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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Am I losing my joints?

July 30, 2018

First it was my wrists. Then my knees. Then my fingers and then my toes. Every few years some new joints began to hurt. Until this year.

Suddenly, all at once, things are doing downhill fast. In the past several months I have developed pain in my feet, thumbs, and shoulders. The foot pain is from arthritis, and it is especially disturbing because I had x-rays done 3 years ago that were fine. In only 3 years there has been marked deterioration and we don’t know why. The thumb pain is from tendonitis, something I’ve never had before. We don’t even know about the shoulder pain yet.

A few months ago, none of these bothered me at all. Now, walking has become more painful than ever, my favorite hobbies of crocheting and knitting are extremely limited, reaching for things is painful, picking anything up hurts, sleeping is harder, and I am freaking out.

Why is this happening all at once?!? Well-meaning friends suggest that it’s weather-related, but I know my body, and it’s not that simple. And besides, let’s say it’s the weather for the sake of argument. How does that help me? That only means that for months every year I’ll be in extra pain? And over time, as the climate continues to change, it will only get worse. So that’s NOT reassuring. Besides, it’s not weather-related. The tendonitis could be, but that began before the heat and humidity set in. And weather did not cause the arthritis in my feet or the bone spurs that are developing.

I keep wondering: how much worse will this get?

For years I have assumed that eventually all of my joints would be come painful, but I expected things to continue in that every-other-year pattern. I would have been in my 50s before things got really widespread. Now, in my 30s, I’m seeing the progression and it ain’t pretty. What will happen if I can’t use my thumbs? How will I function? What if walking becomes even more difficult? What if what if what if?

What ifs aren’t helpful, but I’m only human, and I can’t help but think about it. I’m following doctors’ orders: stop standing on my toes, limit crocheting and knitting, do handy therapy exercises, wear new orthodics…. but it’s not helping. At least, not yet. And besides, the goals with those are to lessen the pain. The doctors agree that this new pain will be permanent. And that makes it extra difficult when well-meaning friends hear about what’s happening and say that hopefully it will go away. When I say it won’t, that this is permanent, they get uncomfortable. They want to offer reassurances but there are none to offer. I get that. I’m the same way when someone I care about is hurting. Still, it sucks that people keep suggesting it will get better. Haven’t they learned? ALL of my pain is permanent. Sometimes it improves, but it never goes away.

Today is a calm day. Last week I was so upset that I couldn’t even write about this. I’m sure I will have many more calm days and many more upset days. In the meantime, I need to find some rational, logical part of my brain to start figuring out why my joints are suddenly causing me pain so much more quickly than they used to. Then maybe, just maybe, I might stand a chance at slowing things down.


Forgetting that I can’t work

July 13, 2018

She was telling me about her search for a part time job that would both meet her logistical criteria and be interesting for her. After years of working just a few hours each week from home, she wanted a change. Just listening, I got excited, and remembered the feeling of accomplishment I got when I worked. I started thinking that I should look for a job, too. Then I quickly came back down to Earth.

Of course I couldn’t work. She stopped working because she could: her part time work from home was lucrative, and her husband earned good money. She was in fine health and there was no reason for her not to get work if she wanted to. I, on the other hand, can’t work. I am too sick. Even my attempts to work part time from home have failed, resulting in worsening health and little money. My only success so far has been dog sitting. I love it, but it doesn’t cover my bills and it doesn’t use my brain the way my former jobs once did.

The strange thing is that this isn’t the first time I’ve forgotten I can’t do something. I had to stop working almost SEVEN year ago. This isn’t new. Yet sometimes I forget. Because I still feel like the old me sometimes, like someone who can go on dates and go out with friends and work full time and clean my own apartment. Maybe I didn’t always enjoying doing all of those things, but I did them. And now I can’t.

I struggle to reconcile who I was, who I feel I should be, and who I am. They’re all me, but somehow, they’re not. My abilities and disabilities alter my personality in ways I don’t expect, but then leave other parts intact, much to my surprise. So I forget. I forget that I can’t go on a hike or swim before heading to a party or get a job. And forgetting isn’t the problem. Remembering is the problem. Because remembering sucks. Remembering brings it all crashing back.

So I will try to support my new friend in her search for a part time job, while also trying to stay grounded in the knowledge that I am unable to do the same. Because right now, that’s my reality.


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!


An unexpected cause of pain: being short

May 19, 2018

Of all the things in life that can cause pain, you would never think of being short as one of them, would you? I’m not talking about being short due to some genetic condition or illness. I just mean, you know, short.

My mother is 5’2″. My father’s mother was 5’3″ before she shrunk in her later years. I was expected to be at least my mother’s height, but then scoliosis caused me to stop getting taller as my spine compressed a bit, and I ended up only being 5’1″. Ok, almost. Hey, my driver’s license says 5’1″ and I’m sticking with it!

