It feels so good to be included

June 22, 2015

Over the weekend we had a family thing. As part of the thing, we ate. Simple, right? Well, it’s not quite so simple when you have a lot of food restrictions. But it gets a lot easier when it’s at my mom’s house.

My mom is amazing. She has always been my biggest supporter. Now, with my food issues, she goes out of the way to have food I can eat. There’s gluten-free bread in her freezer and gluten-free crackers in her pantry for when I visit. When I’m there, she prepares meals I can eat. She thinks it’s absurd not to do that. Fantastic, right?

She wasn’t planning to cook this weekend, though. Because of the way things were scheduled, the plan was to get takeout. My aunt wanted to pick up some prepared foods from an Armenian shop near her. My mom asked if I could eat that food and I said no, but that I’d bring my own food.

I always offer to bring my own food. I always say I don’t mind, but the truth is that I do. It sucks having to always bring my own food. It feels awkward when I’m invited to dinner at a friend’s house. I stand out at potlucks. I have to cook more and prepare more than other people do. Logistically it’s hard to always carry it. It’s a pain in the ass, really. And I have to eat the same old boring dishes while everyone else gets to enjoy something new and exciting. Still, what else can I do? I can’t always expect others to prepare gluten-free, dairy-free, broccoli-free, kale-free, peanut-free, alcohol-free, corn-free, caffeine-free etc. foods. It’s too much. So I bring food with me wherever I go.

In this case, there would be 13 people, and I didn’t want the others to have to accommodate me. My mom, ever the ally, made the offer, though. She asked where I could eat. So I listed a few general options. Indian food usually works, for example. My wonderful mother decided we should all eat Chinese food, one of my favorites, because there’s a Chinese food restaurant near them that has a lot of gluten-free dishes, and I’ve eaten there before, so we knew it was ok. I asked that my gluten-free dish be set aside separately, so it wasn’t contaminated.

But that wasn’t good enough for my mom. Oh no. She made sure all of the food was gluten-free! She and my aunt intentionally made sure every item they chose was gluten-free. She carefully stated it several times when she placed the order. And, sure enough, I could eat every single dish on the table! Sure, I skipped a couple (I don’t like shrimp and ribs don’t appeal) but I ate each of the others and loved it. Even better, I ate the way everyone else did. I didn’t stand out at all. It was such a treat!

I don’t expect every person to always find a way to include me in their meal plans. That simply isn’t realistic. But it’s so damn great when they do! Thanks Mom!

Leave a Comment » | Expectations, Gastrointestinal, Kindness, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , , , , | Permalink
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I miss my friends

March 30, 2015

The other day I wrote about my many medical appointments this month. There was a time when I’d squeeze an appointment in before work, or go during an extra-long lunch break (which I’d have to make up for after work hours.) Those days are long gone. Now I don’t have to worry about missing work, but I do have to worry about missing life.

As I’ve been feeling better lately, I’ve been spending more time with friends. What a treat that’s been! I do better during the day, so I don’t go out much on weeknights. But I see many friends on weekends, and I have a lot of new friends who also don’t work due to chronic illness, so I hang out with them on weekdays. Seeing one or two friends on weekdays each week has been wonderful! Unfortunately, with so many medical appointments, I just can’t manage it.

Today (Monday) I’m doing things around my apartment that need doing. They really need to be done, but I’m also resting. I have an appointment early tomorrow that I need energy for. And one of the things I have to do today is to prepare for tomorrow’s appointment: I need to prepare all sorts of notes so I don’t forget anything when I’m in the office. Tomorrow I doubt I’ll do anything besides that appointment. Wednesday I hope to do some clothes shopping. I don’t have any bathing suits that fit and summer is right around the corner. I’d like to see friends, but I know I won’t have the emotional energy for it after Tuesday’s appointment. Still, shopping drains my physical strength and causes extra pain, so I always need a full day to recover afterwards. That’s what Thursday will be: a recovery day. And at some point Thursday (or sooner) I need to prepare notes for Friday’s medical appointment. After Friday’s medical appointment I’m going to a Passover sedar with my family. I’m not religious, but it means a lot to them, so I go. I’ll probably have to go directly from the medical appointment. Saturday is a nephew’s birthday party, so as you can imagine, Sunday will be another day to rest. And BOOM! The week is gone!

Last week was pretty similar, and I think the following week will be, too. And of course, I know I’m lucky – a year ago I wouldn’t have been able to manage so much in a week. This is huge for me! Still, I miss hanging out with friends. I miss socializing. I like having quiet time to myself. I don’t get bored easily. I can happily spend a day reading and puttering around. But like many humans, I’m a social creature. I live alone, so on the days I don’t leave the house, I don’t see another human being. Days like yesterday, I might go out and see strangers in passing, but I don’t have any real conversations with anyone.

March is a gray month in Boston. As I write this, the skies are dark and there are some light snowflakes coming down from the sky. I have no desire to go for a walk (which I’ll have to do anyway) or to go outside. Yet, a little company would be lovely.

Like I weather, I know my current social situation is temporary. So I’m trying to make some plans with friends for a few weeks from now. At least that way I’ll have something to look forward to when this ridiculous string of medical appointments is over. And I’m just grateful everyone understands why I’ve disappeared for a bit.

Leave a Comment » | Decisions, Expectations, Fatigue, Frustration, Healthcare, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , | Permalink
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Always rethinking goals

March 27, 2015

I had a plan. Then I got sick.

But then, you know what they say about the best laid plans.

