On chronic life and being good humans

I started this piece with Katie months ago for @PhDisabled but it’s Rare Disease Day so it is fitting that I pull it together now.

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It’s unlikely that you’ll have said these things since my usual readers are unfailingly thoughtful and kind but you might have heard some of them, and perhaps in the context in which they’re delivered to us.

Most days, I have a sense of humor. Wicked, yes. Pointed, oh yes. I do find the funny and the irony and the chuckle in most things so it’s often easy to shrug off another microaggression equivalent of failed expressions of concern. Most days. Then there are the days when @PhDisabled starts a conversation and reminds me of those thickly bitter moments that Katie (dealing with her own serious medical issues) and I scowl over.

What not to say to people with chronic illness:

Some of us occasionally express frustrations with living, isolated, with unremitting pain.  Surprised?  These people were.

You should try massage.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.

You should try acupuncture.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.

You should try this! It’s this healing water that your uncle’s mom’s cousin’s horse’s trainer’s sister drank once and it cured her cancer.
Revanche: Because any liquid can cure cancer. Also, I don’t have cancer. Just FYI.

Take home this plant, chew one leaf a day, it’ll make it better! It can’t hurt.
Revanche: It CAN HURT. You don’t even know what this plant IS.

You should rest more.
Revanche: More than 20 hours a day? How much more?

You should try vitamin B12.
Katie: Where did you get your medical degree again?
Revanche: Vitamins aren’t medication!

I could get hit by a car and die any day.
Katie: That really is the same thing as having a 66% chance of brain bleeding and being permanently disabled! Thanks for the perspective!
Revanche: Would you, please? But seriously, what possesses you to say such a thing?

You need to push through the pain.
Katie: Said only by people who have never experienced migraines.

You’re so lucky! I wish I could lay in bed all day!
Katie: You left out “in excruciating pain.”
Revanche: “Could”  is not the same as “have to”. For the love of …

Must be nice to only fill your car with gas once every couple of months.
Katie: Oh, yeah. Being stuck inside, unable to leave my house because of pain is a regular hootenanny!
Revanche: That’s how you look on the bright side? Unrelenting pain, one hand. Saving on gas money, other hand!

You have to be positive. If you believe this medicine will work, it will.
Katie: So that’s my problem!
Revanche: starts cursing in Dwarfish

But you look fine!
Katie: I’m sorry chronic migraines and brain masses don’t manifest like a broken leg in a cast. I promise I feel 400 times worse than I look.
Revanche: This isn’t the medical version of Dorian Gray’s portrait, we’re not hiding the imagery in the closet.

Said sarcastically: Why wouldn’t people want to be around you? You’re just a ball of sunshine!
Katie: I have enough anxiety about being the cheerful chronically ill person without you adding to it, thanks.

Your depression and suicidalism are just like the time I had a really bad cough, and I kinda sorta wished a car would run me over just so the coughing would stop.
Katie: Glad I’m not alone. Also, nope.
Revanche: Your face is like a really bad cough.

It could be worse! / You think this is bad? Just wait until….
Katie: As if chronically ill people don’t spend enough time doubting themselves, feeling like they’re exaggerating their pain, feeling selfish for even talking about their pain. Again, thanks for the perspective.
Revanche: STOP IT. As if it being worse isn’t among our worst nightmares, why the hell would you try to make us catastrophize? That’s NOT helpful. I also hate hearing this about anything not medical related for the same reasons.

If you’d go outside in the sun more often, you wouldn’t be so depressed. It must be God’s will./God doesn’t give you more than you can handle./Appreciate the roses and the thorns.
Katie: Shhhhh, stop talking now.

Stop thinking about it so much.
Katie: Okay, don’t breathe air.
Revanche: Don’t blink. Just stop blinking. Right now.

I think you underestimate yourself.
Katie: Trust me. I know my physical limitations better than you do.
Revanche: *growl*

Why don’t you … [insert their idea of treatment here]?
Revanche: I’m actually not obligated to justify my healthcare to you. Thanks.

What to say instead:

After a long spate of patronizing comments, I prefer people just keep their mouths shut, forever, but then again, there are some people who get it right.

Absolutely nothing.
Katie: Most times the only thing I need is an ear, an open mind, and a hug. Letting me talk about my fears and my experiences means so much more than anything you could say.

I don’t know what to say, but I think of you often and I love you.
Katie: Again, just knowing that you’re there for support is enough. I already know you don’t have answers. I’m not talking to you because I want you to solve my problems or cure my illness.

It’s okay if you need to cry.
Katie: Probably the hardest part of my life since my diagnosis has been the feeling that I need to always be The Inspirational Chronically Ill Person. Knowing that I can let my guard down around you, speak honestly about what I’m feeling, and cry if I need to… Well, that’s everything.
Revanche: And I may not believe you but it does help to hear it.

I’m going to the store tomorrow. What can I bring you?/I’m bringing dinner over on Wednesday. Would you prefer chicken or fish?
Katie: All too often I hear “Call me if you need anything.” Whether it’s due to pride or the cynical thought that no one actually means what they say, I never call. If you know a loved one is homebound and unable to cook or perform basic tasks, offer to help them by making a plan to cook for them or run their errands.

Revanche: “Call me if ..” has proven over and over to be a verbal crutch. The people who mean it ask for concrete details like “Do you have enough food for the week?” or “Would it help if I [did this or that thing]?”  If I think you’re sincere, then I will tell the truth. If it just seems like a conversational throwaway as it often is, I’ll just struggle on with my day because I’d rather skip the disappointment when the follow-through falls flat.

I’d love to spend time with you, would you be up for it [this day/time] ? (And BE ON TIME. And don’t make a mess for me to clean up!)
I’d like to see you this weekend, are you up for a visitor? I’ll bring lunch.
Revanche: Assume that I would also like to spend time with you but that it’s possible I won’t be able to even sit up.  One of the most frustrating things is the thoughtlessness of those who spout how much they miss me but can’t be bothered to think through the impact of their social visit where they show up late, strewn things about as they sift through the house as if bored, and left things in utter disarray.

Would you like to take the stairs or the elevator?  (And respect my answer.)
Revanche: Being aware that the difference between taking a flight of stairs vs the elevator and offering the choice tells me that you understand there are things, normal things that normal people do, that I can’t always do. Without making a big deal out of it, offering the choice is an enormous relief when I can’t bring myself to remind people for the jillionth time that I can’t do everything they can.

And don’t get me started on the patronizing fatheads who think it’s their life mission to help everyone they deem disabled whether or not that help is needed or welcome.

How are you feeling today?
Revanche: There’s a subtle, but significant, difference between “how are you?” and the more specific phrasing.

To err is human …

We know that people simply don’t know how to relate to those of us who live in constant, unremitting pain and we can forgive the occasional gaffe. It’s just useful perspective to know that for every one foot in mouth moment you observe, it’s about the 300th time we’ve heard that comment.  Maybe just that week. We’re already exhausted, any bit of consideration and thoughtfulness is appreciated.

Related reading:

Illness Etiquette
A Storify: Discussing ‘On Pain & Celebration’

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Just a little link love: the All Sorts Edition

LinkLive

CAREER + MONEY THINGS

Entrepreneurs vs not

Becoming a manager, not a producer

confidence is not (necessarily) competence

Running out of years to get rich? Since they didn’t bother to study women, I’m gonna say I have time.

Jamaila’s got a good system for baby clothes.’

Go figure, upper management for the porn industry is terrible

FUN THINGS

Exercise + age

Things You Shouldn’t Wear After 50

MEEHHH!!

Did you grow up in an anti-vaccine environment?

If I hadn’t finally watched Hunger Games I wouldn’t have understood this either

Holy moly kittens

INTERESTING THINGS

Roger Angell, on old age

I don’t see the point in renaming it but if it’s necessary to make Chronic Fatigue Syndrome something you take seriously because it’s a real thing…

Does any of this birth order stuff apply to you? Not to me.

The intersection of Ida Wells and Kanye West

A resource for travel planning

Richard Branson gets nervy doing public speaking? Really?

Why on earth wouldn’t you vaccinate asks someone whose cousin died of measles. Why not indeed.

Psychological stress messes with your ability to deal with physical pain. Makes sense.

Pandas playing, always a classic

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Italia: The less frugal adventure

ItalyPost

Long have we been talking about going to Italy, long has it been out of reach.  Until we recently made it happen.

I wanted to take a leisurely time to sightsee in Florence and the Cinque Terre region, but our time constraints put paid to that notion. We did a bit of criss-crossing through the country to keep it interesting instead.

We skipped the rental Ferrari experience, instead opting to put the Italian rail system through their paces for all the big hauls. I bargain hunted for train tickets, carefully mapping each stage of our journey so we could buy tickets on discount sites before departure. Cheaper AND nicer trains = two thumbs up (but not that cheap, it still cost almost $300 for the two of us just for that part of transit).

The rides varied from excellent to terrible.

Italo, privately owned rail: Ferrari inspired design, air conditioned cars with free WiFi, ability to reserve seats and second class was as good as first from what I could tell. SUPER fast. Bonus: space agey bathrooms! Clean and sleek.

Frecciarossa, government owned rail: standard type commuter design, air conditioned cars with free WiFi, comfortable and relatively quiet. Didn’t use the bathroom so not sure how that was.

Regional rail: terrible. Just terrible. We were crammed like sardines in a botulism ridden tin, our car had no air conditioning for a 2+ hour ride in 80+ degree heat. People were sitting on the stairs in an effort to avoid passing out. Bonus: we survived. We saved a lot of money as these were the cheapest of the lot but I would have been happy to pay the $200 for a private car had I expected that. (Then again… I’m notoriously cheap sometimes…)

So obviously we compromised where we didn’t care much about the thing to save money but NOT on food. I simply wasn’t going to make the effort to go on such a big trip while uncomfortable AND deprive myself. We brought a lot of snacks for travel days and lunches, planning to have breakfast at our hotels where they were providing breakfast without extra cost, and eat dinner out.

Experience-wise, that was the best choice I think, as I picked places with pretty fantastic breakfast spreads.

One of four buffet tables for breakfast

We, not even kidding, breakfasted for three hours one morning! We might have looked like gauche and greedy Americans but I never got that feeling from the amazing and so-very- friendly breakfast servers. My money is on they were humoring the then visibly pregnant lady. :) By the time we left, we had bonded with Maria who was super excited about LB and had to give us hugs before we left. We were both disappointed that we wouldn’t see each other (and that glorious breakfast!) the next day.

We got to know some awesome restauranteurs of smaller establishments, and were repeat diners at the best of them. Dinner was a serious business. :) I didn’t enjoy any wine but I rarely care about that. I did, however, feel deprived over the prosciutto! Still: pastas, fresh fish, pastries, pies, random “fast food”, pizza … So. Good. So very good.

One of the few times I saved room for dessert. No regrets. Ok, maybe a little regret.

Travel Costs

We managed to cash flow both trips even though we spent more than annually budgeted for travel back in 2013 and a also bit more, well, not recklessly but more freely than usual. I chalked it up to the Pregnancy and “when are we going to do this again?” Tax.

Like the London trip, using our biggest pot of miles, British Airways, was pointless.

I did redeem a truckload of Chase Rewards points. I had the option of using them to book flights, hotels and car rentals directly for an extra 20% in points value but none of their options were any good for our destinations. We weren’t driving and none of the areas we planned to stay had anything useful on the list of redemption hotels.

The best value was booking lower cost, family-run hotels, then redeeming the points for cash to pay for them. All told, we cashed in enough points for about a thousand dollars which nicely defrayed the cost. And we earned yet more credit card points for charging the hotel bills – the circle of rewards points life!

We also used a big whack of our Starwood points for two luxury hotels priced at remarkably low redemption costs for the category rankings. I’ve never stayed at a Category 7 hotel and I’m not sure if we will again any time soon.

That was about twelve hundred dollars of value. If we didn’t pay with points, though, I’m sure we would have just stayed at cheaper hotels.

The fanciest hotel yet: a built in TV. In the bathroom mirror.

Fancy: that is indeed CNN you see in the television built into the mirror.

The weather was miserable for much of the trip, going from an unbearable sweltering to a grey gloom and downpour. Packing extra lightly meant I was ill prepared for both extremes, and even more so because I had put on another few pounds before leaving. I never knew what a difference a few pounds around the waistline made and I’ll never take my reasonably stable weight for granted again, if that ever comes back.

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Taking a minute to self-evaluate

My baseline for “tolerable pain” has inched up yet again. At least half my body is always aching, on fire, swollen, immobilized or whatever fresh indignity has dropped in for a visit.

But I’m living on pain meds just to stay at that baseline. When “not screaming in excruciating pain” is your new “I’m OK”, you start questioning life / choices.

Getting up to 4 hours of sleep per 24 hours, in half and one hour increments feels amazing.

I’m forcing myself to drink as much water as I can hold. Since having LB, and pain shooting up as dramatically as a game winning ball getting spiked, I’m struggling to eat and drink normally. I even made up a little ditty about water to remind myself but I’ve already forgotten the song.

My fingers were dislocated this week and apparently this isn’t surprising to my doctor. Hmm. They just keep on popping out everyday now. Worry when they turn blue, she says. Well….. OK…. I will.

I’ve been alternating between a headache or nausea for days. What’s up with that?

I’m really impatient with my slow healing. Like I needed a whole other heap of pain to make life interesting.

I’m even more impatient with my brain fog. It’s frustrating that I can’t comprehend the numbers in a brief accounting sheet, that half the emails I read have to be saved for later rereading. And re-rereading.

Seamus needs room to play and I hate that we don’t have a yard for him. Expensive way to be able to toss a ball for the dog but it makes me want a house and respectable yard for him. Most days I’m shuffling by inches so PiC does all the walks and more than we’d like are more functional walks than fun. We’d like to do better by him. And since I can’t take him to the park… A park should come to us. In the form of a house and yard.

On the other hand, while I wouldn’t want to buy a house in our current area, I can appreciate the convenience of the location. We have a fair number of grocery stores and food choices, and a decent array of transit. We’re not a good place to visit but it’s a decent starting point to get to somewhere interesting if you know what I mean.

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