Should I try to do more?

December 28, 2015

There’s no guide. Not only do we have to decide for ourselves what’s “right” but the only way to figure it out is by trial and error. And who wants to risk the error part?

Friends have been pressuring me to visit them more. Part of me feels like I should be able to do it. But then other parts of me think it would be a very bad idea. But maybe I should try anyway? I used to fly 3-5 times each year. Now my last flight was 5 years ago. It’s time. But is it?

I’ve done a lot these last few days. Today is my day to rest. But I look at my “to do” list and there’s so much that I need to get done. So maybe I should get groceries today. Or maybe that’s too much. But I’ve been doing better lately, so I should try to do more. Or maybe that’s too much and I’ll regret it.

I know from experience:

  • If I don’t do enough, my abilities will atrophy, and I’ll feel capable of doing less.
  • If I do too much, I’ll feel horrible, it will take me days or weeks to recover physically and longer to recover emotionally.
  • Either way, I won’t know if it’s too much or too little until later, after it’s too late to change anything.
  • The doctors can’t help me with this. It’s up to me to decide.

Crappy options, right? There’s a sweet spot, an amount that’s just right. I’m looking for that, but I have no idea how to find it.

I think about how much more I used to do before I got sicker 4 years ago. I worked full time, traveled, did errands, went out with friends. I think about how much less I did 3 years ago when I socialized very little and didn’t leave the house more than 2 days in a row, if that. I think about what my friends with chronic illness can do. I think about what they can’t do. And I still don’t know what I should be doing.

I wish this was a conundrum I faced every few years, but it’s not. It’s constant. Every few months this seems to come up. I’m super aware of it now. I feel horrible in the hot summer months, so I spent that time at home, resting, trying to get by. Then I had an accident and there went autumn. Now the new year is approaching and I am just beginning to walk around again after 6 months of reduced activity.

I need to do more. I’m in recovery from surgery, so I’m supposed to walk more and get back to where I was before. But where was I “before”? I honestly don’t remember. Am I aiming for where I was at right before the accident? That was summer, and I usually do less in the summer. Should I am for my typical winter activity level? Should I push to do as much as I can? But I know that’s a bad idea – doing as much as I can in the short term will mean burnout in the long term.

Maybe going grocery shopping today is doing too much. Or maybe staying home today is doing too little. There’s no magic answer, no one to tell me what’s right, no official guidelines. I just have to guess.

For now I’m going slowly. I’m telling my friends I won’t be getting on a plane yet. But I wonder, maybe this is the year that I finally will? Or is that too much?

How do you figure out what you can and can’t do when the boundaries keep changing? Please share in the comments. Maybe one of your tips will help me and others!


Taking on something extra: is it worth it?

December 25, 2015

It’s a common problem when you have a chronic illness: how to divide up your energy. And it’s hard to decide if it’s worth taking on anything new 12-25-2015 5-38-30 PMthat isn’t completely necessary.

Of course, there’s no way to make a consistent plan. What we need to do varies from one day to the next, and how much energy we have varies too. That’s why it felt indulgent to me to add something new to my routine.

Getting dressed is tiring. Showering first is even more tiring. But choosing to add makeup? That just seems unnecessarily burdensome. Why bother?

Still, more and more lately I’ve wanted to try wearing some eye makeup, and this week I finally took the plunge. A friend helped me figure out what to buy, and finally, 20 years after most of my female peers, I learned how to put on eyeliner.

As a teenager I had no interest in makeup. As a 20-something it seemed like an unnecessary waste of time, energy, and money. In my early 30s it felt like too much of a bother. I started to get curious about it just as my health got worse and I simply couldn’t be bothered. Now I’m feeling better, but still, is it worth the effort?

So far, putting on eyeliner is pretty easy. Taking it off is more of an issue, because by the end of the day I’m tired and I don’t want to have to stand at the sink to wash it off. Still, I’m going to keep trying it a bit longer. Tomorrow I’ll even try adding eye shadow!

I may give this up in a week, a month, or a year. I might feel overwhelmed. It might not work out for any of a dozen reasons. Still, at the moment I’m glad I’m trying.

Wearing makeup is a small thing. To some women it’s a non-negotiable. To others it’s silly. For me, it’s just something I want to try, and I don’t want my illness to stop me. We’ll see how that goes…..


4 steps to start your own chronic illness site

December 21, 2015

I started this blog four and a half years ago without knowing what it would become or how long it would last. What it became was my lifeline. It has helped me in more ways than I can say. It provides me with an outlet for my thoughts and feelings, a community, people who understand, a way to stay connected when I’m feeling isolated, support, and so much more.

Readers have said they wished they could blog and/or communicate on social media. Well, you can! And it doesn’t even have to involve writing.

