Bathtub Theory

The energy symptom of my condition can be hard to explain. Most people can understand what "progressive muscle weakness" involves, even though it's invisible. The more I use my muscles, the weaker they get. But energy is more complex to put into words. 

I like strong visuals, they help me to better understand non-visual concepts. There is the very popular "Spoon theory" that some people use to better comprehend the energy struggles of someone with a chronic illness. Though excellent, that theory doesn't quite explain my personal energy struggles correctly. So I came up with my own "Bathtub theory." Here's how it goes.

Overnight when I sleep my "bathtub" (body) is filled with energy (water.) You still with me? Pretty simple. When I wake up, I have a full bathtub. I have good energy and am ready for the day.

Here's where my mitochondrial disease kicks in.

The second I wake up, the drain is pulled and my energy starts to go.

When I do some activities the water pours out faster. For example. If I'm gardening or cleaning my house, it's a gush of water down the drain. I lose a lot of energy doing those things. If I'm a passenger in a car, then it's just normal draining. 

The only thing that stops the drain is sleep. It doesn't fill back up until the next night's rest. When I lay down and take a nap the plug goes back in to stop the water loss but that's it. My muscles may "refresh" but never my energy.

A healthy, able bodied person loses energy too of course. Their tub also starts to drain when they wake up. But here's where we differ. They can easily add more water by eating, having a cup of coffee, sitting down to relax, etc... All of these things will add more water to their tub. Nothing will actually ADD water to mine except for a solid night's sleep.

If I didn't have my medication and supplements I would start each day with maybe a quarter tub fill instead of a full tub. I suffer from chronic pain, but it's not as awful as it would be without my medication. I also sleep more soundly through the night with my drugs to help me. Both of these things take a lot of water if not kept in check.

To recap.

The second I wake up my full tub of energy starts to lose water. The plug is pulled. The water is draining continuously through the day, just at different rates. A nap will stop it draining, but not fill it back up again.

Knowing this about my body I try to weigh what is worth doing and what I can put off or modify so I don't lose as much water.

Guarding my spoons

I love "spoon theory". As a visual person I can relate to energy being represented by spoons. Lately I've been learning how to guard my spoons better.

For example, if I have to take something to the back of my house (even though it's not that far) I'm learning to leave it on the table until I have more than one thing to go back. A big one that has been helping me lately is when I have to get up and down out of a chair.

If I need to do something that will require me to get up physically, more and more I will ask someone else in my home to do it for me (if they're around), or again wait until I have multiple things I need to do (like I have to pee AND I'll switch the laundry AND get myself more water). This does not come naturally to me. At all.

Did I mention this doesn't come naturally to me? I'm a multitasker for sure, but listening to my body and adjusting what I'm doing based on my what my body needs is incredibly hard. And I'm guessing that's not just for me, but for a lot of people.

I've noticed that now my spoons are now more dedicated to smaller things. 

One year ago 1 spoon would go to taking a shower and getting ready for the day. Now it's more like 1 for showering, 1 for putting on a bra, 1 for putting on makeup, 1 for the rest of my clothes, 1 for fixing my hair... which makes me much more selective about what I choose to do (not go around naked) and not do (wrangle on a bra every time). 

For me this is a huge part of learning day by day how to live with my chronic illness. Paying attention to what I can do that day, that moment and what's worth my spoons. 

Why it's easier to just stay home

My husband and I went out to see friends last night. They're good friends, but friends we have a hobby in common with and see about once a month if we can. I had tried to save up my spoons and had a good nap. I dressed up nice and we took Pablo out with Dory so I felt all spooned and tooled up. 

Then a friend said something really stupid that just knocked the wind right out of me. My husband/ally was behind me talking so he didn't hear and couldn't step in. Drat! I was left hanging in the wind. The conversation went like this.

Friend: "Are you working now?"

Me: "No. I'm on disability".

Friend: "Oh, so you're home?"

Me: "Yup!"

Friend: "Can't you even work from home?"

Me: ... (wind knocked out)

Me: "Noooo... I'm disabled. I'm on disability. I'm home not working because I can't work."

... "silence"

Me: "So how are YOU doing?"

That's my technique. Whenever someone puts their foot in their mouth I just turn the conversation away from me completely and onto them.

