Have you ever tried really, really, really hard – and repeatedly – to make yourself feel better, but nothing seems to work? And no matter what you do, or how you do it, you just keep on getting sick, and you just keep on getting sicker, and you keep having flare ups, and you keep having even more flare ups. And some of those flare ups are really, really, scary. And some of those flare ups are really, really painful.
And because there’s nothing you can do to prevent those flare ups, thanks to extensive autoimmune issues, and because there’s nothing you can do to prevent from getting sick, you start to feel really, really, frustrated. And that frustration turns into anger. And that anger turns into rage. And that rage leads to a very dark depression. And that kind of depression makes you withdraw from the world. And then you feel really, really lonely.
And even though your family and friends are totally super supportive, and they want to be there for you – except that you don’t really want to socialize, because all you have to talk about are your medical problems, and side effects from medications, and the cost of prescriptions, or how many doctor appointments you have in one week. And that makes for some pretty lousy conversation, especially when you’re not 85 years old.
But what REALLY makes you THE MOST MAD is when you cook a special meal for your family, and you don’t eat any of it, not even ONE BITE, specifically to AVOID any kind of allergic reaction or flare up – only to wake up the next morning with a fat, swollen, puffy lip ANYWAY. So when people ask questions like, “What did you eat?” basically insinuating you caused your own flare up, that just makes you want to stab them, in the throat, with unsharpened rusty scissors.
And you’re terrified – every single day – riddled with anxiety, because you never know what’s going to set off the next attack, or how bad the next attack will be, or how long the next attack will last, or who will be available to drive you to the Emergency Room when the next attack becomes life threatening. So you walk around in a perpetual state of panic. And distress. And worry. And misery.
And you’re exhausted, simply from being trying to ‘positive’ for everyone else, all of the time. And you’re sick of of these rules and restrictions affecting the quality of your life – like avoiding certain foods, or not going to the movie theater because of your compromised immune system – because even when you follow all of those rules and restrictions, you still wind up in the hospital. Which just makes you want to give up, altogether. And you’re so fucking tired you can’t even muster up the strength to brush the mold off your teeth.
So you stop writing. And blogging. And reading. And commenting. And tweeting. And participating. And you just hideout, under the covers, watching television, while ‘suffering in silence’ because someone once told you there’s a type of dignity in keeping these kinds of problems to yourself.
Except that suffering in silence, only makes you feel even worse, because you really need to scream on the top of your lungs – and cry uncontrollably – to anyone willing to listen.
Because, seriously?
This shit just isn’t fucking fair.
It is absolutely not fair. At all. And it makes me want to punch air in the throat, because at this point? OBVIOUSLY it’s air that’s making you sicker. Because damn, girl – you sure are careful all the time. I love you monkee.
It is absolutely not FUCKING fair and I am so sorry! I wish I could fix it. Please just know that I am here (even if way far away) I am willing to listen (via text, FB, Twitter, you name it!)
I do know that you are stronger than any of this but sometimes it is okay to just feel mad. I am mad for you.
BIG BIG HUGS!
XOXO
Traci
Leslie, that’s what’s making me THE MOST SAD. It doesn’t matter how “good I am” or how “careful I am” – this shit just keeps fucking happening. And I’m SOFA KING sick of it. And I’m sure I’m overly emotional and overly sensitive, AGAIN, because I’m on yet another cycle of steriods, AGAIN. And I feel like I am losing my fucking mind.
Thank you SO MUCH.
And I am mad. I am mad as hell. I am mad at my body, and the universe, and the fact that no matter what I do, I can’t get better.
HUGS. HUGS. HUGS.
Ya know, I don’t even remember HOW I “met” you or even WHEN. I probably followed a link that led to another link that led to a blog post about a perfectly made bed and how incredibly, INSANELY stressful it became to maintain that bed.
