Trying to do it “all” with chronic illnesses

December 14, 2016

It feels like everything is hard with a chronic illness. Pain, fatigue, and other symptoms affect us in ways most people don’t think about.

Walking is harder. Sitting is harder. Reading is harder. Cooking is harder. Planning is a hell of a lot harder.

Last year I wrote down goals for earning money in 2016. I didn’t succeed, but they put me on a better path than I would have otherwise been on. So I did it again for 2017. And then I did something else: I wrote down my personal goals. I’ve never done that before and it was fascinating.

I wrote down everything big. And I realized how much harder it will all be than I would have thought just a few years ago.

I wrote down the book I want to write, blogging here, improving my health including doing regular physical therapy and other exercise, getting a dog (yay!), joining a dating site (well, maybe), making new single friends (most of my friends are coupled off at this point) through attending meetup groups, and some other things I’ll be telling you about soon.

It was a really great exercise and I recommend everyone do it. It puts everything into perspective. Doing this forced me to seriously consider everything I want to do, then narrow that down to what I want most. Then I broke that down into what I need to do to make it happen. For example, in order to make new friends, I need to join some meetup groups and actually attend, instead of my usual thing of joining but then staying home. (If you don’t know about meetup.com and you want to get out of the house more, check it out! I can’t do the physical activity groups like hiking or playing frisbee anymore, so I’m joining knitting and board game groups.) And I wrote down how many times a day I’ll do physical therapy, how many times a week I’ll check in on dating sites, and so on.

And then I looked at my list, added up the time required for each thing, and thought, “No wonder I’m so overwhelmed and never feel like I have enough time to get things done!” It was great! I mean, it sucked, because I have to give up something that’s important to me. But at least now I understand that it wasn’t that I was unorganized, just that I was trying to do more than my health allows. I have fewer hours, and I need to accept that. Sure, I’ve got a lot less on my list than I would if I was healthy, but it’s still too much. I can’t go right from a date to taking a walk – I need to rest in between. I can’t make new friends unless I have the energy to go out with them, and that takes energy from other activities. I still want to hang out with my current friends, knit, read, and do other things. Plus, showering, getting dressed, laundry, washing dishes, and even eating take up a lot of energy. But I don’t have to tell you that.

And of course, I can’t assume that any of my plans will stick. I could plan to do 3 hours of stuff every Monday, and some Mondays I’ll be able to do more but others I’ll have to less or maybe nothing at all. It’s completely unpredictable.

So that’s how I find myself looking at my list of personal goals for 2017, feeling keenly aware of the ways that everything is just a bit harder with chronic illnesses.

I don’t have the answers yet, but at least I can see the problem clearly. Something’s gotta give. Ok. I accept that. Now I just need to find the answers.

What about you? Do you set personal goals? How do you find ways to fit everything in or pare down?

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

Quick reflexes despite it all

November 29, 2016

It’s probably not a good sign when the doctor is so surprised. Then again, it was a pretty impressive catch.

I had great reflexes and coordination as a kid. I played musical instruments, I juggled, and I played sports. Since I don’t do those things anymore, no one would know that I still retained a lot of that coordination.

Of course, I know it. It comes up occasionally. There have been several near misses on the road that I’m sure would have been accidents if I wasn’t so quick to hit the break or jerk the wheel. Sometimes I catch in mid-air something that I dropped.

Today’s catch was much less dramatic. I’d finished my rheumatology appointment and I was asking my doctor how her Thanksgiving was. She’s been my rheumatologist for over 10 years, so chatting like this isn’t unusual. She’d stepped away from her desk and I’d turned toward her. Out of the corner of my eye I saw her stethoscope begin to slide off the desk, bringing the papers underneath with it.

I turned, lunged, reached out, and grabbed it just as it was about to completely slide off the desk. She was impressed and amazed. Ok, maybe I was a bit amazed too.

The thing is, there’s a lot I can’t do anymore. I know it. She knows it. But we need to remember that there’s a lot I still can do. I need to focus on that.

