The never-ending guessing game of boundaries

July 25, 2017

barbwire-1765900_1920

Having chronic illness means accepting limitations. For almost two decades, my limitations made life more difficult, and they prevented me from doing some things, but their impact was limited in its own way. Then things changed.

Today I want to go to the gym and ride the stationary bike at its lowest setting for 10 minutes. But I’m not sure if I’m up to it. That’s one kind of limitation. That bothers me, but not as much as the other kind of limitation.

I want to live life on my own terms. I want to earn a living and go out more with friends. But mostly I want to travel.

Yesterday a friend told me about a trip she is planning. She knows that it is beyond her chronic illness-produced boundaries, but she is taking a chance by going anyway. And it made me question, not for the first time, if I should take more risks.

Part of me thinks I should. My doctor thinks I could. And I’m tempted to just pick up and go. But then I get scared. What happens when I inevitably feel sick? I won’t be able to bring medical marijuana – the only thing that helps – with me. Is it worth taking a trip, when I will probably feel like crap for half of it, and feel horrible when I get home? Will I be able to enjoy myself enough for it to be worthwhile?

But then I wonder, what kinds of regrets will I have if I don’t go? My symptoms will probably get worse over time, not better. Now travel feels difficult, maybe not worthwhile, and scary. At some point it will be completely impossible. Don’t I owe it to my future self to take a trip today?

Sometimes I think I should try doing something small to test the waters. But those smaller trips feel boring. If I’m going to put myself through hell, shouldn’t it be for something fantastic? Sure, I could go to Washington D.C. for the 3rd time, or to Nashville (which I’ve never had any interest in) for the first time, but it would be so much more fun to go Sweden or Norway or Iceland! Those are places I have wanted to visit for years, and I would have so much more fun there. If I feel up to doing anything.

And of course, there’s also the money issue. If I had gobs of money, not only would I not stress out about money, but I could buy certain comforts: a first class seat in the plane, a nicer hotel room, a rental scooter for when I don’t feel up to walking. Instead, I question if I should take money out of my savings for a trip at all, even one without those extra comforts. Then again, I might regret it if I don’t. I probably will.

So these thoughts are spinning around my head for the millionth time. I know some people with chronic illnesses travel. I know others don’t. I know it’s a personal choice and I need to be the one to choose. But that doesn’t make it any easier.

Because in the end, it’s not about the trip itself. It’s about the fact that my world has become very small, and I feel the need to open it up. I need new experiences and excitement. I know that would sustain me in a million mental and emotional ways. I just wonder what it would do to me physically.


Oh summer, why must you torture me?

July 5, 2017

It is a bright, sunny, not-too-hot day. I should be taking a walk outside. Sitting in the sun. Enjoying the weather. Instead I had to cancel plans I was looking forward to so that I can sit inside and feel lousy. Again.

I don’t know what it is about summer. I just know that it kicks my ass every year. This year is actually not as bad as usual. I have been in better health, and I assume that’s why. Instead of feeling crappy starting in March or April, I made it to June! Of course, we had an unusually cool May, but still….

But not it’s July and I feel like I’ve been hit by a truck. I increased my adrenal supplement for a few days and that helped, but when I lowered it, the fatigue rushed back. I’m seeing my naturopath in the morning and I have a feeling I should raise that supplement dose for the rest of the summer. It sucks, because after many years, we had finally just lowered it a few months ago! I was so happy to lower that supplement. It’s not something I should be on permanently. The idea is to keep lowering the dose until my adrenals can do the job themselves. We want to avoid long term dependency.

So much for that.

Yesterday was a lovely day. It was sunny and not too hot – perfect swimming weather. Plus it was a holiday, so most of my neighbors were away. I had no plans at all. The perfect day to finally try out my building’s pool. But there was no way. I felt like shit. I texted my friends that I wouldn’t be joining them, and I spent all day in pajamas. I watched many hours of tv. I didn’t do the cooking I wanted to do. Or the laundry. Or the putting away of clutter. Instead I watched tv and crocheted and knitted. Thank goodness for my sedentary yarn hobbies!

Being stuck at home is nothing new. I can handle it. The hard part is that the summer is when everyone else is out and about! All winter I felt better, but no one wanted to take walks in the snow with me. And I don’t blame them. But now they’re all out doing things, and I can’t join in. I’m stuck inside. And I like being out in the sun! I love it, actually. But on the hot days it’s impossible and on the not-too-hot days I usually don’t have the energy for it.

My new apartment has a patio. I’m hoping to spend at least a few minutes sitting out there later. At least I would get some fresh air.

But taking a walk, going for a swim, or keeping my date for tonight? No go. Because even on a not-too-hot, not-too-sunny, not-too-anything-bad day like this, I still feel like crap.

Maybe one day my immune system will be able to handle summer. But not today.


There’s no such thing as a quick swim anymore

June 26, 2017
pool-690034_1920

I wouldn’t mind being able to do this!

When I moved to a new apartment a few months back, a lot of friends were excited for me that I now had a pool. They were a lot more excited than I was.

