Trying to manage when it feels unmanageable

May 7, 2018

Somehow I used to work 45+ hours per week, cook, clean, do errands and chores, and have a social life. How?

Now I feel more overwhelmed than I did then, and I do a lot less. In some ways. In other ways, I suppose I do a lot more, but it’s hard to remember that. Our culture is so wrapped up in “jobs” and “what do you do for work?” and “you must have a lot of free time without a job” that it’s easy to feel like a failure for being overwhelmed without the 9 to 5.

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I think that my mental and emotional tolerance for these kinds of things is way lower than it used to be. But I also know that I do a lot. Dealing with pills and physical therapy exercises take up time. So do meal planning, clothes planning, and all of the other planning around my health issues. Meditation, reading up on symptoms and treatments, and writing this blog also take up time. Then there are the many, many medical appointments. And that’s all before we talk about actual acute symptom management. Not to mention, the extra hours I need to spend in bed and resting on the couch. Put that all together, and that’s my full time job.

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Then there’s my work. It’s not a 9 to 5, but it’s all I can manage. Sometimes, it’s more than I can manage. I sell craft items I make. Or at least, I try to. I have an online coaching business. I just tried to start another online business, but it was too much, and now I’m in the process of shutting it down. I do dog sitting. Not every day, but a little is better than none. It has the advantage of giving me canine company. Right now, this beautiful dog is snoring next to me!

There’s also non-work work. I do a little bit of volunteering for a support group that I’m in. I speak to friends, friends of friends, and friends of friends of friends about health issues and try to assist the best that I can.

On top of all of that, I have typical adult stuff: laundry (which I should actually be doing right now,) grocery shopping, cooking, dishes, cleaning, other errands. This week I finally got a haircut, which was about 3 weeks overdue. I wanted to do it sooner, but between feeling sick, being busy, and simply feeling overwhelmed, I wasn’t able to do it.

I have personal projects. I am currently writing a book about living with chronic illness. I am trying to clean out the clutter in my closets. I’d like to experiment with some new recipes. I want to spend more time reading.

On top of all of that, as if it weren’t already enough, I’d like to socialize more. Over a year ago I left the city and moved out to the suburbs. I want to make more friends out here. I want to spend more time with my old friends. I want to date. After a recent breakup I finally feel ready to date again, but I have no time or bandwidth for it.

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It’s true that I’m less efficient than I used to be. Let me sit in front of the computer to work for an hour, and I will accomplish less than I could have accomplished in an hour 10 years ago. Some of that is illness-related. Some of that is being out of practice. But I am working for that hour and I do get shit done.

It’s just that there’s always more to do than I can manage. And something’s gotta give.

Which is why I am not dating. Which is why I am closing one of the businesses I started. Which is why I don’t socialize nearly as much as I’d like to. Which is why I don’t have much fun in my life these days. Which is why I am stressed out and overwhelmed and feeling like a failure. Sure, I know that I am not a failure. It’s just that sometimes it’s hard to remember that. To really believe it. All I can do is keep remembering how much I do, and strive to eventually get to a place where I’m less overwhelmed.

And for you, dear reader, I want you to know that you’re not alone. In the chronic illness world, we often seem to have 2 modes: doing a lot that never seems to be enough and feeling overwhelmed and stressed out; or doing very little “productive” stuff while we rest and take care of our health and feel guilty about not doing enough.  But we shouldn’t feel guilty. We are doing the best we can to take care of ourselves. Some folks are even taking care of families as well. It’s hard. Fucking hard. And we deserve praise and congratulations for everything we work so hard to do, even when it’s not as much as what we want to do. So give yourself a figurative pat on the back. And then go do something FUN and don’t feel guilty about it. You deserve it.

