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! 

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.

The Week that Was, January 8th

I'm considering trying to write some weekly or bi-weekly updates on the blog to supplement the longer, topic-driven posts I usually write. I always need a reason and purpose for doing anything here, especially to convince myself that this is not an exercise in narcissism, so doing this might highlight a bit of “slice of life” of living with illness, with emphasis on “living” to show that although there is sickness here there is life too. This might help me post more too.

I had a bit of a miraculous week this week. Let the record show, it is possible to have an ok week!

* The last few months have been especially rough. I felt like I’ve been just surviving day to day, so a week where I wasn’t just surviving has been a welcome change. I think the insanely expensive, medical-grade probiotics I’ve been using are helping. I'm taking them to kill my current intestinal infection and to treat the constant oral thrush I have, which is caused by my steroid inhaler and rescue inhaler I have to use multiple times a day. I have to use the inhalers to help offset the respiratory weakness from Myasthenia. Ah, the constant struggle to manage side effects and even side effects of side effects. Sometimes it’s more difficult than managing the primary illness. 

But I think they are helping. With how expensive they are, they better. My GI doctor originally gave me these probiotics and when I see him again in two weeks I need to ask him for a cheaper option because these are out-of-pocket, not a prescription. Oof. 

Designer-priced bacteria

* So I took advantage of this miraculous week and my husband and I went to our local arts center (which we had inexcusably never been to) that’s right down the street. They have an exhibit of one of my favorite artists, Alphonse Mucha. My mom loved him and some of my first memories are staring at the prints she had of his work. Now I have one of her prints and some of my own. The exhibit ends this weekend and I would’ve never forgiven myself if I had missed it. They had some original drawings, some prints and lithographs, and a lot of information about what inspired him and his life. I had no idea that his nationalist sentiments were so pivotal to his work. It was a great experience.

I can’t remember the last time my husband and I went somewhere for fun together that wasn’t appointment-related so something like this was overdue. Despite the fact that my husband is also my caregiver, I’m learning it’s important to still maintain our relationship as husband and wife—to cultivate and nurture that role just as I did before I got ill. We are always trying to come up with things to do together.

The building was luckily very accessible and had an elevator to get to the other floors, which is always welcome. I’m hoping we can go there again when they have other exhibits.

* Although, there is constant debate about whether those with chronic illness and autoimmune diseases should get a flu shot, I get one every year. If you aren’t sure if you should or not, talk to your doctor about it. For me, the risk of getting the flu outweighs whatever risk there is with the immunization. I’ve never had a problem with it. I always get it in January but I swore last year I was going to get it when it came out in October. I still haven’t gotten it.

So yesterday, we headed out to Costco so I could finally get the shot. I was feeling really terrible yesterday (likely the fallout from our outing) so while we were in the car I told husband I didn’t want to go. As we circled back home, we drove by a new thrift store and I suggested we make a quick stop. We went for a few minutes and then husband rolled me over to the used bookstore next to it. I picked up a few books I’ve wanted for a long time. We left the house together for something fun TWICE this week. It’s unbelievable.

I probably should’ve spent yesterday resting or really pushed myself to finally get my flu shot, but I spend most of my life making good decisions and doing whatever my body demands that I do. I guess sometimes it’s ok to not make good decisions in favor of living a little.

* I talk to quite a few Spoonies on Twitter and I had a conversation yesterday with someone in Canada. She posted a picture of an accessible dressing room that looked like a dream but then explained that unlike the Americans with Disabilities Act we have here in the states, Canada has no comparable legislation. Someone else chimed in and said the Netherlands also does not. I had no idea so many industrialized nations, even ones who are politically more progressive than this country, have no accessibility legislation. They have no legal recourse to ensure public places are accessible. It solidified for me that disabled rights are a global issue, not just a national or local issue. Although the ADA has limitations and lacks enforcement, it does provide legal protection and makes the disabled a protected class of citizens in this country. We definitely have more work to do globally.

* When I’m feeling slightly better, it’s like a veil is lifted from my life, the perpetual shadow recedes and I can think about the future instead of just surviving moment to moment or each day. As I’ve been feeling better this week, I’ve been thinking more about changes and additions I want to make to this blog and my ultimate project of writing a book. I still have so much research, reading, and planning to do. I started reading Laurie Edwards' In the Kingdom of the Sick, which I’ve started multiple times but never finished. Eventually I’ll have a review of it in the Spoonie Reads section (along with all the other books I finished recently).

