Going public is like coming out over and over

September 13, 2017

Once upon a time, no one knew I had health problems unless I told them. Ok, that’s not entirely true. There were signs. It’s just that most people didn’t pick up on that signs, or I could shrug them off as an injury or something. It was easy to lie.

Then I decided to write a book.* Now, when you Google my name, that book comes up. And it’s all about having chronic illnesses.

This has been such an interesting experience. It makes my journey public in a way it never was, because even though most people don’t Google my name, I know that they could. And that leads me to think and speak about my health in different ways.

Take last night, for example. I was giving a presentation in front of a group on a different topic entirely. Someone asked a question and I was answering it with a few examples. And then I mentioned medical stuff as a relevant example. There was was, in front of a small group, pointing at a screen, and looking completely healthy except for my knee braces. And I felt odd mentioning my health, but it was relevant. And I even said, “this is no secret – if you Google me, you’ll see the book I wrote on this topic.” And I saw some eyes move south to those knee braces.

It’s like coming out. I joined an online dating site a few months ago. I was taking a walk with a neighbor and she was asking me about it. We didn’t know each other well, but were friendly. She asked if I had met anyone and I said I’d met a couple interesting people. She asked about them, and as I mentioned the man, everything was normal. When I mentioned the woman, I saw her hesitate. I watched her brain churn as she processed that bit, and then we moved on. With other people, where there’s context, I might directly say that I’m bisexual. But no matter what, if the topic is going to come up, I need to come out over and over again, because whether I’m dating or single, no one will know I’m bi if I don’t mention it.

And every time, I wonder how the other person will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Just like mention my health problems. Every time, it’s necessary to specify what I’m talking about. Every time, I wonder how they will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Sometimes I want to wear a sign on my head, or print business cards to hand out: YES, I HAVE CHRONIC ILLNESSES AND NO, THE DETAILS ARE NOT YOUR BUSINESS. Except that now, with the book, some of the details are out there. So they could be your business. Still, it doesn’t mean I want to talk about it all the damn time.

But you see, there’s also the part we don’t usually think about: it’s freeing! Every time I start to question whether or not to mention something, I remember, it’s out there anyway, so why not talk about it? Is it ok to share this? Might as well. Is this a secret? Apparently, not any more.

Again, it’s like coming out. I don’t have to watch my pronouns anymore. I can just speak about past loves and lovers like anyone else would. Sure, I have to use my judgement for safety. Yes, some people will be jerks, but there aren’t any secrets.

That isn’t to say I don’t have limitations. I still write things on this blog, for example, that I wouldn’t say publicly. There’s definitely something to be said for having a pseudonym. Still, to be able to speak publicly and not question myself constantly is HUGE!

It also means more people in my life know about my health issues. I’m more open about it on Facebook because, after all, they see me promoting my book. There’s no question about it at all anymore.

Coming out about orientation, health, or anything else is a personal choice. This isn’t something I would have done even just a few years ago. I am so glad I have. For me, right now, this was definitely the right move. If it’s not right for you, though, that’s cool, too. You have to do what works for you.

Have you been public about your health stuff? How has that gone for you? I’d love to hear about it in the comments!

*It’s frustrating that I can’t tell you what the book is. I want to so badly, but that would defeat the purpose of having a pseudonym here.

Leave a Comment » | Decisions, Educating, Milestones, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Feeling blah

August 30, 2017

This has been an odd summer for me. The thing is, I’m not sure how much of that is because of my chronic illnesses, and how much might be coming from something else.

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For one thing, the weather has been unusually not-too-horrible. I can go outside! On top of that, I seem to be less sensitive to air pressure and humidity than I have been in the last 10 years or so. More ability to go outside! That doesn’t mean I can always go out, but on days that would have caused extreme pain or trouble breathing before, I’m actually doing ok.

On top of that, for the first time since I was 18, I live in an apartment with central air conditioning. This. Is. Awesome!

Because of all of that, I have less fatigue and less pain than in previous summers.

So why do I feel so blah? Why have I been a bit moody? Sure, I still have more pain and more fatigue than at other times of the year, but is that it? I keep thinking it is. I keep thinking that when summer is over, I’ll feel better.

It’s not like me to be so uninterested in certain things. I have been trying to do some part time work, but I’ve barely done anything for my fledgling business all summer. At first that seemed ok. I had worked too hard in the spring and was burned out. So I took a break. The problem is, I still have no desire to go back to it.

The thing that really worries me, though, is that I’m wondering if maybe I shouldn’t get a dog after all. You regular readers know that I’ve been trying to get a dog for more than 2 years, with one problem after another cropping up. And now I wonder if a dog is too much work and too much responsibility for me. And I love dogs, but are they worth it?

It occurred to me that these are symptoms of depression. But I’m not depressed. I’m still very happy. I’m very interested in other things. I have been excited to try some new crochet patterns. Last week I finally picked up a project that I had let go of for over a month, and now I’m excited to work on it again. I’m loving spending time with friends.

So why the hell am I doubting if I should get a dog? Why am I avoiding work?

I think it’s the summer effect. This summer isn’t as bad for me this year, it’s true. But I think it’s affecting my mood anyway. Otherwise, this just makes no sense.

In 3 more weeks I should know.

A lot of people don’t like working. That’s ok. But not wanting to get a dog? If that keeps up, I’ll know something is truly wrong.

6 Comments | Fatigue, Frustration, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Finding clothes that fit with chronic illnesses

August 23, 2017

I went clothes shopping yesterday. Ugh. Chronic illness makes it so much harder to find clothes that look and feel good, and not only in the obvious ways.

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The obvious ways are simple: shopping itself leads to fatigue and pain. Shopping is hard! There’s the walking, the reaching for things, the taking clothes on and off. If I dare to try on shoes, I’m likely to trigger my foot pain, which is already worse than usual from all of the walking. It’s easy for something to irritate the skin. But that’s not what I’m talking about.

I’m not talking about the shopping part of shopping. I’m talking about the finding clothes that actually look and feel good part of shopping.

Shirts are hard. Prednisone caused my boobs to grow too big for my frame. At 5’1″ and 126 pounds, I shouldn’t be a large 36DD, bordering on 36F. That’s just ridiculous. Even when I lost weight and was down to a more reasonable 116, my boobs were still a 34DD. The t-shirt I’m wearing as I write this looks pretty good, though the neckline pulls away from my body thanks to my big boobs. A lot of other tops just don’t fit. My boobs pull the fabric up and away. Or the style is meant for smaller women. But I’m 5’1″, so a larger size is often too long.

Coats are brutal. It is almost impossible to find a coat that is big enough for my boobs and not ridiculously long in the sleeves. If the sleeves fit, usually the shoulders are too tight and it’s hard to zip/button up.

Bras are tough because of my scoliosis. In addition to the curves themselves (3 of them, thanks Mother Nature) I also have a short torso. That makes bras shopping much harder. It makes it harder to buy shirts, too.

Shorts are easier, as long as I don’t get too self-conscious. Because it’s pretty obvious that the legs of the shorts aren’t even. There’s that scoliosis again. It caused one hip to turn and the other to pull up. It’s obvious on skirts and dresses, too, which makes me sad sometimes.

And then there are shoes. Oh, the shoes! Sneakers are no problem, but it’s summer, and I would love to wear sandals. I need sandals that:

  1. Take my orthodics.
  2. Don’t have a split toe area – my orthodics are full length and need to stay that way. They go past my toes.
  3. Have a wide enough opening in the toe area so that there’s no pressure on my toes even when they become very swollen, which they often do in the summer.
  4. Have an adjustable strap across the top of my foot, as close to the ankle as possible.
  5. Are made for a very narrow foot.

Believe it or not, I have found sandals that work! Unfortunately, they are $170, which is totally not in my budget. *sigh*

Yesterday I was shopping for two things: bras and pants. For the first time, shopping for pants had an additional challenge: accommodating my knee braces. You see, I only got these knee braces in May, so I haven’t had a problem. There were a couple of cooler days in the spring, so I wore leggings under the knee braces – and immediately learned that’s not a great option. It works well enough, but the braces don’t stay in place as well and I was constantly tugging at them.

Friends keep telling me to wear leggings and skirts all winter, but I don’t want to. Aside from the braces slipping, I don’t want to wear skirts when it’s cold and snowing! Yes, it’s possible to stay warm that way, but honestly, I’ll just be more comfortable in pants.

I got lucky. As a short person, wide-legged pants make me look even shorter. But finally, FINALLY the style changed to skinny jeans! For the first time, I look fabulous in jeans! They show off my butt – one of my nicer features – and don’t make me look shorter than I already am.

And I can’t wear them anymore. I hate this. Sure, I’ll pull out a pair for a date occasionally, and skip the knee braces. But on a day-to-day basis, I will need pants that fit over the braces.

I bought 2 pairs yesterday. One has wider legs and doesn’t look amazing, but it’s ok. The other has narrower legs in a stretchy material and looks better – if you ignore the bumps that are visible in the knee area. I don’t love either, and they cost more than I’d like. Maybe I’ll return them. I’m not sure yet.

I have accepted many limitations due to my health. And I understand that I will never be able to ski, hike, or go skydiving. No more riding a bike, spending an entire day out with friends, or having a full time job. But is it really so much to ask that I can wear “normal” clothes?!

Apparently it is.

2 Comments | Expectations, Frustration, Limitations, Rants | Permalink
Posted by chronicrants

When triggers feel absurd

August 18, 2017

Some triggers seem reasonable. If I fall and land with any pressure at all on my hand or wrist, my wrist pain fill flare for days, weeks, or months. If I exercise too much, my pain and fatigue will flare. Some triggers make sense but piss me off: like eating lunch.

Yes, eating lunch is a big trigger if I don’t do it right. As it turns out, eating and digesting food takes a lot more physical energy than I would have every guessed back when I felt healthier.

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If I eat standing up, I’ll feel sick. If I eat too fast, I’ll feel sick. If I eat at the wrong time, I’ll feel sick. If I eat and don’t rest afterward, I’ll feel sick. And “sick” can mean a few different things.

Take Wednesday for example. I had a doctor appointment at 1:40. I needed to leave by 12:40. But I wanted to make a quick stop at the library on the way, so I figured I would leave at 12:25. I usually eat lunch around 1pm, but instead I ate at noon, and I ate quickly. The second I finished eating, I ran out the door. Oops. I ate fast *and* didn’t rest afterwards. The nausea and fatigue set in fast. I was in pain. I felt horrible. But I had to get to that doctor appointment.

I pushed through. I didn’t have the strength to multitask, so I didn’t turn on the audiobook I wanted to listen to. I focused. I managed to drive safely but miserably. I went to the bathroom before I checked in, and a lot of my lunch left my system – not properly digested. Then I asked to wait in an exam room instead of a waiting room. Thankfully, they had a room available and I was able to lay down.

After laying down for a bit I felt much, much better. The nausea was gone, the fatigue was improved. Still, I took it easy the rest of the day. My appetite didn’t come back until the following night.

I know that lunch wasn’t the only problem, just the final trigger. My stress about what’s happening right now (Nazi marches!?!) and the weather (very humid) primed me. It was lunch that set me off.

It pisses me off that I can’t eat an early, quick lunch and then run out the door. But then, I also should have known better. I knew that could be a problem, but I did it anyway.

Still, I feel good about one thing: instead of pushing through and trying to “brave it out,” I asked to lie down. And it made ALL the difference.

Learning to ask for what I need has been invaluable. I don’t always do it, but when I do, I feel good about it. Now I just need to find ways to eat lunch before a doctor appointment that don’t have such terrible results. (And yes, eating after the appointment would have been just as bad – I have a very narrow window to work with.)

2 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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