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.)

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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!

2017-12-18 21.45.49

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!


Struggling to endure

December 6, 2017

Last week was a really good week. And that made Sunday so much harder to deal with.

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First I took a long walk around beautiful Walden Pond (and took this photo), stopping a bunch of times to admire the view. It was unseasonably warm, and sitting down to watch the water was lovely. I was able to clear my head and figure some things out.

I made plans. I worked through ideas that had been weighing on me. I made some tough decisions about my finances and my health. By the end, I was super excited to get started! I walked about 2 miles total and felt ok afterwards. I rested that evening, but that was it.

A few days later my mom came to visit. After a lovely lunch, we took a walk in a wooded area. The sign said it was a 1 mile loop, and that seemed ok to us. Well, I don’t know what went wrong, but the path never looped. We eventually made it back to the car, but we walked about 4 miles. I was surprised I felt so good afterwards. Tired, but good. Hmm. Maybe this was a new trend?

The next day I hung out with friends and had a wonderful time. I got home later than I expected and was too tired to go out to a friend’s house that night like I had planned. Too bad. I really wanted to go, but I knew that resting was the right move.

It had been such a fabulous week. I exercised, got fresh air, got clear on a new mindset, spent time with friends.

And then it all changed. I spent all day Sunday feeling run down. I never left my apartment. I cancelled all of my plans for the day. This sucks, but it isn’t unheard of. And I did a lot this week, so I couldn’t complain, right? I trudged through the day, mostly reading a novel and wishing I could do more.

That would have been ok. It would have been disappointing but totally fine. If only that was it.

Sunday night I got really nauseated. Sometimes I know what causes the nausea, but usually I don’t. I tried Pepto Bismol, which usually helps, but this time it didn’t. I tried medical marijuana, which usually helps, but this time it didn’t. The nausea was really bad. My pulse was racing (114 while I was still sitting) and I felt bad all over.

Over the years, nausea has because an emotional trigger for me. I don’t know why it has, when the pain hasn’t, but it just has. So as usual, I started thinking about how horrible this is, and when will it end, and why won’t it ever go away. Yes, I have these episodes a lot less often now that I’m off gluten, corn, and a couple others triggers.

But why does it still happen? Was it something I ate? Something I did? A delayed reaction to the 4 mile walk 2 days before? How will I handle another 50+ years of this? Why did I bother to make plans? Obviously it was stupid to think I could ever get off of benefits and support myself. I should just stop trying. Then I started thinking about how it might be easier to just kill myself and end this. Except that would be very upsetting to my family and friends. I couldn’t do that to them.

I started having those thoughts a few years ago. I know it’s temporary. I’m not too worried, because I only have them when I’m curled in a ball on the floor, too nauseated to do more than stagger to the toilet occasionally. I have never gotten to the point of really wanting to kill myself but even if I did, I wouldn’t be able to until the worst of it had passed, and I never think about wanting to die except when I’m in the worst of it.

So all these thoughts were floating around in my head, and then something strange happened: I started to cry. And cry. And cry. Before I knew it, I was sobbing. Big, ugly sobs. I couldn’t stop crying. I thought I should call someone. (If you’re new to this blog, I live alone.) I ran through a mental list of awesome people in my life, and finally decided to call a friend who lives in my apartment complex. I asked him to come right over and he did. I didn’t explain, but he must have heard it in my voice, because he showed up with his dog, saying the dog was for therapy.

The dog, of course, immediately started to nuzzle me and lick me. He’s that kind of dog. Very sweet. But what I really needed was a hug and some understanding, and I got that.

We sat on the floor while I cried and talked. I always sit on the floor during these spells – for some reason, it just works for me. I cried myself out and we just sat there for a while. Then for some reason, I started crying again. Still, having someone there was extremely comforting.

Eventually I wore myself out. My friend and his dog left (he mentioned leaving the dog, but I was too weak to care for him.) I fell asleep on the couch to an old movie that I often watch when I don’t feel well. I woke up less than an hour later and found the nausea had subsided enough that I could drink a little water. Lots of diarrhea and lots of crying can really dehydrate a person. Then I stumbled to bed. I slept fitfully, but got through the night.

Monday was a bust. I cancelled plans and ate almost nothing. But it didn’t get that bad again. Tuesday was better, and I even left the apartment. And today is better still (though it’s after noon and I’m still in my pajamas, so it’s not fantastic – I try to get dressed by noon every day when I can.)

So why am I sharing this? I’m sharing it for a few reasons. For one, amongst my friends with chronic illness, I’m often seen as the strong one. Strangers online (both through this anonymous blog and under my real name) say that I’m a role model. I have my shit together. I’ve got a good handle on all of this. I work my butt off to take care of my health, research new treatments, find the best doctors and practitioners. That’s all true. But that doesn’t mean I don’t have really bad times, too. I think we all need to remember that the people who seem to be great probably have bad times behind closed doors where we can’t see them. It’s important not to idealize people, but to see them as they are.

It’s a reminder that we all have our struggles. We struggle, and then hopefully we have better days, too. We don’t need to assume someone is perfect in order to have them as a role model.

I’m not perfect. I’m still continuing to fight every day for the best health possible. I want to believe that one day those episodes will end. Until then, I will just keep on trying. Because what else can I do?


Fed up with fear

October 24, 2017

I remember the “old” me like it’s someone else. Someone else who took risks. Someone else who moved all the way across the country to try something new. Someone else who traveled overseas alone. Someone else who went scuba diving with sting rays despite her fear of open water (and yes, I was terrified of the open water! I was happy with the sting rays. Go figure.) Someone else who simply did things.

Grand Cayman Underwater 24

My hand, petting a sting ray’s nose. It was softer than I expected.

But no, it was me. Me before I felt this sick and tired and in pain all the time. Except not really. My nausea was much worse back then. The pain was just as bad (or worse), simply in fewer parts of my body. But the fatigue wasn’t the same. The food limitations weren’t so strict. The knowledge of how sick I was hadn’t reached me yet. I figured I was ok, just with pain and nausea, and so I did things.

And now I don’t.

I haven’t been on an airplane in almost 7 years. I miss travel, but I don’t do it. What’s the worst that could happen? I hate to think about it. But would it really be all that bad?

Why don’t I try new things that are fun and exciting? Sure, I do new things, but they’re boring things. I’m writing a book. I tried a new group through Meetup. I have started dog sitting. I might enjoy the things, but they don’t open me to exciting new experiences. They don’t expand my view of the world. They aren’t like scuba diving with sting rays.

For a long time I have been frustrated by feeling like I couldn’t do things. Now I question if maybe I could do those things, but my fear is what’s holding me back. I get different opinions from my doctors. No one tells me sure, it’s no problem if I want to fly to England to visit a friend there. But they also don’t tell me it’s a horrible idea and I shouldn’t consider it. I get a lot of, “you could probably do it if….”

And then I wonder if my fear is rational. I’m worried about having a lousy trip because I feel horrible the entire time. It seems like a waste to spend a lot of time, effort, and money on a trip that I won’t even enjoy. But I could risk that. It’s not what’s ultimately holding me back. No, what’s holding me back is a fear of setting back my health.

If you have been following this blog, you know that 6 years ago, I was struggling, but getting by. I worked a full time job and sometimes went out after work. I liked a fairly “normal” life. Then things got so bad that I was on bed rest 3-5 days a week. Now I am doing much better than I was a few years ago, but no where near well enough to work a full time job. I can’t even manage a part time job. Still, things have been slowly improving. Doing something big and exciting could set me back. And a backslide could take years to recover from. I’m scared to risk that!

And let’s be clear, I’m not only talking about travel. I would love to go ziplining locally, but what if I injure myself, or my adrenals can’t handle the excitement? I want to go to a party and stay out late and have fun, but whenever I try I feel horrible for days afterwards, sometimes weeks, so now I’m scared to do it anymore. I want to try a new type of food that’s free of gluten, corn, and the other foods I can’t eat, but what if it makes me sick? I could go on and on.

