Four years later

July 21, 2015

My physical therapist asked “How does that feel?” It took me a moment to answer, because I had to first block out of my mind the pain in my right wrist, in three toes on my left foot, in four toes on my right foot, and in my left knee. Finally, I had a sense of how my neck felt.

I started this blog 4 years ago today. It was very different then, in so many ways. I was very different.

Back then, I was amazed if 1 or 2 people read my blog each day. Today, I get at least 20-30 readers per day, sometimes over a hundred in a day, plus over 200 who get the blog emailed to them and more who read it in Feedly and other

Where readers have come from in recent months

Where readers have come from in recent months

readers. This blog has had about 33,800 page views…. That’s not much compared to some blogs, but I’m very happy with it. After all, the goal was never to win any popularity contests, but to have a small community. I have a bunch of twitter followers, too. For the first few months I blogged every single day. I still don’t know how I managed that. Now I average 2 posts each week and that feels about right, but I never pressure myself to write and I never worry about keeping any kind of schedule. Best of all, I have an active audience who often comment on what I write and on each other’s comments; that’s what I wanted from the beginning.

And then there’s me. Four years ago today I was working at a job I didn’t particularly like, going in at 9, leaving at 5, and barely surviving it. Every morning I struggled to get ready for working, have to lie down and rest for 20 minutes after my shower just so I’d have the energy to put on clothes. I came home every evening and did nothing but watch tv, eat, and write one blog post. Gone were the days of socializing after work. I started to make mistakes at work. I was always exhausted and I didn’t know why. I was in more pain than ever. I only felt decent when I was on Prednisone, but when I went off that, the fatigue and pain returned full force. So did the gastrointestinal symptoms that had gotten somewhat better while I was on the drug. I had no answers, and my doctors didn’t know what was causing my symptoms or how to help.

Now I have some answers, though probably not all of them. I have taken charge of my life. I no longer turn to doctors for all the answers; I do my own research. I still deal with fatigue and pain, but my gastrointestinal symptoms are almost entirely gone. I understand the workings of my body much better than I did before. I’m not working, or even trying to work, and that takes away so much pressure and stress. On the other hand, it also leads to less financial security, and that does have me worried. I no longer travel, but I have learned to be happy and content where I am. In fact, that’s the biggest change: despite all of my health problems and the other areas of my life they have affected (money, dating, travel, and so much more,) for the first time, I feel good about who I am and about where I am in my life. I am happy and content in a way that I never was before. I take time for introspection more than I did 4 years ago and I have learned more about myself through this long process than I ever would have expected.

If you’ve followed this blog for a while, you’ve watched me struggle to figure out which foods I couldn’t eat, to start a gluten-free diet, to deal with insensitive jerks, to find new doctors, to beg for tests, to cajole for new medications, to deal with dating, to find ways to tell friends and relatives and acquaintances and strangers about my health. You’ve read my political opinions, my frustration, my anger, my joy, my views on so many topics, and my issues with everything from sex to diarrhea. It’s been an interesting journey and I’ve been so grateful to have you here with me as I take it. It’s been rough, too. Still, I see some overall improvement. I get frustrated a lot of the time that the improvement is so slow, and that for every 3 steps forward, I end up taking 2 steps back. Still, I’m grateful for any improvement I can get.

So I’m looking back over these past 4 years and it makes me wonder: where will I be another 4 years from now? Only time will tell, but I’ll do my best to head in a healthy, safe, positive direction.

What about you? How has your situation changed over the past 4 years, 4 months, 4 weeks, or any other time period you want to think about? Are you trying to change direction? Or are you able to forget about the past and be present only in the moment? (I’m still working on that myself.) How are you doing?

4 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Job, Limitations, Milestones, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Will I get dressed today?

July 18, 2015

Back in the old days, I would get dressed every weekday around 7 or 8am, and later on weekends. Occasionally I’d have a leisurely Saturday where I’d stay in pajamas all day. It was such a treat! I loved the luxury of it, but it was definitely rare.

