Should I go out tonight?

February 14, 2013

I think for healthy people, this question only comes up when they don’t have plans, or if they’ve been going out every night and feel that they need a night in. For me, this seems to come up constantly. I’m always weighing how I feel and how much I want to go to something against what I might miss out on in the future if I do go out. Today, the decision is whether or not to go to a Valentine’s Day singles party tonight. Yeah, I know, but it’s not as bad as it sounds. It’s a great group where I’ll know a bunch of people, and I’ve been to their Valentine’s singles party before and it was fun.

I haven’t been doing much lately. Tuesday I didn’t leave the house at all, and just had my sex-friend over for a couple hours. Yesterday I only went out briefly to a chronic illness group for an hour. And today I haven’t left the house at all. So it would be nice to go out.

Then again, I slept horribly last night. I woke up at 3am and only dozed on and off after that. And I have a day full of activity planned for tomorrow. Plus there’s the hassle of getting dressed up and having to put on a happy face. If I knew this event would happen again soon, I’d be happy to stay in and just do this next time, but unfortunately, the next one is a full year away.

Reasons I should go out:

  • I’ll see a lot of friends I really like.
  • I might meet someone interesting.
  • I can practice flirting.
  • Maybe someone will flirt with me.
  • It would get me out of the house and interacting with people.
  • I’m pretty certain I’ll have fun if I go.

Reasons I shouldn’t go out:

  • It will take away my remaining spoons, and possibly cause a deficit.
  • I might be too worn out to have fun tomorrow, which is a one-time family thing.
  • Because of the snow (and the resulting parking shortage) I can’t drive, so I’d have to risk taking the germ-infested subway.
  • I’ll have to either shake hands with a lot of people, or else come up with a reason not to shake hands that doesn’t drive away the flirtations.
  • I’ll have to answer the question “What do you do?” over and over and over and over. I hate that question.
  • I’m not ready to date yet.

I’m leaning towards staying home, but I just can’t decide. I keep thinking about all the friends who will be there tonight, so even if I don’t meet or flirt with anyway, I know I’d have friends with them. What holds me back is tomorrow. I must have energy for tomorrow. An elderly relative is in town and this could be the last time I see him, since I can’t travel and he might not be able to either after this. If I knew I could do both it would be different. But since I can’t be sure….

What would you do?

2 Comments | Decisions, Expectations, Frustration, Isolation, Limitations, Parking, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Why I really want to shovel snow

February 10, 2013

We all have chores that we hate to do, but there’s something about having to ask others to do them that really changes that attitude, at least for me.

I have always hated having to ask others for help, and I especially hate depending on them when I know it’s something they’d Blizzard 2013rather not do either. That’s why I’ve turned down my mother’s offer to clean my apartment. I know she would hate it, and she really doesn’t have the time for it. So I pay someone. I pay someone to come once a month to do the things that I can’t do.

Now the truth is, when I was able to clean, I didn’t do it as much as I should. At this point, I’d gladly do it. Ok, maybe not gladly, but you know what I mean. Unfortunately, dragging a vacuum is too painful, stretch and dusting and grasping a cloth to dust would hurt, and bending over the tub to scrub it out would knock me out for days.  And then there’s the energy it would take, energy that I just don’t have to spare. I know that I can’t do it now, but I sure would like to.

Shoveling snow is the same. I used to think of shoveling as a chore. I live in the Boston area, so it’s not like this was a rare occurrence. I did it because I had to, but I didn’t enjoy it. And now? Now I dream that I could.

We got more than 2 feet of snow this weekend. Since I rent my apartment, I thankfully don’t have to worry about shoveling out the stairs to my building or the sidewalks, but I am definitely responsible for shoveling out my car if I ever want to drive it again before the spring thaw.

After spending two days indoors, I felt antsy yesterday, so I put on many layers and went for a slow walk. I chatted with neighbors as they shoveled out their cars and driveways, and I was amazed at the envy I felt. It’s backbreaking work. It takes hours. It’s thankless. And I wanted to be doing it. The jealousy practically dripped from my mouth as I commented on what a good job each person was doing.

I’m lucky. A neighbor had offered to help me out. And several of the other neighbors who I had just met on my walk joined in. I had been friendly to them, and they saw me help someone whose car was stuck (since I couldn’t shovel or push, I drove the car while the owner and others pushed it.) I guess it was a bit of karma or something. Or maybe it was the damsel in distress effect (let’s face it, there are men who just love to help out a “helpless” woman and I told them that I had a “physical condition” that stopped me from shoveling.) What it was, the big relief is that my car is free now. Still, I worry about what happens when I drive someplace. If I come back and there’s no free spot, I won’t be able to shovel out a space on my own. And what about the next time it snows?

I’m not naive. It could be much worse. But at the same time, this is frustrating and stressful for me at a time when I really don’t need more frustration and stress. And it won’t go away. I continue to hope that my health will improve. One day I may be able to dust, but my guess is that shoveling snow will always be beyond my abilities. I want to be self sufficient and right now that’s not an option. Some days I can accept that, some days I can’t. I guess this is one of the days that I can’t.

How are you handling the winter weather?

2 Comments | Expectations, Frustration, Isolation, Kindness, Pain, Parking, Rants, Support, Symptoms | Permalink
Posted by chronicrants

Who I am vs. who I want to be

February 4, 2013

After I gained a lot of Prednisone weight a few years back, I would look in the mirror and the image I saw didn’t reconcile with the image I expected to see. The weight gain was so fast that my brain just couldn’t accept it. It was as if I was seeing a stranger in the mirror. That’s how I feel about my whole life right now.

I have had a lot of time to read lately. I’m not working, I can’t do a lot of activity, so I read. I read novels and historic literature, but I’ve also been reading a lot that falls into the self-improvement and personal development categories. I’ve been reading about personal finance, minimalism, and health. I’ve been thinking about which aspects of the things I read I’d like to adopt, and which I’d rather not. I’ve been thinking about my future, including where I’ll live and what career I’ll have if I can work again. Unfortunately, too much of what I want to do just doesn’t align with my capabilities.

In my mind, I’ve gotten rid of my car and I walk where I can, take public transportation, and ride a bike the rest of the time. I have a great career in a new field. I save money by getting rid of my house cleaner and fixing things myself instead of buying stuff to do it. I travel more, but on the cheap, including road trips and camping (assuming I get over my arachnophobia first.) I take up hobbies that are interesting, fun, social, and active, like sports teams (there’s a local lesbian/bi softball team I’d love to join), biking clubs, or hiking. I’d date more. I’d date a lot, actually. And there’s so much more.

Over the years, I’ve often wondered what my life would have been like if I’d never been sick. I know that in a lot of ways, I’d be a very different person. And I’ve had to accept that I’d never know for sure. This time feels different. I feel my health improving, but I just don’t know how far it will go. Maybe one day I’ll be able to clean my own bathtub without being in a ton of pain afterwards. I doubt I’ll ride a bike, though. I haven’t done that since I was 16, and the body parts that are stopping me are unlikely to improve. Maybe I could travel more, but I doubt I’ll ever be able to sleep in a tent without intense back pain. Starting a new career sounds nice, and I’ve been gathering information from friends and people online, but is it really possible? Will I ever have a full time job again?

I think about the person I want to be, and I just don’t know if I can ever get there. I want to so badly. I have insurance companies and government bureaucracies saying that I’m healthy enough to do these things, but if I were, I’d do them. Really. I know some people would rather just take the money and sit back, but that’s not who I am. I want to LIVE my life, not just watch it pass me by. I just wish I knew how to make it happen. If it can, that is. Because the person I see in the mirror isn’t who I really am. I want to be me.

7 Comments | Expectations, Frustration, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

Missing opportunities because of illness

January 31, 2013

It isn’t just any job, it’s THE job.  I’ve wanted this job for years.

I used to work in a certain position in a nonprofit.  Then I quit my job and started volunteering at a nonprofit while I looked for new work.  I already had some friends who worked there, and I quickly became friends with a lot of the rest of the staff.  I loved going there, I loved the people, I admired the work they did.  I still volunteer there from time to time when I feel up to it.  They are all fantastic.  I wanted to work there, but there was just the one position that I wanted, and it was filled.  I got the impression the guy might leave, and I was hopeful, but I think something happened to change his mind, and he stayed.  I was so disappointed.  I could have done a fantastic job there.  That was years ago.

Today I found out that he just gave his notice!

I still want that job.  The people are still amazing, the location is still fun, the benefits are still unbelievable.  I don’t know the salary, but I have reason to suspect that it’s in a reasonable range.  If I was able to work, I’d apply tonight.  If I was working someplace else, unless it was a really unbelievable place, I’d apply tonight.  If there was any way at all…. but there isn’t.  My health is lousy.  I couldn’t even work part time right now, never mind full time.

I’ve missed out on a lot of things because of my lousy health.  There have been dates and friendships and romantic relationships and hobbies and family events and social gatherings and career opportunities and so many other things that I’ve missed out on.  Really, this is just one more.  But this hurts.  This is THE job, and I can’t even apply.

Leave a Comment » | Expectations, Frustration, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

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