You…are like a comfy bed. Yeah, it may look lovely when it’s perfectly made and the seams are lined perfectly and there’s not a wrinkle in sight. BUT, the best part of that comfy bed is when you can be all comfy with it and it’s all messed up and the sheets are every which way and it’s OK because even if it’s not ready for the cover of Better Homes and Bedrooms, it’s perfectly comfy to hang out in and you’re happy and all is right with the world.
OK…did that analogy just get kinda weird? Yeah. Sorry abut that, but you know what I mean.
Even when you’re not at your best, or you’re flaring, or even feeling anti-social, you’re perfectly you and I love you for it.
It S!U!C!K!S! that this is the crap Life decided to toss your way. I wish I had a damn magic wand to fix it all. But please know that even when everything goes wrong and you wanna scream, there are people who love you enough to scream and cry right along beside you. And I’m one of them. *gentle hugs*
Suffering in silence is not a good thing, xoxoxo and a big virtual (((hug)))
XOXOXOX
Thank you so much, Chris.
And yes, I think we DID meet after my “bedding” blog post. I can’t believe you remembered that!
And no your analogy didn’t get weird.
I needed to hear that.
xoxo
Apparently, suffering in silence is the worst thing.
Thanks, Lucy.
🙂
Yep, keeping it all bottled up is a very bad thing, you have to talk and share and communicate. For some reason we all tell ourselves to ‘keep it inside’. Sometimes we go to far with the ‘positive and light’ stuff. Yes, it is good to be positive but that doesn’t mean to stuff all our emotions down. Once again, balance we have to learn balance 🙂
Aw, honey. This makes me want to cry. I totally understand why you would feel the way you do. And you have every right to feel mad, sad, angry, depressed, frustrated and even a bit hopeless. It’s SO not fair! If I could, I would bring you a gigantic punching bag. We would draw a face and body on it and name it, “Stupid, EFFING Medical conditions!” And then? We would put on our boxing gloves and we would beat the ever living SHIT out of it until you either feel better or we’re just downright exhausted. And then we will have some vodka.
Totally.
And I’ve been stuffing these feelings for weeks now but I just had to get this off my chest.
Otherwise, I would have exploded. And probably on some poor unsuspecting person.
Oh, Terri! I love you.
That’s the best idea / suggestion EVER.
Thank you.
This is the place to vent. Keep on screaming and we’ll keep on listening. We’ll listen even when you speak to us in your happy voice.
Terri’s right. Punching bags and vodka will kick the crap out of crappy.
My sister has a similar illness in that there is no cure and causes are completely unknown. We can’t make plans to get together because more often than not she’s laid up and non-functional. Living on the other side of this kind of insanity is terrifying. Sometimes I don’t want to come over here to read what’s going on with you because it brings all my fears for my sister front and center where I don’t want them to be. I want her to be who she was 15 years ago before she started becoming symptomatic
That said, if she quit, I’d be beyond pissed. The anger, sadness, and helplessness I feel about her illnesses is nothing compared to how I’d feel if she decided to stop doing what she could on her rare good days.
I hate that your world is filled with doctors and needles and trying every damn way in hell to stay healthy. I hate that you feel lonely and isolated but I love that you’re angry because that’s the fighter in you screaming in rage. If you think I give a rat’s ass if you’re cheery and supportive, you haven’t gotten to know me very well yet. Putting on a happy, false face for others isn’t worth the energy.Your energy needs to be focused on what makes you happy when you’re having a good minute, hour, or day. That quitter isn’t you, it’s the jumble in your head. You can’t think your way out of these illnesses and ‘suffering in silence’ is so much bullshit. The first time I heard the expression, ‘alone we got sick, together we get well’ I knew I’d found a forever friend. Those words keep me going and I hope you take them to heart. You are not alone, no matter what your head is telling you. We can’t support you or help you through this crap if we think you’re doing okay. Hang tough, Meleah. You are embraced in a circle of love that’s far bigger than you can imagine.
Thank you, Lauren. Thank you so much.
Yep, we usually end up exploding, my husband tends to get the brunt of mine but I have to admit innocent bystanders have been in the line of fire too and it usually has nothing to do with what is actually happening. I am glad you wrote about it and let us in. I had noticed you not around on Facebook and thought something was definitely up. I also understand not wanting to let it all hang out on Facebook but remember we have our little safe spot 🙂
Thank you, SOFA KING MUCH, Cheryl. Your comment really means a lot to me.
“but I love that you’re angry because that’s the fighter in you screaming in rage” – I suppose that’s true. I am a fighter. Not a quitter. And more often than not, I do try my best to enjoy whatever I can, whenever I am having a good day, hour, minute. However, I have given up on writing my book and a few other things, because it was just too draining and I can’t spend one well second doing something that takes so much out of me. At least not right now.
Also – I love the “alone we got sick, together we get well” phrase. Because I feel ALONE a lot, lately. So I will take those words to heart, like you asked. Thank you, again. You’re a wonderful friend.
I didn’t even want to express these feelings – because there are people battling cancer and aids – and they have it far worse than I do. However, that doesn’t make what I’m going through, any less shitty. And I just couldn’t hold it in anymore. Thank you for listening, and for being so supportive.
Melee, you know where I stand, even if it can’t be beside you. It so unfairly sucks that this is what you have to deal with. But you are not a quitter. Never let it win. Even if only for a day at a time, give it your all, and hopefully one day that break will come. And do not “suffer in silence”, let it out, by whatever means you can. And even when you feel lonely, know your never alone. XOXOXO
You’re the best, Jimmy.
And thank you for the email too.
xoxo
When you DON’T yell and moan and let it out, it just ends up turning back on you and eats you up. Which is no bueno. I’d rather listen to the “I AM SOFA KING TIRED OF BEING SOFA KING TIRED!” than have you in a blanket cave feeling angry and alone.
Rant away… from your blanket cave, if you must, but keep talkin’!
My sister was an internationally known figure in the world of dog training who’s had to give up everything she once did one bit at a time. She traveled all over the world teaching, she wrote books, she was an advocate for rescues, she did all that and so much more. Giving those things up was necessary to conserve her energy. As heartbreaking as all of that is, she’s found things that require very little energy to keep her going. I hope you find those things too. Giving up what drains you isn’t the worst thing in the world even if it feels like the hardest thing to do. I’ve given up a lot due to health issues so I’m not blowing smoke up your skirt when I say it’s hard but it’ll help in the long run. Hang in there, Meleah.
Your last line says it all. Pisses me off, it really does.
I honestly don’t know how you keep yourself so “sunny” with all that you persevere through. I whine when I get a rash.
And it seriously humbles me every time you stop by my place and comment something cute and/or uplifting. Don’t apologize for not blogging, just do what you gotta do, knowing of the multitudes “out here” that truly care about you!
“….because you really need to scream on the top of your lungs – and cry uncontrollably – to anyone willing to listen.”
You scream away, Meleah! I can’t even imagine what it must be like to experience what you are going through. It’s some tough shit! And not only the physical part, but also (and perhaps more so) the emotional part and keeping yourself up and positive when you don’t feel that way.
Please, just know that there are people here who love you and will listen, anytime you need to vent.
So let it rip, girl!
And listen, you have my phone number so PLEASE don’t ever hesitate to call me to just talk. I’m a good listener. Sometimes it helps to just say what you feel and have someone listen. I’m off from work right now, so I have a lot of free time if you want to call me. And I’m also up late at night, so don’t hesitate.
X ya bunches!
((((((((((((((((((((( You ))))))))))))))))))))))))
Thank you so much. And I do love my blanket cave. At least I still have THAT working for me.
“Giving up what drains you isn’t the worst thing in the world even if it feels like the hardest thing to do.”
Aint THAT the TRUTH.
It was REALLY hard to give up my professional career, and my gorgeous condo, and move in with my parents, when I first fell ill. But it was obviously necessary and isn’t all that terrible. At least my family is funny and understanding of what I’m going through. So there’s that.
