Dreaming of meeting people to date

August 7, 2014

I’ve never been followed by legions of suitors. That’s just not who I am. I’ve seen it happen on tv. I’ve seen it happen to friends. But it’s never happened to me. And I’m ok with that.

But there was a time when I dated. Maybe I didn’t date often. Maybe I didn’t go out with a new date every week a la Sex & The City or Friends. But I dated.

But that was in the old days, when I was healthier. When I went out. These days, I stay in most evenings. Evenings are tough for me. When I do occasionally go out in the evening, it’s a real effort, and I only do things I know I can handle, like quiet evenings with friends at someone’s house. This is fun, but it doesn’t exactly lend itself to meeting new people. Sure, I’ll occasionally meet someone new, but usually my friends’ friends are already in relationships. What I need is to really go out. I need to attend meetup groups where I can meet single people. I need to get used to flirting again. I need to feel comfortable enough in my body that I’m not constantly wincing in pain.

I’ve worried in the past about meeting someone who could handle my health issues. I’ve finally come to believe that there are people out there who would not see my health problems as major obstacles. But how will I find those people? I know plenty of people who were ill before they married their current spouse, but usually they met their spouses when they were well enough to leave the house. Where would I meet someone now? At the grocery store? In a doctor’s waiting room? Sure, those are possible, but I’m not exactly counting on them.

After years of fearing any sort of commitment (for reasons completely unrelated to my health,) I’m finally ready to be in a serious relationship. I’m ready to meet that person who makes my heart flutter. If only I could leave the house enough to actually find them.

Note: I sincerely hope that one day my regular readers will see me writing about improved health, dating, a relationship, travel, a job of one sort or another, and the other things I’ve been hoping might still be possible some day. I haven’t lost that hope, even if some days I feel a bit discouraged.

13 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , , | Permalink
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What I really mean when I say “I don’t mind”

July 16, 2014

Many of us project our feelings onto other people. I hate mushrooms, so you must also hate mushrooms. I would love to go to Europe, so I’m sure that guy over there wants to go to Europe. It happens a lot. But when it comes to my health issues, it bothers me when people not only project their own feelings onto me, but then don’t accept my corrections.

I try to be polite and not complain about things. So sure, maybe I won’t say if something is bothering me. But I don’t lie. So if I say that something doesn’t bother me, then it does. If I say that it does, then it does. Simple, right? You would think so. But you’d be wrong.

I went to a wedding this weekend. Of course my health problems limited me and altered my activity a lot. Some things I minded and some I didn’t. I minded having to leave the rehearsal dinner early. I minded not being able to walk around the city more during my free time. I minded not being able to dance at the wedding. I minded having a racing heart and horrible nausea for several hours one night. I minded leaving the wedding early. I minded the pain I was in. I minded a lot.

What I didn’t mind was the food.

It’s not like I expected to eat the way everyone else ate. I made it clear to the bride and groom that I was very appreciative of their accommodations for my diet. They got me special meals that I could eat. It was fantastic of them. They weren’t the problem. It was others.

I spent too much time at the rehearsal dinner answering my table-mates questions about my special meal. They kept expressing concern that I couldn’t eat this or that, and I kept saying that I didn’t mind. Then the same thing happened at the wedding itself with different table-mates. I wanted to just talk about normal things, and instead I answered all sorts of questions about what it means to be gluten-free, how I handle it, etc. Again, they felt bad I couldn’t eat all of the rolls, desserts, and other foods. Again, I assured them that I didn’t mind.

Because I didn’t mind!

Food is important to many people, and I don’t just mean as a source of nutrition that keeps us alive. People have emotional associations with food. People think food is terribly important. I’ve gotten sick off of food for about 20 years now, so I would be happy to never eat again if there were pills I could take instead. I have some positive associations with food, but more negative ones. And even if I really do want to eat something, I want to not feel sick even more. I don’t feel like I’m “missing out” when I avoid eating something, as long as I can eat something else then or soon after.

But too often, people don’t believe me. They think I’m just being polite. They think I’m downplaying my despair at not being able to eat the same food that they eat. I wrote about this a while back with “The oh-I-could-never-do-that response” and this disbelief is just a projection of that feeling. Apparently many people can’t imagine that anything could ever be more terrible than missing out on, say, a piece of wedding cake, and so they express sympathy, because eating cake is so important to them. As if missing it is the most horrible thing happening in my life. I wish.

So for all of you out there, the next time someone says they don’t mind missing out on something because of their health, consider the possibility, just for a moment, that they mean what they say. Consider that some things just aren’t as important to them as they are to you. Because maybe, just maybe, that’s the truth.

What about you? Have you had someone doubt you when you say you don’t mind missing something? Do you get frustrated when you say you have to miss something and your needs aren’t respected? Is it difficult to explain why you mind missing some things and not others? Please share in the comments!

3 Comments | Educating, Expectations, Frustration, Gastrointestinal, Limitations, Pain, Rants, Symptoms | Tagged: , , | Permalink
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What would you say is “real” about chronic illness?

July 10, 2014

I thought about starting this blog for a while before I actually did it. What finally pushed me to get started was one too many “inspirational” stories. You know the kind. Someone who had a leg amputated climbs a mountain and we should all be inspired blah blah blah. Now, I think it’s great that someone can do that. What bothers me is that it gives the impression that 7-10-2014 5-46-47 PMwe can all get over our disabilities if we just try hard enough. Yeah. That’s just not how it works.

I didn’t know how many others felt the same way, but I wanted to write about the reality for me. I wanted the people close to me to understand a bit more about how it really works. And at the same time, I wanted other people with disabilities and chronic illnesses to see that they weren’t the only ones suffering on the couch instead of climbing mountains. It turns out I wasn’t the only one who felt that way; my most-viewed and most-commented on articles are the ones about things we don’t usually discuss publicly, like pooping on a guy during sex, boob growth from Prednisone, feeling guilty about making others worry, the frustration of not knowing why I feel so crappy, the frustration of seeing doctors who won’t or can’t help. I bet you’re nodding along to at least one of these. And I bet at one time, or maybe even before you read this, you thought you were the only one who felt that way. I know I did. It’s sad how alone we can feel with these illnesses.

That’s one reason I love the idea of a bunch of people sharing stories all in one place. Blogging is great, but I think we all know it can be hard to follow multiple blogs. And when you don’t even know what’s wrong with you, how do you know which ones to follow? That was my problem for a long time (but with books, in the days before blogs came out.) Plus, maybe I’m old-school, but I love the idea of a book. So I don’t know about you, but I’m going to participate in this project for an anthology about chronic illnesses. The hard part will be deciding what to write about! There are so many possibilities to choose from!

I don’t usually write posts about projects like this, but I also don’t usually participate in them. And this is also my way of helping out with a signal boost. Anthologies usually don’t get published unless there’s significant participation (dozens or even hundreds of articles submitted) and under “How you can help” she asks people to pass along the word about the project, so at least by writing this, I’m doing my part (plus I’ll post to Facebook and Twitter, too.) If you want to help spread the word, you can share the link to this blog post or to the project itself: http://chronicillnesstruths.tumblr.com/aboutthebook

If you’re thinking about writing, consider this line taken from the “How you can help” section at the end: ” If you want to see more voices like yours in books like these, here’s your chance!” That’s good enough for me!

9 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Raves, Symptoms | Tagged: , , | Permalink
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What about the infectious diseases?

June 18, 2014

It started with a Twitter chat about different thyroid meds. Then we were emailing about hypothyroid. It morphed into conversations about our families, our hometowns, and the other stuff of life, but it always came back to health stuff. And then the other day Miss Diagnoses emailed me a transcript of an interesting talk about tick-borne illnesses and how their symptoms often masquerade as autoimmune diseases. Hmm. There’s something familiar about that!

I read the 21 page transcript, then I visited the doctor’s web site. I ordered his book from my library system and will pick it up next week when it arrives at my local branch. I considered trying to visit this doctor, without insurance, 5 hours away. And then I checked myself. How many times have I traveled down a similar path?

There are so many things that could be the cause of my health problems. There are so many things that could be contributing factors. It’s hard to know which to pursue. But every time I see a potential answer to the big question, I grab hold of it like a life jacket in the middle of the ocean. Then I remember that there’s a boat nearby. I’m just not sure if I can manage to swim to it, or if it might have a hole in the bottom. Because if I see the wrong infectious disease specialist, I might be told I don’t have any infectious diseases even though I do. Or I might be told I need treatment that I don’t need. Or I might be given antibiotics for 1 month when I really need them for 1 year.

There was a time when I believed, as so many people still do believe, that if you get sick, you see a doctor, they find the problem, they treat you, and you get better. But I know better now. I have literally dozens of stories to disprove that neat little theory. Take last fall. I saw a sleep doctor who said there was nothing he could do to help me. He gave me a referral to a sleep psychologist. Great. Then I saw someone else in his practice (the doctor I’d originally been trying to see anyway!) He ordered tests that the first doctor didn’t even suggest. He suggested a medication change that the first doctor ignored. I ended up with a sleep apnea diagnosis that the first doctor never considered. And he prescribed a CPAP machine that I was clearly never going to get from the first doctor. The CPAP has made a huge difference for me. I sleep so much better, and I feel more clear-headed. Some nights I haven’t used it all night for one reason or another (an ear infection, congestion, a weird dream that caused me to take it off in my sleep) and there’s a noticeable difference the next day not only in my fatigue and energy levels, but also in the clarity of my thinking. More than that, if untreated, sleep apnea can be dangerous. One doctor diagnosed it. Another never considered it. And that was in the same practice.

I can give similar stories in the fields of endocrinology, rheumatology, internal medicine, physical therapy, psychology, dentistry, orthopedics, and probably others that I’m not thinking of right now. So why should infectious disease or any other specialty be any different?

And yet I know that I need to pursue this. And visiting an supposed-expert 5 hours away for many hundreds of dollars just isn’t the most realistic approach. I need to find someone local, and I really won’t know if they’re any good until I try them. And even then, I don’t know enough about the field to be sure. But I’ll try, because what other option is there? Can I really risk leaving this stone unturned?

I started a list tonight of new paths to pursue, new potential pieces of my health puzzle. Maybe this isn’t one of them. But there’s no way to know until I try.

If you know of a great infectious disease specialist in Boston, please let me know in the comments or email me at msrants at gmail dot com ! And I’d love to know about your experiences with infectious disease diagnoses and research.

7 Comments | Educating, Expectations, Frustration, Healthcare, Pain, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

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