Surviving the Worst

Well. I’m slowly climbing back from the worst rough patch I’ve ever had, but I’m here. I’m writing. My arms work well enough to type again. This is progress.

From the last few posts, you can see that the last few months have been one long rough patch, but it took a sharper turn the last week. The thing with experiencing the worst is it’s like a nightmare taking tangible form. The world drains of color. Nothing brings joy or relief. I couldn't see the other side, and it felt like I would never climb out.

But I am getting to other side.

I’ve had some really severe insomnia for about a month and a half. I am a lifetime insomniac and go through periods of not sleeping well but this was different. I was only averaging 3 hours a night and some nights, I only slept about an hour, long after the sun came up. The thing with illness is sleep is the center which all forms of symptom management orbit. If you don’t have sleep, it doesn’t matter how much you rest, eat well, exercise, etc. Without sleep, everything else is pointless.

I tried all my usual tactics, including changing my sleep medication. But the reason I was having such a difficult time sleeping is I was having to spend a good portion of my time in bed during the day and I was constantly waking up in the middle of the night because I wasn’t breathing. The latter is not an uncommon occurrence but the less sleep I got, the worse my breathing got and the more time I had to spend in bed. It was an unending cycle I couldn’t break.

I don’t know how people who have to spend all of their time in bed do it, but being bedridden is always a ticket to insomnia-ville for me. I also kept over-doing it as always and making myself bedridden again.

I did manage to make it to my pulmonary function test two weeks ago though. I’m hoping to write a post about it since it’s a standard test for Myasthenia. It’s a brutal, exhausting test that includes such exciting activities as breathing into tubes, hyperventilating on purpose over and over, and getting locked in a glass pod. It was nice to show up though and it’s the only test I’ve made it to this year, so it feels so good to check it off the list since I won’t have to do it again for another year!

But I didn’t rest properly after the test and ended up bedridden and back at insomnia-ville again.

But then my body had had enough and my muscle weakness turned to paralysis. Paralysis can come at any time with Myasthenia but this was the worst bout I’ve ever experienced. I couldn’t get to the bathroom without help. My husband had to push me around the house in my wheelchair, two thresholds I have been dreading and hoping wouldn’t happen for a long time or never.

We made arrangements to go the hospital but I had my husband call my doctor to see if that was the right choice. My doctor said that if the paralysis entered my respiratory muscles, then we needed to go. Even though I had little use of my limbs, I was actually breathing ok, for me at least. A healthy person would still assume they were dying. Going to the ER is stressful and offers serious risk. I knew I needed sleep and rest and I was not going to get either of those there. Also, my doctor has still not authorized immunotherapy—steroids and IVIG—for me, which is standard treatment for Myasthenia. I really don’t know what they would do for me at the ER. So I pushed through it. Survived moment to moment. 

It’s a skill I’ve gotten really good at. I’m an epic level survivor.

I haven’t had to spend any time in bed the last three days. The paralysis is starting to subside and I’m sleeping better. I don’t know if I have turned the corner yet but I feel like I’m getting there. The world has some color again.

I’ve been practicing what I call “militant resting,” moving as little as possible, focusing on my breathing, and giving my body the patience and care it needs. Now if I could just stop over-doing it and let my body recover, that would be great.

I missed my MRI at Stanford again and sent a message to my doctor asking for another option, hopefully to do the MRI locally since this is the 4^th time I’ve had to cancel it. I have another appointment there in two weeks. I really need to improve so I can finally show up.

I got my fancy, new record player that was my gift to myself for winning my short-term disability case and I’ve been lying on my couch listening to a lot of music, many of my albums I haven’t listened to in a long time. Music the best kind of medicine; it can be auditory resuscitation. As something fun and uplifting, I've been working on taking pictures of some of my vinyl collection I’ve been accumulating the last few decades. If you want to see it, follow me on Twitter or on Instagram.

It feels like there are shades of normalcy in life again and I'm working hard to get there. My husband has been the unsung hero in this awful saga. He is always the one who deserves all the glory. The last few months have easily been harder for him than for me since he has to care for me, while working and doing everything else. This was the first time I have needed help with every task so I've been working hard to get back to some functionality again. I'm definitely getting there. We survived it together like we always do and watched all of "Cut Throat Kitchen" while I rested.

Since my condition continues to decline and I've struggled to show up to appointments and tests to finally make headway toward treatment, I have this overwhelming sense of dread and fear. What transpired last week did not help this. But I have decided that I won't live in fear of the future and what may come next. I want to try to enjoy each day--laugh with my husband, listen to music, watch the birds in my yard, do everything I can do enjoy each moment.