This morning I was talking with a friend. Sometimes I do some budget consulting. I don’t have the energy to do much of 3-27-2015 4-01-42 PMit, but I love it, and do it when I can. I always begin with discussing the person’s/couple’s goals. These goals can be anything: buying a house, buying a smart phone, getting a dog, having children, traveling the world, starting a business, retiring young…. there are endless possibilities.

Today I happened to be working with a friend, so it was more casual than when I get paid by strangers to consult for them. After we’d gone through her goals, her spending, her debt, her income, and her savings, we talked some more about goals. And she asked me about mine.

Most people assume my goal is to get healthy, but it’s actually not. I know I’ll never be completely healthy, and I also know I want more than that.

We all had plans that were different when we were healthier. Some got derailed because of health, some got derailed for other reasons, and some were achieved. After my friend left, I thought again about my goals. I think the most unusual thing about them is how often I think about them and change them. Most people, I would guess, hardly ever step back to look at the bigger picture. They assume they’ll do the things society tells them to do, like get a job, get married, buy a house, and have children, probably in that order. But they don’t think beyond that. I know I didn’t. In fact, that’s about what my life plan looked like.

Just before I got sick, I started thinking about leaving my 9-5 job and starting my own business. I didn’t know what that would be. I thought I might try to earn a living off of blogging (spoiler alert: this blog is 4 years old and earns nothing, so that won’t be how I earn my fortune.) I considered some other options. I dated and looked for Mr. or Ms. Right. And mostly I put one foot in front of the other.

Since I’ve been out of work, I am constantly thinking about the present and the future, about what I want and how to achieve it. I change it constantly, as my health and moods change. I’ve come up with several potential ways to work for myself from home part time. I know that I want a dog. I want to improve my health as much as possible while not being obsessed with it. I want a dog. I would love to find a life partner, but I’m also currently content with being single. I want to live someplace quiet and peaceful, preferably near the water. I want to exercise regularly, including physical therapy. I want to be financially stable. I want to spend less time home alone and more time with people I love. And did I mention that I want a dog?

Most people don’t think about their goals often, if at all. Having a chronic illness doesn’t necessarily change that. For some people, it might make them think about their goals less. I happen to go the opposite way. I need something to reach for. I need a happy place to aim for. It gives me a reason to try. Let’s face it, living with chronic illness is work! Reaching for my goals gives me a bit of incentive not to give up on that work.

What about you? Do you spend a lot of time thinking about your goals? Do you avoid them? Do you change your goals over time? What’s one thing on your list?

4 Comments | Decisions, Expectations, Job, Milestones, Raves, Relationships: Family & Friends & Dating & Sex, Unpredictable | Tagged: , , , | Permalink
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Why wouldn’t anyone want to date me?

February 14, 2015

I had an epiphany recently, and I have an ex-boyfriend to thank for that. Oddly enough, it was when he dumped me that I finally found confidence in dating.

Two years ago I wrote a post titled “Why would anyone want to date me?” and it was just what it sounds like. Now that I’ve had my epiphany, it’s painful to go back and read that. My mindset has changed, and I hope it never goes back.

I thought I’d struck paydirt with a guy who seemed ok with my health issues. In the end, though, he was overwhelmed. So you’d think that would have reinforced my fears that I’d never find someone who could handle my health problems. Instead, it was the opposite. When he dumped me, I asked why, and every time he listed a reason, I realized that really, I was too good for him. He was mainly concerned that I couldn’t “keep up with his lifestyle.” The funny thing was, I’d been worried that he couldn’t keep up with mine! While he was worried I couldn’t keep up physically, I was worried he couldn’t keep up socially, since he spent his free time alone at home, and I love being around people and doing things. I’m an introvert, so I love quiet time at home, but I also like to get out and do things either alone or with other people, whenever I feel up to it. Every single thing we did out of the house was planned by me. All he ever suggested was staying in and watching movies.

He also didn’t have many interests. Sure, he had less free time, since he was busy with his job and his kids, who he has part time. But I was busy taking care of my health, also a full time job. And I read books, both fiction and nonfiction, on a wide range of topics. I write multiple blogs. I’m working on several big projects. I do crafts. I follow local, national, and international news. I do consulting work when I feel up to it, more for fun than for money. I volunteer. I have many close friends who I spend time with. I am very much involved with multiple social groups. I’m interesting, damn it! I’m a catch!

There were more things about that relationship, but you’re probably getting the point. When he dumped me, I had to admit to myself that I was trying very hard to overlook my own concerns, mostly because I felt I should “settle” for anyone who treated me well and would have me. And when he started listing his concerns I had to admit to myself that I had many of my own. And when I really thought about his concerns and mine, and which were valid and which weren’t, I realized that I actually had a whole lot to offer someone. Maybe this guy wasn’t the right person, but someone else out there will be.

Obviously dating will still be harder because of my health issues. I don’t get out much, so it’s hard to meet people. Dating takes more energy than I have some days. And I need people to see past my health problems, to who I really am, so they can see that I’m more than just a “burden”. We’re all more than our health issues.

I won’t assume that the next person will see what a great catch I am. Maybe they will and maybe they won’t. The point is that I see it. I’m going to try to keep seeing it. When my confidence slips, I’m going to come here and read this post over and over again. I’m going to completely ignore that old one from a couple years ago. I’m not going to feel “unworthy” just because I have some health issues. Ok, they’re real problems, I’m not denying that.

But I’m also funny and smart and interesting and caring, and so what are some life-long health conditions compared to all of that?

1 Comment | Decisions, Expectations, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
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