A little support goes a long way

July 24, 2015

I was having a tough day. I was exhausted, fatigued, and in a lot of pain. It all felt overwhelming. I was supposed to spend the night at my parents’ house, but just the idea of driving down to them felt like too much. With my mother’s encouragement, I went anyway. She knew I’d feel better when I arrived, and I was pretty sure she was right.IMG_20150724_195633

I rested for a while and finally got in the car with my things. I hit far too much traffic for 3pm on a Thursday, but after nearly two hours, I arrived at my destination – it took double the time it should have.

As soon as I walked in the door I got a big hug from my mother, a smile from my father, and warm greetings from two wonderful pooches. It shouldn’t have mattered. It shouldn’t have made me feel better. And yet, somehow, it made all the difference. After some cuddling with the guy above, I felt so much better. Some good homemade food, nice conversation, and tv rounded out the day and before I knew it, I was asleep on the futon with this cutie pie stretched out alongside me. There’s just something about cuddling with a dog that makes me sleep so much better.

The pooch has been great medicine, but my parents have been, too. The simple things help more than they know. Helping me to carry things, fetching things for me, and just generally trying to help me feel good showed me how much they care. They made me feel cared for. And that’s why now, just 27 hours later, I’m still in pain, but I’m less fatigued and my soul feels refreshed. I’ll spend an extra night here because I know that no matter how I feel, my parents will always do their best to help me feel better. So thanks Mom and Dad! You’re the best!


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?


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?


Birthdays: to celebrate or not?

June 29, 2015

There are certain holidays that come with pressure to celebrate. New Year’s Eve comes to mind. A couple years ago I skipped it and it felt sort of nice, in a sad way. I was too depressed about my health to feel that a new year was worth celebrating. I played board games with friends, and was home well before midnight. That worked for me.

This year, my birthday was sort of the same. I was feeling lousy and did feel like celebrating anything, especially not getting another year older which, in my mind, meant another year of lost youth, another year of lost opportunities, and another year closer to the health woes of old age on top of my current health problems. Yeah, I wasn’t in the best frame of mind.

So I decided to skip it.

Whoa! Not so fast! My family and friends didn’t like this plan. I know they meant well, but I was surprised at how much pressure I felt. People kept asking me what I was doing for my birthday, and they were upset when I said I wasn’t doing anything this year. I tried to brush it off by saying I threw a party last year, so there was no need to anything this year. I think they all suspected the truth, though. They knew I was feeling down. Some of them knew I was feeling too sick to celebrate. I wasn’t sure if I’d be up for doing anything at all that day. Would I be able to leave the house? Get dressed? Take a shower?

A friend who isn’t working said she’d take me out to lunch that day. Ok, that seemed reasonable enough. Low key. Simple. And if I had to cancel at the last minute, she’d understand. That made things so much easier! When people asked what I was doing for my birthday I could say a friend was taking me out to lunch. Yeah, ok, it sounded lame. I knew that. But it’s all I had.

In the end, my friend and I had a lovely time. Except for her paying for lunch, and letting me choose the post-lunch activity (sitting by a pretty pond, then chatting at my place) there wasn’t much mention of my birthday. And that’s just the way I wanted it. Simple. Easy.

Holidays are hard enough when you’re single and there’s no default person to celebrate with. I don’t have an automatic date for New Year’s Eve or someone I know will celebrate my birthday with me. Sometimes that’s really tough. Throw health problems on top of that, and then pressure from loved ones to have a bigger celebration that I want, and it’s just too much.

So that’s why I didn’t really celebrate my birthday this year. And I’m ok with that. Maybe next year I’ll have a party again. Maybe not. Either way, I refuse to stress out about it.