Winning the battle against my fears

December 22, 2018

I used to travel a lot. I flew to Florida twice a year to visit my grandparents, I drove to New York twice a year to visit my other grandparents. I drove to Maine many times a year to spend a weekend or a week in my family’s vacation home there. Sometimes I flew to another state to visit friends. On top of all of that, I would take one week long bigger trip to someplace I hadn’t been before. Yes, I knew how to squeeze every last hour out of my vacation days! (There were many exhausting long weekends!)

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My last trip overseas: London

That was my life before. Before my chronic illnesses became quite so disabling. I can no longer drive the 4 hours to New York. I have not been on a plane in 8 years. Eight years! I used to fly 3-4 times every year and now…. I feel stuck at home.

Travel opens up our eyes to new experiences and unfamiliar cultures. Without that, my world has been feeling very small. I first went overseas in college and I immediately got the travel bug. I have been to a handful of countries, with tons more that I want to see. There are also so many places I want to see right here in the U.S. But that requires flying.

I was never scared to fly before, but now I am. I’m not scared of terrorists or of crashing. I’m scared of triggering a flare-up of my health issues. I’m scared of feeling sick while trapped in the air. And it’s holding me back.

The first years of my self-imposed ban flying were absolutely legitimate. Flying would have been horrible for me. Even car trips to New York when someone else drove were hard. I barely saw my grandfather in New York in the final years of his life, and that was brutal. We spoke on the phone often, but still.

But I realized recently that it’s no longer my health that’s stopping me as much as my anxiety. Sure, there are health issues too, but I think that I probably could have managed some travel in the last year or so. It’s time.

So over the summer I promised myself that this fall I would go someplace I haven’t been. But I’m not ready to fly. If I can’t fly and I can’t drive far, that means taking a train. Trains are pretty good for me, and I will write a separate post about my experience with Amtrak’s accommodations for folks with disabilities. Still, they’re limiting. I chose Philadelphia. I’ve heard good things, I’ve never seen the city, and it’s a reasonable train ride.

Not long after this decision I began seeing a therapist, and she encouraged me to try flying as well. I want to start with a very short flight, so Washington D.C. seems reasonable. I flew there once many years ago (the times I drove) and it’s super fast. I figured I would go to Philly first, then DC later. If those went well, I could build up, and maybe finally manage to visit friends on the west coast, see the Grand Canyon, and more! Maybe I could even visit my friend in England! But first things first: a train ride to Philly.

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Last week I saw the Liberty Bell!

This was HARD! Buying the train tickets took a lot of emotional strength. It was difficult to find an AirBnb in the neighborhood I wanted that was on the first floor. I thought through every aspect of the trip many times: what medications to bring, how to handle food, how to manage my limited energy. I was ready. I had planned. But I knew that things could fall apart at any time without warning. Should I really do this? Maybe it was all a big mistake!

Less than a week before the trip I had a bad night. My adrenals crashed, which happens sometimes, and it’s the worst of my symptoms. I was nauseated, fatigued, weak. I was shaking, crying, and scared. And I panicked.

I started to think, not for the first time but definitely more strongly, that I should cancel the trip. That was the last day that I could still get a reimbursement on almost everything. I could have a quiet week at home. Things had been so hectic. I was planning for an event that week. Yes, I had planned a full 2 days between the event and the trip so that I could rest and pack. That was plenty of time. The event wouldn’t be that tiring, it just took planning. Still, it was overwhelming. I couldn’t manage. I could cancel the trip and stay home and get shit done around the apartment. That sounded really nice!

Thankfully, I had a therapy appointment the next day and she talked me down. I cried the entire time. I was crying before we even started talking. I was a mess of fear and anxiety. I had put a ton of pressure on myself, because if this trip was a failure, I knew I’d be too scared to try travelling again. But I WANTED to travel. And if I didn’t try, I’d never know.

After an hour of talking, I felt better. Not great, but better. I would do this. But I was still nervous.

The next day, I felt confident again. I could do this! What changed? One thing: I felt better physically. My anxiety gets much worse when I feel sick. That makes sense, since my anxiety is about being ill.

For the next few days I slowly got shit done. I wrapped up things at home. I told myself I didn’t need to do it all. I went to the event. I had many days of low energy and I let myself stay home and rest. I cut more things off my to do list. I kept it to the bare minimum. Now, a full week after I got home from the trip, I still haven’t done some of those things, and that’s ok! 

The day came. I had packed the day before. I didn’t need to leave until noon, something I planned very intentionally. And I did it. I got on that train.

I will probably tell you about the trip another time, but the short version is that it was great! I didn’t do nearly as much as I would have liked, even given my health limitations. One day I was fatigued and couldn’t go out much. One day I was in so much pain I could barely walk. Still, I did it. And somehow, miraculously, I didn’t have any adrenal crashes! Almost as amazing (and probably related,) I spent the last 2 days with friends who ended up getting very sick, and I never caught their bug. Incredible!