I lived in a building in a pool once before. It was about 15 years ago. I was living in sunny Los Angeles, where pools are more common, and I was in much better health. I swam regularly during the months when I had less work (and more time.) It was lovely!

But this is not that. This is different. My new friends in the building often invite me for a quick swim. They have no idea what that really means for me.

  • Driving to the pool seems silly, but it’s 1/3 mile away, which is sometimes too far to walk, especially in the summer air.
  • If it’s too cool, no one wants to swim.
  • If it’s too hot, I can’t be outside, even in the pool.
  • If it’s too humid, I can’t be outside, even in the pool.
  • I must bring a lot of water and snacks, even for a “quick” swim, to stay hydrated and keep my strength up.
  • I will be in a lot of pain afterwards.
  • I will be in a lot of pain the next day.
  • I will be exhausted the next day.
  • I might have to cancel all of my plans for the next day so that I can rest and recover.
  • I won’t be able to cook that night, so I need to have leftovers available for dinner.
  • Obviously I can’t swim if I have plans later in the day, because I’ll need to rest.
  • I need to take extra meds if I’m going to swim, which means I have to know about swimming far enough in advance to take the meds.

There’s more, of course, but this gives folks a good idea of why swimming for me isn’t the relaxing, care-free, spontaneous, fun activity that it is for my neighbors. There are many things in our lives that get ridiculously more complicated, painful, and exhausting once chronic illness enters the picture, like grocery shopping. The big difference is that swimming is completely optional. Sure, skipping the pool hurts my social life a bit. But it helps my LIFE life a lot!

I’m not saying I won’t go swimming at all this summer. Only that the logistics have to be just right. I need to know the right people will be there so I’ll have, I need to be feeling good that day and not have other plans in the next day and a half, the weather has to be just right.

It’s not easy. But then, few things are when chronic illness is involved. So yes, I will be the “spoil sport” who skips the pool. I can live with that. Because I’ll live better for it.


When the best medicine is taking care of someone else

June 17, 2017

Today started out rough. I felt like I did too much on Wednesday. Thursday I did less, but probably should have stayed home to rest. By Friday I had no choice but to spend all day at home in my pajamas, watching tv and crocheting. So this morning, I was glad to feel better than yesterday, but I still didn’t feel great. And yet, I didn’t want to cancel all of my plans.

My evening plans had to be cancelled. I knew I had to get to bed early. But the afternoon plans – a friend coming over who I already cancelled on at the last minute last time – I didn’t want to cancel again. So I rallied and got dressed and waited for her to arrive, knowing it would be a quiet day and I wouldn’t have to leave my apartment.

When she came, she had the start of a migraine. Unfortunately, she had switched purses and didn’t have the over-the-counter medication that helps her. I didn’t have it either. I offered to go to the store, but she said no. So I messaged a bunch of neighbors. No luck.

I got her a cold pack for her head. I made her tea. I shut off the lights. Eventually, I insisted on going to the store for her. So much for staying home. But the funny thing was, I felt ok.

After taking the med she slowly started to feel better. I got her food and kept on eye on her, making sure she was doing ok.

I have noticed this kind of thing before. Obviously, there are times when I’m not at all able to care for someone else, or when caring for someone else will make me feel worse. But then there are other times, times like today. Times when I’m not doing great, but I’m not doing horribly either, and taking care of someone else gets me outside of my own head, distracted from my own condition, and eventually I even begin to feel better.

I feel bad my friend had a migraine. I wish that hadn’t happened. Still, it was a good reminder for me:

Sometimes the best medicine is taking care of someone else.


I want my time back

May 25, 2017

Back in the days when I worked full time, I felt like my job ate up all of my time. And it did, in a very obvious way.

Now I feel the same way, but it’s less obvious.

I’m trying to work, to earn some money, and it’s hard. It’s also time consuming. I’m doing this part time because that’s all I can manage, but even that feels like a lot.

And then there are the doctor appointments, the daily physical therapy, the extra time spent on food preparation, and just resting. The health stuff is its own part time job.

I’m constantly doing things and when I’m not, I feel bad because I should. Right now, I should be working on my new business, running errands, and exercising. There are so many shoulds, and not enough time.

I want to believe that I would gladly put in the time if I knew it would work, but even if the business succeeds, can I still maintain this level of input? What happens if I get a dog? How would I find time for him?

I am trying so hard to constantly work and be productive during my “good” times of the day, so I can rest during the others, and in that respect I’m succeeding. I get plenty of rest. But I also feel plenty of overwhelm. I don’t know what the answer is, or if there is one. I only know that I can’t do as much as I’d like, which is still only 20% of what I used to do, and it’s frustrating.


I couldn’t remember how I “got better”

February 23, 2017

It’s not like I’m “healthy” by any means. But compared to 5 years ago, I’m a different person.