Note: I have written many times about being on benefits, so some of you are probably wondering why I’m busting my butt with multiple jobs. That is because when I add up social security, food stamps (SNAP), and fuel assistance, I still fall far short of what I need to pay my expenses. I live in affordable housing and my rent is currently over 90% of my social security income. Then I need to pay for utilities, car insurance, gas, car maintenance, medical treatments that aren’t covered by insurance, and maybe once a month I might even go out for a cheap meal. On top of all of that, I am nervous about the future state of benefits in this country, and don’t want to rely on them. I would much rather earn my own way and be independent of them. For now my goal is to earn enough to support myself with benefits. Down the road I would like to get off of them, though I know that’s a rare and difficult thing to accomplish.

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Watching dawn

April 19, 2018

The first time it happened, I was baffled. Waking up during the night isn’t so unusual, but staying awake for hours before falling asleep again is beyond odd.

It happened a bunch of times, but finally I got into a good sleep pattern. Between my CPAP for sleep apnea, various supplements, good bedtime routines, etc., I was doing ok as far as sleep went. Not fantastic, but ok.

Until a couple weeks ago. At least 5 times in the last 2 weeks I have woken up during the night and stayed awake for a while. Sometimes I have thoughts swirling in my head. Sometimes I feel like I can’t breath with my CPAP on. Sometimes I’m in pain. But always, I’m awake. Too awake.

This morning, not for the first time, I saw dawn break. I’m not a morning person, and I have only ever voluntarily seen dawn 3 times in my life: once because I knew it would be beautiful to see dawn over the Atlantic ocean where I was staying and so I woke up super early to see it, once on an airplane where the time difference made it easy, and once when some friends and I stayed up all night talking and laughing and watching movies (ah, youth) only to discover as we finally turned out the lights that it was actually getting light outside already. That’s it. The rest of the times have been far from voluntary.

Like this morning.

Last night went something like this:

  • Wake up.
  • Realize something isn’t right.
  • Look at the clock.
  • Look at the readout on my CPAP and realize I only wore the mask for an hour even though I had slept for 3.
  • Put on CPAP mask.
  • Try to shut off the thoughts running through my head. I’m not stressed out, just too awake to stop thinking.
  • Try to sleep.
  • Finally give up on sleep.
  • Go to the bathroom.
  • Drink water.
  • Try to sleep.
  • Can’t sleep.
  • Read a book for a while.
  • See that it’s getting light out.
  • Feel sleepy.
  • Notice that it’s 6am.
  • Debate staying awake for the day at this point.
  • Remember that I have only slept for about 3 hours, and only 1 hour with the CPAP.
  • Put on the mask and go back to sleep.
  • Wake up to a loud noise and feel tired and irritated. Why didn’t I shut off the alarm when I was awake during the night?
  • Snooze the alarm.
  • Sleep for a few more minutes, then give up and stay awake. At least I got to sleep for another 2 hours.

That was bad. Even worse was trying to focus today. I didn’t get out of bed until 10am. I was awake, but dragging. When I got up, the world had started the day without me. People kept texting me. I responded, until I just couldn’t manage it anymore. A friend was trying to figure out where we should meet up the next day, but I couldn’t handle making decisions. It was hard to focus. Wait, did I say that already? Everything was a bit tough to grasp. Everything was exhausting.

A friend suggested I call a doctor, but who? I saw my sleep doctor recently. There’s nothing more to be done. I have a complicated condition that’s hard to treat, and they’re doing the best they can. There’s a medication that could help. One. And it’s in a class of drugs that I’m allergic to. I take supplements that help, but not consistently. Medical marijuana helps, but I don’t want to use that every single night. So I just have to try and stick it out. It sucks.

Now it’s night again, and almost time for bed. Tomorrow night I’m going to a show that I have been looking forward to for months. I have the ticket. I have plans to go with a friend. So please please please I just need to sleep through the night with my CPAP mask on all night long. Please. If I do that, I know I’ll be able to function.

If only I had a choice.


Self care goes a long way

March 21, 2018

I have to try harder. All the time. It feels like nothing I do is ever going to be enough. Sometimes it’s my body limiting me. Sometimes it’s fear. Sometimes it’s emotions. But I always feel like I need to do more.

That’s why it’s so hard to slow down.