Thanks again, Cheryl.
I already feel LESS alone.
XOXO
Thanks so much, Abby.
I’ve been a terrible blogging friend lately, and I feel awful about it. Hopefully, I’ll have the energy – and the time – to make the internet rounds sometime this week.
Ya know, after my millions of doctor appointments.
xoxo
Oh, Ron.
I love you.
SO VERY MUCH.
Thank you. Thank you. Thank you.
XOXOX
None of this is fair. I can’t imagine going through everything you go through. Of course, I don’t have the family you have. That makes a huge difference I’m sure.
Either way, this SUCKS for you, and you have every right to blow up and vent once in a while. In fact, it’s good for you. And what better place to do so than here – where are your friends can lend an ear.
((warm hugs))
Further proof that if there is a god, he or she is a real asshole! You sure have gotten dealt some shitty cards lately, Meleah and I don’t blame you one bit for being pissed, frustrated and upset. Don’t suffer in silence, scream back at this shit like you’re doing, I think that’s a positive thing. I do believe in the power of positive thinking, and I’ll be sending positive thoughts your way. Another thing I believe in is the power of positive drinking, so I raise my 25 ounce can of beer eastward from Peoria and toast to better days and nights for you Meleah! XOXO
🙂
I really appreciate you listening to me vent. And for your understanding.
xoxo
Lolz @ the power of positive drinking!
Thanks, Marty!
Hi, Meleah, I am sorry you are going through such a hard time and it definitiely is good to let it rip every now and then. It is definitely not (fucking) fair. See, now you made me cuss. But I can’t imagine you quitting and if it’s any consolation, your resilience is inspriation to this old guy. You are in my prayers.
Now I really wish I’d come to see you Sunday. You know you can always bitch about your medical stuff to us. But if you wouldn’t want to, that’s fine too. Whatever Meleah wants, Meleah gets. My mother’s Type I diabetes, in the last 10 years of her life or so, was much like you’re describing here. No matter how well she ate, how much, how little, didn’t always matter. She developed what’s known as “brittle diabetes” which means no matter what she did, she might have very low or very high blood glucose readings. It was very frustrating to her because it was like hitting a moving target. She denied herself many things she liked because she knew it might make her sugar go haywire, which put her at risk for lots of complications.Even if she ate like a bird some days, her sugar would go very high and nobody knew why. It sucked for her. Every. Single. Day.
I’ll be in touch with you, Val and Ron for a meet-up soon. Whenever you feel well enough for a visit!
Shit, that’s an enormous and quite miserable burden. I wish I had something affirmative and uplifting to offer, but they all sound patronising. I’ll settle for “I hear you, and I’m thinking of you” because it’s true. Indigo x
Thank you, Bud. Thank you so much.
Kathy that’s exactly it. And that’s exactly what’s so frustrating. The powerlessness. And the sacrifices. And giving up so much of what you love/enjoy and yet STILL having complications, flare ups, attacks, ect.
Thanks for letting me vent. And yes, I would LOVE to see y’all, soon.
Thanks, Indigo. Thank you very much.
BAAAAD SIDEWALK! You stop hurting my daughter, you bad sidewalk.
How I wish it still worked.
Meleah, I am so sorry for all the crap that life has dumped on you, and it is totally not fair. I don’t know what I can say that hasn’t already been said here, except that I second it. Holding everything in for the sake of appearing up isn’t healthy over the long haul. I cannot possibly imagine what it’s like to deal with everything you deal with on a daily basis, so let it all out when you need to. You have a fabulous family and a ton of friends who will listen and encourage you.
I wish it still worked too, Mommy.
xoxoxo
Thanks, Linda.
Seriously, if it wasn’t for my family & friends, I would NEVER be able to deal with all of this.
🙂
I’m so sorry Meleah.
XOXOXO
Thanks, Nik.
XOXO
Times infinity