I’m no social media expert, but I know a bit, so let me share some of what I know with you.

STEP 1: YOUR NAME

First, decide if you’re going to be yourself or anonymous. I chose to be anonymous for this blog. A bit over a year ago I started a Tumblr account under my read name. Tumblr is very different. I also have a blog under my real name, but it’s business-related and has nothing to do with chronic illness.

STEP 2: YOUR MEDIUM

Now that you have your name, decide how you prefer to communicate. Choose 1 or 2 ways to start. You can always add more later. You could write, speak, or do video. If you found this blog, you probably know how to find others. Look on YouTube for examples of videos and do online searches for podcasts. Get a feel for what’s out there and think about what you’d like most.

Another option is to create photos, memes, and things like that. Or you might choose to share what others create. My Tumblr account is almost entirely  reposting what I see in my feed. I only write my own original things rarely.

Are you an artist? You could draw cartoons, share paintings, or share photos of clay work.

STEP 3: YOUR PLATFORM

For blogging you can go to WordPress.com and create a free account (or pay $20 per year for your own domain) or you can set up a hosted blog that you pay for on WordPress.org. There are other blogging sites, of course. These are just the ones that I use.

If you want to make videos, you can start by posting them to YouTube.

I don’t know anything about creating podcasts, but I bet you could find a few handy dandy guides online.

To share short thoughts and memes, try Tumblr and Twitter. They’re very different and are both worth investigating. I started out on Twitter and did well there (you can find me at @msrants) but the atmosphere has changed and so have I, and now I’m more comfortable on Tumblr. Create a couple of free accounts and see what feels right.

Do searches for #chronicillness #chronicpain #chronicfatigue #spoonie and other tags, including tags for your diagnosis. If you like what someone is posting with those tags, follow them. For example, on Twitter I follow activists. On Tumblr I follow activists and people who share funny chronic illness memes, because sometimes I just need to laugh at this stuff. Of course, I also follow people who post nothing but photos of cute dogs…. you can definitely branch out!

If you’re going to share photos, check out Instagram. Again, look for tags to help you decide who to follow.

I don’t happen to know anything about Pinterest yet, but I’m sure it has some fabulous chronic illness resources, so check it out and see if it’s something you’d like to participate in.

Finally, there are a lot of general chronic illness groups on Facebook and also specific groups for certain symptoms and diagnoses. You can create your own page and start building a following, though I think it might be a bit harder to get followers there than with some of the other sites.

STEP 4: GET STARTED

You’ve decided whether to use your real name or an anonymous one. You know if you’re going to write, speak, draw, video record, etc. You know which social media platform(s) you’re going to use. Now go do it! You might not get a huge following quickly and that’s ok! When I started this blog it took a while to get followers. Now I have a few hundred. My much younger Tumblr account has almost 1200 followers. Does it matter? To some people it does. To me it doesn’t. I’m getting exactly what I want. I’m writing and I’m building community. What could be better?

WHAT ABOUT YOU?

Has this post gotten you to start thinking about starting your own blog, podcast, video channel, or social media account, etc.? If so, let me know! I’d love to hear your thoughts. And please ask questions and I’ll answer them the best I can.

If you already have your own site, please comment and fill in anything I’ve missed. I’m sure there’s a lot. I have no desire to learn every form of social media communication. I’d rather spend the time writing here!


Choose either/or this holiday season and always

December 18, 2015

How many items are on your To Do list? How many events are you supposed to attend? Personally, I’m supposed to be at a holiday party at this very moment. I wanted to go. I really did. But it was just too much and there are other things I want to do this weekend, so I had to choose either the party or something else. I chose the something else.

We all have to choose. There’s only so much we can do before our bodies rebel and we know it. Unfortunately, not everyone else knows it. So I suggest you give them a choice.

Tell them to choose either this or that.

Your family wants you to go to 2 parties next weekend. Tell them you’ll gladly go to one and they can choose which one.

Or they want to decorate the tree and go present shopping and take a walk through the snowy woods. Tell them you’d love to do any one of those, and they can choose which one.

Every time there’s a list of things you’re expected to do, tell others they can choose. Of course, you might have to rule out a few options altogether. Keep it manageable. But tell them to choose.

This does a few things. First, it means that you won’t be overwhelmed by trying to do too much.

Also, it shows your loved ones that you truly want to participate. Maybe you can’t do as much as they can, but it shows that your desire is there, and that when you miss out on something, it’s not by choice.

Third, it makes your limitations clear. It shows everyone what you can and can’t do. Since we so often hide how we really feel, this is a good way to let your limitations be seen.