Two weeks ago I was diagnosed with arthritis in the joint of the big toe on my right foot. Since that toe is essential for walking, and now it’s painful, this isn’t good. And I’m only in my 30s, so I need it to work for a long time to come. This sucks.

There’s a long list of things my doctor says I can no longer do: run, jump, sprint, stand on my toes, wear high heels….. hold on! Back up! Not stand on my toes?!?

The rest of those are no problem at all, but I stand on my toes All. The. Time!

In these past 2 weeks, and in the 2 months of pain leading up to the diagnosis, I realized that I stand on my toes even more than I had thought. I do this for things that you would never guess (unless you’re a fellow short person.) Some of it isn’t too surprising: reaching items on the top shelf in the grocery store. Looking through a clothes rack that’s too high (why do stores put them so high up?!) But then there are the things you wouldn’t guess, like reaching the shelves in my kitchen cabinets and getting things off a shelf in my closet.

And then there are the things that have been shocking my doctors and friends as I mention them. Things like sitting on a bus or subway, where I’m not “standing” on my toes, but my toes are in that same position just so that they can touch the floor. Ditto sitting on a toilet. This is true at home, where I keep a step stool next to the toilet to rest my feet on. I began doing that years ago for comfort, so that I could actually sit without leaning far forward to put my feet down, during the hours that I would be on the toilet dealing with diarrhea and nausea (thank goodness that’s mostly improved!) It’s so much worse on public toilets, which tend to be higher. When I drive, I mostly press the pedals with my toes. After all, it’s hard to get my foot flat on the pedal, thanks to my short legs.

Then there are chairs and couches. When I was couch shopping, I had to try a lot of couches before I found one where my knees could bend. Most are so deep, my knees don’t reach to the end of the couch. But even so, my feet don’t entirely touch the floor unless I put a pillow behind my back, which isn’t the most comfortable thing. Without that, I have three options: put my feet on the coffee table, tuck my legs up on the couch under me, or have only my toes on the floor. The first I can only do for so long, so I usually do the second, which leads to neck and back pain.

When I had surgery on my other foot a few years ago, I spent several months in casts. I wore a sneaker on my other foot with a lift on it, so that my hips wouldn’t be misaligned. Part way into my recovery, I noticed something shocking: my neck and back pain were gone! I think it was for a few reasons:

First, I was sitting upright. I wasn’t leaning to the side or putting my feet up under me or next to my body. I couldn’t. I was mostly sitting with my feet up on the coffee table, to keep the injured foot elevated. Sometimes I sat upright, and with the extra few inches I had, my feet could now rest on the floor!

I also found that not having to reach up so far to get things out of kitchen cabinets made a big difference for my neck. It’s simply a matter of degree. We all reach up, but I had to reach up more, often over my head, and I guess those movements all added up.

On top of that, when I washed dishes, instead of hunching my shoulders as I reached up over the edge of the sink, then down into it, I was now simply reaching straight down. Wow!

Finally, I wasn’t driving. At all. I was recently driving a much taller friend, and she commented that my shoulders don’t go back against the seat when I drive. Well of course they don’t! How could they? I would need to have the steering wheel practically in my face in order to put my shoulders back. My physical therapist told me to use a lumbar support. I mentioned it would be annoying to adjust it every time I leaned forward and it slipped out of place. She said I shouldn’t be leaning forward. But she’s an average height. So doesn’t realize that I have to lean forward just a bit to reach the radio, heat, and air conditioning controls, not to mention seeing all sorts of awkward angles when I make turns or park.

This society is simply not designed for short people. A short friend told me about the joys of traveling to India, where the average height is lower than it is here in the United States. She said that she marveled at her ability to put her feet on the floor of the bus when she sat, and to reach items on shelves. It sounds marvelous!

Unfortunately, I live in a society designed for taller people. Until recently, I only thought of this as an inconvenience. I ask strangers to get things off of shelves in stores for me. I keep a step stool in every room of my house so I can reach items. I don’t use the top shelves in my kitchen cabinets because, even with the step stools, I can’t reach them. I can’t carry suitcases, tote bags, and other items, the way taller people do, because I can’t let my arms hang down; the items would drag on the floor. Instead, I need to raise these items up to clear the ground, and that’s hard and sometimes impossible.

Ok, I live with those inconveniences.

But now I have realized the pain it has caused me. And I resent that. Not that I can change it, but I resent it.

At home I will try to wear shoes with lifts, which is absurd, because I should be able to walk barefoot in my own home if that’s what I want to do. But there are no solutions to driving, sitting, and the myriad other ways that our society is causing me additional pain, simply because I am short.


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.

CR - time and overwhelm

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.


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