When I was feeling at my worst, I wrote a poem to remind myself of this:

I refuse to walk in fear
To tread in trepidation
To worry what each corner brings
But instead
To wake each day to a fresh start
And face that possibility with an embrace
Each corner is a new chance
Something to learn, something to fight, something to laugh with
But I refuse to walk in fear toward it
Not anymore 
Instead, a gesture toward hope


I hope all of you are doing well out there. I'm hoping to get back to regular posting again soon. Peace and love to you all :)

Dear Body: Please Forgive My Transgressions

It happened again. Just as I was starting to recover—ready to grasp a bright spot—I make more mistakes and go back to where I started.

Stuck in this cycle of slight improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and over.

I push you body to exercise when you can’t. I make you walk when paralysis has overtaken your limbs. I have treated you as the enemy for years when we were always a team. Always.

Sometimes I just get so tired, so frustrated, so angry at the ever-increasing limitations. So tired of being shackled under the weight of illness. Then I over-step, ask for too much, push too hard.

I ask for forgiveness.

I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes. 

But you can’t do that anymore. That's no longer within the parameters of your abilities.

I was bedridden for hours and couldn’t walk the next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a lump on the couch—someone who asks others what they’re doing, who listens to other people’s dreams and aspirations, who rarely leaves the circumference of a room. I don’t want this.

So I push myself too hard every day. I ask too much every day.

When I rail against my fate and make questionable decisions in protest of illness, you remind me that my limitations are serious. The consequences are real. My breath leaves, my limbs no longer move, any hope of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.

Only rest. 

I rest in penance.

I ask that we try again. One more time. I’ll listen to what you tell me. I’ll ask no more than you can give. I’ll treat my limitations as sacred.

Because when we’re a team, we can do great things.

You give me energy to play music—to get lost in a melody for a short time, to improvise and roam in the geometry of sound. It is in those moments that I am truly free.

You give me enough energy to go outside sometimes and walk a few feet or look at the flowers growing in my yard. In those moments, I feel like I’m a member of the world again.

So we start over, start the cycle again, and maybe this time I learn from my past mistakes and press forward enlightened and wiser.

Ready to try again. 

Valentine's Day Playlist

This week I bring you something fun and uplifting, a Valentine’s Day playlist to get your groove on. I’m joining forces with my BFF Carrie Anne over at Little Big Blog for this one and we’re calling ourselves “Little Broken Hearts.” She curated her own love song playlist, and both playlists are here for you to enjoy.  

We text each other about 100 times a day, and she suggested this post about a week ago. She knows I’m a sucker for making playlists. I know many of you have activities you like to do while you have to rest on the couch or in bed as your body comes up with new ways to break, doing things such as adult coloring books or Netflix. I like those things too, but what I love to do the most is make playlists. I make a playlist for every event or gathering because I worry more about the music being right more than having the right food or drinks. I can spend hours fine-tuning playlists.

So when she suggested this post, my brain started spinning. These are songs that I really love and that make my heart feel warm and squishy. I hope they make you feel warm and squishy too! I explained a bit about each song and why I chose it.

Hit play and enjoy!

-Van Morrison “Into the Mystic”

This song has become like an anthem for me and husband, and we listen to it almost daily. The spirituality in the lyrics, the acoustic arrangement, and then the poignant saxophones that punch through give this song such a soulful, ethereal beauty that it’s hard not to feel your heart swell listening to it. It touches all the right places in my soul: “We were born before the wind/ Also younger than the sun / Ere the bonnie boats were won / As we sailed into the mystic”

-Nick Drake “Northern Sky”

We put this song on our playlist we gave as favors at our wedding 10 years ago. Nick Drake’s talent burned bright, but sadly he died far too young. He did leave us with his legacy of gorgeous music to still enjoy. This is another soulful, upbeat song that always makes me feel happy. Listen for the bouncy interplay of his guitar, the piano, and the organ. This one is perfect for long drives on sunny Sunday mornings.

-Bruce Springsteen “Secret Garden”

This song just slays me. Utterly slays me. I’ve been listening to it on loop the last few weeks. I can’t even do anything else while it comes on. It just possesses me completely. 

-Stevie Wonder “Creepin”

I’m a huge Stevie Wonder fan. Along with Nat Cole, he is my boyfriend. This is easily one of the sexiest songs he has written. Unsurprisingly, he plays every instrument on this song. It’s got all the makings of a great Stevie song but it’s the understated groove and longing in the lyrics that make this one perfect for love. This is a good one for make out sessions with your Valentine.

