The “But you always look so good” comments

August 23, 2013

I’ve heard it far too many times: But you always look so good when I see you. Or along the same lines, My brother doesn’t understand your illness because you always look good when he sees you.

I’ve written before about the masks we wear to hide how we really feel. That’s definitely part of it. I’m good at wearing a smile when I feel lousy, speaking positively when I’m sad, and in general hiding how I feel. Yes, that’s definitely part of it.

But then there’s the other part. It’s so obvious, and yet people seem to constantly miss it. It’s really quite simple: I don’t leave the house when I feel really crappy. That’s why no one sees me when I don’t look ok. When I’m out, it’s because I feel well enough to be out, and if I feel well enough to be out then I feel well enough to present as ok. On the other hand, when I’m so exhausted that I have trouble picking up the tv remote, when my brain fog is so bad that I mess up making a salad (which I actually did yesterday), when the pain is so horrible that walking to the bathroom is excruciating, then I stay home. If I stay home, then no one sees me. See, I told you it was simple.

The funny thing is, as simple as this concept is, it took me a while to realize the pattern myself. When I heard those comments, I just figured people weren’t being very observant. They were ignoring my pale skin, slight limp, occasional wince. It took me a while to realize that even though the symptoms are there and can be noticed, the really bad symptoms, the ones that are just about impossible to miss, are almost never seen by others. There’s been the occasional ex-boyfriend or my mother or a friend who I was visiting with, but that’s it. No one else has seen me when I’m feeling really, really bad. So how can I expect them to understand?

I used to respond to those comments by saying that I’ve learned how to cover things up, or that they just didn’t notice, but not anymore. No. In line with my new policy of honesty, I now tell them the truth: they don’t see me on my truly awful days. And then I offer to describe what those days are like. I feel better, and I think it’s enlightening for them. I hope it makes them think twice before they judge anyone else.

Sometimes it’s what you see. And sometimes it’s the absence.

4 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Taking out the trash is hard

August 16, 2013

That title sounds whiny, but I don’t mean it that way. It’s just a fact. When you have chronic pain and chronic fatigue, taking out the trash can be damn hard. I thought about that last night as I returned from taking out the 20130816_173920trash.

Usually it starts when I smell the trash. I have a lousy sense of smell, so if I’m noticing something, then it’s probably already really bad. This is the point when I’d take it out if I was healthy. If I don’t feel up to it, which I usually don’t, then I wait. The next day the trash is smelling a lot worse. I light a scented candle and throw open the windows. I tell myself I’ll take the trash out with me when I go out for something, but of course when I finally go out, I want to save my energy for the outing. So the trash has to wait. Finally the smell is so bad that I force myself to do it.

Getting the trash out of the trash can is tough. I pull at those handles and sometimes I have to stop and rest if the bag gets caught on the can. I carry the trash to my door, put on my shoes, grab my keys, and carry it all the way down the hallway. The trash is usually too heavy and awkward for me to try the stairs, so I wait for the elevator. Once in the basement, I have to lift the trash high to get it into the large bin. Then I take the elevator back upstairs, walk back down the hall, and enter my apartment with a sigh of relief. Putting a clean bag in the bin can wait.

I suppose I could take the trash out more often. That would help, because it would make the trash lighter. But it would also be worse, because it would mean more frequent trips down to the basement. There’s no good answer, of course. When you live alone, you have to take out the trash. I’m just lucky I don’t have to take it outside, especially in bad weather. Still, it’s a long haul down to the basement.

In general I try not to let the little things get to me, but sometimes I get so frustrated at not being able to do small things that other people take for granted. Even worse, people complain about not wanting to do things that I wish I could do! Taking out the trash isn’t glamorous, but it’s a lot better than having a stinking apartment for 3 days. I’m just glad I can still manage to do it, even if it’s really damn hard.

3 Comments | Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

The eny, meeny, miny, moe method of choosing a treatment

August 9, 2013

When a doctor presents multiple treatment options, my favorite question to ask is, “If I were your

Too many pills!

Too many pills!

sister/daughter/best friend, what would you suggest I do?” This usually makes them stop and think about things in a slightly different way. I preface it by saying that I know it’s ultimately my own decision and I won’t hold them to whatever they say. This has produced some interesting responses over the years.

