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…..

11 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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.

2 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Limitations, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

Standing scared on the edge

November 20, 2015

It was always the same. The instructor was telling me to jump. I could feel everyone’s eyes on me. I knew it was safe. But I was terrified.

Some kids love jumping off a dock and into a lake. Those kids probably

5-9-2012 10-20-06 PM

Wish I could swim like these cuties!

know how to swim. Those kids probably aren’t scared of the unseen mysteries beneath the murky surface of the water. I, on the other hand, wanted to stay safe and dry on the dock. No such luck.

I did eventually learn how to swim. One day I was standing at the edge of a pool talking to someone, and a kid pushed me in as a joke. I had to be rescued. The next day, I finally learned enough to stay afloat. But in general, I’d rather learn how to stay afloat without feeling panicked as I sink to the bottom of a pool.

Now I’m standing at a different kind of edge. It’s just as safe (mostly but not completely) and just as terrifying (very.) I’m about to start a small business. I decided to do this months ago, but I wasn’t committed to it. This week I decided to commit fully to giving this a try. I might fail, but I have to try.

I still don’t feel like I can commit the kind of time necessary for this. I know someone who has a new baby and works a full time job and is starting a similar business, yet she’s finding the time. But then, she doesn’t have brain fog, chronic pain, chronic fatigue, and a huge number of medical appointments to deal with. Still, I should be able to put in at least a little bit of time.

Ok, I know I’m being a bit vague about the business. That’s partly because I want to maintain my anonymity here but also because it’s really irrelevant. I plan to write and sell a short book (I’ve written the first draft but still have a lot of work to do on it.) I’ll create a blog. And I’ll try to sell the book and other things (maybe an online course?) to people. The key is that I’ll be working my own hours. It will take twice as long for me as it might for someone else, and I have to be ok with that. I might plan to work 3 days this week and manage 5. Or it might end up being only 1. Or none. And that will be ok.

I’m worried about the impact on my benefits, especially social security, at the beginning. But then, I also know that I can’t survive on benefits indefinitely. Right now I’m taking money out of savings each month to make ends meet. That’s fine for now, but one day those savings will run out, and then how will I get by for the next 4 decades? No, it’s better to not have to be on benefits at all, to cover my own expenses with my own business. So I’m going to try.

I face my fears every damn day with these illnesses. I worry about my health in ways most 30-somethings never even consider. It’s time to face a different kind of fear and take the leap. I don’t know how to do this, but maybe I’ll find a way to stay afloat anyway.

 

3 Comments | Decisions, Expectations, Fatigue, Job, Limitations, Milestones, Pain, Raves, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

You can choose to say no, but I can’t choose to say yes

October 22, 2015

“I have to do this and this and this and this and then there’s that trip tomorrow…. I mean, it’s fun, but it’s still a lot, you know?”

All I could do was nod my head. What could I say? I remember what it was like to be so busy and feel like I couldn’t keep up, but my friend was talking about how he was so busy, that tomorrow’s day trip would be overwhelming. The day trip that he and other friends of ours take every year. The day trip that I want to go on every year. The day trip that I miss every year because of my health problems. The day trip that he could say no to, but chose not to.

That was the hard part for me. I just kept thinking, “You could always say no.” I remember being in that place, and feeling like I couldn’t say no to things. Now I see what a luxury it is to have the choice! Because even when it’s something you really want to do, you can always say no. But you can’t always say yes. At least, I can’t always say yes.

There’s a certain perspective you gain when your body is constantly stopping you from doing things you want to do, things that your peers can do effortlessly. I wish I could explain it to my friends. I see things so differently now. It’s not necessarily better, and the cause for it totally sucks, but it’s different.

It’s easy to say what I would do in the same situation, but the truth is, there’s no way to know. Maybe it’s be just as over-committed as everyone else seems to be. All I know is that right now, I sure wish I had the luxury of choosing to say yes to invitations. I just hope everyone else remembers they have the option of saying no.

2 Comments | Decisions, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , | Permalink
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