I came home feeling like it was a success because I traveled someplace new and my health managed ok. That makes me feel much better about getting on a plane to DC. Not great – I’m still nervous, and when the time comes I might panic again – but at least now it feels doable. And while my grandparents are sadly no longer alive, I have several cousins and close friends in New York, and in a few months I will take a train down there to visit them.

Yesterday I went to therapy and she eagerly asked how my trip was. I was happy to tell her about my success. But honestly, even just going was a huge win for me, no matter how it turned out. I was scared and anxious but I went anyway. I’m proud of that.


But did it help?

September 25, 2018

I go to so many medical appointments, sometimes I just take for granted that I have to go. But last week, after I wrote about having 13 appointments in just one month, I also mentioned it to a friend, and she asked me something that shocked me: were they helping?

It shocked me because I hadn’t thought to ask this myself! You would think that of course I’d be evaluating each appointment to see if it was worthwhile, but at some point, I just stopped doing that. I have gotten all too used to “follow up” appointments where the doctor reviews my symptoms, nods, and then tells me to come back in 4-6 months without suggesting any changes to what I’m doing. And often this is fine, because I feel like I’m on a decent course. Or because I know the treatments come with bad side effects that I want to avoid. Still, it’s worth taking a step back every now and then to ask,

Is this working?

Is this worthwhile?

I’m glad to say that in the case of this hectic September, the answer is a resounding, YES! The hand therapy has been making a huge difference. My sleep doctor suggested one small change that has had a big positive effect. My naturopath offered me some hopefully changes. I haven’t seen any changes from my new therapist, but it’s early, and there’s nothing negative, so I’ll give it some time.

This means that what I’m doing is working and it’s worth it. At least for now.

Still, 13 appointments in one month means very little time to relax, to deal with household chores, or to have fun with friends. And it’s really getting to me. I’m looking forward to one day soon actually being able to do those things again!

In the meantime, take a step back and ask yourself, are all of those appointments helping? I hope the answer is yes but if it’s not, it might be time to ask yourself how to change that answer. (Obviously I’m not a medical professional and I’m not suggesting you stop seeing your doctors even if you’re not seeing positive results right now. Use your own good judgement!)


The stress of dealing with stress

March 12, 2018

When the doctor told me I needed to avoid stress because of my autoimmune disease, I laughed to myself. If it was that easy, wouldn’t everyone do it?

But over the years I learned how to stress out less. I’m still Type A. I’m still controlling, But I managed it. I get stressed out in more reasonable ways. It doesn’t feel as extreme as it used to, or last very long. I almost never lose sleep.

Until this month.

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The last few weeks have been really rough. I have been struggling a lot. And finally yesterday, I just felt so frustrated by it all. I wasn’t sure what to do. I called a friend who also has chronic illness, because I felt stuck. I wanted to stay home and rest and be alone. But I had already done that several times in the last week and it didn’t help. So was it fair to cancel plans with a new friend?

She helped me realize that I did need to stay home and take care of myself. And that while spending a day watching tv and crocheting will help me when I’m physically exhausted, it’s not enough for my current anxiety and stress. Emotional issues require a different approach.

She suggested a journaling exercise: write for 10 minutes without stopping. Make it a stream-of-consciousness writing exercise, and do it for 4 days. The key is not to write about *what* is causing me stress but to write about *how* it makes me feel. That’s harder. I’m not good at that.

But the minute we hung up the phone, I set my timing and got started.

Within a few minutes I was crying. It was wonderful! You see, my problem is that I have gotten so good at compartmentalizing my feelings when I need to, that I’m doing it even when I shouldn’t. Like right now. For the past week I have felt like I needed to cry, but I couldn’t. I knew it would help me feel better, but I couldn’t do it. I tried cutting onions. I shed some tears, but it wasn’t a real cry. I watched a sad movie. Again, I shed tears, but it wasn’t the sobfest that I really needed. It wasn’t enough.

But the journaling exercise got me to cry. Then I got in the shower and cried more. Seriously cried. It didn’t last long, but I had tears streaming down my face and snot running out of my nose and it felt good. Cleansing.

I need to cry more. Maybe today’s journaling will help. Maybe not. But it’s worth a try.

We’re taught not to cry. Crying is bad. Not crying shows strength. I am proud of the fact that I almost never cry. I feel embarrassed when I do cry. But why? It’s a natural expression of emotions. What’s wrong with that?

My health issues also bring up a lot of negative feelings. I usually deal with them by setting them aside while they’re raw, then dealing with them a bit later when they aren’t quite as strong. That works for me.

The problem is that it stopped working. At least in this case. A few weeks ago my girlfriend and I broke up. We weren’t together long, which was part of the problem: it made me feel like I didn’t have the right to be upset. But I was. This relationship was different. I thought it would last a long time. So did she. The breakup itself isn’t the point of the story, though; the point is that I didn’t mourn. We broke up at night, and I called my mom and cried. The next day I had a medical appointment in the morning. On the drive there I wanted to cry but I stopped myself, because I didn’t want to be an emotional wreck during the appointment. I didn’t want to be distracted. By the time I got home, I was too tired to deal with my emotions. The next day I had another appointment. Again, in the car I almost cried, but I stopped myself.

