Worrying the good stuff will hurt me

February 29, 2016

I’m going to be sharing some big news soon. But not yet. I’m too overwhelmed right now. And too nervous.

Because the thing is, when something good happens and you have a chronic illness, often you can’t just enjoy the thing.

The thing I’ll be sharing soon is good. Really good. Incredibly good. But along with the good comes some difficult stuff. It comes with expending more energy. It comes with less control of when I rest and how long I rest. It comes with more responsibility. And all of that worries me.

On the downside, all these years I haven’t had a spouse or children or anyone to be there for me every single day. My parents are fantastic, and I talk to my mom every day, sometimes multiple times a day, but that’s not the same.

Then again, I had no responsibility for anyone by myself. I had no kids, no spouse, no partner, no pets. I had no job and no house. My biggest responsibility was my car, and that’s relatively minor (and there’s no emotional attachment there at all.) It was all about me, myself, and I, and that suited me just fine.

And now I’m taking on new responsibility. That’s daunting, to say the least.

At least once an hour I find myself wondering if I’m pushing myself too hard. Was that walk too long? Will I regret it? Am I doing too much? Will I get sick because of it? Am I worrying for nothing?

That last one was answered when my knee started to buckle as I was walking down a flight of stairs, and I pictured myself tumbling down. Ok, maybe I’m not worrying for nothing, but I still might be worrying too much.

Because we all know how hard it is to adjust to a “new normal.” I’ve written about it many times and I’m sure others have too. We get used to doing things and find something that works and then there’s a change. Maybe the change is external: a new home, a new job, a new medication, a new season. Maybe it’s internal: a new diagnoses, a worsening of symptoms, an improving of symptoms. Whatever it is, it means we have to find out what our new normal is. That’s not easy. But that’s where I am right now.

There I was, seeing some improvement, enjoying where I was, just starting to find a groove in my new normal, and then things changed. And even when they change for the better, that can be a problem.

I once tried to explain my adrenal problems to someone by saying that any kind of stress could be bad – the death of a loved one or winning the lottery could each have a terrible effect on me. Of course, the effects would be different, but I do think that winning the lottery could have some bad short term consequences.

So that’s why I’m now worried. Because I’m not sure how much my poor body can handle. Maybe I’m overreacting. Maybe not. Unfortunately, I won’t know one way or the other until it’s too late to change things. There’s a reason one of the biggest categories in the sidebar over there on the right is the one called “Unpredictable.”

I’ll just have to metaphorically cross my fingers and hope it all goes ok.

1 Comment | Expectations, Fatigue, Frustration, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , | Permalink
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I know that would help but….

February 21, 2016

We all make excuses. Maybe it’s human nature. Maybe it’s cultural. But I’m pretty sure everyone does it. At least, I know I do it. And I know it’s hurting me.

When I was a kid I made excuses not to clean my room. Or to do chores. Or to do my homework. Or practice whatever instrument I was playing at the time. Over the years, the excuses changed and the things I avoided changed, the the process felt the same.

Now, I’m great about doing most things, even if I don’t want to, because I know I’ll be happier if I just get them done. I don’t always prioritize well, so things I should do get moved lower on my list and get put off from one day to the next to the next. Still, while I don’t particularly want to do them, I know that either I will eventually do them or I’ll admit to myself they aren’t necessary. Sure, I should probably learn to cook that new dish, but if I don’t ever get around to it, what’s the harm?

I’m pretty good about health stuff, too. I used to make excuses for why I wasn’t trying a gluten-free diet or some new treatment. I made the excuses but eventually, I tried those things, because avoiding them was worse than doing them. Missing a party sucked, but I knew it was what I had to do. I was done making excuses for those things.

So why, then, do I make excuses when it comes to my physical therapy? I tell myself skipping a day won’t make a difference. And it’s not like those exercises help all that much anyway. And they’re so annoying. And I’m good about my diet and taking walks and not overdoing my activity levels and using my sleep machine and so many other things. Why do I have to be good about this too?

The thing is, I know I should do those exercises. I know they’ll help me in the long run, even though I don’t feel it in the short run. I know the real problem is that they’re boring and they take up time and energy that I’d rather spend doing other things. I can sit down right now and thinking about what’s going on and recognize the truth. But when the time comes to do the exercises, inevitably, I always come up with a reason not to do them (I just ate; I should wait until I digest a bit) and then I manage to forget. But that’s ok. I’ll do them tomorrow, right?

How do you handle excusitis? Are you good about doing your exercises? How do you make yourself do them? Please comment below. Maybe your tips will help me or someone else!

P.S. Thanks to Megan S – your comment here inspired today’s post!

2 Comments | Decisions, Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms | Permalink
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Chronic illnesses: they’re not boring

February 16, 2016

Chronic illnesses are a lot of things. They’re frustrating, irritating, disturbing, enlightening, infuriating, unpredictable. They teach us who our real friends are and they teach us about ourselves. But however you think of them, they’re certainly not boring.

Every now and then I’m not sure what to write about on here. Lately I’ve wondered if I’ve just covered it all. After all, I’ve written 587 posts (not including this one.) Some were personal, like my experiences with sex or social security, and some were general, like a news item. But they were all relatable. And they were all about chronic illness.

And now, 587 posts later, I’m realizing how much more there is to write. There are my own experiences as my journey continues, there’s the changing political landscape, and there’s simply everything I haven’t covered yet.

Chronic illness can lie in the background of your life or it can be front and center, or maybe it moves around. But once it’s prevalent, it’s not boring. It effects so many things, big and small. Doctors, hospitals, medications, insurance issues, stereotypes, jobs, strained relationships…. and that doesn’t even touch upon, you know, the actual effects on our bodies! Many of us deal with symptoms daily. We think about them so much, we forget that some people don’t constantly worry about how to sit to avoid a pain or what to eat to get just the right nutrients to compensate for that disorder or which activities can be combine to conserve energy and stave off fatigue. It’s a never-ending game where there’s no winner, but we try not to be losers.

Ironically, I am writing a post about how much there is to say without saying anything specific. Still, I think it’s important to take a moment and think about this. Some of you are bloggers, and you know what I’m talking about. It’s easy to have a day or a week or longer without inspiration. But that doesn’t mean the well has run dry. And some of you aren’t bloggers, and you know there’s so much to say about your chronic illness but you probably don’t have a way of sharing it. The next time you feel that you could never explain your chronic illness to someone and you can’t understand why, just remember that I found a way to write 587 blog posts (over four and a half years) and I haven’t come close to running out of things to discuss yet. That’s a whole lot of information.

Someone is creating an anthology about chronic illness(es) (this post was written a while ago, but she sent an update recently to say that she’s still collecting stories, so you should consider participating!) and some people might wonder how you could write a whole book about them. But we know better. We know this could easily be a 50-part series. Because whatever else chronic illnesses are, they definitely aren’t boring.

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Raves, Symptoms, Unpredictable | Tagged: , , | Permalink
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Where should I put my body?

February 11, 2016

 

I’ve been sitting too much lately. Way too much. I see all of those studies that say sitting is as bad for our health as smoking and I think, it’s not like I have much of a choice. Still, something has changed.

I used to sit a lot and knew I didn’t have a choice, and it felt right, even though my brain said it wasn’t good for me.

Now I sit a lot and it feels wrong. It feels like too much sitting. My brain said it’s bad for me, but so does my body. My back hurts. My neck hurts. I know I’ll feel better if I move around more.

The problem is, moving more would help my neck and back, but not the rest of me. I don’t have the energy to move more. I do what I can, but between my adrenal problems and everything else, I just can’t do more activity. It would be really bad for me. Recently I had a few days where I did more because I felt up to at the time, and then I paid for it the next day. So I know I need to dial back a bit.

The thing is, it still feels wrong. I sit in front of the computer or on the couch watching tv or in a comfy chair with a book and I’m happy with the reading or writing or watching, but my body hurts in ways that are specific to doing too much sitting.

What’s the answer? I don’t know. I don’t have the energy to walk more. Laying down would hurt in different ways, and would definitely harm me emotionally. Sitting makes the most sense, but it’s too painful.

What about you? Have you had this problem? Do you have any ideas of what might help? Please share your ideas in the comments. I’d love to hear them. One of you might just solve this problem for me and for others who read this!

19 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms | Tagged: , , | Permalink
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