I can’t use a pen to write several paragraphs, but I can type. There’s a lot I can’t remember, but a lot that I can. I can’t walk 5 miles but I can usually walk down the street. Sometimes these victories feel hollow, but they’re super important. Because like the things I’ve already lost, I’ll miss them when they’re gone.

My reflexes might not save me every time, but they’re still pretty damn good, so I’ll appreciate them while I’ve got them!

What about you? What abilities do you still have that you’re grateful for?

Leave a Comment » | Limitations, Raves, Unpredictable | Permalink
Posted by chronicrants

Feeling better but not better enough

November 4, 2016

My doctor ran through my symptoms. How’s x? How’s y? And what’s new with z? Standard stuff. And to each one I said I was doing much better these days. Stable. Feeling ok.

So then why do I still feel so limited?

My pain is lessened to the point that I can completely ignore it – as long as I stay within my limitations, of course. No riding a bike or lifting heavy babies.

The nausea is gone. This is the best thing in the world!

My period sucked big time, but that’s over and I won’t have to deal with it again for 2 more months.

Even my fatigue isn’t as bad.

So why can’t I work a full time job? Why can’t I take a really long walk? Why can’t I travel? Why can’t I clean my apartment?

And the answer is, it’s not enough.

I’m feeling so much better than I was a few years ago, but I still have a long way to go. My friends take a walk and I can’t keep up. I have a fun afternoon and need to lie down to rest partway through. I cook dinner, and I’m in pain from standing and fatigued from the activity.

I’m excited for the progress. Really. And also frustrated at my continued limitations.

Will I ever see further improvement? Am I kidding myself if I keep trying?

I don’t know. But it sure beats the alternative: giving up.

There’s no better option. I have to keep trying. And even though it’s not enough, better is still better. And I’ll take it.

 

2 Comments | Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Using instinct to set limitations

October 31, 2016

Sometimes there’s no good answer to “Why can’t you do that?” It’s not as simple as “My doctor told me not to” or “I’ll be in too much pain.” Sometimes it’s a gut instinct response. I just know it’s a bad idea, even though I can’t put into words exactly why.

That’s how I feel about traveling right now. I think I can do it. I tell myself I’m ready. But when it comes to it, I feel like I shouldn’t. For a while I thought fear was holding me back. And it is. That’s definitely part of it, but not all of it.

Last weekend was a good example. I did everything “right.” I packed my bag in advance as much as I could. I took an extra adrenal supplement. I took various other supplements and medications that I thought would help. And they did. That’s why I felt horribly ill, but not so bad that I started to think death might be better. That’s the difference: I didn’t think about death.

So it was an improvement, but it still wasn’t fantastic. I felt like crap for hours, despite being super careful. I monitored and moderated my activity levels. I did everything right. But it wasn’t enough.

Last weekend’s trip involved a 3 hour drive – and someone else drove.

What would happen if I flew 5 hours? A friend wants me to visit. They’ve offered to pay for the plane ticket for me. I’d love to visit, but is it worth it? It’s a long flight. In tiny, uncomfortable seats. It could be longer if the flight is delayed. There’s time in the airport, plus getting to and from the airport. There’s the time change – a 3 hour difference.

How would I feel? Worse than after a drive? Certainly. I wouldn’t be able to bring cannabis on the plane with me, so that would make the following hours significantly worse.

In the end, though, I’d survive it. I always have. So why not go?

Because my gut tells me not to. My instinct is that I’d feel horrible for at least a few days, and by the time I started to feel more or less like myself, I’d be on the plane back home. It’s not worth it. Not now, at least.

The problem is that it’s hard to explain all of this in a way that makes sense to other people. I try, and they say I should just do it and it will be fine. I’m letting my fear stop me. I’m thinking about it too much. I should just go and have fun.

That all sounds great. But they don’t live in my body. I know my body. And I’d rather follow my instinct.

Do you have times you follow your instinct and can’t put the reasons into words? How do you explain those things to people? Please comment and share your experiences!

4 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Medication, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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