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.

drop-1751084_1280

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.

4 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

The things we do for our health

February 26, 2018

As I sat on the bathroom floor scooping poop into a plastic cup with a wooden stick 2 hours ago, I thought about how some people can go their entire lives without ever having to do this. Lucky them. I’m not so lucky.

I really really really didn’t want to do a stool test, but much more than that, I really really really couldn’t stand to keep having these episodes. I can handle the gas, the bloating, the constipation, and the diarrhea. I don’t love them, but I can handle them. But I can’t handle the nausea. It just does me in emotionally.

I have had these kinds of episodes since my teens. When I removed gluten and corn from my diet in my early 30s, they became much less frequent. Instead of 2-4 times a week they were *only* 2-4 times per month. Still, that’s far too often. The symptoms changed, too. Some got worse and some got better. And over time, I accepted it, to a certain degree. At least it was less often, right?

The thing is, the nausea, the fatigue, the rest of the symptoms all come on together. I never know when it will happen. Is it my diet? One night I feel fine and another I’m a mess, even when I ate the same thing both times. Maybe it’s something else? I have tried diets, so it’s time for the next step.

Someone suggested this particular test to me. I asked my doctor and was shocked to learn that insurance will actually cover the cost (a rarity for many of the tests I ask for.) His office gave me the kit, and I put it off.

First I needed to do an adrenal test – the fatigue was a more concerning symptom. Mentally and emotionally, I could only handle doing one at a time. It took a few weeks before I could schedule that test, since I had to change some things about my medications to prepare for it.

I gave myself a week, then decided to do the stool test. I read the instructions and learned I had to be off probiotics for 2 weeks before the test. I stopped taking probiotics. 2 weeks later, I was sick. I waited. I finally felt better but my schedule was a bit busy. I knew I needed to be home and not rushed for this. My schedule cleared and I went to take the test. I read the instructions again and saw that I had to be off another of my supplements for 2 days. I went off those. I felt sick again. Then if I did the test, I would finish on a Saturday, and it has to be mailed Monday-Friday, within 24 hours of finishing. I waited a couple more days.

FINALLY it was time! I was nervous and not wanting to do it, but I did it. Because I had to. Because I need answers. Because each time I have one of those episodes, I start to wonder if I would be better off dead. The only times I feel at all suicidal are doing those episodes. I don’t know why. They last for hours that feel like weeks, but never more than a few hours. The pain can be so much worse and last for so much longer, but it never makes me feel that way. These episodes have to stop.

So I did the test. It was a 3 day test. For 3 nights I had stress dreams about the test. The first day I realized it wasn’t fun, but not nearly as bad as I’d expected. But still, I had the dreams. They woke me up at 5:15am today. I want to believe it was worth it.

I finished the test just a couple hours ago. The samples are sitting in my refrigerator (carefully packaged, of course) and ready to be mailed when go out this afternoon. And then I wait. And wait. And wait. It will only take a few weeks to get the results, but it will feel like so much longer.

After many months of procrastination, then another 6 weeks of mostly legitimate delays after I received the kit, I finally feel SO CLOSE to potentially having some answers. I don’t want to hear I have parasites or infections to deal with, but those might be better than a lifetime of these episodes that make me literally want to die, that I can’t predict, and that continue to get worse over time.

So yes, I scooped my own poop into plastic containers multiple times. That’s something most people never even consider doing. But maybe, hopefully, it was worth it.

 

Leave a Comment » | Expectations, Frustration, Gastrointestinal, Healthcare, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The circular reasoning of spending money to get off benefits

February 4, 2018

I was always one of the few people who didn’t stress about money. I was lucky.

My parents raised me in a comfortable home, where we never worried about the basics. We didn’t take a lot of fancy trips, and my mom didn’t wear a lot of expensive jewelry. My parents bought new cars like Camrys – new, but not luxury. I got an allowance every week. It wasn’t huge, I saved it. I saved a lot. I saved my babysitting money. I saved my summer job money. I spent some too, but I saved more than I spent. By the time I went to college, I had decent savings.

My parents paid for college. I got a fellowship for my first year of grad school, then worked two jobs to pay for the next year. I never had any debt. I worked in nonprofit, so I didn’t earn a lot, but I lived inexpensively for the most part, and it all worked out.

Until I became too sick to work. That changed everything.

Suddenly, I worried about every dollar I spent because I knew I couldn’t earn more. I also knew that my benefits didn’t quite cover my expenses. I was taking money out of savings to make up the difference, and how long could that last? Thank goodness for my savings!

And then my health started to improve. I felt I could work a little bit. Not enough for an office job. Not enough for a typical work-from-home job. I couldn’t predict which days I would feel up to working. Or which weeks I wouldn’t be able to work at all. So I started my own business.

Things didn’t go great. I made some money, but nothing consistent. Worse, there was no way to earn more without putting in more hours, and that was impossible. I burned out fast.