*It's been rainy here all week (who knew that was possible in California?) and playing my keyboard while it rains is one of my favorite things to do. I've been playing one of my favorite standards, "When Sunny Gets Blue," which is a perfect rainy day song: "Pitter, patter. Pitter, patter. Love is gone so what could matter?"

* One of my Spoonie friends who I talk to regularly (I even sent her a Christmas card) sent me a link to this great article about what it’s really like to live with chronic illness, in contrast to media representations of illness. It’s a great read. I also recommend this article from a woman on the patient advisory board at Dysautonomia International about her struggle to get a diagnosis for POTS. 

* I have to do an MRI at Stanford next week so I'm trying to mentally prepare for the long trek. Our last trip there wiped me out for weeks so I'm hoping this trip won't be quite so exhausting.

* I have exercised almost every day this week, wrote two blog posts, and I’m having kind of a good hair day today. A miraculous week indeed.

I hope that all of you are having an ok week.

Buck Up Buttercup

I think I am turning that corner finally. It’s nice to be a little part of the daylight experience again. Those weeks I was bedridden, my husband was my lifeline to rest of the world. I started wondering if there were still other humans out there. Did a zombie apocalypse happen? Did the machines finally become sentient and take over? I wouldn’t know. I was in bed listening to Enya, focusing all my energy on breathing and surviving.

It’s been a slow climb back. Deconditioning is the enemy with POTS but MG is often the buzzkill for exercise for me. My limbs have minimal movement right now because of the weakness/paralysis, but I am working hard to convince my body it wants to move again. I've been trying to get back to walking and my stationary bike. Slow and steady. I'm moving at a turtle's pace while the rest of the world rushes around me at a hare's pace. Slow and steady.

Willing my legs to move so I can walk with my trekking poles

The last few weeks were some of the worst in some time, but I’m trying to remain undaunted and keep moving forward. The thing with bad patches is they start to feel like they will never end, like sinking into quicksand and every time you move or make effort to climb out you just sink further and further. That's a lesson I hope to learn finally: sometimes you have to just let your body sink and then eventually, with patience and diligence, you make the slow climb out. I'm almost there.

This week has been a significant improvement. I’m taking joy in little things and accomplishments:

One of my friends had a yard sale and gave away many of her vintage clothes. I love all things vintage, and I woke the morning of the yard sale knowing there was no way I could leave my bed/couch still and venture out. The thought of all those clothes sitting there made me so sad. But one of my besties, Carrie Anne, my thrifting soulmate and sister in brokenness, gathered up what she thought I might like and brought them over. My world was complete.

A pile of free vintage clothes. Who could ask for anything better?

**

Something really really great happened. One of my goals has been to get some of my writing in online publications. I sent out an adapted version of one of my blog posts about learning to live honestly and authentically with illness to a few places. I wrote this post about a year ago when I had to stop working and I had realized I had been living a lie for years and the gig was up. The Mighty picked it up and posted it a few days ago. You can see it here. I'm hoping to start sending more work out there. I recommend all the articles at The Mighty. They post stories from the ill, the disabled, and their allies. It's a great platform for voices that are so often invisible. 

After this article was posted and I started sharing it in some of the groups I'm in on Facebook, I had an unbelievable response and a few people started contacting me. I’ve met some new, fantastic people in the last few days because of this article.

This is my favorite unintended consequence of “coming out” with my illnesses and starting this blog: meeting kindred spirits and so many inspiring people. I had no idea that would happen. I’ve made quite a few friends along the way, those who are “kind of broken” and those who aren’t. That has been an incredible gift. 

 ** 

I hadn’t left the house for two weeks, perhaps the longest of any rough patch I’ve ever had, but husband took me to the used bookstore around the corner today and I wheeled around a bit. I got a new book to feed my nerd interests. He bought a book about engraving. It was nice to see other humans and to see that the zombie apocalypse had, in fact, not happened yet.

85% of the things I own are books and vinyl records. What's one more?

*** 

So there are fewer weeds right now. It’s hard to remember during a really rough patch that things do eventually turn around. It feels like it will never end. But it usually does.

Buck up buttercup. Everything will be ok. 

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