If you were reading this blog 5 years ago, you know that I was struggling to get through each day. If I went grocery shopping, I’d be so exhausted that I wouldn’t leave the house again for the rest of the day, or the next day either. I’d rest up for 2 days so I could spend an afternoon with my family, then I’d need 2 more days to recover. I didn’t leave the house much, and when I did it was really tough. I researched my health issues and began to find answers. I would read 3 pages in a book, fall asleep, wake up having forgotten what I’d read before, and have to start over. The brain fog made it hard to understand any of the medical concepts and I often had to read the same paragraph 5 times. It took ages to get through one book, but I did it. And I learned from it. And then I started the next book.

So how did I get from there to here? Here, where I can go to the grocery store, read a chapter in a book, and cook a meal all in one day, while still feeling ok. It’s like a miracle!

Someone asked me today about medications I’d taken. We’d just met, but I’m obviously open about my health conditions and she’s in the medical field, so she was curious. But the thing is, I couldn’t remember.

Later, it started coming back to me. The diets. The supplements. She asked about prescriptions, but those weren’t what did it. Except the thyroid medication. I’d forgotten about that. Oh yes, that helped a lot. Getting rid of the daily nausea did wonders. And the supplements, slowly over time, began to work. Of course, I forgot about the sleep apnea diagnosis. First the CPAP machine, then the ASV machine (similar to a CPAP, but with different air flow) did wonders for me.

I guess the brain fog still rears its ugly head, because I honestly could not remember any of that in the moment that she asked. I think every day about how much better I’m doing. I am so happy, grateful, appreciative. There are a million “What ifs” for how I might not have improved. But I did improve. Thank goodness.

So the next time I can’t remember how I did it, I will remember to read this blog. These 5.5 years of writing are like my medical diary. It covers all of the big moments, good and small. Not to mention the hell of dealing with benefits (my food stamps got cut off again last week! For crying out loud! I got them back, but come on….)

The thing is, I couldn’t remember today how I managed to improve. But I didn’t forget that I had. I didn’t forget February 2012 when I first cut out gluten. I didn’t forget falling asleep while I struggled to read a book about hypothyroidism. And I didn’t forget how grateful I am for the improvement.

I remembered the important parts. I blocked out the struggle.


Tapping into my extrovert side

February 6, 2017

img_20161223_091955I’m an introvert. If I’d known that about myself and understood it, my teens and 20s would have been a lot easier, that’s for sure! It turns out, it’s ok to want to stay in and read a book on a Saturday night. Go figure.

I also happen to be a social introvert. I love being with people. I even feel like I need to be around people from time to time. And on the days I’m feeling more extroverted, I’m good at it. I can have pleasant conversations with good friends and with total strangers alike. As long as I get plenty of breaks for alone time so I can recharge.

The thing is, when you’ve got a chronic illness that creates so much fatigue you can’t work and can’t always leave the house, and so much pain that sometimes getting to the bathroom takes everything you’ve got, social time can be hard to come by. Friends sometimes come over, but not so much these days. As my friends have begun to have kids, visiting has become difficult or impossible. I understand and I don’t blame them. But it still sucks.

Six weeks ago I moved. I can’t believe it’s already been 6 weeks! I knew moving would mean that some friends would visit less often, since I’m not on public transportation anymore. Still, it’s not like I had that many visitors anyway. It was worth the trade-off, I figured. Little did I know!

This is the first time since college that I’ve lived in an apartment complex, but I’ve never lived in a complex like this. People are so nice and friendly!

First there was the complex-wide holiday party. It was less than a week before I moved in, and I should have been home packing boxes, but I knew it was important to meet people. So I got slightly dressed up, drove all the way out, and put on my extrovert costume. I met several people, including a few who lived in my building, and traded phone numbers with a couple of them.

After the move I made a point of talking to neighbors. I introduced myself to everyone I met. I knocked on doors in my hallway. I chatted with the woman clearing snow off the car next to mine, and the random person passing walking past me on the sidewalk. I smiled and was nice and friendly.

And it’s paying off. A neighbor and I have been taking walks in the evenings when she gets home from work. We have done this at least a half dozen times, and it’s really nice. Another neighbor invited me over for game night. That led me to meeting more neighbors. I hit it off with one right away, and we’ve now hung out a couple of times. Today I saw a neighbor I’d spoken to a few times walking by my patio door so I opened the door to say hi. She and her puppy (so cute!!) came in and I invited her to sit. We chatted for a bit as the puppy sniffed around and then returned to me for petting. As she left, I saw another neighbor who I knew, so I invited her and her pup in, and they hung out for a bit.

None of these are life-altering per se. But they matter. On a day when I wasn’t going to socialize, I socialized. It didn’t last long, but it happened.

I have spent many days being home alone and feeling lonely and sad. I know I will feel that way many more days. It sucks, but that’s my reality. A lot of the time I won’t want visitors. But on the days that I want to see people but don’t feel up to going anywhere, how amazing that I have neighbors right here who I can hang out with! It might not happen every day, but that doesn’t change the fact that it’s always possible. In time, I will get to know more of them. Some will become friends and some won’t. Just having people to say hi to, though, makes a huge difference.

I knew this was a good move for me. This just makes it 10 times better.


%d bloggers like this: