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?

What a difference a year makes

November 25, 2016

Holidays are a good time to reflect. Sometimes it’s because of the holiday itself, but often it’s simply because they stick in our heads. Last year at this time I was…. It’s easy to remember.

Yesterday was Thanksgiving and it made me think about some recent Thanksgivings I’ve had. Some were a real struggle health-wise. Some were tough emotionally. A few were both. And then there was last year.

Last year I was recovering from surgery. I remember being super careful with my poor foot in a cast, making sure no one accidentally tripped over it. And if you’d asked me then where I’d be this year, I’m not quite sure what I’d have said. But I wouldn’t have guessed where I’m actually at.

I’m still recovering from that surgery. I thought I’d be long healed by now, but I still have some pain. I saw the doctor today and it looks like I’m still healing properly, just very slowly. Oh well.

I’m getting ready to move! I thought that by now I’d have received my Section 8 voucher and I’d be moving into a crappy place in a not-so-desirable area. I wasn’t sure when it would happen, but they’d led me to believe it would be soon. Instead, I still haven’t received the voucher (they’re still saying it will be “soon” but I no longer believe them), and I’m moving into a kick-ass apartment! Last Thanksgiving I was still months away from discovering the affordable housing programs that would let me live in a really nice place for less rent than I’m paying now. And when I do finally get that voucher, it should apply to my new apartment – yay!

Tomorrow I’m participating in a craft fair for the first time. Last Thanksgiving I had only recently learned that I could sell my kinds of crafts in the fall and winter. I was so excited! Because summer is no time to sell hats and scarves, and because I feel shitty all summer long, too. But fall and winter are perfect! Plus, I’ll get the Christmas shoppers coming by my booth. Last year I thought about participating, but I felt that I couldn’t manage a really long day (9am-3pm!) at a craft fair. I’m still not so sure that it’s a good idea, but this year I feel well enough to try!

Last year I’d seen some improvement to my health but I had plateaued. Now I still feel like I’ve plateaued, but I’m doing better than I was last year. So even though the changes were small, they definitely happened!

Last Thanksgiving I was just starting to create a business. Now I’m still working on the same business but I have a slightly different business plan. I’ve come farther than I’d have expected with it, even though it’s not bringing in any money yet. But I have confidence that it will!

Over the last year I unexpectedly saw an old friendship end and I surprisingly saw a couple of newer ones blossom.

Last year I was incredibly single. This year I still am. Ok, some things don’t change much.

All of this makes me wonder about next year. What will I be doing by next Thanksgiving? How will I be feeling? I can’t wait to find out!

Do you ever look back on where you were a year ago? How are you feeling about it?

A little overwhelm goes a long way

November 16, 2016

I was listening to this really fantastic podcast about getting organized and it got me thinking. How much am I really trying to do?

They said that no one should have more than 7-8 projects at any given time. A project might be redesigning this web site (something I’ve thought about, but….) or knitting a scarf. That’s different than tasks, which are the small bits that make up a project, like finding a new web site theme, reading about how to transfer the site to a fancier host, finding a knitting pattern, or buying yarn.

Ok, that sounds fine. But 7-8 projects is a lot. I figured I should have less, maybe half that. April said that most people have dozens, or even hundreds, of projects on their to do lists, but most can’t handle more than 7 or 8 at a time. I knew I had a lot of projects on my to do list, but I figured wasn’t trying to do that many at once.

Or so I thought. Oh boy. I had at least a dozen. I decided to put a bunch off until later. I made a list of 8 projects, then listed out my tasks.

That was over a month ago and everything was going great. Until this week. I admit I was struggling to juggle all of those projects before, but now it just feels completely impossible. 8 is too many, but it’s hard to put any of them aside when they’re all things I either really need or really want to do.

Should I stop working on the projects that might earn me some money? That isn’t really an option. I could skip the favor that I promised I’d do for a friend. But I’m 90% done and I promised her 10 months ago. I’d really love to finish already! Or should I skip buying pants? I only have 1 pair that fits, and that might be ok in some climates, but not here in Boston.

But then I have a bigger project. I’m moving. This is a great news. I’ll be in a lovely apartment in a nice town. I’ll have all sorts of amenities and I’ll get a dog. The thing is, first I have to change my address in a million different places, sell a bunch of furniture, hire movers, get boxes, and pack! It’s overwhelming. It’s the equivalent of 3 projects.

And that’s probably why I haven’t worked on that favor I promised to help my friend with and I haven’t bought pants (though in fairness, I tried shopping for pants twice and couldn’t find anything either time, so I did try,) and I haven’t done a thing for 3 of my other projects in the last couple of weeks, either. I’m struggling to keep my head above water here.

And yet, I don’t have a full time job. My health isn’t great but it’s fairly stable right now. I don’t have a significant other or kids or even a pet to take up my time. That isn’t to say I don’t have good reason to feel a bit overwhelmed, but maybe it isn’t as difficult as it seems. Maybe I need to take a step back and reexamine things.

I have a lot going on. Appointments are taking up time and energy. But in between those, I need to find a way to fit in some of the projects I’ve prioritized. They’re on my priority list for a reason, so I need to find a way to do them. Because I know I’ll be happier when I do. And less overwhelmed and anxious.

This overwhelm and anxiety is not good for my health and I know it. It even causes me to get less done! Talk about being counterproductive.

Still, I need to be realistic. And that’s why, until I’ve moved and unpacked, I’m removing a couple of projects from my list. 8 is too many, especially if preparing to move is one of them.

But I still plan to buy pants.

What about you? Do you get overwhelmed by what seem like a reasonable number of projects and tasks? How do you handle it? How do you choose what to set aside and what to focus on? Please comment so we can give each other ideas!

Update 2 days later: After giving this more thought and considering the lovely comments by Lorna J. and Ms. Mango, I made a couple decisions. First, I’m categorizing my projects as big, medium, and small. Big is moving. Small is putting a disability-rights bumper sticker on my car. Next, I’m keeping the small ones, but I’m doing them asap and getting them off my plate. I’m moving a couple of the bigger and medium ones off my list. They’ll have to wait until later.

That leaves me with something that feels a bit more reasonable. I did one little thing today: I put the bumper sticker on my car. So little. So easy. But that sticker has been sitting on my table for months! I’m relieved to have that done! I just needed the push. Another small one is an errand that will be done tomorrow. A very large project that I’ve been working on for a while should be done by Sunday (2 more days!) at the latest. And once these things are all done, I’m not adding anything else to my list until after I move.

That will leave me with just 3 projects: moving, buying pants (unfortunately that can’t wait, but I’m going to try and do it tomorrow along with the other errand), and working on a project that I care a lot about. I’ll still have smaller things: knitting and physical therapy and cooking and other daily stuff. But the “projects” list will finally be reasonable! Thanks for the support and encouragement!

Difficult elections and self-care

November 10, 2016

For the past 2 days, a lot of my friends have been writing and posting on Facebook about self-care. These last 2 days have been incredibly stressful for many of us. We’re scared, we’re uncertain, we’re worried. And that’s precisely why we need to take care of ourselves. All of us.

But when you have a chronic illness, self-care takes on different dimensions. And in some ways, I think it makes things easier for me, because I already know what to do.

When I was first diagnosed with an autoimmune disease, the doctor told me to avoid stress. I laughed. Oh wait, was he serious?

Over the years, though, I’ve learned how to do it. It’s not that I completely avoid stress, but I manage it better. I’ve learned not to sweat the small stuff as much. When I do feel stress, I know what will calm me. I address issues head-on so they don’t nag at me. I take deep breaths. I distract myself. I put things in perspective. And generally, it works.

I also know what to do when it comes to physical self-care. I know that I need a lot of sleep and that I need to eat certain foods while avoiding others. I know that I might need to take extra supplements or raise the dose of a medication.  I know how to rest while awake.

It turns out, I know a lot more than I thought I did! And I bet you do, too.

This week is more stressful for some people than for others. But we all experience stress from time to time, so it’s important to learn how to read our bodies and to figure out what will work to counteract that stress.

I am watching my friends cry, hug, and attend vigils. I did the first two. I can’t do the last. The vigils would help me emotionally for sure, but not physically. And on balance, it’s better to skip them, even though I’d really rather attend.

Last night when I found myself crying alone in my apartment, I texted a bunch of friends until I found someone who could talk. We had a long chat on the phone and in the end, I felt much better. Today I visited with another friend and got great conversation and a few good hugs. I don’t usually hug people during flu season but again, on balance, it was worth it.

We all need to find our balance.

I want to believe everything will be ok, but I know it won’t. As a queer person, I see difficult times ahead on many levels. As a Jew, I see anti-semitism increasing already. As a woman, I worry about an increased risk of sexual assaults, not to mention further legislation that affects my body. And as a chronically ill disabled person, I worry about losing my health insurance and my disability benefits. As a person, I worry about the future of our country and the hatred that this election has bred. Among so many other things.

So that is why I am about to step away from my computer, put on a happy, silly movie, and knit. Because for me, that’s the perfect form of self-care.

How are you taking care of yourself? What works for you to handle stress? Please comment and share!

As a final note, I want to say that I’m not looking to start a political debate about how the election turned out. This is about handling feelings and stress. That’s all. Hateful comments will be deleted, because that’s part of self-care, too.

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.


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!

Feeling guilty for feeling better

October 26, 2016

These friends are some of the only people in my life who knew me before the symptoms began. They understand more than most. But some things are still so hard to explain.

We were sharing all sorts of things, and I started to talk about my support group, and some of the emotions that come up when I’m there. I talked about many things, but it was my talk of feeling guilty that they latched on to. They tried to convince me that I shouldn’t feel guilty.

Easier said than done.

The thing is, I know I shouldn’t feel guilty. I know it in my head, but my gut feels guilty anyway. One friend put it best: it’s like survivor’s guilt. Why should I have improvement when someone else doesn’t? Still, they didn’t truly understand why I would feel guilty.

But I do.

I look around at my friends and acquaintances who are sicker than me, or who are in more pain, or who have a worse prognosis, and I feel guilty that I’m doing better. When I was much sicker just a few years ago, I sometimes resented and often envied the people whose health had improved. Now I’m one of them. And it’s not because I worked harder at it or am more deserving. Sure, I worked my butt off, but a lot of it is luck. Some people have illnesses that will never improve. I was lucky to not be one of them (though for a while I believed I was.)

I will never be completely healthy. I don’t expect healthy people to feel guilty around me. But I do feel guilty when I can carry something that a friend can’t, or I can go to an event that they can’t. And I’m jealous when a friend with chronic illnesses can do things that I can’t.

It’s a process, though. I have had to deal with many difficult emotions surrounding these health issues for most of my life. Over the years I have dealt with many of them. Yes, I need to deal with the guilt, but it’s ok that it will take some time. It’s ok.

I appreciate my friends’ intentions. They want what’s best for me, and they feel that doesn’t include feeling guilty for being less ill or less disabled than someone else. And they’re right. But it’s not that simple. I need to work through the guilt in my own time. And I know I’m not the only one.

I’m sure others feel guilty at times, too. Are you one of them? It would be awesome if you would share your own feelings around guilt in the comments. I think I would really benefit from hearing about other people’s experiences. Sometimes knowing I’m not the only one going through something can make all the difference in the world.

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