Like Howard Beale, I too am mad as hell!
Yes, I know you’re sick to death of my incessant rantings against the unfairness of life, growing old and of being sick!
Tough shite.
Again, (and this means you too “Anonymous”) if you don’t like it, don’t read it!
I get that my tirades are becoming boring and empty and that nobody really fucking cares anymore… if they truly ever did. Whatever; that doesn’t stop my need to… “NO,” my obligation to speak out.
“Choosing with integrity means finding ways to speak up that honour your reality, and the reality of others… ” ~ Terry Tempest Williams
Like it or not, this is my freakin reality. I didn’t ask for it! I don’t want it… but “it” is my life now, I have no choice; I’m obliged to speak my truth!
I don’t rant just for me… I rant for all of the others as well; the others that you (you who are fortunate enough to be healthy and well) don’t know anything about! Please don’t misunderstand, I don’t criticise you… I used to be YOU!
Now… I’m with them. I’m with the ones who sit, by themselves, on a couch and suffer in silence; the ones diagnosed with some weird, obscure, auto-immune disease that nobody’s ever heard of and that has since turned their lives into a living HELL.
For all you know one of them could be your kid’s “frail” teacher, your “A-hole” boss, or that co-worker who’s always taking time off of work.
There are a lot of us out there who don’t want to be “a bother,” or any “trouble” to our family or friends. All of us who, when asked, “How do you feel?” will always respond, “Fine, I’m fine…”
The poor suckers, like me, who were unlucky enough to roll out of bed, one ordinary morning and have the god-damned day turn out to be ANYTHING, but ordinary!
I speak for them… you want to know why? Because some of them, are too sick, tired, frustrated and fed up to speak for themselves. They’ve been beaten down, by a relentless disease that kicks their ass 24 hours a day, 7 days a week, every month, for years!
Some of them have just stopped trying.
They’ve stopped trying to explain to you, that they are not lazy. They are not seeking attention. It’s not all their head. They know adopting a more positive attitude, won’t really change a damn thing.
When they’ve told you they were “exhausted,” they meant that they were physically, mentally and emotionally unable to connect with any reality, in any real or pleasurable way. They were spent, depleted, drained, emptied, burnt out, unable to connect.
Did you hear them? Did you listen?
Many of them, who have been stuck in this cyclone of shit, for a very long time… feel that you don’t hear them anymore or that you even care… so why should they bother to speak at all. Better to save their energy for more important things.
When you say things to us, like;
“You don’t look sick,”
“Maybe if you just go outside and get some fresh air, you’d feel better…”
“Yes, I hear ya… I’m exhausted too.”
“Maybe you just need more exercise?”
“It will get better… I’m sure… just push through it.”
“Have you tried….”
…please know, (and I say this ever so gently… ) we want to kill you!
We never would of course, but please know, NONE of these things is remotely helpful or productive.
We have a devastating, destructive, debilitating disease.
Auto-immune diseases are as “real” as a heart attack! They are as real as cancer, asthma, diabetes, COPD, cystic fibrosis, heart disease, Parkinson’s… and all the rest! Just because you can’t see the disability and we’re not represented by a distinguishable symbol like a trendy “Pink Ribbon,” or a cool, coloured, silicone bracelet… doesn’t mean our pain and our struggle isn’t real.
These diseases destroy lives. They come out of nowhere, grab you by the ass; eat you up and spit you out. Your life is irreparably changed.
It’s difficult to pin down the current global statistics, but the National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune diseases. That’s only Americans and the NIH numbers only include 24 diseases. Many auto-immune website say there are over 80 different auto-immune related diseases!
That’s a lot of fucking sick people!
We’re out here.
And hopefully we are (in much greater numbers) becoming mad as hell and not going to take it anymore!
I have fantasies of a REVOLUTION; a revolution where people impacted by devastating auto-immune diseases like Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) demand to be heard! A revolution where our GPs and Rheumatologists are forced to take us and our symptoms seriously! A revolution where drug companies are encouraged and incented to look for better, more effective medications to treat and alleviate our diseases symptoms. A revolution where we’re not embarrassed or uncomfortable to openly talk about our disease, and we don’t automatically just make light of it to ease tensions.
A revolution where we have our own immediately, recognisable symbol or brightly, coloured bracelet.
Perhaps even a slogan?
How about…
Autoimmune disorders: “Yes, even your body hates you!”
rantings of a madwoman 
I am one of “them” — one of the unlucky ones that also has PMR and GCA.
Normally I’d post where I met the author, but today I’m going to reply here. Because by posting where I normally do, would just be preaching to the choir. I don’t have to tell them what’s it’s like as they are living it, too.
Friend of the author? Care about her? But don’t have a clue what PMR or GCA is?
Then it’s time that you take a few minutes to learn about what’s ailing her. Giant cell arteritis (GCA) and polymyalgia rheumatica (PMR) — look them up. By taking the time to read about these, it’s showing her that you do care. That you have an interest in HER. And it may make sense out of why she can’t schedule ‘play dates’ days ahead. (We just have no idea how we are going to feel until we wake up that day.) It may make sense why when you call at 9:00pm (or 9:00am for that matter) and she’s in bed. (I used to stay up until Midnight most nights. Now I’m lucky if I’m not in bed by 8:00 pm). And if she isn’t her ‘warm, bubbly self’, it may be because her journey has been especially difficult. Most of us feel like our journey is one step ahead, two steps back. Hers has been one step ahead, 10 steps back. Her body is fighting wars on multiple battlefields. So cut her some slack. And give her some love.
IF you’ve been thinking that you miss the fun blogs, I get it. I’m sure she does, too. She’s a great writer and I’m sure those fun blogs were a TON OF FUN. That was her past. If you can’t handle the truth of her present, check back in the future.
But if you really care about her, or have someone with an auto-immune disorder, stick around. Because NOBODY….and I mean NOBODY….has been able to tap into what the journey is like for those that have auto-immune disorders. She speaks the truth.
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Dear “Joy,” I’m sure I know you by another name… You’ll have to “message” me and tell me your PMR/GCA alias! : )
Thank you for the amazing comment! I so appreciate you taking the time and energy (I know how important our energy is!!!!) to try to explain further our struggle… it may fall on deaf ears because if your don’t have it, you I doubt you can even imagine what having an autoimmune disease is like! …but thank you, thank you for liking my RANT, supporting me and especially for being my friend! Your friend and The Author… Melissa
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I LOVE these posts, thank you for being so articulate. I don’t recommend people who wish to understand PMR to read up on it. The information out there does not help people to understand how life changing PMR can be. Unless you dig really deep or find the Health Unlocked Forum out of the UK what people read is that you go on Prednisone and are “cured” in 12-24 months, and that once on Prednisone life is normal for us.This has not helped me in the 6 years I have lived with PMR. I also had to recently get a new Primary Care physician who said to me that I am a rare case, she is under the impression that PMR passes in 6 months. I will be shopping for a new physician. This rant is exactly what I needed. Thank You !!!
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Hi Shelley, Thank you so much! I appreciate your support and hope my rant has entertained and helped you a bit! And yes, it is unfortunate that doctors are not better educated about PMR and/or GCA. 6 months… I wish! : )
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Keep on advocating and ranting Melissa it’s all valuable to others in the same situation for sure. I think we started our “journey” 😉 around the same time and it’s dollowed a similar pattern with side effects etc, and you are so right, it’s easier to say little to anyone about it – even when it’s clear you aren’t well. I’ve just avoided supermarkets (where I always meet people I know). and become quite reclusive. I have a wedding coming up and am absolutely dreading it – but feel I HAVE to attend and normally would look forward to it. Scared of looking awful (moonface)!and feelingnawful (fatigue and diabetic /Pred sweats – and worse than anything having to explain why I am like thAt! People have no clue the emotional side of things we have to deal with, such as that, nor how much this PMR/GCA really impacts our lives. Your comments and rants always give me a lift and make me smile, because your situation is one I recognise and can soooooo relate to! Keep it up – it’s really worthwhile for others too and therapeutic to you also. Sending big hugs, hope things improve for you sooner rather than later. 💕 xxx
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Thank you Hev77, I appreciate you taking the time to write that beautiful comment… I know the energy that it required, and I know how much energy you don’t have! So thank you. A wedding sounds horrific… for all the reasons you stated. Don’t put too much pressure on yourself. If you MUST go, have an exit plan after a specific amount of time, and stick to it. You do not owe anyone any explanation, so when it’s time to leave, leave! Tell them I said so!!!! : )
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Of all people to be stricken with these autoimmune diseases…your heart as pure as it is…your soul as devoted to healing and helping people die with dignity…this is so wrong. Normally, I would say that everything happens for a reason…I don’t get it in this case. My heart grieves for you everyday. Bless you on your journey to heal. WEH
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Hello My Angel, Don’t grieve for me… please. These diseases (which soooo suck!) have taught me so much about me and other people and life! In the past 5 months I have grown in so many ways.. yes it has been a struggle and a hardship and they continue to “kick my ass;” but the people I have met, the experiences I have had, the creativity I have discovered… I never would have found any of that had I not gotten sick and slowed down. It made not have been the BEST trade, but it ain’t bad. xxxxxx
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You and Joy have a wonderful way with words. Unfortunately I do not and as I too am on the same journey it makes my heart sing that you can put into words how we feel.
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I am so happy that my words resonate with you… Thank you!!!!!
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Great blog, I’m amazed at how spot on you are and can only wish I could be so articulate in reply.
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Wow! Thank you. I appreciate your reading it and taking the time to comment! Cheers!
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Thank you Brian! Thank you so much!!!! For some reason taking 45mg of Pred daily, seems to give me more insight into me! Thanks for your support!
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Sorry.. I didn’t think I responded to you! Pred head!!!!
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BEST RANT EVER!!!! Go you!! I read your very words to my brother tonight and I think he is starting (finally) to get it. Would you believe my mother still denies I have an auto immune disease and thinks I’m exaggerating. I used to be a good ranter but my brain will no longer handle complex ideas and arguments and that is one of the most frustrating things for me. I consider myself more fortunate than most. I have a lease of energy at night and can teach singing as there seem to be a whole host of good chemicals given to me when I teach and when I teach singing. While the pred might from time to time deal with the mobility and pain it cannot and does not deal with my lack of focus and the wall of fatigue I experience during the day. Things take sooo much longer.
Here’s another strange thing. My creativity over setting musical numbers is much more intuitive. So that part has got better. Perhaps PMR is switching off my monkey brain and letting the unconscious creativity through.
I’ve never been so inactive having been a professional singer and performer. So not only do I have the frustration of not being able to “shake ma shammy” like I used to, my bloated appearance does not put me in poll position for jobs. With public performance image is everything…. I’ve lost that and that is truly shit. I can’t believe it’s me I’m looking at in the mirror. A wee skinny face lost in a matronly chin roll. That’s shit.
We have a PMR GCA charity here in Scotland I want to do a big American Big Band Gig to raise funds for them. But I’m worried that organisationally I might get tired. I should think about help. I also know some people in the filming industry so I have fantasies about writing great adverts…you know like the ones for asking for money for Cancer research. I have it in my head and I even have the strap lines. So wish I could get some financial support to do this.
Any other creatives out there??? Let’s not take it any more ..let’s make it much more.
You shake that tree wummin ranter!!
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OMG. I clicked on my name on my reply and my name comes up as someone completely different.
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Thank you! I am happy my words helped your brother to understand… Mum’s are often in denial about their children, keep trying, she’ll come around. Just go gently.
Yes the creative juices do flow better under the influence of the disease(s) or maybe the PRED!!!! In either case, embrace it!!!! Many thanks!
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Melissa, I love you. I dont have the ability to express myself the way you do nor the way so many of the people who commented ..so I can only say ..I want to say what all of you said. As always, I thank you from the bottom of my heart. Somehow you write my thoughts. I am so very grateful to you.
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Hi Anna! I love you, back! And I am happy to have your support and pleased you are still following my Blog! Thank you!
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