2015-07-18 20.51.04

Today’s glamorous outfit, a.k.a. pajamas

Well, times have changed. Now I force myself to get dressed on all but my sickest days because I’m worried that not getting dressed one day will lead to not getting dressed more days and soon I won’t have the drive to do anything. I live alone, so if I don’t leave my apartment, then I don’t see anyone. And if I don’t leave my apartment, no one knows if I’m dressed or not. So staying in pajamas all day would be so easy. And that’s exactly why I know I shouldn’t do it.

The other day I found myself in my pajamas at 4pm. This was even later than usual. If I don’t have to be out of the house for a medical appointment in the morning, then I usually don’t get dressed until noon. I shower and get dressed right before lunch and I hate that I always do it so late. I try to get dressed earlier, but it never happens. But the other day I was more fatigued than usual and I just couldn’t push myself. So I watched the hours tick by and finally, by sheer willpower, I forced myself to shower and get dressed so I could go out. I didn’t want to go out, but I’d been looking forward to that party for ages, and I knew I’d have fun once I got my ass out the door. (And I did! It was so much fun!)

Today was different. Today I didn’t have to be anywhere. That’s why it took extra effort to finally, finally get dressed at 5pm. While most days I get dressed right before lunch, today I waited until right before dinner. The funny thing is, it was a more productive day than most. I didn’t spend all day on Facebook or watching tv. Instead, I cleaned out my desk drawers, going through dozens upon dozens of papers….. old handouts from presentations I’d attended over the years, financial notes, and so many health insurance letters all made their way to the recycling bin. It felt fantastic to purge all of that clutter! And yet, even with that drive and excitement, I was still in my pajamas at 5pm.

Tomorrow I’m meeting friends for lunch, so I’ll have to get my butt moving a bit earlier. I might even be dressed by 11am! Now, wouldn’t that be something?

3 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

When the nightmares are real

July 15, 2015

It was only recently that I realized my dreams might be something to worry about. I started to suspect there was a problem when I read about the recurring stress dreams that people with PTSD sometimes experience. Mine probably aren’t that severe, but they’re similar in nature. Then a friend with chronic illness was talking about his health-related anxiety dreams in a way that assumed everyone knew it was problematic to have them. Hmm. All the little pieces added up, and now I’m thinking my dreams might be a reason for concern.

When I was a kid I was scared of a substitute teacher. There was no real reason for it, there was just something about her that bothered me. I had a recurring dream that she was chasing me down my street. I think she was carrying fire, too. Until recently, that was the only recurring dream I ever had, and I hadn’t had it in 25+ years.

Now I have a recurring dream where I’m desperate to find a toilet, but I can’t find any. Then I finally find some in a public restroom, but they’re built too high up on the wall, and I can’t climb on to them. I finally find others, but there are no walls between the stalls, and no doors, so there’s no privacy, and that absolutely terrifies me. I’m feeling the diarrhea coming on, wondering if I’ll shit my pants, and trying desperately to climb onto a toilet that’s 3 or 4 feet off the ground.

Before I can resolve the dream one way or another, I wake up, my heart racing, terrified that I’m about to have diarrhea in my bed. I run top speed to the bathroom and…. nothing. That’s when I realize it was a dream.

Lately I’ve gotten better at returning to reality quickly, and I usually stop myself before I get all the way to the bathroom and I return to bed. But returning to reality also means acknowledging that there’s a lot of truth in these dreams. When I was a kid, that teacher would never have chased me through the neighborhood streets carrying fire, but now I could easily shit my pants. It’s happened before and it will probably happen again. The other symptoms I dream about are real, too.

For a while I had recurring dreams where I accidentally ate gluten, then had to wait in agony for the onset of symptoms that I knew would come at me. Waiting for the symptoms was horrifying. I’d wake up with my heart pounding, fear coursing through me, usually sweaty and anxious. Thankfully, those dreams disappeared around the time I got rid of the last remains of hidden gluten in my diet. But for some reason, I had that dream again twice recently. I can’t imagine why.

I have other health-related anxiety dreams, too. Some are about pain, some are about my diet, some are about other symptoms, some are about doctors and insurance companies. Sometimes I dream about pain and then wake up to discover I’m actually in pain. There was one time I dreamed someone was screaming, then woke up to discover that I was screaming because the pain was so bad. My own screams woke me up that night.

What does all of this mean? I don’t have the answer. I don’t need an answer right now, but what I’d love would be to know if others experience similar dreams.

Have you ever had a health-related anxiety dream? Does it happen often? What do you do about it? Does it concern you? Please comment below, anonymously if you prefer, and share your experience. I think that it helps us all to learn from each others’ experiences. Thanks!

4 Comments | Expectations, Frustration, Isolation, Rants, Symptoms | Tagged: , , , | Permalink
Posted by chronicrants

Curing myself of comparisonitis

July 7, 2015

My friend P seemed to think that I was doing “better” than she was health-wise, because I was going out of the house more, running more errands, doing more housekeeping, taking more walks, and just doing more. I can understand how she felt. After all, she saw me on my better days.

The funny thing is, while she envied the way I could go out more on a regular basis, I envied the way she could take trips. They weren’t huge trips and they involved a lot of rest before, after, and even during, not to mention a lot of painkillers, but she took them. She could fly, while I haven’t been on a plane in more than 4 years (I used to fly 3-5 times each year!) But of course, I heard about these trips, and didn’t see the pain she had to endure to make them happen.

P envied one part of my life and I envied one part of hers. Sort of how I envy that blogger I follow who has created a great business she can do part time from home, when her health allows. And maybe you envy friends or family or strangers on the internet who seem to have that thing in life that you wish you had.

But when you really think about it, who are you actually envying? Who’s life are you seeing? Who are you comparing yourself to? I can tell you: a fictional person. You’re only seeing part of the picture, and you’re assuming the rest.

P saw that I was doing more errands and more housework than her, but didn’t consider that it was necessary because I have no one else to do those things. She has a husband who helps with them. I saw that P could fly, but I didn’t consider that she feels pressure to see her family, while my family is local. We were each looking at just a sliver of the other’s life. That blogger I envied? She probably has her own problems, but I wouldn’t know because I only know what she puts out there for the world to see.

Just like how you only know about certain parts of my life. Now, it just so happens that I’m very open about things on this blog, so you happen to know quite a lot about me, but obviously I can’t tell you everything. It’s not possible. Besides, it’s easy to focus on the things you wish you had and forget about the wonderful things you have that I don’t. Maybe I leave the house more, but on the days I don’t, I’m completely alone, while you have a spouse or children who you get to be with. I’m not responsible for anyone else, but I also don’t get to have the joy of having children or pets. I’m not on any medications with horrible side effects, but I haven’t found any medications to help me. You see, there’s a flip side to every coin.

I’m not suggesting my life is any better or worse than anyone else’s, only that’s it’s mine and so it’s the only one I truly know, just like yours is the only life you truly know. An interesting new form of comparison has come about with the spread of social media. Before, we might have envied the sliver of life we saw a coworker, friend, or relative leading. We might have compared our lives to those of celebrities. But it ended there. Now we can compare our lives to those of countless ordinary people on the internet who we’ve never even met. It’s so easy to look up any topic and find thousands of people who are doing better at that sport, playing that instrument better, or leading a healthier life than we are. But where does that get us?

It just leads to us feeling worse about our own lives.

So I decided today that I won’t do any more comparing. Well ok, I’m only human. I’ll do more comparing. But I promised myself that when I find myself comparing my life to someone else’s, I’ll make myself stop. I’ll remind myself that their life isn’t perfect and that while they might be kicking ass in one area more than I am, I’m kicking ass in plenty of others.

And now I’m challenging to promise yourself the same thing. The next time you find yourself comparing your life to that of a friend, an acquaintance, or a stranger online, stop, and remind yourself of all the ways your life kicks ass. Then move on to something that’s actually helpful and positive. I bet you’ll be glad you did.

What do you think? Do you suffer from comparisonitis, too? How do you feel about it?

6 Comments | Decisions, Expectations, Frustration, Limitations, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , | Permalink
Posted by chronicrants

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