On the days that I’m in too much pain to walk, I’m forced to stay off my feet. When my energy is low, I’m forced to be at home. But I still try to wash dishes or read or do something useful. But who defines what’s “useful”? Sometimes, the most useful thing is to take care of myself.

A few weeks ago I was very stressed out. I have had years to get used to taking care of myself physically, but taking care of myself emotionally was much harder. Because I had to focus on my feelings. I couldn’t do anything tangible to take care of myself. Physically I felt like I should be doing more, but I knew I needed to deal with my emotions.

So I did. For a few days I wrote in a journal, watched movies that I knew would trigger the feelings I was avoiding, and stopped myself from the automatic distraction mode I’m so used to engaging in. Slowly, it worked. I dealt with my feelings. It’s still an ongoing process, but I feel like myself again, and things are better.

It’s easy to always feel like we’re never doing enough. Especially for those of us who are too sick to work full time and do the other things that society expects. But we need to remember that self-care is important, too. Yes, we need to have balance. Dishes must be washed, clothes must be cleaned, groceries must be bought. But we also need to take care of ourselves on every level.

This isn’t new to me, but it’s an ongoing lesson that I am constantly striving to learn. I think that many of us are.


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.


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.


Feeling fatigue frustration

January 20, 2018

Fatigue is my most frustrating symptom. Unlike the others, I can’t push through even small amounts of it. Unlike the others, it feels vague and a little unreal. And it stops me from doing so much.

My pain has been better lately. I can work around it. The nausea is still a major problem that causes me a lot of anxiety, but it doesn’t happen too often. But for some reason, the fatigue has been worse over the last few months and I just can’t fight it. I can’t push through. I can’t work around it.

I’m going out less. Exercising less. Doing less. Feeling less than.

It’s hard to explain this feeling to people. It isn’t a matter of going to sleep earlier or waking up later or taking naps. I have no reason to think I’ll feel better tomorrow or next week or next month until we figure out the cause and do something to fix it.

And yet I want so badly for it to go away.

This isn’t as bad as the fatigue I had 5 years ago. It took years to improve that, and I want to avoid getting back to that bad place. Still, this level is also limiting, and irritating, and oh so FRUSTRATING!

There is so much I want to do. Today is unseasonably warm and I was going to take a walk around a local Pond. That walk always makes me happy. I’m not in too much pain. But I just don’t have the energy. So much for that plan.

I have lists of things I both need and want to do, and I feel like I can’t do any of it today. Will I manage more than watching tv in my pajamas? I have no idea.

I’m frustrated. And I hate it. I am used to pushing and fighting for things, and I can’t do that. If the fatigue is being caused by an adrenal problem (which is looking likely as we’ve been running tests and ruling out most other potential causes) then pushing and fighting will only make it much worse.

There are no answers today. All I can do is hope it doesn’t last too much longer. And try very hard not to blame myself for not doing more.

So I am writing this in part to complain (hey, what did you expect from a blog titled Chronic Rants?) and in part to offer support to everyone else dealing with fatigue. It can stop us from working, from socializing, from buying groceries, from cleaning the house, from taking a walk, from sitting up. Fatigue sucks. And I hope yours and mine improves very soon. And in the meantime, I hope we can all find good audiobooks and tv shows for when we have enough energy to enjoy them.

(On a side note, I love audiobooks, so if you want suggestions of what to listen to, comment with the kind of stuff you like and I’ll be happy to give you some recommendations! I listen to most genres – adventure, chick lit, historical fiction, murder mysteries, all kinds of non-fiction, etc.)


Taking a real day off

December 27, 2017

There’s this interesting thing that happens when you have daily symptoms.

Back when I worked, I would have these things called “days off.” These were days that I didn’t work. Sometimes I would hang out with friends. Sometimes I would do something fun on my own. Sometimes I would use the time to clean the apartment or run errands. Generally one day each weekend would be a day to just hang out and relax: no errands, no chores. It was great!

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Now that I’m too sick to work, I don’t go to a job, so every day is supposedly a “day off.” The thing is, I still need to take care of my health, run errands, clean the apartment, and all that other stuff. That became my job. And I try to do a little work to earn some money here and there. That’s my job, too.

The big difference is, there are no set hours. And I never know which days I’ll feel up to running errands or earning some money or any of that other stuff. So that means I now have 2 kinds of days:

  • Days that I feel like crap.
  • Days that I try to be “productive” and get stuff done.

Here’s the problem: that means I never take a “day off.” Every day is either a day to feel sick and do nothing by try to take care of my health, or a day to wash dishes, cook meals, go grocery shopping, do some work that earns money, or see a doctor. Sometimes those days might include seeing friends, which is awesome. I love hanging out with friends! The problem is, in my current state, hanging out with a friend is a fun day, but not the kind of “day off” that I really need to rest up.

I don’t rest up, because any time I feel halfway decent, I feel like I have to take advantage of that by doing as much stuff as possible (without overdoing it, of course.)

I’ve been feeling burned out lately. I know I’ve been doing too much, but when I try to take a “day off,” I fail. I end up doing laundry or trying to work. Half the time, I end up wasting time by scrolling through Facebook or something else unhelpful. Then I don’t get stuff done OR get any rest. It’s just not working.

Until this week.

This is an odd week. You see, just about everyone takes off Christmas from work. A lot of folks take off the entire week from their jobs. Some stay home and others visit family. But for me, Christmas isn’t a holiday. A couple weeks ago I did a small Chanukah lunch celebration with my family, and that was it. I baked cookies for it. Very simple.

And then this week, the world around me got quiet. The Jews were going out for Chinese food and movies (I did go out for Chinese food on Christmas Eve, actually,) the Christians were celebrating Christmas, and just about everyone else seemed to be busy with something family-related.

As I was setting up my to-do list for the week, like I always do, something occurred to me: there was almost nothing on that list that had to happen this week. Sure, it would be nice to get that stuff done, but the list never ends, and those things can happen next week instead. So what if I didn’t do them? What then?

As the light bulb went off over my head cartoon-style, I felt relaxed. It could all wait!

I have been dog sitting since the week before Christmas. (That’s him in the photo.) I have watched this guy a couple times in the past, but having him for a week and a half was different. I fell in love. I am so sad that he’s going home in a few hours! It turns out, he was the perfect companion this week.

Normally Christmas is a lonely day for me. I spend a lot of time alone, but it feels different when everyone I know is busy doing fun things and I’m not. But not this year!

This year, Christmas was the day that I FINALLY took a day off. I started it off wrong. I tried to “get stuff done.” I found myself scrolling through Facebook to procrastinate. Then I realized that it was the perfect day to just rest. Not because I was too sick to get off the couch, but because I just needed the rest.

I settled on the couch. I had my knitting in my lap and an adorable pup curled up against my leg. I watched hours of tv. I ate leftovers (no cooking!) I let the dishes sit. It was the first time in ages that I felt up to washing dishes, but let them sit anyway. How decadent!

I left the apartment only to walk the dog. Thankfully, he was happy to stay in most of the day. We snuggled and played. I watched more tv. I did more knitting.

And by the end of the day, I felt relaxed in a way that I haven’t in a long time.

Finally.

My challenge now will be to do this more than once a year in 2018. In fact, my goal is to do it to a small extent once a week. That will be one day a week that I do something fun just for me. No stress. No to do list. If I feel up to going out and taking a walk, that’s ok. But at least once every other month I will have a day at home to rest and relax and not do anything more than knit, read, and watch tv. That’s my goal.

I know I’m not the only one who struggles with this. I’ve spoken to friends with chronic illness who struggle in the same way: when they feel good, they feel an obligation to do as much as they can. And that means never having a “day off” to just do their own thing. I feel like there must be a solution out there for this problem, but I have no idea what it is.

So my questions to you are, do you ever feel this way? Have you found a way to take regular days off that works for you? And if so, what is it? Please share it in the comments because I would love to learn from you!


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