Right now, though, that isn’t working. Right now I’m choosing among treatments in different specialties, so there’s no one doctor (that I know of) who’s familiar with all of them. I did ask the hematologist this question yesterday, which is how I decided to do iron infusions. But maybe I shouldn’t? Another doctor prescribed hydrocortisone (HC) for my adrenal insufficiency but my naturopath thinks I should keep taking Isocort. That doc isn’t familiar with Isocort. But then, I’ve also received a new thyroid-related prescription, NDT. I can’t do all of these at once, and maybe I shouldn’t do all of them at all!

It’s generally agreed that the thyroid can’t heal until the adrenals are properly supported, so if I’m going to do the HC then I need to do that before the NDT. Some say NDT won’t work if the patient is iron-deficient, so I guess I’d have to do that first. But again, that’s if I do these treatments at all. They all have risks of side effects. What if I do the iron infusions first and have some bad effect and it takes me a long time to recover, and that makes me put off the HC and NDT, which are both promising? Of course, the HC has lots of potential side effects that I’d really rather avoid, too.

It’s overwhelming. This is my body. This is my health. This is my life. I don’t want to fuck around here. It’s too important to just randomly guess. And yet, sometimes I feel like that’s all I’m doing anyway. Right now I’m looking at three new treatments. Those are in addition to my current supplements and my complicated diet. Maybe one or more of them will work. Maybe they’ll make me better. Maybe they’ll make me worse. But I have to try, right? Yes, I have to at least try.

Leave a Comment » | Decisions, Fatigue, Frustration, Healthcare, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

In the war of Brain vs. Body: body always wins

August 3, 2013

I just had to correct this post title. I wrote “brain always wins” by mistake. Wishful thinking.

Yesterday I went clothes shopping. Thanks to steroids and gluten-free diets and all sorts of other stuff, my weight

Yesterday's cause of today's pain

Yesterday’s cause of today’s pain

has fluctuated a lot. Two winters ago I was a size 14. Now I’m a size 6. Last year I muddled through. This year I had to give in and I managed to buy two pairs of jeans and a top. But I paid a price beyond dollars.

My mom came along. She’s a lot of fun and great company, so I was thrilled to have her with me. She’s also really helpful. She handles hangers and zippers and other difficult stuff. Even so, by the end, my body had had it. Today I’m still suffering for it. I’m in a lot of pain and I’m really tired (though not as tired as previous trips, so I think my supplements are really working!) It doesn’t feel good, but I know from experience there’s nothing at all I can do except give in to my body and rest, so that’s what I’ve been doing.

The other day I saw a promising new doctor. And I finally got the check from the insurance company. It was a good day! Then the next day, a friend won her own difficult insurance battle, finally getting coverage for her son. We want to celebrate, which for us means hanging out to talk about how wonderful it is! We may include desserts if we can find something we can both eat. It’s simple, but effective. So she invited me over to her place. She even offered me a gluten-free dinner. It sounded great, but I was still tired and in pain. I told her I’d get back to her.

What was I waiting for? Did I think the pain would go away in half an hour? I’ve had this pain for many, many years, and I know it doesn’t change that fast. How about the exhaustion? That’s newer, but I still know better. No, this was a case of wishful thinking. I wanted to go to her place, but I knew I probably couldn’t. I wanted to feel better, even though it was incredibly unlikely. My brain was ready to jump in the car and drive the short distance to her place. (She lives so close that she walks it, but of course I can’t do that.) My brain was already figuring out what time I should leave when my body gave me another shot of pain as a reminder that I just wasn’t going anywhere. I want to, but that doesn’t mean it will happen.

I’m trying to remain positive. I will see her another day. I hadn’t planned to go out tonight anyway, and this was last-minute. I could have just as easily turned her down because I had other plans or a date (another bit of wishful thinking.) Ok, other plans would be a lot better than pain and exhaustion, but you know what I mean. Watching a movie and eating popcorn isn’t the worst thing. Or maybe she can come to my place? I haven’t heard back yet. The point is, it is what it is and I can’t change it. I just have to accept it. Doesn’t that sound so zen and mature of me? I wish I always felt this way. Some days I get mad or sad. Sometimes I scream or cry. But today I’m handling it ok.

Because the thing is, I should have realized it the second she invited me over: in the war of Brain vs. Body, Body always wins. Always. Every time. So I might as well just accept it today.

I’ll accept it today, but tomorrow I’ll go back to fighting it with new treatments and more research!

4 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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