I Feel My Disease (the rough days)

The syndrome that is fibromyalgia is complicated. I research, try different ‘treatments’ and hope for the best… it never comes. The Best. I cannot find it. I feel my disease. My body reminds me with every step, reach, and stumble. Disease. Painful disease.

I am angry right now. If it were not for the anger, I’d be a puddle, on the floor sobbing. I am angry at this disease today. It is not to be ‘noticed’ by an onlooker and keeps me from doing most things I love. Worse, is not being believed therefore estranged. Left mostly alone, with my disease.

My chest hurts. Sometimes I think it is because my heart is breaking. It keeps beating. My heart isn’t breaking but with each beat, pain. Silence is too loud. Is my disease getting stronger? So I find angry again and convince myself not to feel the pain or my heart. I turn up the music to escape the silence.

I have these days when the disease wins, and that is just the way it is. It may have a day, maybe two, sometimes more but eventually, I leave anger and fight the disease back in its box. I return to the now. I search, hoping again for The Best. Stepping carefully, reaching tentatively, facing pain still. Reading. Writing. Trying. I feel my disease.

The syndrome that is fibromyalgia is complicated.

 

 

 

Better days are coming I say to myself, imperfect is fine because I understand that lie.

 

 

 

 

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Some days are difficult, you must rest, and get back up! ~Kim

23 comments

  1. Oh Kim, I am so sorry you are struggling and in a rough patch. The other side of this is waiting for you, within reach. Take care of you and do whatever you need to get through this. Bojana is so right, “It’s your beautiful life” . You are amazing!

    Liked by 3 people

  2. Hey Kim,

    I know that today is one of those rough days for you but I also know you are strong enough to survive yet another fight with you disease. You are strong woman who is kind and loving. You are great wife. And a great human. You are always in my prayers and thoughts.

    I hope your day gets better soon.

    Warm regards,
    Dee Kay

    Liked by 1 person

  3. I read this 15 minutes ago & wanted to reply, but I didn’t know what to say. I feel like I need to cry – really cry, the snotty, ugly sort of crying – and I’m so sorry you’re struggling so much right now too. I think that anger is a good thing though; without it, as you said, you could end up being a puddle on the floor, and instead it can spur us on, fire our bellies when we’re otherwise exhausted. Feeling like a fraud, when others can’t see the problem, is such a hard thing to deal with. And yes, there are days we just need to give in a little, rest, feel the weight of the awfulness. Please know you’re not alone, and that I believe everything you are going through. Sending gentle hugs your way Kim xx
    Caz

    Liked by 3 people

  4. My dearest Kim…I did cry the snotty, ugly kind and I want to thank you for sharing your beautiful soul with the rest of us. This disease is a thief laying in wait to take yet even more, but together we can be stronger than the sum of its core. I need you desperately in my life. Your words help me know and understand and believe I can get through this. You are such a sweet, loving, kind soul. Rest beautiful lady, and know you are not alone. Although we haven’t met face-to-face you are like family to me. My Fibro family that keeps me alive. Thank you!
    ~Tamara

    Liked by 2 people

    1. I’m not going anywhere dear Tamara! I think in order to be honest with everyone, you need to know this darn disease gets to me too. I have bad stints. And days when I resort to the snotty cry too… it’s ugly! I am getting through this flare! We all have them, even me. I just needed to write this out, because I will get through it and others can too… we can all get through the hard times. We’ve all been there. And everyone who comments gets me a one step closer to beating this flare. It helps so much! You are a dear and so kind, thank-you! ~Kim

      Liked by 1 person

  5. Kim,
    From a fellow FM sufferer, sending you gentle hugs & yes we know this cycle will end. I like your anger! You’re allowed….its the pits!!! Go girl!! Have a snotty, puffy eye sob too!

    I get stubborn!!! It’s not going to beat me!!! These demanding unwelcome nasty little tenants!!! They will not win!! While I’m being kind to myself…I know that sounds contradictory in terms but it works for me 🙂

    I recently found mine has a genetic component to it…I am HLA B27 positive which has been activated through the traumas of my life. My mother is also (who also has an Autoimmune disease) & my eldest daughter (who was recently diagnosed with FM 😦 ). While the main links to HLA B27+ is Ankolysing Spondylitis & Iriditous (I don’t have either of these), some studies have shown that FM has a high link to the HLA B27+. This actually helped me to have this knowledge, as I had a causal link… so I have been able to structure my self management in pain, emotions & mental challenges around this knowledge.

    I find stress is definitely a trigger & any major weather change impacts the level of the pain. Over doing it on the better days too. What have you found are your triggers Kim?
    Gentle hug,
    Jennifer

    Liked by 2 people

    1. Hello Jennifer! I’m a little over 20 years into this, but those triggers… uffda! Weather, social events, holidays, family events… (high anxiety levels)… but sometimes, it just shows up, HELLO! So, I will get through… AGAIN!

      Very interesting to hear your story! My catalyst was a car accident. But finding the actual markers must be helpful. Thanks for sharing that information. You have been dealing with this for a long time as well! Since childhood, I’d imagine. So sorry. Best wishes for your daughter. Ah, so hard on the young. Never fair. ~Kim

      Liked by 1 person

    1. Thank you, Kim! Yes, this was a tough nut. The weather in Minneapolis has been -30’s with windchill. But I am pretty much through it and back to my ‘normal’… still all the lovely ailments that come with the disease but manageable again. Thank you for the kind words! They help!~Kim

      Liked by 2 people

  6. I am one of those people that admires someone that doesn’t always put on a happy face. (not that you don’t try and being positive is important), but for me it helps to see and hear about the bad days too because they are relate-able. I’m in a support group for tysabri (ms drug) and people post pics of themselves getting the infusion looking dressed to the 9s etc, and if that is how they truly feel when they get the drug great, but for me it kicks my ass. One month I posted a picture of how I really look and feel along with a comment that I am greatful that although THAT day was going to be a bad one for me I was optimistic that tomorrow would be better. For me that was honest

    Liked by 1 person

    1. Thank you for this comment. I do try to be positive, heck, I’ve had this darn disease for 20 years… I should be able to handle it by now. The point is there are ALWAYS times when this disease kicks your butt and you get damn tired. I do. And I think it’s important (as people contact me when they are in crisis or to share supportive chats) to be able to say, yep, still happens to me. There just is no magic pill that works for all… The truth is, it doesn’t get better, you get better AT it. Most days. Somedays not so much.

      Liked by 1 person

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