The Month That Was

Since I didn’t manage to post any weekly updates in February, I’m going to do a monthly review—even though we’re in March now. 

Hello March! It’s great to see you.

-  February was a rough ride. I’m still trying to recover from the intestinal infection that started months ago, and I had to spend much of the last few weeks unable to leave my bed or couch. But I feel like I’m finally turning the corner. I had to cancel my brain MRI at Stanford (this is the third time I’ve had to cancel it), which doesn’t help my terrible record so far of showing up to appointments in 2016. 

Struggling to show up has made the emotional frustration of illness unmanageable. I put off writing this post until I could get my frustration under control. I can manage being bedridden and very ill for weeks on end but when I can’t show up to appointments, manage my care, or accomplish any of the basic things I need to do every day, then the frustration becomes unwieldy. 

The last few days have been better though. We’re having an unseasonably warm patch here in California. It’s hard to feel down when the sun is shining like it is.

- I’ve been very active my whole life and even though my body continues to become more limited, I’m still militant about exercising—to the point that I’m constantly overdoing it. I’m still learning that I can’t do the exercise I want to do. I have to do what works for my body and adapt to its abilities. The last few weeks, as soon as I start to feel a little better I try to get back on my stationary bike and then end up bedridden again. Exercise is essential for managing Dysautonomia and fending off de-conditioning, but since Myasthenia has taken over my body as well, I’m very limited in what I can do. If I push my body even slightly past its limits, the weakness turns into paralysis and my breathing completely shuts down. It’s really not cute.

So I’ve been starting to scale back and adapt my exercise routine. I’ve been doing a mix of simple yoga, pilates, and some of my physical therapy exercises in the morning, and I am seeing results! Usually, on the days I exercise I’m tapped out for the rest of the day but doing these simpler exercises doesn’t completely wipe me out for the day. I’m able to accomplish more.

A few years ago, I started to suddenly have balance issues and the problem, like many of my other symptoms, has only worsened since then. I do the exercises my physical therapist gave me to treat the balance problems but they’ve never helped much. They would only make a dent and wouldn’t have much lasting effect. It’s hard to tell but it seems like doing yoga poses every day actually has. I do the poses between a table and a wall so that I can catch myself when I inevitably fall. I used to do yoga regularly but this is a simpler version of what I used to be able to do. The poses I do that target balance are warrior pose, tree pose, balancing stick, and triangle. I often meditate after I do my exercise. Exercising is working best for me in the mornings right now so I'm rolling with it.

Yoga is definitely not for everyone so if you are considering it I’d recommend talking to your doctors or other medical professionals first to see if it could help you.

Doing Tree Pose like a boss. Like a wobbly boss

-  My improved balance has helped my mobility too. I have had to use mobility aids for a few years because of weakness from Myasthenia, balance problems, and orthostatic intolerance from POTS. Basically, whenever I am upright and moving my body is screaming “WHY WOULD YOU EVER DO THIS TO ME”. Yet, I still push myself to move. I try to get out and walk every day with my trekking poles, which my physical therapist suggested. They let me use mostly my upper body when I walk since my weakness is mostly concentrated in my legs and they give me added stability.

Last week I actually made it farther than I have in many months. I made it all the way to the corner of our street (about half a block). I was starting think I’d never make it that far again but I did! Husband took a picture for me to commemorate the moment. I’ve been walking to this point almost every day since! I'm thrilled.

-Monday was Rare Disease Day, which started initially in Europe but now has become a global event. The definition of a “rare disease” sometimes varies between countries. In the US, it is defined as a disease that affects fewer than 200,000 people. Myasthenia Gravis is considered a rare disease but POTS is considered a “rarely diagnosed” disease. Statistically, 1 in 100 teens are affected by Dysautonomia, but it is much less common to have initial symptoms later in life (which is what happened for me). Since Dysautonomia is an umbrella term, there are rare forms of it that qualify as a “rare disease” such as Pure Autonomic Failure or Familial Dysautonomia. Ehlers-Dalos Syndrome, a rare connective tissue disorder often associated with Dysautonomia, is a rare disease.

Rare Disease Day is a great opportunity to raise awareness about rare diseases since research and treatment options are so limited for these diseases and patients typically must endure many years of testing and even misdiagnosis to finally get a true diagnosis.

I had hoped to bring you information about the event sooner but I’ll have to aim for next year. We still have Myasthenia Gravis Awareness month in June, Invisible Illness Week likely in September, and Dysautonomia Awareness Month in October, but every day is an opportunity to raise awareness!

MyAware Ireland shared this video on Monday with a brief explanation of Myasthenia:

- A few posts ago, I outlined some of my goals for the year and I mentioned that I wanted to work on a few projects with husband, including my mom’s antique armoire she gave me many years ago that’s been sitting unfinished in our garage. A few weeks ago, I went out into the garage and husband had moved it into the middle and he said “let’s make it happen.” 

I can’t remember when my mom bought the armoire but I know I was a teenager or younger. She decided to refinish it and sanded it, but never finished it and decided to get rid of it. Before we moved to Nevada, I told her to keep it for me so I could have it someday. It’s sadly been sitting in a garage unfinished for over a decade but we finally finished it! Husband did about 85-90% of the work, but now it’s sitting in our room and I’m over the moon that it’s finally back to its full glory. I wish my mom could see how beautiful it turned out.

- I was supposed to spend Monday this week lying in the VERY LOUD TUBE for an hour and a half doing my brain MRI, but instead I was home working on recovering from February's douche-baggery. Instead, we played games with our friends. Game time is serious business for me, husband, and our friends. We try to play once a week and have been for years. Now, they move the table to the couch so I can play from there. It’s hard to feel down about life with good friends like this

All my favorite beards

I hope all of you out there are doing well! 

Some Goals for 2016

I meant to get this post up in December or at least a few weeks ago, but this post is a compliment to my post where I outlined what a typical good day looks like. I spend much of my time coordinating my care, resting, and working around my symptoms. I make weekly goals in my planner every week and then prioritize them, always making exercise number one no matter what else is going on that week. The rest of my goals usually involve phone calls, paperwork, appointments, etc. Thus, my life often feels like it boils down to constant management of my own health. I need a reminder to focus on life and my other goals.

I made this list in December and strategically left out my health-related goals because I’m trying to find a way to carve out a life, or a semblance of a life, outside of illness. I would say that the last few years, illness has controlled my life no matter how much I try to make it the other way around.  I like to believe I’m the captain navigating these rough waters, but often I’m really just the vessel plodding along in the storm. I have surrendered to the fact that illness is a constant source of chaos but it doesn’t mean I can’t at least attempt to make a life in conjunction with that chaos. This is what I’m telling myself at least.

My BFF Carrie Anne has an enviable Life List and she inspired me to make one a few years ago. It’s funny; I actually recently went back and looked at the one I made, which is from my pre-sick life, and I put things like “hike Yosmite’s Upper Falls,” “go whale watching,” and “publish more academic articles” on there. Uhhh….not quite. I’ll have to start from scratch at some point on it. 

But here are some goals I think I can manage this year:

1. Get Back to Creativity

Whatever your passion or skills, creating and the desire for self-expression are the essence of our humanity. I have always been artistic but I lost some of that creative spirit when I became an academic and while dealing with illness. I used to play music regularly, even getting paid gigs for weddings or at restaurants. I worked as a children’s illustrator for years at our local library. I was constantly creating and producing. This is my number one goal for this year: do something creative every day.

I’ve been playing my keyboard almost every day for a few months now so I’m on track with music. Even though I cannot perform right now (which was always my motivation to keep practicing), I’m working on learning and memorizing new material and trying to improve. I’m hoping to try to focus more on writing, finishing, and recording my own material. That’s at the top of my list for my creative goals.

I dream of getting back to painting and giving friends and family gifts of artwork regularly. I dream of sitting in my yard and drawing for 10 minutes at a time and taking breaks. Honestly, working as an artist for so many years put a damper on my desire to create my own artwork. As with all creative pursuits, it takes commitment to improve as an artist and develop skills. I have not been committed to painting for many years. But I still desire to do it more consistently.

I have some clear writing goals. I’m working on getting at least one blog post up a week, getting more writing published, and working toward writing my book. I got six posts up last month, so I’m already on my way toward reaching some of my writing goals.

2. Go Outside

I try to remember what pre-sick life was like and what I did every day in those years, and I would not describe myself as necessarily a home-body then. Yet, since I’m home-bound now, I don’t even leave the borders of my own home with any frequency. The boundaries of the world I inhabit now can be measured in mere feet. There is no literal or figurative horizon to look out to and build dreams on. My horizon is now internal.

