"When you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?"is, unfortunately right up my alley.
I'm currently trying to get a handle on at least two startling new diagnoses - That I am either diabetic or pre-diabetic (depending on when I take the stupid blood test), and that my gall bladder seems to want to attack me for no good reason at all. (Which, unfortunately, makes it not all that unusual from any other organ or part of my body - "Reasons? We don't need no stinkin' reasons!") I'm also undergoing some testing for an undiagnosed liver issue, which will bring my sum total of chronic conditions up to Way Too Damn Many + Infinity.
All three of these new issues, plus an injury from a recent fall, have definitely thrown me - More than once I've thought to myself, "But I barely have a handle on everything I already knew was wrong, I don't know how to add these into the mix!" And I won't sugarcoat it ~ So far, my main coping mechanism has been flat out denial: I will deal with it by not dealing with it. That is what I would like to do with each and every illness I happen to have ... I'd like to ignore it until it goes away. Until it decides that I am no longer worth its time, energy, or effort, and just ... leaves. But I also know that there is no way in hell this is going to happen. I mean, it's not like I don't recognize that this isn't a great coping skill; it's just my fallback position.
Still, denial can only last for so long (I hope), and eventually my brain turns back on, and I realize I have to do something. I'd say I'm currently smack dab in the middle of this second phase of coming to terms with the newest issues that have been heaped onto my plate: Full out educational immersion.
Deep down, I'm a geek, a scholar, a nerd. I live my life with the firm belief that there's just about nothing that can't be made better by reading about it - even when I'm upset, I'm curled up with a book, trying to connect to something that will make me feel better. (The way I knew, all those years ago, that my depression wasn't just run of the mill sad/a tiny bit of malaise? Was that I stopped being able to enjoy words - reading them, writing them, interacting with them... it was all suddenly bland and useless, and that's when I knew something was dreadfully wrong.) So, faced with new challenges that I have no idea how I'm going to meet, I head to books, I head to the computer, I head to the library, and I start stuffing as many facts and theories and strategies into my brain as is humanly possible, in the hopes that something will make this easier.
So far, I've done a done of reading up on diabetic food choices (not diets, because I am not good with diets, but choosing foods that will work better with my body's new issues), which is good, because the nutritionist they sent me to explained things like "you have to eat some vegetables every day" and "the way to figure out how many calories are in what you are eating is to read it right here on the box, let me show it to you", and was utterly useless in every single way. I've researched what my blood glucose numbers might mean - again, thanks for all your not help, Nutrition Lady - and why the Hemoglobin A1c test that I took could have such varied results, and how I'm probably not diabetic, but I should try to address things before I become diabetic.
I've looked up the gall-bladder (anatomy - who remembers where all those stupid organs are hiding?), and tried to make sense of the internet's explanations of how something that lives under your ribcage, down by your belly button (ish) can cause pain up behind your shoulder blade, because that is some real ridiculousness right there, human body, and it must be explained. I've tried to figure out how to peacefully combine the gall-bladder attack prevention diet and the pre-diabetic food choices into a livable mealtime strategy. (Have not succeeded, by the way, but am working on it.) I've gone back to some of my favorite chronic illness blogs and looked for relatable, motivational & understanding words; Have reread a couple of books I find inspiring, in the hopes of prodding myself into taking next steps.
I'm accumulating wisdom by the bucketloads, so that the next time I go to the doctor, I won't be so blindsided by what they're saying, and will hopefully be able to ask relevant questions and actually make progress on things.
It's not the final thing I have to do to make things run more smoothly again - at some point all of that theory and supposition will have to turn into action, and I am sort of dreading that step already - but it's still vital. It's the 'getting my feet back under me' portion of adapting to change. The process I have to go through to go from "Hell's no: this is not happening again!" to "Ok: it's happening, let's deal... I know I can pull this off!"
Yes, I'm disappointed to find myself, 17 years later, under continued attack from so many various parts of my body. Yes, I'm frustrated as hell that, instead of improving, things just seem to keep getting worse and worse, and that I still haven't gotten to the root of these illnesses, or figured out a way to get rid of them, or how to achieve all the things I want to achieve in my life. It's beyond frustrating, so much so that when I went to the thesaurus just now to look up a stronger word, one that fit better, I couldn't find one. It's all of them - upsetting, disheartening, prohibitive, discouraging, defeating, baffling, hindering, depleting - every synonym, all combined together and multiplied a few thousand times. All of those words to the nth degree.
But, when I find myself here, at a place that is both familiar and shockingly not, faced with new diagnoses all over again, at least this time I've got some idea of how to get further along down the line: Stuff brain with as much as it can handle, take breaks in denial land as needed, and know that you can handle it, whatever comes.
3 comments:
Ohhhh, this sounds so familiar . . ."No, this is not happening," followed by brain-stuffing and experimentation, interspersed with more denial and despair.
I don't have as much trouble with the denial any more (almost 20 years of this means I've gotten used to being kicked in the stomach on a regular basis and learned that the faster I get to the research the faster I find ways to live with new issues,) but it's still tough, especially when doctors dump everything into the "oh, it's just the fibro" bucket.
Wendy - Glad to hear I'm not the only information-overload patient. And yes, when docs tell me it's JUST the FM, I want to punch them... there's no just about it, and if it's new to me, we need to figure out a way to deal with it.
I'm a reader too... I always go and try to find out as much as I can about the things that are possibly afflicting me (or anyone else I care about). The only thing is that I seem to reach a point where I just go into total overload... where suddenly I can't assimilate all the information and all the conflicting requirements. I have recently been diagnosed as pre-diabetic and hashimoto's thyroiditis but unfortunately they are both overshadowed by the scary stuff the immunologist is looking at at the moment. I wrote for the PFAM blog too and that is what sent me to your blog. g'day from one fibro reader to another!
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