Getting back to “normal” – whatever that is

October 15, 2018

I’ve missed you! This blog is one of many things that seemed to fall to the side as I struggled to keep up with the million and one medical appointments I had over the last month and a half. I kept wanting to write, but just couldn’t manage to pull myself together enough.

For weeks it felt like all I did was go to appointments. “What day is it? Well, I’m at occupational therapy right now so it must be Tuesday.” When you keep track of the days by thinking about what appointment you’re at, things have gone too far.

Thankfully, things began to slow down a bit 2 weeks ago. Unfortunately, right around that time I was feeling really fatigued. It made sense, given the physical and emotional stress of all of those medical appointments, right? Plus we were having unseasonably humid weather. I took more supplements. I pushed through.

It got worse.

I rested more. Watched tv. Read books. Let my chores wait and cancelled plans I had been looking forward to. I spent my time resting whenever I wasn’t at an appointment. It still got worse, and my stomach started to act up, too.

I thought about my diet. Had I eaten anything new lately? Some apples. But I made sure they were organic (a few autumns ago my stomach acted up and I learned it was the pesticides on the apples.) And I had only eaten 4 apples so far this season. I couldn’t think of anything else until a few days later when I was literally doubled over in pain, barely able to even walk from my couch to the bathroom. And then it hit me all at once: iron. I had started taking iron supplements.

The next day I stopped taking the iron* and by that night, I was doing a bit better. The next day felt even better than that. And now 4 days later, I feel back to normal! Whatever the hell that is.

I’m still tired. I’m in more pain than usual, mostly in my back, neck and shoulders. That’s from last week’s “rest” time on the couch, when I had horrible posture. I felt too bad to bother with it, and I didn’t do my physical therapy exercises either, plus my physical therapist had to cancel our appointment, and now I’m paying the price for all of that.

Still, I feel so much better than I did before, that I’m managing ok. And I only have 2 medical appointments this week! My friends would think that’s a lot, but you and I know better. After weeks of having 3-5 appointments every week this is nothing! And today’s appointment was only 12 minutes away, so there wasn’t even much driving involved. I had enough energy afterwards to go grocery shopping, then I came home and had lunch.

I am now sitting in cozy clothes, catching up on email, finally writing here, and generally feeling a bit more in control of things. It feels so good! In the back of my mind I think about how I still don’t feel up to dating, so I’m putting off signing up for a new online dating app that looks interesting, and I’m intentionally not thinking about how much I want a dog and am still not able to care for one. Ok, I think about it a little. But I try. Overall, though, I feel better physically so I’m trying to focus on the good stuff and ignore all of the things I want to do and still can’t.

Hopefully this week I can get back to having some balance in my life and in my schedule and then, well, maybe I can catch up on the many things I didn’t get to do over the last couple of weeks. After all, sick or not, some things still have to be done.

*In case you’re wondering about the iron, my doctor wants me to try taking a small dose. I was already taking 1/2 the recommended amount. We’ll see. About 5 years ago I had to have iron infusions because I couldn’t tolerate supplements. I was hoping to avoid that this time around, but no luck. I’m anemic so if the supplements don’t work, I’ll have to do the infusions again. But that’s a problem to deal with next week. For now, I’m focusing on getting back to “normal.”

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Feeling too disabled to protest

June 29, 2018

Like in many cities around the country, there will be a big protest in Boston tomorrow, and I won’t be there. Not because I don’t want to be there, but because my health stops me.

At first I thought I might borrow a wheelchair like I did a couple weeks ago for the Pride parade. A friend even said she’d push the chair, and I really appreciated that. That spark of hope lasted for about 45 seconds. Then I remembered the weather forecast.

Until now, we have had surprisingly not-horrible-by-my-standards weather for this time of year. But that ended this week. And tomorrow is supposed to be the worst of them all: 97 degrees and a dew point that the forecasters are calling “oppressive.” The thing is, I struggle when the dew point is what everyone else considers reasonable, so you can imagine how well I do when it’s “oppressive”! For me, that means difficulty breathing, lots of sweating, my already suffering adrenals struggling even more to do their job, more pain than usual, etc. I could end up suffering not just for a day or two. I could have a major health setback. So I can’t go.

I would like to participate in some other substantial way. I can’t donate to funds, since my income doesn’t even support my own expenses.

So I do what I can. I post a lot on social media to make people aware. I don’t know how many people are actually seeing what I post, or how many care, or how many didn’t already know what I’m posting about, but if I get even one person to vote this fall who wouldn’t otherwise, then it’s worth it.

I am trying to humanize the situation for my friends and acquaintances. For most of them, Trump’s and the GOP’s policies are horrible, but don’t affect anyone they know. I’m trying to show them that isn’t true.

Of course, this is harder because I won’t post on social media about being on SSDI or food stamps. My “real” friends know, but I don’t want to share that online. Still, I do talk about how my health insurance is at risk, and the real consequences that could bring for me. I talk about not being about to work, about being queer, about being Jewish, about being a woman, and how these policies will affect me because of those various aspects of myself.

It’s not enough, but it’s a start.

I feel incredibly frustrated and yes, even angry, that I can’t protest tomorrow. Over and over I have had to miss out on these protests. Instead, I am trying to remind myself that maybe what I am doing is helping in some small way.

And in that vein, dear reader, let me ask you to please vote! I know that many of you aren’t in the U.S. but I’m guessing it’s important for you to vote, too. And for those of you in the U.S. with chronic illness, it is especially important for you to look at who is going to be on your ballot this November and what their policies are. Our lives are at risk. We are facing limits to healthcare access, cuts to social security as well as medicare and medicaid, not to mention cuts to food stamps and housing services. There is so much more that I could say, but I will just mention these few things that on their own should worry us all. This November we will see many seats in the House of Representatives as well as the Senate up for grabs, and it’s important to vote in folks who will fight for us, not hurt us. At the same time, many governors’ seats will be voted on, as well as other state and local seats, and those are also super important. If you ever want to learn more about any of this, just let me know and I will be glad to discuss it.

Either way, if you are in the U.S. then put November 6, 2018 on your calendar and be sure to vote! And if you won’t be able to get to your polling station, contact your town or city hall well in advance to get an absentee ballot. You can vote from home!

Even if, like me, you can’t get out to protest in person, you can protest with your ballot. Let’s do this!


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.


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.


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