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.

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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 fitĀ overĀ 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.


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.)


When friends have chronic illnesses too

August 8, 2017

The first couple of years in my chronic pain support group, I got a lot of knowledge and support from the group. But now, what I get out of the group more than anything else is friends who understand.

It started slowly, with a couple of conversations after the group ended. Eventually, two of us decided to get together. Then we kept hanging out. That emboldened me, so I invited another potential friend to hang out. Then another. I haven’t stayed friends with all of them, but the ones I have kept in touch with are now valued friendships.

It’s not all rosy. Having friends with chronic illnesses can present its own challenges. We cancel on each other constantly. I invited a group over to my place. 6 were going to come. 2 showed up. Everyone else didn’t feel up to it at the last minute.

And speaking of logistics, it’s so great to have people to hang out with on a weekday! Being home so much can be isolating. Not working is lonely and makes me feel unproductive. Having a place to go and someone to see, even just once or twice a month, makes a huge difference.

Now on the flip side, when I’ve been the one to not show up because I don’t feel well, I know they understand. I don’t have to explain, make excuses, or apologize. It’s totally fine. And that’s awesome.

Of course, we don’t always understand. No two illnesses are the same, even when you have the same diagnosis. We share what helps us and what doesn’t, which is great. But sometimes there’s a bit of envy, frustration, and defensiveness, too. Why is she complaining about having trouble walking when I can’t walk at all today? Should I tell her about my pain when I know hers is even worse? I wish I could work/travel/have kids/have dogs/go to festivals/whatever like she does. I have had all of these thoughts and feelings and more. I try to go with it. It’s natural and ok to feel it sometimes. I just make sure it’s not all the time.

One friend I especially like is someone I think I would have been friends with if we were both healthy, too. When we hang out, sometimes we discuss our health problems. More often we’re busy with the other things in our lives – talking about my dating status, tossing a ball for her adorable dog, playing board games, comparing our latest crochet projects. Just stuff. Because we have interests in our lives besides our health, and that’s important. And yes, we talk about health stuff too. We give each other tips for handling certain symptoms. We provide an ear when the other person just needs to talk. We bounce idea off each other.

These friendships mean the world to me.

Not all friendships are in person. I have been amazed at the friendships I have cultivated online, too. It can be hard with this blog, since it’s anonymous, but I am also online in the chronic illness community as me. Through this blog, I have had some great email exchanges with folks. Through my own profile I have met amazing people both online and in person.

If you don’t have friends or community with chronic illness, and you feel lonely or misunderstood, give it a shot! Just remember, chronic illnesses shouldn’t be the only aspect of your friendship. Do other things, talk about other things, focus on other things. From time to time it’s nice to have someone to complain to about all of this health shit, but that won’t be the basis of a solid friendship.

Do you have friends with chronic illnesses? If so, how does that affect your friendships? Please share in the comments!


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