During that same evening I also had a very drunk friend hang ALL over my chair and myself, smudge my glasses, gave many many hugs in which I was careful to turn my chair off so as to not run over anyone... in short it was nice to see my friends but it was a LOT of spoons.

I seriously understand why people just stay home. 

My sweet friends want to bring a lunch over soon and come over to my house. I promise myself not to clean or feel bad about my house not being "up to snuff" comparing it to how it used to be. I also will not let my husband run around cleaning and buying food to entertain them. We'll see if that's better. 

I know people don't mean to say hurtful things. And it does come from strangers too. All the time really. But that's what I mean when I say often times it's just easier to stay home. 

It's ok to struggle

This chronic illness life is such a roller coaster ride. Not just for me, but for my husband too. One moment I'll feel I've hit homeostasis and I can work with all these symptoms and challenges. Then the next something new will come along, or something will get worse and I'm tossed into a sea of frustration once again. 

A lot of the time I really do feel like two people. One healthy and able bodied and the other sick, chronically ill and immobile. More and more I feel that one healthy side of me literally dying. My husband jokingly tells me "Don't you die on me"! And I always promise to "do my best". But it does feel like a long slow death of the "healthy me".

Turning into a mermaid

To me the "healthy me" is the one who didn't need to nap every single day, who didn't have to think about the accessibility of a place before I went somewhere. Who didn't have to measure what I could do during the day in spoons (energy) and not do a lot of what I really want to because I just can't. The healthy me could eat whatever, go for a walk, hike, run, take a bath, have an orgasm and other things that I just can't do now. She's dying and it feels like a serious loss.

Sometimes that loss feels like my heart will break and I will drown in my disability. Some nights it feels like I'll just stop breathing or never be able to walk again. Sometimes I think of taking a lot of pills or drinking a lot of booze to just get the pain to stop for a little while. But I never make those choices.

Instead I choose continue to fight and swim against this tide pulling me down. I come up for air, and gasp before going down again. Sometimes I get hopeful at a doctors visit or with a new medication and I feel like I have some new floaties to help keep me above water. 

What really saves me and always has is knowing my husband is right there with me. Holding me up. Keeping my head above water so I can continue to struggle and try to learn to go along with my symptoms. Rest, recover, heal, eat well, pull back, reach out. All of these things help. But that doesn't mean they're easy. 

SHE also helps a lot. "My little nap buddy". Pulling back on work has also been useful. This week I also decided to apply for State Disability. Despite pulling back on my work week and working from home one day a week I don't want to come to a point where I wake up one day and just can't do it at all. I'm trying to be ahead of these symptoms for once and not go under the next time a big wave hits. 

A Spoonful of Hope

Spoons come and they go. They are coveted and fleeting. I never have as many as I wish I had and I struggle to use what I do have in a way that enriches myself and those I love. I ask myself all the time now "does this matter? Is it important? If I can't answer "YES!" Then I really can't afford to spend a spoon on it. Sometimes even if it is important, I just don't have any spoons left.

This weekend was very full. It was my sister-in-law's 50th birthday party and Father's Day. I knew it was going to be busy, full and stacked high with importance. I tried my best to rest up and plan my spoons as best I could. But the tricky thing about chronic illness is that spoons don't work that way. You can't stockpile them and save them for really important moments. Even though I try.

Spoons are like most things in nature. Fleeting and unpredictable. Saturday was good. I tried to not "over do it" at the party so that I'd have "plenty of spoons left for Father's Day." Forgetting that it doesn't always work that way. So Sunday came and I was wiped. Not enough spoons to celebrate it "the way I thought it should be. The way I really wanted it to be. The way I thought my husband deserved." Of course this all led to me feeling "not good enough, frustrated, upset" and even more exhausted today (despite my wonderful man literally taking me home and sticking me in pajamas after I just couldn't be out anymore.)

Despite my best efforts I let "should" take over my "can." I stubbornly refused to listen to my body till I was on the verge of tears. And when I felt like I was "ruining my husband's day" he just gently assured me that I did no such thing and that he was very glad that I told him I had to go home and couldn't be out anymore.

Nature teaches me to listen and watch. To have awe for the things I can do and patience for the things I can't do. To savor moments as they pass because (like spoons) anything worth treasuring will for sure be temporary. After all, everything is temporary. 