-Feist “Inside and Out”

This one is just pure fun. All respect to the Bee Gees, but Feist really modernized and improved this jam. The increased tempo really did the trick. This is one to dance to with your Valentine. Get up and shake it or get your groove on from your couch (which is how I do it).

- Sting "A Thousand Years"

I adore Sting. I love his intellectual brand of pop music and his brilliant musicianship. I had a hard time picking which song of his to include. I almost went with “Fields of Gold,”  but I really like this obscure song on one of his later albums. I love the cosmology imagery in the lyrics and the way he blends world music in his songwriting. This song deserves a careful listen. 

-The Nat King Cole - “There is No Greater Love”

I don’t even know what to say about Nat Cole. He is probably my favorite musician and has been for 20 years. His trio material is his best work, but most people know him for his vocal material. He was a brilliant pianist, organist, and arranger as well. This song is one of my all-time favorite songs in general. The arrangement is string-heavy but is the perfect complement to his velvet voice. “There is no greater love in all the world/ It’s true / No greater love than what I feel for you.”

-Sam Cooke- “I Wish You Love”

I’m convinced Sam Cooke’s voice has curative powers. It’s medicinal music. His voice has saved me multiple times when I’m crashing physically or emotionally. This song makes me feel melty all over. It’s hard to choose which Sam Cooke song to use for this list but this one is perfect.

-The Temper Trap “Sweet Disposition”

I only recently discovered this song even though it’s been popular for awhile. I had to include it because I’ve been listening to it non-stop for weeks now. It’s got everything you could want in a great pop love song: pulsing drum, falsetto vocals, an explosive chorus, an upbeat arrangement. This is also one to dance to.

-Diana Krall “Popsicle Toes”

This song is sexy and fun. She’s one of my favorite musicians and I’ve seen her live a few times too. This is a Michael Franks song she made her own. The sexy, suggestive lyrics and the pulsing groove make this one also a great make out song.

-Patty Griffin “Heavenly Day”

This song always makes me a little misty. It’s such a gorgeous ballad. I only started listening to Patty Griffin a few years ago and I really feel like I’ve wasted so much of my life not listening to her. My favorite part about this song is she wrote it about her dog.

-Tori Amos “Merman”

Like most Tori Amos fans, I’m a fanatic for Tori and have been since I was a teenager. I have her entire catalogue memorized. There are other embarrassing things I can share but I’ll save it for another time. This is one of my favorite Tori songs and the sweetest lullaby she’s ever released. It’s just her piano and her layered vocals. That’s standard Tori. Get your tissues out for this one. It’s unbelievably sweet. 

Now enjoy Carrie Anne's playlist! It's 90s perfection :) 

I wish you all love and a wonderful Valentine's Day!

What love songs would you include on your playlist?

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.

Routines and Goals: Resting Counts!

Being ill and unable to work means you spend your days lounging on the couch, watching intellectually-stimulating daytime tv, eating bonbons—enjoying a permanent vacation. Actually, it’s nothing like that.

Being able to sit on your couch indefinitely may seem like a dream lifestyle, but trust me, it gets old very quickly. I have acquired new skills like being able to recite dialogue verbatim from my favorite shows and memorizing data from every documentary about prehistory Britain. These are marketable skills, right?

Becoming home-bound was always one of my greatest fears, but last year I could see it coming closer and closer on the horizon. I always read stories of Spoonies who were home-bound and I thought “No way. No how. Not me. Never ever.” Alas, here we are. I often wondered how they managed it and what they did. I’m a workaholic and an over-achiever, and going from spending all of my energy working and thinking about “what’s next” to being home-bound has been a shock, though I am slowly getting accustomed to it. 

I am trying to adapt my habits, goals, and interests to this lifestyle. If I do not adapt them, I lose my sense of self and the sense that I am accomplishing anything. One of the biggest hurdles with adapting to being physically limited is adjusting your definition of success and productivity. You can keep your expectations too high and then live in constant frustration that you can't reach that bar (note: almost every post on this blog). Once you can learn to live a life within your physical means, then you can finally feel like you're making progress and contributing to the world again. There’s a learning curve with this and I’m still making the climb to the apex.

Making a routine and some goals is an effort to redefine my boundaries. When I was in school and working, I set goals in my planner every week. Now I’m setting goals to achieve what most people can do in their sleep, Sometimes molehills really are mountains, and that's ok. The key to making a routine and setting goals for the chronically ill is to make them specific enough to be achievable though nebulous enough to adjust to the chaos and interruption of illness. This is no small feat. I tried to create a routine based on what I know that I can achieve yet leave some wiggle room for the inevitable crashes that happen throughout the day:

-Wake up 8:30 or earlier

-8:30-9:30- eat breakfast and wake up, get all medication down (half to 1 spoon)

-9:30-10:30 exercise or meditate or walk (1-4 spoons)

-10:30-11:30 get ready and do some cleaning, rest (2-3 spoons)

-11:30-1:00 complete any medical business, eat lunch, rest (1 spoon)

-1:00-3:00 creativity time- write, play music, read, draw (2 spoons)

-3:00-4:00 keep going with creativity or clean, rest (1-2  spoons)

-4:00-7:00 spend time with husband, make dinner, rest (1-3 spoons)

-7:00-9:00- exercise if haven’t already, shower (2-4 spoons)

-9:00-11:30 watch documentaries or read and rest, meditate if haven’t already (half spoon)

This is still an idealized version of my daily routine. Often, I’ll get ready and try to clean a little and my energy is maxed out so I lie on my couch for an hour or more to recover, especially if I try to do something crazy like vacuum. My problem as a recovering workaholic is that I am always pushing myself way too hard, all day long. I included rest throughout as a reminder to sit and recover from each activity (otherwise, I’ll get to spend the day bed-ridden) and so that rest still counts as being productive. As I’m lying face down on the couch, I can still be kicking productivity’s ass. Honestly, not a day goes by that I don't think by the end it "Yep. I did way too much." It's a slow climb indeed.

I try to do most of the cleaning. I figure that is my contribution since I am not working, yet I have varying levels of success with it. I do some sort of physical activity every day, even if it’s just a short walk with my trekking poles. Exercise, for me, is the only way to get a return on investment for my spoons. Someday, if my body can reclaim a higher spoon allotment, I can add more to this routine. Something crazy like drive across town or go to a store. Big dreams.

I made some short-term and long-term goals. They include things I’ve been working toward already, things I have lost over the last year that I want to reclaim, and dreams I have yet to make happen:

Weekly goals: (make specific weekly goals in planner)

-Try to get at least one blog post up

-Practice at least 2 hours a week

-Try to finish one book a week

-Drive a little farther and farther every week

-Stationary bike 4 days a week, try to walk every day, do some physical therapy exercises most days

Monthly Goals:

-4 blog posts a month minimum

-Learn a new song and at least one new scale a month

-Complete one piece of artwork a month

-Learn at least one new recipe

-Read at least 3 books a month (depending on length)

-Be able to get on my stationary bike for longer (work toward more than 10 minutes)

-Try to do at least one major cleaning or organizing project 

-Start driving with some regularity again

-Plant some flowers and maintain garden

Long-Term Goals:

-Submit some blog writing to online publications

-Continue researching and start planning book
-Take an online teaching class

-Start regularly giving friends artwork

-Work toward performing again

-Re-learn the bass cleft and more complex chords and scales

-Be able to drive to my parents’ and friend’s houses again

-Be able to go to a store solo again

-Exercise at least 5 days a week

-Try trips to nearby places (hello Yosemite!)

-Walk past the yellow house and back with my trekking poles

I tried to break down these goals into manageable increments. I need to make a more specific exercise plan so I can keep track of all the physical therapy exercises. I’m trying to reintroduce some things I have been struggling with the last few months (playing music, driving, leaving the house). I haven’t been able to travel anywhere besides for appointments in an unmentionable amount of time. That’s one of my biggest dreams. That and performing again.

Even if I am not able to stick to my routine and don’t attain all of my goals, I at least can feel like I am working toward something tangible again. I didn’t include any medical stuff in this list because I’m carving out some kind of identity outside of that insanity.

Even as many of us are living the dream of spending a good portion of our time horizontal and semi-conscious, I think it’s still valuable to hold onto our passions and goals. Illness will take much from you but it doesn’t have to take everything. I hope this is helpful to anyone out there, especially to those who are also home-bound or physically limited.

And guess what? I’ve already met some of my goals: I have hit 10 minutes a few times on my stationary bike, I’ve gotten a blog post up every week this month, and I planted my daffodil bulbs, (with husband’s help but it still counts). Bam! 

These little flower nubbins make me ridiculously happy

I hope you are reaching your goals despite your own battles :)

Keep up the good fight,

Stefani