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!

Thank you – I’m touched!

April 1, 2015

I just want to say a quick thank you to Tamara, Jackie, and whoever else nominated me for this award! I can’t tell you how much it means to me. I didn’t want to say anything during voting because I’m not thanking you in order to get extra attention. I just honestly don’t know how best to reach the anonymous person who nominated me. So thank you!

…and he didn’t run away

October 8, 2014

Usually when I feel especially bad I avoid people, even people who want to help me. Part of it is that I don’t have the energy to deal with being around people. Even talking is too exhausting. Part of it is that I don’t want them to see me in that state. Sometimes it’s unavoidable, and that’s why several people have seen me when I feel especially bad. But I can count that number of people on my fingers. The other night, though, was probably the first time I voluntarily let someone see me that way.

I mentioned last month that I’m seeing someone. And it’s been going well. It’s been a long time since I’ve gotten this far into a relationship. We’d known each other before so he knew I had some health issues, but it was a vague knowledge, acquired from being in the room while I spoke to others about it. But on our first date, I brought it up and answered some questions. Since then, I’ve answered more. I canceled our second date because I felt too exhausted. Our second second date was just hanging out at my place and watching a movie because I didn’t feel up to going out. He was very understanding. We haven’t been seeing each other for very long, and until this week, that was the worst I’d felt.

The other day a lot of stress and activity caught up with me and I had a BAD day. You probably know the kind. It started terrible and then got worse. I was barely getting by. We had a date planned for that night. We were just going to hang out at my place, but I wasn’t doing well. I spent the morning reading, but that became too difficult. I spent the afternoon sitting on the couch watching tv, but that became too much. I spent the evening lying on the couch, alternating between watching tv when I could and just thinking when the tv was too much. I had emailed him to let him know that I might not be up for getting together. He told me that I could let him know at the last minute. He was completely understanding. And for once, I didn’t feel any pressure at all. I knew that if I canceled, he’d understand. This was so unlike most social situations and was a huge relief!

So there I was, lying on the couch, needing to go to the bathroom for about 2 hours but not having the energy to stand up. And I knew exactly what I wanted. So at the last minute we spoke on the phone and I told him the truth: I wanted to see him, but I wasn’t sure he should see me this way. He asked, “Is this the last time you’re going to feel like this?” and I fought my natural instinct to be vague and simply said, “No.” He responded, “If this is going to work, I have to be able to see you like this.” I was floored. He was right, of course, but still…. I pointed out that since this would happen again, he could see me like this another time, maybe in a month or two when we knew each other better, but he insisted there was no time like the present to see me going through this. And he came over.

It was a bad night. I rallied for a bit around the time he arrived, but that didn’t last long. For a little while I was able to sit up while we talked. We cuddled. He held my hand, which was all I really wanted. He asked about how I was feeling and what caused it and things like that. I explained the best I could. It was hard to collect my thoughts, and he kept having to wait while I tried to form sentences. The brain fog was thick that night. We talked about other things, too. It was a good distraction. Most of the time I had to lie down. I wasn’t just fatigued, but weak. So weak. Most of the time my eyes were closed. Keeping my eyes open was too hard. Processing visual stimuli was too exhausting. So I lay there with my eyes closed and we talked. He offered to help me with household stuff, but I told him that all I wanted was for him to be there with me and hold my hand. And it was true.

It was hard for him. I could see it in his eyes, in his face, felt it in the tenseness of his muscles. I kept checking in with him, asking him how he was doing. He just kept saying he didn’t like to see me in pain. I couldn’t tell if there was more to it than that or not. But it was hard for him, I knew that much. It was especially hard when, in the middle of a sentence, I stopped talking, had trouble breathing, and grabbed my abdomen. The pain was intense. In an instant it had jumped from a 3 to a 7 on my pain scale. It came on suddenly, or so it seemed. My guess is that there were warning symptoms that I’d ignored because of the fatigue. I wasn’t able to look at him during that, so I couldn’t see his face, but I’m guessing it was surprising for him. I’d mentioned pain, of course, but he hadn’t seen it have any effect on me. Not until that moment.

He stayed with me until that pain passed and I said I wanted to go to sleep. Then he left.

He didn’t handle it all perfectly, but I doubt anyone would their first time out. He told some stories that were probably meant as a way to make light of pain and discomfort, but just sounded like he was trivializing it. He didn’t hold my hand enough. I would have loved for him to stay until I was in bed. He wasn’t perfect, but he was pretty damn close. And he seemed to handle it all ok. Still, I was nervous.

I woke up feeling significantly better. My thyroid was still swollen, my adrenals were still struggling. I was fatigued, but not weak. I ate something for the first time in 22 hours. I emailed him to let him know I was doing better, and he wrote right back. He’s a good man, a strong man, and I was almost certain he’d stick around, but of course there was that little niggling doubt. There were the voices of all of those who’d had negative experiences of this type. So I held my breath and waited, and then there it was: he casually brought up our plans for Friday night. As if it was no big deal. As if it was assumed we’d keep those plans. And I guess it was. But what a relief.