Some of these are reasonable and I should avoid them. But others….. am I letting fear hold me back too much?

Fear has it’s place. It protects us from doing things that will hurt us. But right now, I wonder if it’s stopping me from experiencing great things that I will love. Things that will make me happy. Because what’s the point of life if I’m not experiencing it? Then again, what’s the point of life if I’m always making myself miserable?

I don’t have an answer to these questions, but at least I have gotten to the point of questioning my own fears and whether or not they are valid. I’m frustrated that I don’t have answers, but I am glad to be asking the questions.

Maybe one day I will be able to answer: are these fears reasonable?

If you have dealt with similar fears, how have you handled them? Do you take the risks, or avoid them?


Painful weather, like it or not

October 5, 2017

It’s October in New England, but you wouldn’t know it if you didn’t look at a calendar.

Every summer I count down until the third weekend in September. That’s when I know the weather will have finally shifted for good, and I’ll be feeling less pain, less fatigue, and less nausea. It’s truly a magical time.

But not this year.

This year we had cooler weather in August, and I was grateful for that, but I also knew it wouldn’t last. September was up and down. But surely October would be my time, right? Not so much.

When you have chronic illness, nothing is simple, and the unpredictable symptoms, flares, and other issues can make life hard to plan. Still, we do our best. For me, that means making more plans in the fall and winter, when I know I will feel better.

That’s why, even though a “simple” weekend away with my best girlfriends is incredibly hard, I felt I could do it if it was in the fall. My friends are understanding, and were perfectly happy to avoid planning anything in September, just in case. They get it. Every time we’ve had cooler, less humid weather, I get text messages and emails from friends saying, “This is your kind of weather! I hope you’re feeling up to enjoy it.” And I love that they understand.

So we planned for “safe” October. Who could have known? This isn’t our typical cool, crisp, wonderful New England autumn.

Thankfully the temperatures are cool enough, though way too warm for this time of year (upper 70s?!? Are you fucking kidding me?!?) My problem is the dew point. It’s supposed to get close to 70 this weekend! Even healthy people find that uncomfortable and for me, it will be near torture. But what can I do? The house we rented doesn’t have air conditioning – after all, none of us thought we’d need it. Higher on our list was finding a house with a working fire place. Last year we did this trip later in October and it snowed. We had a lovely time sitting by a roaring fire, and wanted to repeat that experience. If only.

I am in pain already, and it’s only beginning. Well yes, I’m always in pain, but this is worse, and I know it’s from the weather. My toes are swollen and painful. My knee is swollen and so painful that it’s hard to walk. My neck hurts. Everything is just wrong.

But I won’t stay home. I have been looking forward to this trip for a year. It is my one chance to do this. I will NOT give it up!

I will bring the medications that I can. I will be careful how I eat. And I will block out a lot of extra recovery time when I return. Still, I know this is going to be really rough. I will be in pain, nauseated, and fatigued. Thankfully, I will be surrounding by wonderful women, women I have known most of my life, the only non-relatives who knew me before any of my symptoms began, women who have always been supportive. And maybe most importantly, women who have always made me laugh, even at the worst of times.

So wish me luck. Because I want to be able to enjoy this weekend as much as possible. If only Mother Nature would cooperate.


How a weekend away is a 2 week ordeal

October 2, 2017

I’m going away this weekend and I’m super excited!

I used to travel all the time. 2 months at home felt like FOREVER. I could pack an overnight back without even thinking about it. I got on a plane multiple times each year and did some weeks and weekends within driving distance. A weekend away in the Berkshires, less than a 3 hour drive away, would be no big deal.

But that was then.

And this is now.

Now I have to plan. I am being super careful about washing my hands and avoiding germs. I can’t get sick now!

