When I first became ill my doctors tried to comfort me/fob me off/make me feel whingy, with the "it wont kill you" line. And so far they are correct. I'm still not pushing up daisies, although some days I do feel like I should. I may look like death. I may even feel like a warmed up version of death on what is now a fairly regular basis. But I'm still here, kicking on, or crawling on, or lying elegantly on my bathroom tiles still breathing if not moving. Whatever the truth may be.
I realised today that unlike the ridiculous saying in the title of this post, I don't always feel stronger for all this crap. By rights I should be the Arnie of the illness world by this stage. But apart from a really bad attempt at "I'll be back", I am feeling a little on the lacklustre side of the ledger.
Monday I go into hospital for the week to try once and for all to sort out what the hell is wrong with this old body of mine. It's going to be a hell of a week. I made the mistake of reading over the neuro registrar's letter that lists all the things I need to be tested for and all the painful ways they are going to do just that. And frankly a little piece of my mind whimpered a pathetic "mummy", whilst it rocked in the corner.
I've known for a while that something less savoury is going on with my body. But compartmentalisation and denial have been wonderful bedfellows and I've been reluctant to kick them out. Now I am faced with having to take it all seriously. By the end of next week I could have an answer. Or not. I don't know which is worse. If I get an answer it means something rather nasty is happening to my body. Something that may or mostly likely, may not have a solution. Or even better may have a solution that I am no longer well enough to attempt. Both my neuro and the neuro registrar were very clear on that, again and again. No room for false hopes.
Or I can be poked and prodded, scanned and zapped, for a week and come out none the wiser. Stuck in the holding pattern yet again, with only a few extra nifty scars to show for my efforts. Which is worse? Knowledge or no knowledge? I'm not sure at this point. Though it would be nice to have a proper name for this damn shadow that follows me everywhere. It'd be nice to know what I'm up for, even if it's not that great. It'd be nice to have certainty once more, because I sure as hell have missed that over the last six years.
Because despite all the assurances that "it wont kill me" or I'll get some fricken' life changing epiphany from the last six years of my life, it doesn't make it any easier. I'm tried of being sick 24/7. I'm not all smiley, perky, moonbeams and sunshine. I'm not the brave sickie valiantly fighting the good fight and worthy of a Hallmark movie of the week. I'm just me, and I'm tired. I'm bitter, and I'm pissy. I want to say a big FU to the universe. Just for once I want an answer. Just for once I'd like to get it without pain and fear. Just for once I'd like to feel well. Because I really don't know what that is any more.
I don't want empty platitudes. I don't want someone to tell me it'll all be okay. Because it may not. Because that's not reality. Because none of those sayings mean a thing when I can't stand or stop the pain shooting down my legs, or am throwing up in yet another public loo. I want someone somewhere just to say "I hear you". To acknowledge that yes, this is shit. That no one should have to deal with this. And that it's okay to say just that.
I know people don't know what to say. That they mean well. But every time someone trots out those perky sayings, they might as well just tie a gag around my mouth. Because each one tells me to be silent. To not raise my voice. To stuff down my feelings. To not rock the boat. And most importantly, don't make others uncomfortable by my suffering.
I have fears. They whisper in my ear at night. Fear that I'll get an answer. Fear that I wont. Fear that the damn tests themselves could leave me with further pain. Fear that if I share these fears that I make them real. Fears that live alongside all my positive affirmations and distraction techniques. Fears that still exist even when I laugh and act the fool. Because that's reality. Because not sharing them, or pretending they don't exist, doesn't make them disappear.
So my emerald suitcase lies open and empty on the bed. And today I just want to crawl inside, zip it shut and hide from the world. Because I don't want to be strong today. Because this sucks. Because it scares those who love me, just as much as it scares me. Because I can't give them those empty platitudes. Because I wont lie to them. Because they deserve the truth. And if that truth is unsavoury and unpalatable, so be it. We will deal with it because there is no other choice.
We tell lies when we are afraid....Afraid of what we don't know, afraid of what others will think, afraid of what will be found out about us. But every time we tell a lie, the thing that we fear grows stronger.
Tad Williams, Storm (1993)
So I'll share my truth. I'll shout it from the roof tops. It'll be battered and bruised. It'll burn the eyes and hurt the ears. It'll make many uncomfortable. But I wont be placated. I wont hide. And maybe, just maybe, those fears will grow weaker.
I hear you M and you speak the truth without fear. I will be here to commiserate or cheer when you get thru this week.ReplyDelete
Thanks babe xxDelete
Good luck Michelle. I know exactly what you mean xxReplyDelete
Thanks. To be honest, I'm pretty overwhelmed by all the responses on here. It's so nice to be heard and have so many understand. xxDelete
Good luck with your search and with whatever news it brings. Shout all your doubt and fear from the rooftops because there are in fact many of us who do walk alongside you and who refuse now after many years of silence (because others are uncomfortable) to speak, to share our worries and our gains, our discontents with the medical profession, and on and on and on. ...Because what and who we are goes on and on and on... we are here and so our voices must be here. Others must hear. Today I have heard you and will think of you as you ROCK that hospital with your emerald green suitcase. It made me think of Oz. I think we all keep wishing for trips to OZ. Unfortunately, I myself am always so dissapointed when I throw back that curtain and find a small scared man himself behind it, who knows less about what is wrong with me than I knew myself. I wish for once, that man could just humbly admit that! And hear about my suffering. All my best for your difficult week and may you find peace and may they care for you well.ReplyDelete
I'll have to say all the support on here gives me the strength to keep shouting Kiran. I've never really understood why ensuring no one else was uncomfortable with our suffering was more important than our own suffering, but that is the way we are often made to feel. I like your Oz analogy. I finally did have the doctor say they don't know and even after all this may never know. That was equal parts terrifying and weirdly comforting.Delete
So many of us will relate to this, thank you (again) for speakIbg our truth. Sending you big hugs and good ju ju vibes for this week.....xoxoReplyDelete
Thanks Claire. I'll take those ju ju vibes xxDelete
I SO relate to this. It took me five years of poking, prodding, and ridiculous BS sayings from drs, family, and friends. I found my answers, and it is so much easier having knowledge. The struggle to get there just totally sucked. I hope you find yours too.ReplyDelete
Thanks Anon. So many of us are treading the same paths.Delete
Awe, good luck!ReplyDelete
I can relate, as I'm heading in beginning of September.
Hope everything goes well
Thanks Alisha and good luck for September.Delete
My heart is with you... and it's echoing the same fears. I'm tired of fighting - tired of waiting for answers and putting up with torturous tests. I'm praying this coming week leads to some form of treatment that improves your quality of life -- at least enough to make the tests worth it...
Exhaustion seems ever present, doesn't it? It's over six years since I first became really ill and I still feel like I'm fighting at the same level of intensity. I'll have to admit once this is over I wont be going back for more testing for quite a while. I need a sanity break.Delete
PS... Of course, NOW my computer let's me post a comment -- when the giveaway is OVER. :)ReplyDelete
HA! It's always the way ;)Delete
Good luck with your hospital visit!!ReplyDelete
Thanks Red xxDelete
I'm so glad to have found your blog! I have Dysautonomia too. It's so nice to find a blog to relate to. I hope your hospital stay gives you some answers.ReplyDelete
Welcome Katie ;)Delete
Oh hunny. I really feel for you. I have been feeling a little like this too lately, and I am so thankful to know you and know someone who truly gets it.ReplyDelete
And I couldn't agree with you more about those stupid sayings. I'm quite tired of hearing 'what doesn't kill you makes you stronger', it's such a throwaway line that doesn't bring any validation.
I'm frustrated with people telling me to be more positive. I was told the other day to quit being so negative. I was only having a negative day because I was feeling so ill and not many people understand how much it freaking sucks to feel so dreadful and how hard it is to stay hopeful after so long with no answers. But I know you do.
I hate hearing 'it'll be okay' too. It doesn't bring me any comfort whatsoever. It's so easy to say when you're not the one that has to deal with all the crap that comes with a chronic illness every day.
Chronic illness does very well damn suck, and I admire your honesty. I think you deal with it all amazingly well, I think you're pretty darn positive, and it takes a strong woman to write this stuff. You are an encouragement to me.
Wishing you all the best for this week. Crossing my fingers that you finally get some answers. Thinking of you ♥
Thanks babe. Yep those throw away lines are horrid in all their forms. It is okay to say it sucks, I don't know why people can't accept that. It's not like overall we aren't positive or don't keep going, just every now and then you want to scream. It's like a pressure valve on a kettle. You have to let it go or you'll blow.Delete
This isn't a Hollywood movie where it's cutsy and fun and over in 2hrs. It's life and it's raw and ugly at times, and unlike a movie doesn't have a clear end. I may have been stressed about the week but I still took in my little yellow cocktail umbrella to brighten up the day and had all my bright clothing and chocolate. We are complex creatures and it's okay to hold two opposing emotions and thoughts at once. (ramble over) :)
Just to reach out to you and say hi in your lonely hour. I am as yet undiagnosed, after 21 long years. There has to be an epiphany some time right?
Here's another throw away saying for you, 'feel the fear and do it anyway'. My brain is so fogged I can't be clever with words any more but you are amazing and beautiful. You make me feel understood and validated and you are helping me immeasurably keep going on this mud track of a lifes journey.
Peace be with you and may God look over you on your journey.