We live in a duplex that has an enclosed yard and that was the main reason why I wanted to live here. I try to sit outside in our yard every day. It’s difficult during the warm months (which is most of the year here), but I try to time it right each day to get outside even just for a few minutes. I try to walk with my trekking poles regularly (I’ve had limited success with this in the last few months unfortunately). My goal this year is to get outside every day. 

Along with meditation, this is fundamental to my mental health and sense of well-being. Getting outside, even just sitting in our yard, helps me feel like I am part of the world and feel less trapped. I talk to my cats and the birds in our yard and watch the flowers bloom. It’s glorious.

3. Listen to more music

This is separate from number 1. Since I have to spend so much time resting, it’s a good opportunity to listen to music, yet I honestly spend much of my resting time either reading the news, watching documentaries, or staring off into space. I’ve been anxiously waiting for the full swing of the election season so I’m already spending too much focusing on it. I’m not very interested in football or baseball. The World Series or the Super Bowl are barely a blip on my radar. Politics is my sports.

But music gives me more joy than almost anything else, so I would like to disconnect more and just listen. Listen to all the new music from my favorite artists I haven’t listened to yet. Listen to some of my records I haven’t listened to in ages. Just listen.

4. Read more

I wrote a post a few weeks ago that listed the books I had finished in 2015. I finished 20 books but I’m aiming for 30-40 this year. I know I’ll likely never get back to the 50-70 I read when I was an academic but it will feel close enough.

5. See more of my friends and family

Even though I don’t get out much, I see some of my friends somewhat regularly. But I want to see more of them and see more of my family. The last few years have not been kind to my family and our relationships suffered significantly under the strain of my mom’s failing health. I have high hopes that we can start to move forward this year. I want to see more of my husband’s family too, especially my crazy nephews.

I’d love to be able to drive again. That would make a huge difference with being able to see family and friends more often. Hopefully at some point I can do that again.

6. Work on projects with husband

My husband is a builder and maker of things but the times I have participated in his projects have been slim to none. I have a gorgeous 1920s antique armoire that my mom saved for me that desperately needs to be refinished. It’s been sitting in our garage for three years and I can’t wait to see it back to its full glory. It’s a serious undertaking but husband is on board to help with it.

We have some other projects on the table. We ordered a flint-knapping kit last year and have been waiting for some warmer weather to practice making hand axes. We can party like its 10,000 BC and make some prehistoric tools. Sounds fantastic.

This could come in handy in the zombie apocalypse

7. Travel (i.e leave the house for things that are not appointment-related)

I sometimes think about what my life would look like if illness hadn’t taken it over. I’d still be a workaholic and spending much of my time working, but I’d also be playing music and travelling. I have always loved to travel. I honestly cannot remember the last time I left my town for something other than an appointment, even just to go to neighboring towns. One of my BFFs moved to the next town over a few years ago and I still haven’t seen her new place. My sister moved to the Bay Area a few years ago and I still haven’t been able to visit her there yet either. It’s just absurd.

I want to attempt to venture out this year. ‘Travel’ for me doesn’t mean I’m going to travel up the Pacific Northwest (though I’d give anything to do that again). It means going places that are nearby, even just a mile or two down the road, and the excursion NOT being appointment-related. I’m going to actually count any activity where I leave the house that isn’t for some kind appointment as “travelling.”

There are places I really want to go that are not that far from us but would take some serious planning to pull off, including having to stay overnight. I haven’t been to Yosemite in 3 years, which considering we used to go there multiple times a year, is desperately sad. I’d love to take a trip to Monterrey and go the aquarium. We both love the Foothills and had family in Sonora when we were growing up. Ultimately, our goal is to move there, but I’m hoping this year I could pull off a day trip there again. If I can start slowly working my way up to these things, maybe we could finally get back to thinking about our bigger travel plans like visiting my husband’s aunts in southern California again or finally making a trip to Yellowstone. Someday.

8. Meditate more

I had a great therapist when we lived in Nevada who had a background in mindfulness, and she helped me get back to meditating. I used to do a lot of yoga years ago and meditation was always part of that practice. I would like to consistently meditate again, preferably once a day. I have found that morning is the best time for me, and I have actually discovered that it helps to stabilize my heart rate and breathing. I usually wake up with my heart rate around 160 (thanks POTS) and struggling to breathe (thanks Myasthenia), but sitting and focusing on my breath helps to improve these symptoms that are usually the worst in the morning. But more than anything else, meditation offers benefits for mental health. For me, it has improved my anxiety significantly and helped my depression too. When I feel myself starting to spiral out of control mentally, I try to sit still for a few minutes and just focus on my breath. It really helps.

And just for fun, here are some big dreams and goals—some I’m actually working toward and some that are just crazy ideas I want to throw out to the universe:

1.      Finish my album of originals and sell it or make it free online

2.      Write a book (or two or three)

3.      Perform regularly again

4.      Start a non-profit that will help disabled chronically ill patients get access to important resources

5.      Travel to the UK

6.      Be able to drive to my friends/family’s house and be able to drive myself to local appointments

7.      Organize fundraiser events (for Dysautonomia, Myasthenia Gravis, and Alzheimer’s)

8.      Be able to teach in a classroom again (or any capacity really)

9.      Take freelance writing jobs

10.  Have a vegetable garden that I am able to maintain

11. Go camping

12.  Get an MFA or finish my PhD

13. Sell some of my artwork or give it away for free

I don’t know if I’ll accomplish any in this last list but these goals beckon to my soul for completion someday

I recommend making a list for yourself also, making sure to separate the health goals from your life goals. Even as I was writing this, I kept finding myself listing health-related desires. This was a good exercise to try to delineate my own desires from the health-related goals I’m working toward every day. We have to remember to live sometimes, even if much of that life has to be lived internally. There are still universes within each of us that deserve exploration.

A Day in the Life

Instead of an update post this week, I have something a little different. My best friend Carrie Anne suggested I write a post like this and I thought it was a great idea. I outlined a typical day for me to show what managing illness looks like and what it means to enjoy life while battling life-limiting illness. This is what a pretty good day looks like, without any major catastrophes. I included a little of my thought process also. This is the Spoon Theory of illness in practice :

“It’s 9:00. I meant to wake up at 8:30. I set my alarm for 8:30. What happened? I didn't even hear my alarm. I always feel better physically if I can get up before 9:00. Oh well. I feel like I didn’t sleep. How many times did I wake up last night? Just the once or twice? I woke up when I heard husband leave at 3:30. Did I wake up because I wasn’t breathing? No. Not this time. Intestinal pain? Probably. I can’t nap so this will be as good as it gets today”

I get up and make the same breakfast I have every day: instant oatmeal with a scoop of peanut butter and extra salt. I had to give up any hope of eating real food in the morning a few years ago because my GI problems are the worst in the morning and I will instantly be lying on the bathroom floor if I try to eat real food. I’ve had a few disasters from trying to eat solid food and I'll just leave it there. I get most of the oatmeal down usually and my morning meds, which are my tachycardia med, Mestinon for Myasthenia (I can suddenly breathe again!), Florinef (oh how I hate thee but I cannot function without thee), imodium (food and I can be on speaking terms again), and a salt pill. 

I start hydrating as soon as I wake up and drink fluids (tea, water, V8, Nuun) non-stop until bedtime. That's what it takes with Dysautonomia. I do some of my vestibular exercises in the morning (standing still for 30 seconds and trying not to fall from the swaying). This is supposed to help counteract my balance issues, even though they aren't vestibular related. It usually helps slightly.

“I’ve been sitting here watching mindless television for an hour. I got my food and meds down. Do I attempt exercise? I could get on the stationary bike, or try to walk, or do some strength, or just meditate instead and try to exercise this evening? It’s a risk either way. I could waste all my energy on exercise and risk not being able to make myself lunch or be able to do anything else. I’m going to risk it. Exercise seems to be going better in the morning. I might not have any energy left this evening. I better do it now.”

I do one of those options but never push it too hard so that I have enough energy still left. The “exercise” I do is only 10 minutes or less and very minimal. As a former athlete and someone who has always been very active, it feels pathetic but I know it is still a huge success if I can do it and if the weakness/paralysis isn’t bad enough that I can get some use from my legs. With Myasthenia, the more you use a muscle, the more weak it gets and if I'm having a rough patch, the paralysis could set in for days or weeks. I have to be very careful with how much exercise or movement I do because my legs especially will completely shut down if I ask too much from them. Sometimes I end up spending all of my energy on exercising and sometimes I finish exercising feeling slightly invigorated with more energy. It’s a crapshoot every time. 

