Feeling jealous and alone

March 3, 2014

I know that jealousy is a useless emotion. I’m already working to change what I can, and a lot is out of my control, so there’s no point in being jealous. Yet I am.

You’d think I’d be jealous of my healthy friends’ good health, but I’m not. Ok, I am a little bit, but for the most part I’m past that. I know that I can’t have that, so I’ve let it go. Sure, I get jealous of their good relationships with their spouses, their kids, their pets – all things I could have but don’t. But what I’m really jealous of is my friend L’s situation.

You see, L also has chronic illnesses. She has chronic pain and other symptoms, so we can really relate to each other. What I’m jealous of is that she’s never had to handle her illness or it’s results alone. She moved in with her then-boyfriend (now-husband) as a teenager, and he’s always been there to take care of her. I, on the other hand, have been alone for the worst of my health problems. My parents were very supportive when I lived with them, and then I had tough years where I could manage alone. And now? Well, now I could move in with my parents if I had to, but for many reasons I’d rather not do that.

I’m lucky. I know I’m lucky. I’m able to live on my own, and that’s huge. And I’ve been able to go to college and work, which L never did because she was much younger when she became disabled. But still, I’m jealous that she has someone to help her out. Her husband earns a very good salary, so she can afford to have someone else do her laundry, to get medical treatments that aren’t covered by insurance like acupuncture and naturopathy, and to get massages, all without worrying about the cost. I either can’t do these things, or I pull money out of savings for them and then stress over them. She gets to have pets. She freely admits that she couldn’t care for them herself, and in addition to loving them, she talks about how much they help her. If you don’t know what I’m talking about, check any search engine and you’ll see the many articles that talk about the physical  and emotional benefits of having pets. I know they’d help me, but I can’t afford them or take care of them. Beyond the money, L has help and support at home. Her husband helps with the chores and does all of the cooking. He comforts her when she feels especially sick. He helps her make decisions about her health. Oh, what I would give to have that.

I was thinking about this today on the way home from the grocery store. I managed to do the shopping ok, but as we all know, it doesn’t end there. I was wondering how I’d manage to get the groceries into the house, and I thought about L, and how her husband carries in the groceries. And after buying everything, I was tired and needed to rest, but dinner still had to be cooked, and I thought about how L’s husband does their cooking. And I thought about how on days like today, when I don’t see anyone else except at the store, and other days when I don’t see anyone at all, it would be so nice to have a spouse come home and have a conversation with me, and give me a hug.

Everyone’s life is different. I know that. I know that I have a lot of things that L doesn’t have. I know I have a lot of things that many other people don’t have. Still, some days I get jealous, and today is one of those days. Some days, I just wish I had someone else to help me through the tough days and celebrate the good days so I wouldn’t feel so responsible for everything, and so alone.


Explaining why I don’t work to potential dates

February 15, 2014

I’m a pretty open person when it comes to the health-related crap I have to deal with. There are some things I don’t like to share, but not many. I’ll share about 98% of what I deal with when I talk to family and friends. Acquaintances hear a lot. I’m even pretty open with strangers. Until, that is, the topic of jobs comes up.

Last night was Valentine’s Day, so I did what so many singles do – I went to a singles party. This was a much better party than most, which is why I went. It had awesome people, it wasn’t in a club, there was some background music but it wasn’t too loud, and the entire point of the night was to have actual conversations with people and then exchange phone numbers/email with people you’re interested in. I’d gone once before, and this time was even better. I pushed my body hard and was thoroughly exhausted when I got home, but I felt it was worth it.

Aside from the aches and pains and exhaustion of standing so much, there was just one problem: the question, “What do you do?” This isn’t a very common question in some cultures. In Boston, it’s one of the first things people ask. They use it to define you, to learn more about you. It makes some sense, since people spend so many hours working. The problem is, how can I answer it? In general I’ll gladly tell someone that I’m not working because of health issues, but not if I think I might want to date them. I don’t want to scare them off yet!

I spent the night saying, “I’m not working right now.” But then the next question was always to ask what field I work in, and so many people asked if I’m looking for work, or what I’m looking for. I’ll be evasive, but I won’t lie, so that was a lot harder. I usually said I’m considering my options, which is true. I’ve been giving a lot of thought to what kinds of work I could do when/if I’m able to work again, even part time. But I just know that on any first date, the subject will come up again, and what then?

In the long run, whoever I end up with will have to be ok with my health issues and my inability to work, at least right now. The issue is that I want to introduce the topic slowly, and on my own terms. I want them to get to know the parts of me that aren’t controlled by my health problems, and that’s hard to do if health problems are the first thing they learn about it.

It feels like I’m trying to navigate a minefield. So I’m going slowly, one step at a time. I don’t know what I’m doing, but I’m hoping that maybe, one of these days, I’ll figure it out. In the meantime, if you have any suggestions, I’d love to hear them in the comments.


Handling the “too much”

November 14, 2013

This month’s topic at Patients For A Moment is this question:

So what do you do when you feel like everything is just too much?

I wasn’t going to answer it, but then I started thinking about all of the times I really couldn’t handle everything and how I responded to it, for better or for worse. I figured I’d share some of it. And in case the pattern isn’t clear, I’ll spell it out at the end.

The first time it was all too much was in college when I had mono. After almost 10 years of chronic pain, I didn’t think any health problems would stop me, but mono did. I took an incomplete in one class. I hated to do it, but I just couldn’t get all of my work done. Luckily, I got mono near the end of the semester, so I was able to finish the other classes. I took that one incomplete, and I made sure to finish the class early the next term. That one was fairly easy.