And finally, and so importantly, it gives your loved ones a feeling of control. You probably already know how out of control you feel by the unpredictability and difficulty of your chronic illness(es), but it’s easy to forget that our loved ones feel the same way. They want to make us feel better and, lacking that, they just want to have a little bit of control in a chaotic situation. So give them that. It will help ease a bit of their frustration if they know you’ll be doing what’s most important to them.

Finally, give yourself the same rule: either/or. Make a list of the many things you want to do and tell yourself that you’ll do either one or another, but not all of them. Be realistic. Then feel good about whatever it is that you do. Because that’s an accomplishment to be proud of.


Am I doing enough?

December 15, 2015

A friend called me and was upset. She had just spent a while talking to a friend of a friend with the same diagnosis as her, but who was doing a lot better because she had done a lot more research and tried many more treatments. My friend felt like she wasn’t doing enough. I knew that feeling well. I’ve had it many times myself. Maybe you have, too?

I think it’s common to feel that way. After all, we’re taught that when we’re get sick we go to the doctor and get better, so when we don’t get better right away, we wonder if it’s our fault. Then we read about someone who was magically cured through their own research and we wonder why we haven’t done the same.

Of course, not every illness is easily cured by a doctor. And those magic cures are often individualized treatment plans that were figured out through years of research and trial and error. We see the results, but we don’t see the backstory. Meanwhile, we’re all in the middle of our own backstories.

The thing is, if you’re doing all that you can, that’s enough. It has to be. I know people with my same diagnoses who can not only work, but jog every day and go hiking. That’s great for them, but I can’t do those things and thinking I “should” isn’t helpful. In the same way, someone might be able to do a lot more research than I can. And that’s ok. Someone else can’t do as much as me, and that’s ok too.

About 4 years ago, I started to do my own research. It was hard. Damn hard. I was so fatigued that I could rarely read more than 5 pages at a time without falling asleep. The brain fog was so bad that I had to read each paragraph multiple times before I understood it. Often I read a few pages, fell asleep, woke up with the book on my lap, and had to reread what I’d just read because I’d forgotten it all. But I kept going because I was determined. It paid off, because it led to me doing so much better. Sounds like something everyone should measure up to, right?

What you didn’t see (because I’d only started this blog earlier that year) was the several years before that where I’d given up hope. You didn’t see the years, yes YEARS, that I hadn’t wanted to do any research at all and had resisted encouragement from others. You didn’t see how long it took me after doing the research to actually put any of it into practice. And yes it has helped, but I’m nowhere near “better.”

Would my health be better now if I hadn’t put off doing research for years? Maybe. Maybe not. A lot of what I found wasn’t available 5 years earlier. I wasn’t sick enough back then to be willing to try some less conventional approaches. And it doesn’t matter. Because I did what I felt ok with at the time.

I wasn’t ready to do the research then. And that’s ok. I was doing the best I could. Physically I put all I had into working, exercising and physical therapy, taking care of myself, and having just a bit of a social life. Emotionally, I didn’t have the capacity to do the research. And that’s ok. I did as much as I could. So it was enough.

Sooner or later, you’re going to feel like you’re not doing enough. When you do, remember that if you’re doing your best, that’s enough. One day your best might be hiking up a mountain. Another day your best will be brushing your hair. Whatever it is, it’s enough.

As for my friend, she’s feeling a bit better now. I told her everything I’m telling you now, and then some. I pointed out that the person she spoke to had had her symptoms for many more years than my friend had. She’d had more time to try things. She’d had more money available to try things. We don’t know how severe her symptoms were or weren’t. And I pointed out that my friend has recently tried several new things and is currently waiting to see if they work. She’s already seen some small improvement. Waiting isn’t fun or exciting or sexy, but it’s necessary. It’s nothing to feel bad about because it has to happen. The person she spoke to had a lot of time to try things out and wait to see what happened. There’s no point in my friend feeling bad because her “during” doesn’t compare to someone else’s “after.”

So what about you? Do you ever feel like you’re not doing enough? And when you do, how do you handle it? Please share your thoughts in the comments.


Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.


Which is worse: knowing or not knowing?

December 2, 2015

My surgery was just over a month ago and for me, the worst was not knowing what to expect. Not knowing if it would work out ok. Not knowing.

For me, that’s always the worst.

But I was talking to a friend yesterday and she said the opposite. She has a surgery coming up that she’s had before and for her, the worst is knowing what to expect. She knows just how bad it could be.

To know or not to know- That is definitely the question.

When I don’t know my imagination runs wild, and what I come up with is always worse than the reality.

But what if it wasn’t?

Which do you prefer? Do you want to know what to expect or would you rather not? When you see doctors, do you ask them for ever detail you can think of (like I do) or do you get only the most basic of information, preferring not to know in advance?


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