So we’ll be going out on Friday. I’m doing better each day, and I think that by Friday I’ll be able to keep our plans to go out. But I know that if I need to stay in, he’ll be ok with that too. Actually, I think he prefers to stay in. I’m the one who’d rather go out! I’m looking forward to showing him that I’m back to the way I was when he saw me last week, before that terrible night. And I want to talk to him about everything, to answer his questions, to take his temperature on this. We all have baggage. I know that. He certainly has his, too. It’s just that mine is very visible and very hard to ignore, and he had to face it early on.

Still, it’s hard not to notice that we have a date for Friday night. So far, he hasn’t run away.

Please don’t suggest shortcuts unless you’re going to help pay for them

October 16, 2013

People like to offer advice. They want to help. I get that. I want to help others, too. But when the advice involves money I don’t have, and I point that out, arguing the point really doesn’t help.

Example 1: “Why don’t you order groceries to be delivered?”

This is suggested to me a lot. Yes, that would be great. It would save me time and energy and effort and the pain of walking and driving and reaching and carrying. Perfect solution. But it’s expensive. Only the more expensive grocery stores offer this service, and then they charge extra for this service. I just can’t afford it. I point this out to people and too often they try to argue that it would be worth it anyway. They don’t seem to understand that I am living off of disability payments that don’t cover all of my expenses as it is, and that might be cut off any time the insurer feels like it (well, that’s essentially the case.) So yes, grocery delivery would be incredibly helpful, but that doesn’t mean that it’s an option for me. I wish I was. I really do. But it’s just not.

Example 2: “Why don’t you use a laundry service?”

Wow, that sounds nice. Someone else would wash all my clothes and linens. I’d just have to prepare them and put them away. I’d love that! No more lugging everything down the hall, into the elevator, to the basement, and into the machines, then returning later to put everything in the dryer, then returning again even later to lug it all back up to my apartment. I would even have to fold clothes. It sounds heavenly! But I balk at the laundry prices I’m already paying: $2.50 to wash each load and $2.50 to dry each load, which is why I let some clothes dry on racks in my living room now instead of paying for the dryer. If I have trouble paying those prices, how am I supposed to pay even more to have someone else do my laundry? People try to argue that it’s not that much more to pay someone else, and it will save me money on detergent, etc. Um, I don’t pay that much for detergent (just how much do you use?) Besides, if the current cost is too much, a higher amount isn’t magically ok. It just doesn’t work like that.

Example 3: “Why don’t you order in for dinner?”

Oh, don’t get me started. It is so much more expensive to buy a restaurant meal than to cook at home. Yes, it would do wonders for saving energy and reducing pain on the days I need it most, but that doesn’t mean I can afford it! Plus, it’s just not healthy – I can’t be sure what’s in those foods, and my health is the most important thing. I have a list of easy meals to make from ingredients I always have on hand and I grow the list whenever I can. Failing that, when I feel well enough I often cook in large quantities and freeze the extras, so I can always pull something out of the freezer. People try to argue that it’s worth it to order in. Maybe it is to them. Sure, you with a job and a steady income might eat out sometimes. Good for you. But you can’t assume we can all do it. There are financial limitations, and this is one of mine.

There are so many more examples like this. I know people mean well. They really do. And I don’t mind the suggestions. But when I say I can’t afford it, that means I can’t afford it. Trying to suggest it’s “worth it” just doesn’t work. So my new response will be that if they think it’s that important, they should be offering to cover the cost for me. If they won’t do that, then the conversation is over. Kaput. Finished. I live in the real world, and in the real world I’d rather pay for medical care than for grocery delivery. Yes, that is a choice I must make. It’s a personal choice. And I’m certain I’m making the right one for me.

Must I educate everyone?

August 5, 2013

I went to a party the other night. (As a side note, YAY! I got out of the house and went to a party!) I know the hosts through a former job, and I had met a lot of the other guests through them and through that same job. I hadn’t seen them in years, so while at a normal party one or two people may ask, “What do you do?” at this party everyone asked. I hate that question, but it’s hard to avoid. I mentioned to one guy that I was unemployed. He said he wished he could get that gig. I was about to respond, “Yeah, it’s a great gig except for the lack of any income!” and just laugh it off, but our host overheard and mentioned that I was out on disability.

So here’s the problem: he shouldn’t have said that. I didn’t mind, but in general, it should be up to the person in question to disclose their disability status or not. It’s no one else’s place to do that. So I feel like I should say something so that he knows and won’t do it to anyone else. After all, I don’t mind, but there’s a good chance that someone else will. My guess is that he was trying to help me out but clearing things up, but there many times and many people where I don’t want it mentioned. After all, this was a party. I didn’t want to discuss my health – I wanted to have fun!