With love. X
Thanks Anon, your words mean a lot. It's comments like yours that keep me going too xxDelete
Oh girl I'm so sorry. Even tough girls got to throw in the towel sometimes too. If I was there I would get in your suitcase for you, and fart. :) Then that would be no good as I would surely bust the the zipper. Also Mr. Grumpy may be tough but don't think he could left my fat butt down your stoop. But I can still bend like that. After pills, beer, sweet talking, and lots of candy. Then I might hurt for weeks but I can do it. Maybe. But I would try for you. Cuz I love you!. Sorry love. I wish I knew when I could say it was going to get better, but I'm still waiting too. So guess we are waiting together love. Hand in hand, together dancing around looking for the cleanest potty. <3 you.ReplyDelete
Did I tell you I love you lately? xxDelete
Did this work right?ReplyDelete
Never have I read something so eloquent that echoes my experience. I was told it won't kill me, then, after 49 years, they found what was wrong. the knowledge I hv to say, some days I wish I never found out because this Is going to kill me....they were wrong, for so very long and now it's too late. I don't say this to.worry you but you are listening to your body, yourself and just like you, I knew something was very wrong. I am getting treatment but it only in hopes of prolonging my life. no cure. It took too long to find. I've always said I want my tombstone to say "I told you I was sick!". I don't mean to scare you. I too know what it is to feel others discomfort with my prognosis and health, or lack thereof. I know you don't feel brave, but we are dear, we are. may you find what youare seeking.ReplyDelete
I am so sorry Molly. It's so wrong that so many have been through this and that in your case it has been too late. Thank you for sharing your story, as I know it'll help others too(hugs).Delete
Hallmark movies are totally overrated.ReplyDelete
You are not.
You are brave and inspiring. Not despite your slump and fears but because of your truth baring. You always hold the banner of truth. Thank you.
Thanks Anon xxDelete
Followe you blog for years...ReplyDelete
Have been going thru the alienation of chronic Dys...
Yep it is awesome to see all your replies....
Talk about people who are friends... your body is screwed up beyond coping someday...maybe most days lately...
But look at the crew who loves you...no matter how pissy your body is..
You have friends that love you...
All the fraud friends leave us chronic.dys people...
Yeah. You got real love....
I'd love to read a blog on that...
The one thing this illness does is sort out your friends. Many I thought would stick by me are gone and those I never expected stayed. The community that has sprung up around the blog is wonderful and it's very much like family now. The support on here, FB and Twitter make the hard times more bearable in a way I never could have imagined before starting blogging. We may be separated by geography, but where it matters most, in the heart, we are all right there. xxDelete
Such a poignant piece of writing, straight from the heart. I understand the sentiment behind your words completely. While I will not say that I understand what you are going through--no-one truly can--you are certainly not alone in the types of feelings you are experiencing.ReplyDelete
It's effing exhausting to be sick constantly. To have to pick yourself up on a crap day, dust yourself off and order yourself to keep going. There is nothing more exhausting than having to lie about how you feel to others and yourself because you don't want to burden people with your problems, when all you want to do is scream at the top of your lungs about the injustice of it all and throw lots of sharp pointy things at the universe for giving you a crap lot in life.
And then makes you want to throw sharp pointy things at ignorant people who don't understand that the little bit they get to glimpse at your struggle is just the tip of the iceburg, because no-one really wants to hear how you're really feeling.
Just know that you have the empathy of every poster here who gets it. That you don't have to be strong all the time, that you're allowed to hate the world and hate your lot in life, that you don't have to pretend that it's all fine and you're okay. Because it's not, and you're not. And that's normal.
It's not selfish to allow yourself to feel like crap. It's acknowledging that you've had something rubbish happen to you, and you're allowed to feel like rubbish.
Your moniker is so apt Exhausted, because it is just that, exhausting. Chronic illness sucks as it's so unrelenting. Some days I wish I had a bucket of those sharp pointy things for those who are ignorant or don't get it. But then I come on here and read all the lovely comments and it lifts my spirits in ways I can't put into words. I am very grateful to all those who get it and take the time to share. There's a lot of good out there in the universe. xxDelete
Michelle- i dont believe ive visited this page before, but came on it tonight and the title of this posting caught my eye. Thank you, thank you thank you for putting out there exactly what ive been saying (only to myself of course!) so often lately! i also live with chronic illness (questionably a result of autonomic issues but of course no one knows for sure), and what you have written i feel like could have been written by myself- thank you for that! I hope the absolute best for you!ReplyDelete
Welcome Anon. I'm glad what I wrote could help. It's funny when I write my posts I never know if people will relate or not. Sometimes the ones I think people will comment on I get the least and the ones I think no one else will get are the ones that get the most comments. It's a comfort to know I'm not the only one who has these same thoughts. :)Delete
I hear you. I can't stand pathetic "feel good" statements that come across as generalized. Especially "What doesn't kill you makes you stronger". There's a popular song by Kelly Clarkson with this title. I'm not bitter or a hater or anything...I'm just logical. There is no logic to this statement and as a matter of fact I don't like my child believing this fallacy. So by this train of thought, "what doesn't kill me makes me stronger"...hmmmmmm. Let's see... I could smoke Marlboro Reds for 10 years and stop one day and say, "hey, what doesn't kill me makes me stronger". Are you high on crack? You think you'd be stronger than if you never smoked cigarettes for 10 years? You don't think you might have just maybe done some damage? I can see how it applies to a relationship break up or some situations but these people use it like a mantra. That's a dangerous mantra...good luck with that.ReplyDelete