I decided it was time to try a different type of business. I had thought about it a couple years ago, but discounted it for a few reasons. For one, it seemed less fun. For another, it required taking a decent amount of money out of savings and risking losing it. But now, I don’t have a lot of options, so I have to try.

Even more than risking that money on the business, I’m going to hire a coach! And the coach isn’t cheap. Still, if I’m going to do it, I should do it right, right?

This is a decent amount of money coming out of my savings. I don’t think I would have loved it at any time in my life, but right now especially, it makes me very nervous. I need this money!

On the other hand, what am I risking? This money in my savings could cover me for  year, as long as I have my other benefits. But for various reasons, I am about to lose some of my benefits (fuel assistance, utility assistance, food stamps/SNAP.) So this money would cover me for less than a year, in addition to social security. I could lose a year’s worth of non-rent expenses.

That’s the risk. But what about the reward? If this works, I could earn enough to get off of benefits altogether! I could support myself without having to work full time. I would do the work from home (or from anywhere, as long as I have a laptop and internet connection) and make a full time income. It would be amazing!

That’s what I’m holding on to. That hope that maybe, just maybe, this could work.

I know it’s a long shot. Very few people manage to get off of benefits. I could even earn enough to lose my benefits without earning enough to support myself, which is the worst-case scenario (and the one I’m going to be careful to avoid.)

I am supposed to pay the coach today, and I’m nervous as hell. I keep holding off. It’s A LOT of money. But on the other hand, it isn’t that much money. And there’s the rub. If I was working, it wouldn’t feel like all that much. Yes, it’s a lot (thousands of dollars), but I’d be earning, and I don’t have debt. It only feels like so much because I can’t earn more. But ironically, I need to spend it so that I have a chance at earning more, even though it’s my fear of not being able to earn it back that’s stopping me from spending it in the first place.

I have been wrestling with this decision for a week. Every time I convince myself to do it, I chicken out. But tomorrow is it. The final deadline. Because at some point, the coach needs to fill in this slot in her schedule, and I need to sleep better at night without worrying about this.

And who knows? Maybe, just maybe, it could work…..

Do you have these same kinds of feelings about spending money, even when it feels necessary or beneficial in the long run? How do you handle the complicated emotions it brings up?

P.S. This isn’t a get-rich-quick scheme. My goal would be to earn back everything I spent by the end of this year, to make a profit next year, and to hopefully be off benefits the year after that. If this works, I’ll be happy to tell you all about it.

Leave a Comment » | Decisions, Expectations, Frustration, Job, Limitations, Rants | Permalink
Posted by chronicrants

Resenting my overwhelm

January 30, 2018

We all know the stereotype: the lazy person on benefits, who spends all day watching tv and eating junk food because they don’t feel like working.

We all know the reality: nothing like that at all.

Still, in general I find that even though I’m busy, I can manage. Some days I don’t feel up to doing as much, but it more or less works out. Sort of. Well, close enough.

But sometimes I feel overwhelmed by everything. Driving 6 hours in one week for various doctor appointments. Physical therapy at home. Eating the right foods in the right amounts at the right times. Getting tests run. Exercising. Feeling guilty whenever I don’t do one of those things. Always trying. Always running. Sometimes even finding time for family or friends. But not nearly often enough. Seeing notes about things I want to do, and wishing I had time for them.

And I should have time for them, shouldn’t I?

I hate this feeling. I don’t even have a full time job, damn it! Why am I so overwhelmed?

Of course, we all know why. It’s because I do have a job. Sure, I’m not getting paid for it, but my health is a big job, and it’s never ending. Add to that, I don’t have as many “good” hours in a day as my healthier friends do. I’m lucky to start doing anything “productive” by 11am. By dinner time, I am done.

Sometimes I do things practically nonstop in those intervening hours. Sometimes I can barely manage to feed myself. It all depends on the day.

And that unpredictability only adds to the overwhelm. My calendar might look good, but when I suddenly lose a day of productivity because I feel like crap, and everything else has to get rearranged, then it’s suddenly way too crowded. I build in “rest” days, but I can’t predict. My body might decide it can’t manage anything on Tuesday, even though my “rest” day isn’t until Thursday. Or I might rest on Thursday and feel like I need still more rest on Friday. Or sometimes the “rest” days are perfect, and if I schedule less and then feel ok, than I simply do less, instead of using the “extra” time to get more done.

My new goal for 2018 is to take days to take days off, and so far it’s helping. But it’s not enough.

And the funny thing is, next week I might sleep better or do something fun, and suddenly I will feel like everything is under control. But this feeling of being overwhelmed will come back. It always does. And with it, comes an uncomfortable guilt. Because after all, it’s not like I have a full time job.

Note: I would be the first to support a friend who feels this way. I would tell them that of course they have a job, and they are completely justified to be so overwhelmed. So I am repeating to myself what I know I would be saying to someone else. And it helps.

2 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »