs, treat it like a book and just read bits at a time, read when and what you want, and then come back to it whenever you can. Do some of it, do all of it…whatever you feel fits for you.
Am I an expert? No, of course not, and I’ll be the first to admit that. But I do try to provide a path to experts; that’s why I include my occasional “book share” posts, summarized on my RESOURCES page. I seek out experts on topics I feel would be super helpful for someone with fibromyalgia and I write a post highlighting why I believe their expertise would be useful to us.
As for myself, I’m simply writing from experience. And sure, I bring my own life circumstances to it, and my lifelong baggage, who doesn’t? But that’s where your part comes in, to read and see what tips may apply to you.
You may not agree with everything I say and we don’t have to be tackling fibromyalgia in the same way…exercise/don’t exercise, meds/no meds, healthy diet/or not, other chronic illnesses/no other chronic illnesses, etc. etc. Fibromyalgia is a complicated condition with many facets to it, and I understand people are trying all sorts of treatments, but no matter what we are doing different, I have to think we have far more in common than not. Too often these days people let their differences divide them, whereas differences are actually more likely a strength; differences bring different points of view and when combined, a stronger, wiser, overall perspective.
So yes, even though people feel we may be having different fibromyalgia experiences and coming to the table with different baggage and even other chronic illnesses in tow, I strongly believe we are fighting the same overall battle.
My hope is that individuals use what they can from my blog to further their own battle, that they PICK OUT WHAT CAN APPLY to benefit their own situation.
And on the topic of other chronic illnesses, occasionally another fibromyalgia person will tell me they are different than me, they have one or more other chronic illnesses as well as fibromyalgia, and it sometimes seems they are implying my experience doesn’t apply to them and is of no use to them.
I definitely feel for them, that does further complicate (to say the least!) an already complicated illness. My other debilitating chronic illness is far in the past and while I currently have my own personal conditions I deal with that impact my fibromyalgia, I can only imagine how much more difficult it must be to be dealing with multiple debilitating chronic illnesses at once.
But what I would say to them is that my blog could present an especially useful opportunity to them in a way maybe they hadn’t considered.
Having multiple chronic illnesses, I may be wrong, but I would think one would have a hard time distinguishing which illness is causing what (hell, it’s incredibly difficult to figure it out with fibromyalgia alone!). Maybe it doesn’t matter…but then again, maybe my blog could highlight the fibromyalgia aspects for them, including some possible ways to tackle these aspects, which could help them immensely to have one illness a little more under control and not impacting the other illness(es) as much and hopefully help to mitigate what I would think would be vicious cycles between the multiple illnesses. Something to think about for them but I definitely take my hat off to them and bow to their thoughts on the subject!
But I have to admit I still hope they join others and read…and catch my enthusiasm, my attitude, my motivation. I mean, enthusiasm is contagious, energy is contagious, positiveness is contagious, a fighting spirit is contagious…I write to spread all of these in the hope that you will catch them all!
And reread. I have a little book that helps me keep my spirits up and I read a little every night…and I’ve been reading the same book over and over again now for a couple of years. The lift it gives me never gets old. I don’t want to read all these little life gems and tips and strategies and forget them in a week. No, I’m rereading them and internalizing them…I’m keeping them at the forefront of my mind and using them to keep myself afloat. And once in awhile, one of those little gems or tips or strategies will especially resonate with me in a whole new way maybe due to whatever’s happening in my life that day, or perhaps I’ve had a great night’s sleep and feel more open minded, and that kickstarts a whole new life for me!
And this is what I hope my blog can be for you.
And I know it works; I’m hearing from people telling me it works. They use my blog in this way.
And speaking of hearing from people, which brings me back to my analogy…sometimes I hear from people and I can tell they’re on neighbouring rafts, they’re over there balancing on their own raft…and they shout out to me and we exchange a few words and knowing nods of acknowledgement of our fight and our spirit and our determination.
And some of you will undoubtedly be watching and waiting for that big rescue ship to come (a cure!) and who knows? Maybe it’s coming, someday…but me, in the meantime, I’m not only staying afloat, I’ve seen a few familiar markers again (some key improvements in my functionality that I had thought were long gone) and I’ve gradually realized that, all this time I’ve just been trying to stay afloat, I’ve actually been moving towards shore on my own power…slowly…but surely, yes I’m moving!
The original plan was just to stay afloat and of course that’s always key, but some time ago I was rather shocked to realize I had been very gradually experiencing good solid lasting improvement in my fibromyalgia…possibly even a recovery of sorts.
(But of course, time will tell on that. I’m happy just to keep floating and functioning and living!)
So yeah, to stay with my corny analogy, I’m not waiting for the ship (that may never come)…I’m moving towards shore on my own power!
Yes, I’m on my way to shore.
And whichever you lean towards, waiting or powering your way to shore, you’re welcome to come on board, come stay afloat with me.
Yes, join me. JOIN US.
Get on a raft, get up here, we’ll help you balance. Just reach out. Do this with us.
Come aboard, there’s no need for you to be down there alone.
I’m right here waiting for you. (WE’RE right here.) Functioning and living my life. Join me.
Because what I know is real is that only you can take my hand and pull yourself up.
Only YOU can ACCEPT the support, only YOU can OPEN your mind, only YOU can DECIDE to work on changes, only YOU can CHOOSE to be proactive.
Only YOU can CHOOSE HOPE.
So yeah, come aboard.
(And please…read my blog.)