I put my compression stockings on (if I exercise, this happens first), get dressed, do my makeup, brush my hair (maybe curl it), and listen to NPR news. I may be home-bound now but that hasn’t changed my perpetual desire for news and politics. I need to know what’s happening in the world even if I’m barely part of it. I’m still a citizen of the world.

I usually waste copious energy on getting ready. This is a controversial subject in the spoonie community. I get dressed and do my makeup every day, even when I’m not leaving the house, and I willingly waste much energy on this. It is my war paint, it is my normalcy, and it is how I know the difference between ok days and horrific days. Horrific days are ones where I cannot get dressed or put make up on or leave my bed. It’s a dash of vanity too. I don’t want anyone to be able to look at me and see the struggle etched on my face.

My mother taught me so much about self-presentation and feeling good about yourself through that presentation. Even when we were destitute and she was a single mother, she always looked fantastic and had high esteem about her appearance. It’s something I still value even if I don’t leave the house most days. I like to know that if a miracle happens and I have enough energy to leave the house or if someone comes by, I will at least be ready.

I won’t feel the part but I’ll at least look it.

“It’s 11:30. I have a little time before the Big Crash comes. It’s just all downhill until I can take my afternoon dose of Mestinon at 4. So many hours from now. This is the worst time of day for me so it’s time to sit. Sit and rest. My to-do list still has so much left on it for the week. I have phone calls to make, appointments to set up, paperwork to fax, I have to talk to the disability insurance company again. I can’t believe I have to call them again this week. It never ends. There’s never a week where I don’t have to do something related to managing my own care. What if I took a week off? Maybe in June? A whole week where I don’t do any of this? Maybe.”

"Sit still. I have to make lunch somehow in an hour and I need to rest for that. I’ll make the phone call after lunch. After I use my afternoon dose of my inhaler. That way I won’t be gasping for breath once I get off the phone. The only way I can sit still is if I force myself to read or watch something. I’ll watch another episode of Time Team. I never get tired of Time Team. One episode is enough time to be still and rest before I have to make lunch. Do I have enough energy to make myself something besides the usual eggs I eat for lunch every day? It’s a nice thought. The pain in my intestines tells me that I shouldn’t risk trying to eat other food anyway.”

I watch an episode of Time Team, one I’ve probably already seen and have the dialogue memorized, or a documentary or live music on YouTube. Then I try to get enough energy to make myself lunch and maybe unload the dishwasher in stages. I take an hour to eat lunch, which is the amount of time I need for each meal. Because of the Dumping Syndrome related to Dysautonomia, I have to eat very slowly. That way I can get enough calories and the food has a good chance of actually staying in my body long enough to digest it. 

All cooking is done while sitting, of course!

“It’s 1:00. I guess I’ll make that phone call. Then I’ll sit outside in the yard for a bit. That sounds lovely. That will be my reward for getting this off my to-do list. The birds in my yard always hang out with me when I’m out there. They make me feel like Snow White, if Snow White was a crippled, recovering academic with a Zeppelin habit. I’ll read or work on some writing while I’m out there. Or just listen to music. Or read the news. Either way, it will help me sit still and rest. I’ll check Twitter and see what my friends and spoonie friends are up to, or what political nonsense is happening. Look at the sky. Feel good about life and my place in the universe at this moment.”

Husband gets home in the afternoon and we talk about how his day went. He lets me vent my frustration about American politics or whatever news I read. We laugh at some random thing we saw online or heard and banter about our nerd interests. Then he usually plays video games and I read or work on some writing for awhile.

As my morning Mestinon dose starts to wear off, the afternoon is a slow climb. It’s the worst time of day for me so I try to spend most of it resting. My inclination is to keep moving, try to clean, do things, so I really have to force myself to rest during the day. If I push myself, then I can end up bedridden and struggling to breathe and move. Then the day is completely over. It's a constant balance to try to stay mobile and active enough while resting significantly. By 4 PM I can take my afternoon dose and then things start to turn around a bit. I can breathe better, have more energy, and more use of my limbs. I can maybe try to go for a walk or do a bit of cleaning or play my keyboard for 15 minutes. Usually I keep resting. If I don’t eat dinner by 6 PM, I start crashing again.

Husband makes dinner most days. Cooking complicated meals is just not something I’m able to do anymore, so he does the cooking. But it’s a fair trade because I do all the clean up. I don’t mind doing that part. It feels like my contribution. I take my vitamins with my dinner since I have the best success with food at that time.

The evening is the best part of the day because that's our quality time. We usually eat our dinner and watch whatever Sci Fi show we’re currently watching. I also watch the news at 5:30 every day. We sit on the couch and watch our show with our cats and then husband goes to bed around 8:30. I go to bed later than him so sometimes I’ll go in and lie down with him for awhile. We’ll grab one of the cats and have a team snuggle for 15 minutes and then husband falls asleep.

I usually shower, a very quick, lukewarm shower with my shower chair as one with Dysautonomia must take. A hot shower is one of the worst things you can do with Dysautonomia because it dilates the blood vessels and your body is already having a difficult time keeping blood flowing to your heart and brain from blood pooling. Gravity combined with heat is Dysautonomia kryponite. That’s how one ends up unconscious on the shower floor, which is not sexy. Even with the fast, lukewarm shower while sitting on my shower chair, I can feel my brain start to turn off by the end of the shower so I rush through it. After I shower, I sit for a bit and rest. I can’t shower in the morning anymore unfortunately. If I do, it could take me all day to recover from it. Evening is usually a success.

Around 8 PM, I usually get my second wind or at least a small surge of energy. I usually finish the dishes if I haven’t already or try to do some of my very easy physical therapy exercises. In the summer, I sit outside and read since I can’t go outside during the day. I loathe summer now but eating my breakfast outside in the morning and then sitting outside in the evening and reading are both real treats. I look forward to that bit at least.

“It’s 9 PM so I have an hour or so before I take the next round of meds and start preparing for bed. Should I try to exercise more? No. I did enough today. I have to save some energy for tomorrow. Do I watch some crappy tv? Or read? Maybe I could try to mop? I’d give anything to mop. I need to invent a vacuum cleaner/mop that I could ride because I just cannot successfully do that now. I miss the days when I could clean our whole house in an hour. Now so little gets done. Thank god no one ever sees our room and bathroom. I need to learn to live with it. It’s not the end of the world. I did enough today. It was good enough.”

“Maybe I could try to drive tomorrow? It’s been almost a year. Maybe I could walk all the way across the street? It’s been so long. Maybe I could go somewhere with husband? I don’t want to get my hopes up. I’ll just take whatever my body throws at me and accept it. I had an ok day today so I just need to be satisfied with it."

"I didn't have to spend any time in bed, and that my dear is glorious.”

“But I need to sit and rest before bed. I should do my evening dose of my steroid inhaler now. I may need a hit of my rescue inhaler before bed since I’m not breathing great. Hopefully they’ll both be enough to breathe ok through the night. I don’t want to have to use them back to back right before bed. That will lead to endless coughing and could keep me up. I’ll use it now.”

Then I take my evening meds and try to get to bed before 11. I usually feel my best if I can get to bed by 10:30 and wake up around 8, but I’ve always been a night owl. I wish I could stay up later, but those are days are over. I lie in bed and read for awhile, my cat climbs up next to me, and then I eventually fall asleep to start the day all over again.

***

What I hope to show with this is a little of what it’s like to manage chronic illness day to day and a little of what it’s like for those who are so ill that they are home-bound. This is actually what an ideal day looks like, without having to spend any time in bed and accomplishing a few things. Perhaps I'll outline a really bad day sometime, but it won't be an easy read that's for sure. I hope I showed not just the constant battle of managing illness, but more importantly, what it means to live a good life despite it—what it is to attempt to thrive despite a body strained by affliction and in constant chaos. 

This wasn’t my normal a few years ago because I was working still. I left the house every day. I lived among the rest who have a career and a sense of purpose. But this is my normal now and I have adjusted to it. My sense of purpose has changed significantly and often that purpose is just to try to make the most of each moment, in the hopes that I’ll feel well enough to enjoy it fully. 

I never know what I will wake up to each day or how I will feel moment to moment. The day can vary so widely that it is often impossible to predict what I’ll be able to do. But no matter what the day becomes, I have learned how to feel satisfied with whatever I get and whatever I'm able to do. It's not an ideal life, but it is still a good life. A good life indeed.