That which doesn't kill us?
I picked up a new book a few weeks ago. I normally refuse to read books about illnesses, etc. and the latest, 'new cure.' Been there, done that, and have way too many versions of that t-shirt.
I keep up with research in the diseases that I know are eating away at my immune system and other parts of my body and follow various newsletters over the internet. I gave up on books awhile ago, as the information lag behind the treatments I was already receiving was just too great.
But this one is a bit different. And I've been approaching things a bit differently lately. It always seems like I have to once more let myself cycle down through the very depths of feeling like absolute crap and being in an amount of pain that is uncontrollable at an intolerable level before either: a.) I get up the gumption to tell the doctors that they better do something about it and we need to try something new, or b.) they notice that I'm particularly suicidal and decide we better do something different and try something new.
Why I'm in a different head space this time I think? is that the number of weird conditions that Western medicine doesn't really like to explain that are effecting my health are now being added to with all those sucky conditions of old age that Western medicine recognizes and seems willing to treat. The doctors keep shaking their heads and adding a new weird diagnoses for every 'normal' condition they add though. I'm up to 10 or 12 now that I'm fighting and trying to balance.
I pretty much try and only worry about the immune system ones that are actively trying to attack my organs and eyes and glands. And the ones that will actively kill me or really make my life go through major suckage by making things be amputated or worse if I don't keep them under control. You've got to have some priorities, right?
We have three or four names for the immune system crap. Chronic Immune Dysfunction Syndrome, Fibromyalgia, Myofacial Pain Syndrome, Hashimoto's thyroiditis....any others? Something else will probably jump on the band wagon. It's not like they have any great tests for these. They go on symptoms. So they theorize that my immune system decided sometime in my late teens or early 20's that it didn't like my body. Western medicine still lacks tests for most of these to find them before they start harming the body, and even after they do, they can only treat the symptoms.
Huh, makes me sound like I fit in with every other person in this book. The subtitle? "Unmasking concealed chronic illness and pain." Not that the pain is all that concealed...not from ME anyway! and based on how bitchy the family says I can get when I'm not making the effort to be nice...
Well, golly gee, Mr. Wizard! Organs being attacked and stopping working gets painful sometimes and when you don't have much of a metabolism because your thyroid barely works...and what does work seems to be under attack it's kinda hard for your body to function with what the diabetes leaves you....hmmmmm....I guess I just got no excuse. One of my new doctors didn't even look up what Hashimoto's was and what it had been doing to my endocrine system/digestive system before she decided that I make poor nutrition choices and have an improper diet.
Actually, I eat keep track of my diet better than most skinny people or dieting people I know. I eat 1000 calories less a day than I should to maintain my weight most days (to a diabetic a carb is a carb is a carb nowadays and I eat WAY more veggies than I EVER did before!) Yes, even on those awful days at Izzy's when I punk down the HUGE amounts of carbs because they don't have much on their menu but deserts that isn't loaded with preservatives and chemicals (and even those are borderline....yeah, yeah, you all know the rant...) I STILL manage on those days to come in under 12-14 carb units which is at the upper end of the scale of the diabetic diet I've been following, pretty religiously for, oh, about, 6 years. It's not like it's hard. At my size, I'm allowed quite a bit of variety to maintain my body weight and the big change lately has been the huge increase in fiber and veggies for me to balance all the weird things the meds are doing to my system.
But my Hashimoto's thinks I'm starving anyway.(this thyroid crap started back in about 1990 for my body, yippy yay!), but my diabetes thinks I'm not." And anyone who knows me, or has seen me eat knows I'm not starving ;D You'd be surprised that the meal I'm eating may be the only real meal of the day, but I do eat right.
....and the judgements? from other people? keep going on, and on. This woman was a doctor. What chance to I have against the judgmentalism of other people? I've gotten so tired of the lectures from the people who have all the answers because their brother's cousin's wife's aunt, or their family, or they... compassion is lacking in these people in that they even think to judge or lecture. This book is for people like them. And for me, to help me remember to take a deep breath and walk away. They aren't worth it anymore. My energy is too scarce. People who are going to judge me on whatever criteria they've made up in their head, for whatever reason, whoever they are, I can skip knowing.
Maybe if more families or friends or doctors read it, they would remember compassion when they were dealing with other people and stop judging. Maybe more relationships could be saved.
Recently I finally put my foot down and told the doctors I need better pain management. Yes, I look "just fine." I look like some healthy, middle-aged matron who has over-indulged all her life and is now paying for it.
Goddess, don't I wish. I see that judgement in the eyes of even my friends and I want to tell them to walk even a few hours in my shoes, let alone a few years in unrelenting pain that is blinding and doesn't allow thought. To add in my thyroid system that has been shutting down for years and struggling to have to place one foot in front of the other or bend over to pick up a paper dropped on the floor. I still do those things. It just takes a lot more time and a lot more effort and many more days.
I am digesting this book slowly, because it is written about people like me. People who don't want pity. People who are just tired of being judged. If I had a nickel for every offer of help I'd gotten from those same friends and family that then had some excuse for not being able to be there for me when I really needed it, I would have been able to pay for the specialist my neurologist wanted me to see in San Fransisco! lol
I can remember so well always running here and there to do this or that for this person or that and never having time to catch up on anything for myself...I still don't, but now I don't have any energy for anything for myself either, so it balances, sorta. ;|
There's a quote here on page 31 that resounded with me:
[ 'It is very frustrating when you are raised to be active, and you have talent, but you are no longer able to do the things that you enjoy.'
People with chronic illness or pain are survivors, and accepting limitations is in conflict with the code that survivors live by. No one wants to be sick. No one chooses to give up those things in life that bring joy. Yet at some point, people with chronic disorders need to learn to say no to many things that have always been part of their lives. Being told to look on the bright side by well-meaning friends and family members simply adds insult to injury. Positive platitudes and quick fix suggestions trivialize pain and symptoms and cheapen the impact of these difficult and relentless challenges.
Chronic pain is real yet it becomes difficult to talk to friends and family about it. Not only do people want to be free of chronic pain, they do not want to feel like a burden. "It's a large part of who I am. I just don't want to be pitied by my friends or to be known as 'the suffering one' to those I love or the people I work with,"...." Everyone becomes tired of hearing about how much I hurt, incuding myself! Some people think I am making it up or exaggerating my symptoms. But chronic pain is very real. Even the medical community doesn't always take my pain seriously." ]
I could so relate to this. I just don't want to talk about my health all the time. That's why this blog is about other subjects: my kids, tea, fashion, the sca, films, weird stuff, things that strike me as funny. Quotes from books I'm reading.
This book just happened to hit a particularly strong cord, and it probably doesn't help that they are changing my meds, and I'm feeling mental and whiny. It's father's day and these days, when I miss my parents I always realize how young they were when they died. I look at I and my siblings, my cousins and realize how young we all are for the kind of things we're already facing. I never expected to be under 50 and sharing the "old lady" symptom and medicine comparing conversations over the phone, you know?
Today I have to realize that my dad and my husband are probably the two people who have come the closest to understanding what I live with on a daily basis. I thought my dad was overprotective.....I think my husband is most of the time as well.
So, what does that say for my sense of judgement?
Probably means I picked the best possible father in the world, who I miss a whole lot today, and that I couldn't have married a better man, huh?
from a puzzled goddess who looks just fine thank you
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