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.

Advertisements

How dare insurance not cover my specialists

March 27, 2018

24 years. If I’m remembering correctly, I have had gastrointestinal problems for 24 years.

First it was ignored. I didn’t think to tell anyone. And I didn’t know that diarrhea wasn’t normal, that not pooping for days at a time wasn’t normal, that nausea and pain weren’t normal. So I suffered in silence.

Then I saw a doctor who wasn’t helpful. I drank prune juice for the constipation and that got me through the worse of it. Sort of.

Another doctor said I had IBS and gave me a prescription.

Years later I went off gluten, then a bunch of other foods. That helped a lot. The episodes that had been coming more frequently backed off. I no longer found myself in the fetal position from gastrointestinal pain 3-5 times a week. Now it was only 1-4 times a month. Only. Hmm.

The problem was, the episodes continued, and my emotional response to them got worse. I found myself thinking more and more often about how I would prefer death. I only thought that way in the middle of the episodes, when I am already in too much pain to seriously consider killing myself anyway, but still, that’s not good.

I never think about death when I have joint pain, even though that pain is much worse. There is something about the nausea that triggers these thoughts now.

Recently I had an episode that was especially bad. I called a friend and neighbor, who came right over. But even his dog, who he kindly brought, wasn’t enough to help me. I sobbed while curled up on the floor, unable to sit up, unable to think clearly, but knowing I needed to not be alone. Eventually the worst of it subsided. But it was enough.

After that, I finally decided to pay the money for the stool test that had been recommended to me. When I saw my doctor the next week, I was shocked to learn that the test was actually covered by insurance! Wow! I took it home, read the instructions, and realized I needed to go off of a couple of my supplements for 2 weeks before I could take the test. So I waited. And waited. And finally it was time, but my joints were acting up and I just didn’t have the mental bandwidth to manage the pain and the test at the same time.

And then, finally, I took the test. For 3 days I scooped poop into a cup. Joy oh joy. But I did it.

It took time for the company to process the test. Then more time for my doctor to get the results, and for the results to be sent to me. But now, finally, months later, I have the results!

And I have no fucking clue what to do with them.

Some aspects of my gut are in balance, others are not. My doctor was honest: there was nothing he could suggest except to take a probiotic (which I already take, but which I had to stop taking for several weeks before the test) and so he wanted me to see someone with more expertise. I appreciate his honesty. That’s why I see him.

There’s just one problem. He recommended 2 different practitioners. And neither are covered by my insurance. At all. Not one penny.

So now I’m considering paying. The one who looks more promising based on her experience is $217 for the first visit and $188 for each followup. I have no idea how many visits I’ll need.

I have the money. And to be honest, if I’m going to spend money, this is a good thing to spend it on. I save as much as I can these days, but really, why am I saving it? To take care of myself. And if I can fix this problem, avoid these episodes from now on, why wouldn’t I do it?

So once again, I am going to pay out of pocket for my healthcare. My insurance is fabulous when it covers my care. But when it doesn’t, I question what is wrong with our system. No one would question that I need help. There is obviously something very wrong. I have limited my diet, tried pills, and followed doctors’ orders. And yet, I still have episodes that have me curled on the floor thinking that death might not be so bad. I need help. And I am so incredibly lucky that I can afford to pay for it.

What if I was one of the ones who couldn’t?


It takes skill to injury yourself the way I do

March 27, 2018

The other day I woke up to find that I had wrenched my shoulder in my sleep. It felt like it was partially dislocated. Sometimes it felt fine, and then I’d try to put on a shirt or reach for something and there’d be searing pain. I didn’t fall. I didn’t pick up something heavy. I slept wrong.

Everyone hurts themselves from time to time. A stubbed toe or a paper cut are the hazards of daily life. No big deal. But then there’s this other level that shows up when your body is out of whack. Being out of whack makes me more prone to these kinds of injuries, and sometimes they make no sense.

Like the time I wiggled my toes and injured a tendon. That was a month ago. It still hurts.

I’m skilled, I tell you. Totally skilled. I mean, it’s not the average person who could give themselves a long term toe tendon injury, with daily pain, just by wiggling their toes!

And do I go to the doctor for any of these injuries? No. Of course not. Because I’d be going All. The. Time!

Don’t get me wrong. I do take big things seriously. When I dropped a chef’s knife on my foot a couple years ago, I went to the emergency room for stitches, and later had surgery.

But no, I don’t see a doctor for every injury. Just like I don’t see a doctor for every new gastrointestinal symptom or new pain or new type of fatigue. What’s the point?

So I’m waiting these out, hoping they’ll eventually go away on their own. They often do. Like the time I finally went to the doctor for the unmistakable nerve pain, to be told I had a pinched nerve and should go to physical therapy. I didn’t have time. I asked if not going would cause long term damage. She said no. So I didn’t go. Eventually it fixed itself. If it hadn’t, I’d have gone.

So many of us have far too many medical issues already, so we try to ignore the little ones. But it sure would be easier to ignore them if we weren’t so skilled at creating new ones constantly!


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.

 


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!

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!


%d bloggers like this: