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

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?

2 Comments | Decisions, Expectations, Healthcare, Symptoms, Unpredictable | 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

So much for October

November 2, 2015

October is my favorite month of the year. It’s not hard to see why. For one thing, heat and humidity make me feel like shit. They exacerbate my symptoms and I pay the price all summer long. October is the first month that I feel decent. There’s 2015-11-01 14.07.39no snow or ice to deal with yet. And I get to enjoy the gorgeous fall foliage here in New England.

Except for this year.

In September I had a bit of an accident with a knife, and I haven’t been able to walk around much since then. I’ve been enjoying the cooler temperatures and lack of humidity, but there’s just no way I can walk around in the woods right now. Still, as I look at my post-surgery foot, or rather, the bandage around my post-surgery foot, I’m trying very hard not to feel too bad about missing out on my favorite month of the year.

There will be another October. There will be many more Octobers. And I expect to enjoy quite a few of them. I can still see some of the pretty colors from the passenger seat of a car. Ok, it’s not the same, but that’s ok. It has to be ok. Because I can’t keep feeling sorry for myself.

There are a lot of things I can’t do anymore, and that’s I’ll never do again. I will never jog again. I will probably never ride a bicycle again. I will never backpack around Europe again. I might never work in an office again. But there are still a lot of things I CAN do. So as I see the calendar yelling at me that November is here, I’m trying not to feel too bad about missing out on October this year. There will be another one.

2 Comments | Decisions, Expectations, Frustration, Isolation, Limitations, Rants | Tagged: , | Permalink
Posted by chronicrants

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