I Just Might Break

Today I am beginning this post with the hope of answering my own question. I believe I am struggling with coping. I don’t know if it is the heat? The barometer? My medication? Or is it the overwhelming feeling of dread waiting for my body to flare once again. It is basically a fact with fibromyalgia. I know to expect it. I have put together a fibromyalgia toolkit with the items I need to combat a flare. But. I am questioning will this be the last flare I can handle?

I’m tired of feeling almost normal for days then being knocked down by a flare. I’m tired of feeling the increased pain followed by painsomnia. Yes, painsomnia is real. The pain is so excruciating that you can not sleep. All you want when you are in pain is to sleep and find some peace in that slumber. When painsomnia hits, you will not be sleeping. Your flare symptoms will increase even more and will remain with you a few extra days. Why? Sleep heals us, no sleep exacerbates the pain.

I think my body will not give up because it has been beaten down by worse things in this world. I am wondering if mentally I just might break? Fibromyalgia is the gift that keeps on giving. The cruelest part of fibromyalgia is that it is a trickster. You fight through the first few years of this disease in constant high levels of pain, basically flaring non-stop, but you can sleep. In fact, that is about all you can do until your body realizes this is no virus you are fighting but a lifelong central nervous system disorder. Then you get a chance at a few, low-pain, ‘normal’ days.

Mentally, this disease works you over. It makes you think before every action and react to every situation. If I do ‘A,’ then ‘B’ will happen, probably. If I do ‘A’ and ‘B’ doesn’t happen, I may try to do ‘A’ again. This time ‘A’ causes ‘B,’ and you flare without really understanding why it didn’t cause that reaction before. This disease toys with you as a cat toys with a mouse. Soon, if you aren’t careful, you begin to play dead all the time in an attempt to escape the pain.  (It works for the mouse at times.)

Try to imagine the worst pain you’ve ever felt. You are given pain relievers to combat the painful incident. Then it stops… you are active again, feeling good, going to social events then the pain comes back. Now, imagine this horrific pain happens to you every month. Now times that by three ‘episodes of pain’ in one month. Each flare lasting anywhere from 1 to 3 days, up to a week or more. How many good days will you have in one month? (None of them will be pain-free, you lost that privilege once you were diagnosed with fibromyalgia.) A few good days, you may even have many more good days than bad. But that flare is always coming!

I consider myself pretty resourceful and very resilient. I have had fibromyalgia for over 20 years. I prepare and plan my strategy going into and coming out of every flare. But I am feeling less prepared this month. Less confident in my abilities. 

So, when does one break?

Screen Shot 2018-02-25 at 12.48.43 PMKim

 

 

36 comments

  1. Kim, i dont know about fibromyalgia at all so i wont comment in relation to that. But will comment on when does one break… clearly i dont know you that well, other than your blog. You come across as tough cookie… therefore i say to , you wont break ever..but you might have a blip and then recover from the blip a bit stronger than before. If that makes sense.

    Ps i am toying with doing a june mediation series on my blog … so incase you are interested watch out.. i know june is a day away and i am still figuring out what i want to do..

    Hugs to you…it is just a blip you are strong enough and you will be fine.

    Liked by 2 people

  2. I empathize greatly! It’s exhausting to have to continually assess one’s day-to-day living, essential tasks, and fun. Will this cause me a flare? Will this sap all my energy? Am I feeling up to doing this thing? Do I have (toolkit item(s)) with me? And am I going to be near a (bathroom, place to sit, etc.)? The mental energy that goes into managing our health is taxing. It’s not just a matter of “Do I have the energy for this,” but also “Do I have both the physical and mental stamina?” I find I have to take as many mental breaks as I do physical ones. And I’ve had days where I’ve gotten so close to the breaking point, it happens, and I don’t guilt myself for it. You’ll never hear from me that you shouldn’t feel this way, or be concerned about where your breaking point is. We all have one. I’m hopeful that you’ll have more good days than bad.

    Liked by 5 people

    1. I appreciate that! Yes, we all do have our breaking point… I’m just trying to steer the car that is going 100 MPH right now… It is exhausting. Mental breaks are what I require more of. Pardon the pun. Being purposeful in that must also be in our playbook. I will add that in! Thank you. Very kind of you! ~Kim

      Liked by 3 people

  3. Kim, I definitely know where you’re coming from…. Just the other day I said to my husband, “You must think I’m doing a lot better than I’m feeling.” You’re so right that you just never know when a flare will hit, and for me, the worst times are when I’ve had that long stretch of “good” days you were talking about, when I start to almost forget I have fibromyalgia, and then a flare hits. I’m just learning to take one day at a time, and remind myself when the flares hit that they will end and life will go on. I know it’s mentally exhausting, but I also know that you are a strong woman and you’ll get through this. As Ms. Jynx said, I won’t ever say “you shouldn’t feel this way, or be concerned about where your breaking point is.” I would guess that we’ve all been in the very same place. Just know that you’re not alone!

    Liked by 2 people

    1. Terri, you and Ms. Jynx are right, we’ve all been there. It is almost as exhausting preparing for the inevitable as it is just going through it. I keep saying I can do this ONE more time… but there never is just one more time… we all know that though and we just learn to deal with it, some days are better than others. Thanks, Terri!

      Liked by 2 people

  4. This really reasonated wi me Kim. It’s the waiting and wondering that that is the hardest thing to deal with sometimes. Waiting for the next flare to hit and wondering if this will be the one that breaks you. Speaking for myself, I don’t think that will actually happen, but I am not naive enough to believe it isn’t a possibility

    Liked by 4 people

    1. I don’t think it will break me… I always wonder in the back of my mind if it will, though. It is definitely the ‘not knowing’ that is the toughest part of chronic illness, I think. What is the progression and how fast will it take away things I can do? But we’d all be a wreck if that’s what we thought about all day long I guess. Thanks, Steve.

      Liked by 4 people

      1. I think that niggle of doubt is natural and a sign you’re a living, breathing human being. To not wonder, to not be knocked off kilter by the not knowing part of chronic illness, would be odd, I think. xx

        Liked by 2 people

  5. I wish that I had come great advice, but I don’t. I do know how exhausting the waiting can be, the constant vigilance and the need to be prepared but not always knowing what that looks like. All I can tell you is that I am sending love your way, Beautiful Lady, and that it is ok to break sometimes, to feel like you just can’t take anymore, to allow yourself to let go of the vigilance for a few seconds. You are surviving so magnificently Kim and I believe you always will, but it sucks that you have to go through this and I am truly sorry.

    Liked by 4 people

    1. Thank you, Susan. That was what I needed. Just knowing people are around, supporting me and pulling for me. I don’t get to share this stuff with anyone but my hubby and my blogging community. I’m glad I write this post this AM. I needed to hear other’s voices about this. xo

      Liked by 2 people

  6. I think…we break and then put ourselves slowly back together. It’s an endless battle, that’s the truth of it, Kim. And damn it, it really sucks. Never forget that you’re a warrior even if you’re feeling overwhelmed…and that you have many people who love you and give a shit. (Including me.) ❤

    Liked by 3 people

  7. I wish I could offer some amazing piece of advice or information here, but I can’t and for that reason I feel so incredibly helpless. I will say that I think you can still break emotionally and repair yourself, but it takes time. I say this because I feel like I’ve broken numerous times and on many occasions I’ve wondered whether mentally, physically, emotionally I would get back up. I did. For better or for worse, I kept on going. Fibromyalgia has been such a challenge for me because of the frustration and inability to let myself be okay with not being okay. Insomnia gets painful, so you get my heartfelt empathy there. I also think, however, that a combination of this circumstances, increased pain, flaring, lack of sleep, can all impact your confidence.

    And that’s okay. You can doubt your abilities, for now. We believe in you. I believe in you. I know you have the ability to survive this just as you have before for so many years. Sending all my love and hugs your way. You are a tough cookie, Kim. And you’re not ready to break beyond repair any time soon ♥

    Caz xx

    Liked by 2 people

    1. Caz, you are just an absolute delight! For someone who doesn’t think she has advice for me, you are wrong! That was and is great advice. Even I need permission at times to feel insecure. I fight to have the answers… but there are days when the fight is just to get out of bed and face the day. I need a little repair once in a while. I don’t think there are days when I can, but then I get so many wonderful people conversing with me. What a community! Thanks, Caz. Always. xo

      Liked by 3 people

  8. Kim, I do not know how much I can compare MS to fibromyalgia, but I think without a doubt the heat and crazy humidity can cause so many issues. My pain has drastically increased over the past few days. I strongly believe the increased issues is from the constant rain, hot temperatures and horrible humidity that is caused from those things! I know a little about fibromyaligia, so maybe it is the heat and humidity causing your issues to show themselves. I know it isn’t easy to not stress about a possible flare, but I really hope things get better for you soon before anything bad occurs. Our bodies sense when we are stressed and almost retaliates against us.
    You are like me with writing about something that bothers us and finding an answer to our own question in the process! I am sending you LOTS of positive vibes and best wishes!!!

    Liked by 2 people

    1. Thanks Alyssa. I have been in stress mode and I think, what if I flair on top of this??? What would I do. Yep. Started to flare late this afternoon. I’m in it to win it again. Temperature changes definitely affect my disease. I did get a lot of responses that really helped me out. xo

      Liked by 2 people

      1. I am so sorry you are going through this, but I know you will beat this flair because you are amazing!! I totally understand the stress mode, I live in it and it never helps, but you already know how much worse it makes things. I really hope you get some rest and start feeling better! xox

        Liked by 2 people

  9. Hi Kim;
    I don’t believe that we break until we are dead. We will bend and definitely creek, but everyday when we wake up and put one painful foot in front of the other we win! I know the pain and feelings of uselessness can be extremely overwhelming, you though are one very strong determined and educated woman, trust yourself to know what is right for you and even if your bent you’ll still continue on.

    Liked by 1 person

  10. You have told me before, “so what if it drops”…meaning the other shoe…. You are prepared, you are incredibly strong and even if it doesn’t feel like it, you ARE stronger every day. Not only are you fighting fibro, but you are supporting a whole blogging tribe and a support group…. Put your oxygen mask on FIRST….. google the dangers of being in a constant fight or flight mode when you have the time…. I know its easy to say relax…..but please try to give yourself a break before your body demands it of you

    Liked by 2 people

  11. First, I agree with every sentiment from this amazing support group and tribe of yours! It’s okay to falter; it’s okay to wonder; it’s okay, even, to break sometimes. Just be prepared to get back up! The world (clearly!) needs Kim!

    Second, forgive my ignorance, but I know so little about what you face. Is there NOTHING in the mighty miracle world of medicine that can help one combat painsomnia?! I mean, sleep helps, like you said, maybe to curtail the thing a few days earlier. What a Kim needs on a night like that is a clean knockout!

    But … what if such a thing does not exist, Tom wonders? 🤔

    Even so, hang in there, my friend. As hard as hard gets, you have us, your posse, firing bullets at the enemy of doubt and pulling nets to break the fall. Appreciate you, sister! ❤️

    Liked by 1 person

    1. Hello Tom. Just so you know I think of you as a fellow tribesman. I do get amazing support from my tribe! Yes, I do have little yellow pills for sleep and when it’s really bad I take an additional 2 white helpers! I get a good four solid hours but then I start all over again. But the addition has been a godsend. I appreciate my waring posse and I know my doubt will be dashed! I appreciate the back up! Thanks Tom! I appreciate you too!

      Liked by 1 person

    1. Weather is so tumultuous. It affects our symptoms like no other. One thing I’ve learned from the comments are to take mental health breaks. I’ve never done that before. But it sounds like they could be as important as taking breaks to rest after activities. So I’m really going to try. You should join me?

      Liked by 1 person

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