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.

7 Comments | Educating, Expectations, Frustration, Job, Limitations, Rants, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Picturing my potential future

November 29, 2013

When you deal with major life illness, quite a number of unexpected things could happen. I’m going to focus on one in particular.

First, something expected happened when I had to leave work on disability: I gained a new perspective on life. I changed my mind about what I thought was important. A lot of people talk about that happening. Even healthy people expect that to happen to anyone dealing with a big illness. But then something unexpected happened, too: I had a lot of time to think. It makes sense to me now, but I hadn’t considered it before. Back when I was unemployed because I quit my job, I was busier than ever. I volunteered, did housework, met up with friends for lunch, exercised regularly, spent time looking for a new job, caught up on random life stuff (you know the constant “to do” list.) But this is different. I can’t go out much. I spend a lot of time at home and alone. At the beginning my brain was foggy and my memory was lousy so that I couldn’t do much reading or serious thinking. But thankfully those symptoms have improved. Now I read a lot of personal development books and blogs and I take the time to really think about them. After all, what else am I able to do?

I’ve been trying to stay positive and believe that I will get better at some point. The new treatment has helped a bit, and I’ll probably change the dose or try a different version soon. I really do think something will help. I know that I’ll never be truly “healthy.” There’s just been too much damage to my body. Still, I could be well enough to work, date, and socialize more. And when I think about that life, now I have a pretty good idea of what I do and don’t want it to include.

I don’t want to work too much or spend too much time doing boring chores and errands. Yes, the laundry has to be done and meals have to be cooked, but that needs to be balanced out with more fun things. I want to spend a lot of time in nature. I want to be around people I who make me happy and vice versa. I want to save my money so that I can quit working as soon as possible. Mostly, I want a simple life. I want to get rid of the clutter around my apartment (I’m working on that now, bit by bit.) I want to be present in the moment. I want to keep my to do list free of unnecessary things. I want to cross things off my to do list each day without stress, to just do them without procrastinating and then move on. I want to exercise regularly. I want to keep my health at the forefront by eating right, exercising often, and taking care of myself in general.

It’s so easy to imagine this life. I’m sure it will be harder to carry it out, but I sure plan to try! I imagine going to bed at a decent hour and waking up after 8 or 9 hours of sleep. I work efficiently at my own business for the first few hours of the day. (I think I will have to have my own business so I can have flexible hours and can work from home to accommodate my health issues.) I will take a nice walk, then eat lunch. Then I’ll work a bit more. I’ll stop working in the middle of the afternoon (I’m working on a plan to do the job part-time) and then use the rest of the afternoon to buy groceries, cook meals, do laundry, exercise more, etc. I will have the evenings free for dating, socializing, etc. My weekends will be free for that also. I will do as many chores and errands as I can during the week so that they don’t overrun my weekends. I will avoid shopping unless it’s completely necessary. I won’t buy anything unless I truly need it. I will get rid of anything in my home that I don’t really need. I will get rid of my car if I get healthy enough (I live on public transportation, so I only keep my car because some days I’m unable to walk to the bus or train.) I will spend most of my time enjoying nature and being with friends. I’ll save up the money I don’t spend so that I can retire young. After I retire, I’ll be able to volunteer more. I may even start a nonprofit. I’ve had an idea for a nonprofit floating around in my head for a while now, but I’m not healthy enough to manage it yet. If I feel able to, I’ll travel. There is so much in this world that I want to see and I’d be grateful to see even a small part of it.

Ok, I know this sounds a bit idealistic. And maybe it is. But I think I can do it, at least mostly. Sure, there will be stressful days. There will be days that I flip my priorities on their heads. That’s ok. It’s ok as long as most days are the way I just described. It will take effort and patience, but I’ll do it because I think it will be worth it.

So that’s the potential future that I’m picturing for myself. I don’t know if I will ever have the opportunity to try it, but I’m sure as hell going to keep working towards that goal!

Side note: If you like the idea of simplicity, try starting here: bemorewithless.com  This is my favorite simplicity blog at the moment.

9 Comments | Decisions, Expectations, Frustration, Job, Limitations, Unpredictable | Permalink
Posted by chronicrants

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.

10 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Job, Limitations, Milestones, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Incredible what 2 years can bring

July 24, 2013

The other day I wrote what has so far been my  most popular post. I felt inspired, so I wrote it. And then I went on with my day. But that night, just before bed, I looked at my calendar and saw the note I had made for myself a while back: it was the 2 year anniversary of this blog!

Anniversary

I feel bad, like I forgot a friend’s birthday. This blog has been so helpful for me, and I forgot its anniversary! It got me thinking, too, about how much has changed since I started writing this.

Two years ago I was just starting to feel much worse, which in hindsight is probably why I started this blog when I did. I wrote every single day for months, until my energy waned and I was forced to cut back. Still, even now it’s rare for me to have a day that I don’t think about what to write here. I have so many ideas, so many posts composed in my mind, and I hope that one day I can type them all out.

Two years ago I was typing into emptiness. My mom would sometimes read my blog, but that was about it. Now I have Subscribingdozens of readers on my mailing list, many more who follow me through twitter, and probably more I don’t know about who use Feedly, Digg, or some other reader. I get comments, which mean so much to me. It’s fantastic to know that people enjoy, are touched, or feel comforted by this blog. I want so much to reach out, and this my way of doing it.

Two years ago I thought I communicated well about my illnesses. Now I know better. As I write about things I often don’t even think to discuss, I realize how much I censor, whether intentionally or not. When I question if I should write about something, I realize that if I can’t be open about it here, in relative anonymity, then I must be pretty closed in real life. And when people comment on certain posts to say how rare it is to have these discussions, I remember that I’m not the only one with this problem.

Two years ago I was working full time. I knew my days of working full time were limited, but I expected to count them in years, not weeks. Now I have been out of work for almost as long as this blog has been around. I didn’t immediately return as I had hoped, and I’ve been coping with that. I don’t know if I will return to work some day. I hope that I will. But I’m trying to accept the uncertainty of it all.

Two years ago I thought I knew what was causing the worst of my health problems. Now, through a lot of research, I’ve found multiple other possible causes. I’ve discovered ways that I’ve been improperly treated. I have learned about new tests that need to be run. I have looked for new practitioners to see, including “non-traditional” ones.

Two years ago I thought I could never make “drastic” changes to my diet. Now I’ve redefined “drastic” because the changes are so worthwhile that I no longer think of them as being difficult. Food doesn’t matter. Health matters. Food is a means to an end for me, so I’ll do whatever it takes to make sure my food isn’t making me sick.

Two years ago I needed to vent. I got frustrated by so many health-related issues. My family and friends tried to understand, but they just didn’t get it. Now I have you. You understand. Sometimes things happen that suck and it helps to commiserate with people who’ve been through it themselves. Insensitive comments and rude actions need to be changed, but we also need to deal with them ourselves on a case-by-case basis. You’ve helped me do that. This blog has been more cathartic than I ever would have imagined when I started writing it.

So thank you for two wonderful years. It’s been a wonderful journey so far and I’m looking forward to seeing it continue.

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Edit: I forgot to mention that this is my 357th post here. In case you were wondering (I was, which is why I went back to look it up.)

1 Comment | Expectations, Frustration, Isolation, Job, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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