Cranky Fibro Girl

Harnessing the healing power of snark

What Not To Say: Part 3

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I really appreciate all the comments you guys have been leaving me the last couple of days, as well as the fact that my ranting has not driven you away. 🙂

If you’d like an additional perspective on this situation, the awesome Lynne Morrell has written a companion piece to this series which lists things you can do to help someone living with a long-term illness.

And so, without any further ado, I give you Part Three of What Not To Say:

5. Appointing yourselves as our personal Director of Information.

Attention healthy people: On behalf of chronically ill people everywhere, I would like to take this opportunity to tell you to STOP RESEARCHING OUR ILLNESS FOR US!

We have all the information we need, thank you very much.

We know exactly how sick we are. We know what treatment options are available to us. We know all the bad things that can happen as a result of our particular illness, because we are living through them every day. We are working closely with our doctors, and are following the treatment plan that works best for us.

It may not look like it from the outside, because we aren’t doing things exactly the way you would do them, but I promise: we are already doing everything that can be done.

Oh, and while we’re on the subject? Please also stop telling us about all the additional awful illnesses you’ve found that match the symptoms we are having. We already have enough to deal with; we do not have the energy or the resources to worry about something new that, more than likely, WE DO NOT HAVE.

This kind of research may be a nice, intellectual exercise for you, but it just causes massive stress for us. It is also frustrating to be treated as though we have no idea what we’re doing, when we are the ones living with this illness-not you-and all we are ever doing is working to get better.

So please, just keep this information to yourself, because we don’t want it. Otherwise, don’t be surprised when we strangle you with your own computer cables. Because you deserved it.

What Not To Say: Part 2

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Alrighty then. Now that I’ve most likely chased off my five remaining readers with my intense and unfiltered pissiness, I guess there’s no reason not to keep right on going with it. So this morning I present my next installment in the ongoing saga of

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

3. Expecting our recovery to be linear and predictable.

This occurs whenever we’ve experienced a handful of “good” days, and then suddenly go back to feeling bad again.

What you say:

-“Oh no-what happened?”
-“What did you do?”

What we hear:

-“What did you do wrong?”
-“Wow, how’d you fuck this one up?”
“It’s obviously your fault that you’re not feeling better anymore.”

Um, no-it’s not. Healing is messy. Healing is not pretty. Healing does not follow a nice, tidy, predictable path that you can plot on a graph. Healing has no cohesive form. Healing is primal and cuts right down to the bone. Healing brings up all the dark, nasty, unpleasant, icky places-that’s what’s being healed. Healing has its own timetable, and works on its own schedule. Healing doesn’t give a rat’s ass about when you feel you SHOULD BE WELL ALREADY, DAMMIT! Healing just goes right along doing its own thing, often in spite of you.

Having one good day means nothing, except that in that particular moment, we are feeling okay. It is no predictor of anything; there is no ongoing meaning that can be extrapolated from it. It just means that right now, we are feeling good. But there’s not one single thing, good day or not, that will prevent us from feeling utterly miserable in the very next moment. And, once again, that doesn’t mean anything either.

So whenever we’re out there, bashing around, trying this, that, and the other, feeling good, feeling bad, experiencing utter unpredictability, randomness, and chaos, remember: This is what healing looks like. Please don’t attempt to hold us to anything, because right now our lives are in constant flux, from one moment to the next. There is no constant for us right now.

4. Pushing us on

What you say:

-“I really think you’re on the upswing now.”
-“I’m praying for a complete and total recovery/miraculous healing/some other extremely specific outcome for you.”
-“We’re gonna get you back to your old self again really soon.”

What we hear:

-“You need to hurry up and get well.”
-“Where you are right now isn’t good enough.”
-“You need to be somewhere other than where you are right now.”
-“Only this Very Specific Outcome that I have completely detailed in my mind is acceptable for your ‘healing’; nothing else will do.”
-“Your healing has to look a certain way in order to be ‘good enough’.”

Oh my god, this is SO. MUCH. PRESSURE on us. Because, as I might have mentioned once, or twice, or eleventy billion times, we have absolutely no control over this healing process that is taking place inside of us.

We have no idea what anything will look like once we get to the other side of this thing. And feeling like we have to somehow make our healing live up to whatever it is that you’re expecting from us, sometimes just makes us want to stay sick, because that would be a whole lot easier.

We very much appreciate your care and support, but we really need it to come in a form that is much easier, gentler, and more open-ended. Statements like,

-“I’m holding you in the light.”
-“I’m sending you lots of love and healing energy.”

are very gentle, supportive phrases you can offer us, if you are so inspired.

This concludes today’s rant. We now return you to your regularly scheduled day.

I Suck, Thanks For Asking

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I’ve learned a lot over the past 10 months as I’ve dealt with all of my ongoing health problems, but the one issue I want to address in my next few posts is this:

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

Because unfortunately, I’ve had an awful lot of experience in this particular area of late.

And so, in no special order, here we go.

1. “How are you doing/How are you feeling?”

This most likely comes as a surprise to you, because you probably feel it is a sign of your care and concern to ask this question. But speaking on behalf of chronically ill people everywhere, this question just makes us feel worse. And I’ll tell you why.

Because we are shitty. And we are TIRED of having to talk about how shitty we are all the damn time.

So if you know someone who is living with a long-term illness, and you’re ever wondering how they’re doing, DON’T ASK! Instead, just go ahead and assume that they currently fall somewhere along the following Scale Of Shittiness.

10-we wish that we were dead; we don’t understand how someone can continue to be alive while experiencing such excruciatingly unbearable pain

5-able to get dressed and sit up, but not much else

1-able to function at about 50-75% of our pre-illness ability; pain is mostly managed, but still felt; and most likely we are having to deal with some new physical problem (migraines, allergies, infections, etc.) due to our compromised immune system

So remember, when you catch yourself asking us how we’re doing that, even on a “good” day? We’re still shitty, and we’re sick of talking about it. And when we’re not shitty any more, we’ll let you know. Trust us.

2. Asking us to mathematically quantify our illness and recovery for you

What you say:

-“So, did your doctor give you any kind of time line for when you’d be over this?”
-“On a scale of 1-10, where are you today?”
-“In comparison to [some other day], where would you rate this day?”

What we hear:

-“Why aren’t you well yet?”
-“You’re still sick-geez!”
-“What’s wrong with you?”
-“You must be doing it wrong.”
-“Please ‘spin’ your process for me in a way that I can understand, and that will make me feel better.”

And, most especially, “It is really upsetting me that you are so sick, because it reminds me that this very same thing could happen to me/that I am totally powerless in this situation. But I don’t want to realize that, so you really need to hurry up and get well so that I can feel better. You need to stop upsetting me by being so sick.”

HELLO! We barely have enough inner reserves to wake up every morning and face the day. We do NOT have the energy to take care of your feelings on top of everything else, nor is it our responsibility to do so. If you’re upset by our illness, then go away and figure out some way to DEAL WITH IT YOURSELF! Our illness is not about you.

That’s probably enough for today. Stay tuned for more on this subject later in the week.

On My Way To Winning “Coaching Client Of The Year”

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Here’s an excerpt from today’s session.

My coach: “So, how are you doing?”

Me: “Not so good. I’m feeling really bad physically.”

My coach: “What’s up?”

Me: “Well, I keep thinking that maybe I don’t actually need to keep taking Ibuprofen for my arthritis. So I keep stopping, and then I’m fine for a few days, and then I start to hurt again.”

My coach: “Why don’t you want to take your medicine?”

Me: “Because for some reason, I just think that I should not take medicine. Also, I just want this to BE BETTER, DAMMIT!”

My coach: “Well, isn’t it better when you take your Ibuprofen?”

Me: (blows a giant raspberry into the phone)

Blog, Blahg, BLAARRGGHH

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So you’ve probably noticed that it’s been kind of quiet around here lately. Even though I’ve been moving through so many different situations at what seems like the speed of light, for the first time in my 35 years, I seem to be out of words to describe what’s currently going on in my life.

I haven’t really known how to BE in this place, because always before, even if everything else fell apart, I could always fall back on a cushion of words to soften the blow. So I turned to one of my tried and true coping strategies, namely; “When in doubt, freak out.”

Because I am nothing if not generous, not to mention an excellent Drama Queen, I decided to share the freaky love with my coach during one of our sessions.

“GOD,” I announced, in my best, quivering, innocent-victim-of-the-universe voice, “God has taken all my words away! The one thing I most loved to do in the world, and now He’s taken it away from me for no reason!”

In what can only be described as a Superhuman Exercise Of Will which most likely led to severe internal hemorrhaging on her part, not only did my coach NOT laugh at me, but somehow she was also able to ask me helpful, non-mocking coachful questions to help me work through this issue.

“Well,” she asked, “does everything you write on your blog have to be funny?”

“Uh, DUH! YES!!” I replied. (Aren’t I just a dream client? Don’t you want to coach me too?) Fortunately she has raised two children, so she never takes snottiness personally.

“OK,” she replied, recognizing an Intractable Brick Wall Of Stubbornness when she saw one, “think about this. You had a plan for your blog when you started it three years ago. But you’re not the same person you were three years ago. Think about everything that has happened over the past year. So what if you could allow your blog and your writing to change, and reflect who and where you are now?”

She makes a good point. Especially given the fact that, if I had to give it a title, the theme of this past year would be,

I have hurt, in some way, every single day, for the past eight months.

Eight months of sickness, trauma, my life being completely out of my control, and pain.

One day last October I lost my health. Not because of anything I did or didn’t do. Not for any logical, rational reason. Just ‘cuz.

Overnight, I lost the ability to be the person I had been, and do everything I’d been doing up to that point.

This is the hardest thing I’ve ever had to deal with.

I never knew pain could hurt like this.

And even though I seem to have reached a place where the original illness is gone and the side effects are more or less managed, who’s to say they won’t show up again one day, out of the blue, for absolutely no reason at all? My body, my mind, my emotions, they are all tied up in knots and braced against more pain. Because I remember the pain. And I don’t know if I could bear to go through it again.

This was, and continues to be, a huge trauma for me. And I really don’t know how to be with it.

But I am still here. I do show up every day, even if all I do is open my eyes in the morning and acknowledge that I’ve arrived at the beginning of another day.

And maybe, just maybe, that’s enough.

Update

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I’m sorry I haven’t been on here much lately. I’ve been having a lot of health challenges.

The good news: No problems with C DIF since I finished my medication in December, and they didn’t find anything wrong on any of my blood work.

The bad news: The reactive arthritis is still going strong, and could be here for 12-18 months.

They gave me some steroids last weekend to help with the inflammation, and that helped bring the pain down from a 9/10 to around a 1 or a 2. But being in near-constant pain for the past 7 months has just really ground me down emotionally and mentally, as well as physically. It’s hard not to go to the dark place in my thoughts when I feel so bad for so long.

So I’m currently spending all my time trying to figure out how to waterproof my computer, my knitting, and all my books so I can live in the bathtub, as the water helps take all the pressure off my joints.

Any good thoughts would be much appreciated 🙂

I’m Not Dead Just Yet

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You may have noticed that lately, I appear to have dropped off the face of the earth. Unfortunately, this is due to my having had a pretty major relapse in my recovery from The Autumn Of Illness. Thankfully, there has not been a return of The Hostile Alien Bacteria. But everything else-the arthritis, the fatigue, the feeling like I’m being pulled naked across asphalt all day long-that’s all back.

I finally had my first pain-free day in about a month last Sunday. And I’m tentatively optimistic, because I’ve now had 3 in a row.

So hopefully I should have a little more to say around here. I appreciate everyone sticking around while I’ve peeled myself up off the floor yet again. 🙂

Still Suffering, After All These Years

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Every so often I toy with the idea of going back to school and getting my Ph.D. in Spanish. But I never do, and I think I’ve finally figured out the reason why. Apparently, I’m already doing a post-doc in Suffering and Doing Things The Hard Way. Or, to be more accurate, I’m doing extensive research into how to unlearn this.

Back when I was about to turn 29 and I saw the rest of my life stretching out before me as an endless procession of unhappiness and dissatisfaction, I decided that I had had enough, and by God, I was GOING TO FIGURE OUT HOW TO BE HAPPY! So I hired my very first coach and got to work.

Now, 6 years later, I have completely transformed myself and my life. And what’s more, I’ve gotten really good at no longer staying stuck in anyplace where I’m suffering emotionally. This is not to say that I never have hard times or never feel anger, sadness, disappointment, and the like. But now I know how to feel what I’m feeling and just let it be without making up all kinds of stories about What This Means, and I have lots of support, and resources, and skills, AND I know that if there’s something I can do to help myself feel better, I can do it. So I’ve gotten really skilled at navigating the flow of all of my emotions.

Unfortunately, the same cannot be said for those times when I’m facing any kind of physical suffering. Anytime I’m faced with physical pain, it practically takes an act of God for me to realize that maybe, perhaps, there might be a way for me to do things differently and actually feel better.

And apparently the Universe has decided that it’s finally time for me to “get” this, because it’s bringing up those final few places in my life where I’ve had trouble really getting things to work well, and they are all somehow tied into some kind of physical issue.

[Read more…] about Still Suffering, After All These Years

The Word Of The Lord

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Since January 1st of this year, Marianne Williamson has appeared on Oprah and Friends radio each afternoon at 3 pm to teach A Course In Miracles. I first went through the Course about 5 years ago, and I thought it would be a really neat experience to go through it again under the guidance of Marianne Williamson, whose work I really admire.

I’ve been doing the daily exercises, as well as practicing applying the principles to my everyday life. Yesterday was a hard day, because I was dealing with a lot of health challenges-AGAIN-and it was making my arthritis flare up-AGAIN.

So I prayed, “Dear God, please help me. I need a miracle.” Then I got really quiet and listened.

I felt guidance and support come in, and I could tell that it was God because it was loving, kind, and gently amused with me.

“Dude,” it said, “take some pain medicine.”

Oh…right.

The word of the Lord.

Thanks be to God.