I need to bring food with me. I will be with friends and some food will be safe for me to eat, but I need to bring other food. So I went to the grocery store today (Monday) and carefully planned out what I will make and which days I will make it. I also promised to bake cookies to bring, and I can’t do big cooking on the same day I bake, because I won’t have enough energy for that, but I can’t make anything too far in advance because I want it all to be fresh.

The day before the trip I will do some packing, but most of my stuff (my ASV (which is like a CPAP), my medications, toiletries, and more) can’t be packed until the day of. I need to ration my energy that day. Thankfully, I only have to drive half an hour to a friends’ house that day and then she will do the rest of the driving from there. Still, even being a passenger will be tiring and painful.

I am already thinking about how to handle my food and medications on the day of the trip. I always feel like shit the first night I travel. So I am being careful to bring everything I need to take it all at the right times: I will take something to help with the pain and the nausea when we start to drive, something else for the pain when we arrive, then something else for the nausea a few hours after that. Between medical cannabis and pepto bismol, the right foods and lots of rest, I am hoping really hard that it won’t be too miserable. Thankfully, I will be with friends who will understand if I can’t hang out with them that night.

I have scheduled my medical appointments around this trip. I was able to get a physical therapy appointment just a couple days after I return, so hopefully that will help with the pain from the long car ride and sleeping in a less-than-great bed.

My calendar is empty for the first 2 days after my return. That will give me time to rest and recover. I will get a lot of sleep, watch tv and movies, crochet, and read. If I feel up to it I will do more, and if not, that’s ok too. During my recovery time, I still need to eat, and I might not be up to preparing food, so I am making sure to cook and freeze food now that I can eat when I return.

I want to travel more. I really, desperately do. But then I remember what a trip like this is like. I can manage it ok, because it is only two days. I will leave at noon on Friday and be home by 5pm on Sunday at the latest. And I won’t be flying. I know it would be much harder if I was flying, for many reasons. It would be more painful. I might feel anxious at being “trapped” on a plan. Not to mention, I wouldn’t be able to bring any cannabis with me, and I can’t imagine how I would manage my symptoms without it.

At the same time, a friend and I are trying to schedule another weekend that I can visit her. The drive is less than 2 hours, but I would be driving myself. She would provide food I could eat during the entire visit, but aside from that, everything else would be the same. Resting for days in advance, blocking out days afterwards for rest, figuring out medications and other things to help alleviate my symptoms while knowing that I will almost definitely feel like shit the night that I arrive.

Sometimes it doesn’t seem worth it. But I know it will be in the end. Even thought it won’t be easy. It won’t be like it was before. But hopefully it will still be fun.


The real reason I wasn’t feeling well

September 26, 2017

I have noticed an interesting pattern recently. It goes like this:

  • One evening: Hmm, I don’t feel well. Must be the usual chronic illness stuff.
  • The next day: Wow, I feel really bad. This CI stuff is acting weird.
  • That night: Oh boy, this is not only bad, but also not quite the same as the usual CI stuff.
  • The next day: I’ll just push through. It’s probably a mini flare. Be quiet voice-in-the-back-of-my-head! I don’t want to hear this is something else.
  • That night: Oh crap, I think I’m sick.
  • The next day: Oh boy, I’m DEFINITELY sick!

And that’s what happened this weekend. It took two days of feeling guilty and trying to push through before I realized I was sick. Then I spent an entire day on the couch watching tv, not even trying to do anything “productive,” and I felt so much better afterwards!

It’s hard when you have a chronic illness and have “sick” symptoms on a regular basis. You have to keep living your life, and often, resting wouldn’t help anyway. But sometimes it’s actually a bug, and rest is just what you need. Then it’s important to give yourself that rest.

I’m not back to “normal” yet today, but I feel SO much better. Maybe one day I’ll listen to that voice in the back of my head and realize I’ve got a bug a lot sooner. I haven’t figured that part out yet, but hopefully one day I will.

And in the meantime, I hope you all can give yourselves time to rest and recover when you get a bug. It’s lousy when it happens, but at least, unlike chronic illness, it’s temporary!


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