And then that was it. I never really cried. I just went on with my life. I didn’t talk about it much with friends. What was the point? The breakup was no one’s fault. I wasn’t mad at her. I missed her, but talking wouldn’t help, right? The thing is, pushing aside my feelings just meant that I felt fine at the time, and now it’s caught up with me. Now I’m stressed out and anxious.

But it took yesterday for me to figure that out. I thought I was stressed about other things. I knew my response to them was way out of proportion, though. I wasn’t sleeping well. I was anxious a lot. I was overwhelmed. I was yelling at people. What was wrong with me?

What was wrong was that I wasn’t dealing with things. I was pushing them aside.

And as if that wasn’t enough, I have autoimmune disease. Thankfully, I didn’t get sick! But it was definitely a strain on my adrenals, and I had to increase the dose of adrenal supplement that I was trying to decrease. There has definitely been a physical toll.

I have a pretty good handle, all things considered, on managing my physical symptoms. I have had decades to figure that out. But when it comes to emotions, I have to unlearn years of bad habits. I have to learn how to stop hiding from my feelings and to let myself feel them. I have to ignore the daily messaging from society that says crying is bad, being sad is bad. It’s ok to not be the happy, cheerful poster-lady of chronic illness. It’s ok to be sad, stressed, anxious, or whatever else. I just have to stop hiding from it.

So that’s my lesson for this week. It’s taken me far too long to learn it. Before long I’m sure I’ll be learning some other lesson. But for now I am focusing on this one. Because I’m still sad, and I’m still learning.

Now it’s time to go do my stream-of-consciousness journaling again. Hopefully I’ll cry.


Wanting and despising pity

February 17, 2018

I’ve been off my feet for the last week, more or less. Some days I could barely hobble around my apartment, even with crutches or a cane. Other days I could walk around the apartment fine, but putting on shoes was incredibly painful. This doesn’t happen often, but it’s happened many times over the last 13 years.

The difference is that this time, there are new people in my life who aren’t familiar with it.

More than once, a neighbor, a friend, and my new girlfriend all noticed me using crutches or limping, and they offered sympathy. Some were clearly pitying me as well.

Most days I despise pity. Instead of pity, I wish people would offer sympathy. And I wish they would do things to help. Hold open a door. Don’t come near me when they’re sick. Call their legislators and ask them to vote against the new bill that guts the Americans with Disabilities Act (ADA). (Seriously, call them! The bill is described here and you can find your senator’s contact info here.) Those things are helpful. But not pity. Pity sucks, and it’s dehumanizing. It means they’re seeing me as a set of symptoms instead of as a whole person.

And let’s be honest, we are taught by society that we shouldn’t like pity. We should be strong and resilient, blah blah blah.

But some days, that’s just how I feel. Some days, life sucks and I want more than sympathy, I want pity! Like when my feet hurt so badly I can barely hobble to the bathroom. Like when the pain is so bad, I can’t even wear socks. Like when I have to cancel plans so that I can stay home and feel like crap. Sympathy is good. Usually that’s enough. But every now and then, when I’m feeling especially sorry for myself, I also want pity from others.

Now here’s the thing: I talk to people about being in pain. Because I’m in pain. Every day. It’s a part of my life. I don’t dwell on it, and I only complain on the worse days, but I mention it a lot. And sometimes, people offer pity, even though that’s not at all what I’m looking for. And I hate it.

Then again, sometimes I bring it up because I DO want some sort of acknowledgement. I hate to admit it, but it’s true. Sometimes, I want people to know I’m in pain, to feel bad about it, to offer me some sympathy, and maybe to offer help with something I struggle with.

It’s a hard line to toe. I want to be able to say that I never want to mention it, I want it to be ignored, I want to be treated like everyone else. I want to say that, but it’s not true. Because the truth is, I’m human. And sometimes we humans want a little sympathy and support. Some days we even want pity!

Like I said before, society tells us we shouldn’t want pity. We should be strong and inspirational. Others should be able to point to us and say, “Look how amazing she is! If she can do what she does despite her health problems, I have no reason to complain.” Talk about dehumanizing! I’m a real person. I’m a whole person. I laugh and cry, feel optimistic and pessimistic, go out with friends and stay home feeling sick, do laundry and errands and cooking and other mundane chores. I’m more than a set of symptoms. I have feelings.

And yes, sometimes those feelings lead me to wanting pity.

I’m not proud of that, but I’m not going to be ashamed of it anymore, either.

I don’t live in the land of pity. I know that would not be healthy for me. But if a few days here and there I feel this way, what’s so wrong with that? I can’t compel someone to pity me. More than that, I know I’d be pissed if a bunch of people started doing it. But if for a few days I’d like my mother or a friend to pity me a bit, to offer condolences for what I’m dealing with, then so be it!

I won’t ask for pity. And most days I will still despise it. But if every now and then I want it, that’s ok.

Is it just me? Do you ever feel this way? Do you feel guilty for wanting pity? How do you handle it? Please share in the comments!


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