Even though I'm exhausted today, I'm hopeful. My doctor got me a new rheumatologist and I'm seeing him a month. This is the first time a specialist got me in to see them in less than 3 months. I'm grateful to be expedited. 

My upcoming "tour of immunology" looks like this:

This Thursday = full spine and neck MRI (it also happens to be Summer Solstice)

June 27th = new neurologist for my neuropathy

June 29th = my 3rd physical therapy appointment

July 13th = back to my primary care doctor for a check in

July 19th = first appointment with my new rheumatologist

When my physical health is compromised it's easy for my mental health to try and follow. A helpful trick is to list 3 things that I'm grateful for each day. So here's my 3 things for today:

1) My husband, his support and love. He helps me take care of myself and makes me smile.

2) My dogs. My little one always know when I need some rest and she loves joining me in bed.

3) "I Love Lucy" - one of my favorite shows. Laughter is great medicine.

(And one to grow on: That I have health insurance! Always grateful for that.)

Healing

I feel like the combination of where I live and the field I'm in has left me saturated in two words... "Self Care." It's used in marketing constantly and it usually goes hand-in-hand with "spend money on yourself." 

Instead I think of self-attention to be healing moments. Giving myself the time I need and attention I crave to heal. Healing is different than "cure" of course. Healing to me is sacred time to sooth your soul and body. It never fails to leave me uplifted.

Here are some things I've been doing lately to aide in my healing:

• Using my spoons to make homemade gluten free pizza for dinner. Anytime I want. (Here's my favorite crust.) 
• Taking naps as often as I can (till I'm working again of course.)
• Noticing little things like flowers and fluffy bees.
• Literally taking time to smell the roses.
• Petting my dogs every morning first thing when I get up.
• Watching movies that I love like Moonstruck and You've Got Mail.
• Painting my nails (because I feel like the days I can do this for myself are numbered. AND it makes me smile to have colorful fingers.)
• Blogging and writing in my journal.
• Doing little doodles about how I'm feeling at that moment.
• When my husband reads me a story or rubs my back (or holds my hand, or gazes at me, or...) 

MMmmm... PIZZA!!!

My adorable puppies.
How could I NOT spend as much time as possible giving them pets?

I'm noticing what all of these things have in common (with the exception of my husband) is that they don't include other people. I'm a major introvert and get my spoons from being alone or with my beloved. NOT from being out in the world with other people. 

Figuring out what gives you spoons and indulging in those activities while trying to minimize what takes your spoons is vital. At least for me. And colorful nails. That's vital too.

Modification

I am blessed.
Not because I have a nasty chronic illness.
But because I have the means and live in a place and time where I can access items to make my life easier and reduce pain. I'm very aware that not everyone is so fortunate, so resourced or so supported. This makes me incredibly lucky.

As I get to know what I can easily do and what's more challenging for me I also learn what's worth the spoons and what isn't. Some things I can still do fine, but they cost so much in energy and muscle strain that it's just not worth it.

Here are a few things I found (all on Amazon - no affiliation) that have been making my life much easier. I'm not giving links to each thing because that's a hassle. Yes, I paid full price and wasn't compensated at all. But they've helped me.

This has helped the most. It's a UV sun parasol that's super compact. It has much better coverage that a hat and shirt and is light and easy to cary. It was less than $20 and it is the single most useful thing I've bought. If you're on a medication that causes sun sensitivity or sun reaction I 100% urge you to get one. I need to get another one so I can leave one in my car at all times.

This stainless steel mini chef knife has also been fantastic. My hand would hurt for hours after using our nice knives. This one has a rubber grip that has a bit of give so the impact doesn't go straight to your hand. The shape is very useful and the smaller size makes it perfect for things I regularly chop like onions. It's my favorite kitchen tool now.

Handles on cups are also a big deal now. They help me keep a grip on my glass and keep my hand from getting too hot or cold. Something you have to watch with both RA and Raynauds. My favorite coffee travel mug with a handle recently broke (not my fault.) So I bought this one. It's ceramic instead of plastic and I love the wooden handle. It fits great in my hand.

Click on the picture to go to the Etsy store

I'd been sneaking some thick cardboard cup cozies from our local grocery store and keeping them in my purse. These are wonderful for when you're eating out in a restaurant. They keep your hands from getting too cold and improve your grip on the glass. Though I also recommend using a straw, especially if you're on an immunosuppressant. 

But to put the paper ones on I still had to lift the cup up. I was looking for some fabric velcro ones that I could just un-do and re-attach once secure. I found this fantastic Etsy shop with hand made cup coozies in all kinds of fun fabrics. Now I have 2 in my purse and 3 for home. 

Ok... this one seems stupid. But I really love fresh ground pepper! I also love my "choose the size of your grind" hand pepper grinder. But that's exactly the kind of motion I'm supposed to avoid with RA. So I found these electric grinders that also have a "choose your grind" setting. I haven't used them yet because each one takes 6 AAA batteries (and who has that many just laying around!?) Next time I hit Costco I'll get a pack. But I'm so excited to have them and can't wait to get back to fresh pepper on my salad. If you don't indulge in this, you're really missing out.

I now own two of these amazing baskets. One of delicates and one for panties and such. No more toting heavy baskets out to my garage. Now I just wheel dirty stuff out and clean stuff back in. 

The biggest modification to my life however hasn't been in what I've bought. Its been an adjustment to how much I do and in letting my husband help me. He does almost all of the driving now. Not that I can't but he doesn't mind and it saves my energy. I tend to wait in the car for super fast errands like hitting the ATM. I let him get me gas when he can. It saves me touching the dirty screen and pump. All these little things can add up to a lot of energy and hand use. He's wonderful and doesn't mind picking up the slack. I do what I can like cleaning the kitchen counters (it doesn't require bending or pulling.) 

It hasn't been easy for me to learn to ask for help or to rely on him for more things. I'm very independent. My Nana tells stories of me being very little and refusing the help of others with a defiant "I can do it myself!" That instinct is still strong. But my husband told me a long time ago that "Just because you CAN do something, doesn't mean you should have to." That has stuck with me. I'm very blessed to have his support and help and now I don't hesitate to ask for it when I need it. 

ENOUGH Lemons Already!!!

I've always really hated that saying "When life gives you lemons make lemonade." How about "When life gives you peanuts, make peanut butter." I've been making lemonade and peanut butter all week. But yesterday a really big challenge came my way. My new job that I've been at barely a month let all the staff know that the agency is closing. They might be bought out by another agency (one I don't care for) or they may just close. I was crushed.

I hadn't even been on my RA medication for 1 week and now I have to job hunt all over again. I know I'll find something else, but it will take every spoon I have and then some. I'm also very sad to have to leave my clients, people I had just started to get to know.

As devastating as all this feels, it's helpful to remember a few important things.

1. It's ok if I don't make much money for a little bit. My husband's a hard worker with a good income. He busts his butt to support us, so that's a bit of pressure off. We won't starve and can pay our mortgage. 
2. Maybe this new job will be an even better fit?
3. The Plaquenil is helping and I'm feeling better than I was even when I was job hunting a month ago (and I'm sleeping much better, which makes a huge difference.)
4. I have love, encouragement and support of family and my husband.
5. I have some very good leads. My supervisor gave me 4 people to contact in my town about a job and I found another promising one on Indeed.com this morning.
6. I've done incredibly challenging things in the past and overcome a lot. I know I will in this case too.
7. I still gained good experience and met new people, even if I wasn't there as long as I'd hoped.
8. It sounds like I'll still have my job for about a month, so I still have a little money coming in. Not a lot, but it's better than nothing.
9. I was worried about working full time AND my body adjusting to the new medication all at the same time. Now I think I'll have a little bit more of a gap to adjust to the medication before working full time hours.
10. I have faith that everything happens for a reason. That's a comforting thought. I do believe there's a plan for all of us and that suffering comes when you try and figure it all out. Sometimes you just need to trust and be willing to do your best (while letting the rest go.) I've absolutely done my best and this situation is no reflection on me personally.

Try and have some faith and trust.

One more thing worth mentioning...

I honestly believe there's no such thing as a "horrible week" or even a "bad day." There are challenging moments and easier ones that all come and go. Even though this week as a whole felt especially challenging, it did have its bright spots.

My mom sent me this double orchid plant after I told her about my RA diagnosis.

It was a bright spot in my week.

A dear friend sent me this notebook with art that she did on the cover.

When I feel loved by those in my life and thought of it can make a world of difference. A text from my son can brighten my moments. Having coffee in the morning with my husband can start my day off right. All these things give me spoons and are so important when feeling overwhelmed by life.