The thing is, I’m tired of educating everyone. Yes, I’d like to help him avoid offending someone else, or making someone else uncomfortable, but do I need to do that? I mean, it’s not my job to educate everyone, right? And it’s exhausting to be doing that constantly. I like to think of myself as a health activist, but it doesn’t have to be 24/7. At some point, enough is enough, and I think I just hit the point where I draw the line.

I like to educate others. Really, I do. I help whenever I can. This weekend I offered advice to parents whose teenager recently came out as gay and is having a hard time (I’m bi.) Today I’m helping someone newly dealing with chronic pain figure out the support services that exist in our area. But must I always correct honest mistakes? Maybe not. Maybe I’ll just let this one slide.

And yet, I feel guilty. So maybe I’ll say something after all….?

The little things really DO make a BIG difference

June 29, 2013

It’s amazing how a small thing change make a huge difference. I was just getting mentally ready to go to a friend’s house. Pills in purse? Yes. Food? Need to bring some. Clothing? Better make sure it’s all loose today. Cooling towel? Cool enough to work for the car ride. The routine is familiar, but annoying.

And then I got a text from my friend: “What room temperature is best for you?”

WOW! We hadn’t discussed that. I knew he had a/c, and I’d mentioned that I’d need him to turn it on, but that was it. But he remembered how sensitive I am to heat. He knows that often I don’t meet up with him for lunch because I can’t stand the humidity. I know he and his wife don’t love the heat, but unlike me they can certainly deal with it. And he thought to ask what temperature I want his a/c set to. He’s going to change the temperature of their apartment for me.

Now that’s a thoughtful friend!

A true friend understands

June 17, 2013

As I’ve said many times before, my sister and I don’t get along. Yesterday was another good example of why I don’t like to be around her.

My mother made a big dinner for Father’s Day. After dinner, I was sitting in the kitchen talking to my mom while she put food away. My sister was washing dishes, and suddenly asked me to help dry. Now, while we’d been sitting around earlier, I had made several long trips to the bathroom. I was pale. My mother commented later about how bad I looked. My eyes were puffy and half closed. While the rest of the family had talked animatedly in the living room before dinner, I had been laying there half asleep, barely saying a word. So it was pretty obvious I wasn’t feeling well. And yet she was asking me to dry dishes. I didn’t want to start a fight, so I just stood up and dried a couple of dishes. I did it slowly, careful not to drop anything, careful not to fall when I turned to put each one down. And after a few, so there just a little space in the dish rack, we all went into the dining room for dessert. I figured it was good enough. It was more than I should have done.

After dessert I didn’t even bother going to the kitchen. My dad and I sat at the table chatting – I figured he shouldn’t be abandoned while my brother-in-law was taking their dog outside for a potty break. My mother and sister were cleaning up in the kitchen. I heard my mother thank my sister for her help as my sister walked into the dining room, where I sat with my dad. My sister responded, “Well I couldn’t let you do it all by yourself.” Then she turned and looked right at me. I would have given her the finger, but again, I didn’t want to start a fight in front of my parents.

Now let’s compare that to the day before. A friend was visiting from out of town. I wanted to see her and her three kids, but I didn’t feel up to going to her parents’ house where she was staying, 1/2 hour away from me. So she agreed to make the drive up to my neighborhood. There’s a great playground within walking distance of my place but I didn’t feel up to walking, so she drove to pick me up. She understood that I couldn’t help much with the kids, and didn’t mind that I sat on a bench in the shade while she chased them. She was just happy for our time together. She even gave me a birthday gift. I pointed out that I didn’t expect anything – after all, I hadn’t given her anything this year. I can’t afford it thanks to the insurance bullshit. She said that even though I couldn’t afford to give gifts, it was still my birthday and she wanted to give me something. And you know what she gave me? A big gift bag full of gluten-free goodies! She gave me several kinds of pasta, flour, cake mix, pancake mix, pretzels, and cookies – all gluten-free! She knows how hard it is for me to find some of these things, and she gave me exactly what she knew I’d want and enjoy. And as she gave it to me, she offered to exchange anything I couldn’t eat, since she wasn’t sure exactly what my other food restrictions were. Talk about someone who understands!

Sure, my sister can be a bitch. Sure, she didn’t wish me a happy birthday. But I’m choosing instead to focus on the excellent people in my life who are wonderful, understanding, and supportive. Most of us have lost people due to our illnesses, but some of us have been lucky enough to find true friends will always be there for us.

As a side note, I want to remind myself and you that we contribute to these friendships too. Maybe I can’t babysit for my friends or cook for them when they’re ill. They offer to get me groceries and pick up prescriptions. But I lend an ear and am very supportive. I have helped them prepare for job interviews, research insurance for a kid’s illness, and just listened to them complain about jobs and families. Our illnesses don’t prevent us from being good friends. Some people don’t get that, so it’s up to us to focus on the ones who do.

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