It was harder in graduate school. After so many years of pain and other problems, I was finally diagnosed as having an autoimmune disease for the first time. My doctor told me to get more rest and to avoid stress, two things that didn’t go well with graduate school. I knew I wasn’t coping well in general (it’s not a good sign when heating up canned soup is too hard,) so I spoke to my advisor. I only had one more term left, and I only needed the equivalent credits of one class. I figured I could manage it if I didn’t work. He agreed to let me leave the part-time job, but pointed out that meant losing my health insurance. I couldn’t swing that, so he pulled some strings. I was doing some research that term and the credits didn’t technically count towards my degree, but he found a way to make it count. Suddenly, instead of leaving the program in 4 months, I was leaving in 6 weeks! I felt like I had failed for the first time. I finished my work, passed the qualifying exam, and left. It all happened so fast. I got the degree, but it didn’t feel right. Still, I knew it was necessary.

A couple years later I was working. This was easier than school, with less stress and shorter hours. Still, it was a strain. I managed ok at the beginning, but after a while I really had trouble. I felt that if I could work less, or at least work from home, that I might be able to manage it better. I spoke to a couple of friends and got their advice. I approached my boss with a plan, asking if I could work from home one day per week, and listing the types of tasks I could do easily at home. He seemed doubtful, but agreed to a 6-week trial. That went well, and I continued it for the rest of my years there. Thank goodness! I didn’t like that I needed the day at home. I didn’t like that I needed special treatment. But boy did I feel better! Occasionally I even needed a second day at home, but I tried not to do that too often. I didn’t socialize as much as my friends did. I was too tired. But I did get out “enough,” so I figured that was ok.

The last time it was all too much was at my last job. This time, working from home wasn’t an option. And unlike before, it wasn’t simply that I was struggling. No, this time I was completely failing. After my showers in the morning, I had to lie down and rest for half an hour before I felt able to get dressed. I found myself resting my head on my desk at work. I started making mistakes in my job that I’d never made before. Every day I’d get home and feel unable to do anything more than eat dinner and watch tv. I stopped going out in the evenings. Eventually, as regular readers know, I left that job and went on disability. It was a very low point for me. I’d always sworn that I’d never let my health stop me from achieving whatever I wanted. But then, I didn’t know that the mono virus had triggered a major autoimmune disease which, after all these years, had finally wrecked my body. I had no choice but to do what my body needed.

So in answer to the question….

So what do you do when you feel like everything is just too much?

…my answer is that I stop trying to do everything. I know it’s tempting to try and push through, to do it all. I try to do that also, at least at first. But when I know I can’t handle it, when it’s just too damn much, then I cut something out, even when it’s something I thought I couldn’t possibly cut. Sometimes it’s job-related, sometimes it’s fun-related, but something has to give. I’m human. We all are. We have limitations. My limitations are not the same as my friends’, or yours, or the person who sits next to me on the train, but we all have limitations nonetheless. Trying to pretend otherwise won’t do us any good and it may do us a whole lot of harm. I don’t like it, but I also can’t change it. Instead, I do what I can to have the best life that I can within those limitations.


Am I really ready to date?

September 14, 2013

I have a date coming up, and suddenly I’m not so sure if I’m ready to date.

I’ve written before about my insecurity around dating because of health stuff and about getting back into the dating world after a long absence. I’m trying to get over those insecurities, but that’s not what’s holding me back. Right now, the issue is the physical logistics of dating.

I’ve had a crush on this woman for a long time, and the other day I finally asked her out. And she said yes! I’m so excited that she said yes! She knows about my health stuff and has always been very supportive. She doesn’t mind when I cancel plans at the last minute or when I need to make accommodations for myself. She gets it, and she always tries to help. So it’s not like a usual date, where I have to worry about disclosing and how the person will handle it – she already knows, and she still wants to go out with me, so yay!

So you’re probably wondering what my problem is. Well, we started talking about when to go out, and I got a bit stuck. I’m sure at least some of you can relate. I need to have the energy to not only go out, but to put on a good face. She knows about my illnesses, but I still want it to be a fun evening, of course. So I looked at my calendar: big event Sunday, so I’ll need to rest Monday; Tuesday is ok and maybe Wednesday, but I have plans Thursday so that means Thursday night is out and probably Friday too; I have something big Saturday so that means I can’t go out Sunday; that next Monday I have an exercise class for people with pain in the late afternoon so I’ll probably be to tired to go out in the evening; I have a medical appointment late Tuesday afternoon so Tuesday evening is also probably out…. and so on. Not good. Luckily she’s free this Wednesday. That means my plans on Thursday will completely exhaust me, but I think it’s worth it. But if we both want a second date? I can’t imagine how we’ll pull that off.

Of course, then there’s the date itself. She suggested dinner and a movie, but she was very understanding when I explained that sitting in those cramped theater seats for two hours does bad things to my knees. And she even asked if dinner would be too difficult. I think I can find a good place for dinner, and afterwards we may see a comedy show. I’ve been to that place before, and the seats will allow me to stretch my legs, plus it’s easier to get up in the middle if I have to. But there’s still the issue of staying awake. I get sleepy earlier now. Staying out “late” is hard. The good thing is that even though I don’t work, she does, so I imagine that she won’t want to be out late on a Wednesday.

All of these logistics have me worried. Maybe I’m not ready to date after all? I’m hoping that being out with someone so understanding will help, but I also don’t want her to always have to be so understanding. I want us to have fun. I want to enjoy myself. I’ve liked her for a long time and I don’t want to screw this up. I’m going to try to focus on the main thing at the moment: she said yes! Hopefully the rest will work out somehow.