What Matters Most

Time is a finite resource. It's vital to make the most of it. And I don't mean I should be rushing to get as much done as possible. But I can use some help prioritizing what is most important in my life and spending my time there.

I'm feeling medical burnout. Even though I have an EEG scheduled for tomorrow to check into the whole "You're having silent seizures" news. This year I really don't want to prioritize medical care. Endless appointments where everyone says the same thing and it doesn't help much. 

I'm also feeling done with spending time with certain people. Like my in-laws. As much as I love them, I just don't want to spend time with them. I don't particularly enjoy their company and they don't have much to add to my life. In fact, they feel like work.

The only person who is work who gets to stay in my life is my son. That's it. I have no time or energy for anyone extra.

I spent a lot of time with friends this year. More than I can remember for ages. It was helpful to weed out who adds to my life and who doesn't. Everyone has hard times and good. I don't expect rainbows and sunshine constantly. But I want an overall positive reciprocal relationship with my friends.

So with all of this in mind. Here are my priorities for how to spend my time this year.

2026

1. Taking care of myself. Mentally and physically. Yoga, swimming, dancing, moving, sleeping. Doing what I need to do to feel good and be happy with myself.
   
   
2. Spending time with my mom, my dogs and my husband. Enjoying them and just living life together.
   
   
3. ART. Being committed to spending time on my art, whatever that looks like. Clay, doodles, painting, henna, crafting, drawing...
   
   
4. Live my values and drop people who don't share them. Animal welfare, feminist issues, slow fashion, commitment to people I love. All of these things matter a lot to me. I don't have time for people who live their lives blindly.
   
   

My mother just threw me the absolute best 53rd birthday party. It was women only and filled with such positive energy. I could tell we were all very thirsty for such an occasion. It was also an excellent way to start off a fresh new year. Showing me the potential of all of the women in my life and how powerful we all are together.

More of that this year please!

TWO CAKES!!!

What 53 looks like

2025 Things That Help Me

Anything in the water is wonderful!

I've lived with chronic illness and disability now for a while. Through the years I've tried many tools to help me with my fatigue and muscle weakness. Many modifications as well. Here are some things I have learned that have been helpful to me.

1. Give in to sleep. I used to fight my afternoon fatigue like my life depended on it. I felt I was "weak" for giving in and resting. No more. Unless it's very important (I'm on a special vacation that I really don't want to miss a moment of), I rest every day. For as long as I need. Typically between 2-3 hours in the afternoon. I always feel better for it.

2. Use a stick. Even if I think I don't need it. I'm very prone to tripping and my stick has saved my ass more than once. 

3. Don't miss a dose. If I miss a dose of my medications I'm in hell. It's a very big deal with incredibly painful consequences. Now I let everyone I'm with know that and I set alarms. I never assume I'll just remember. Especially if my routine has changed and I'm out for the day.

4. I don't sweat "accomplishments." I used to feel huge pressure to "accomplish" as much as possible. To contribute something back to everyone and society. I let that shit go. Now I just do what I can.

5. Don't do standing what you can do sitting. Great advice. I try to remember this one as much as possible. Adding a stool to my bathroom was a game changer. I have low outlets there and a makeup mirror. Now I do all my bathroom grooming sitting down. A huge spoon saver.

6. Don't do it alone. I never go to any appointment alone if I can help it. I will always miss things that were said and the doctor's notes aren't always accurate either. But having my husband or my mom with me can not only help me remember what was said, but they can help advocate for me too if needed. Or help me remember things I was going to ask about (if I didn't write it down ahead of time.)

7. Keep good records. Keeping a list of all my doctors, their contact information and a list of my medication has been useful more than once. If I have questions going into an appointment I also try and send them ahead of time and bring it written down with me. I hang on to "after visit summary" sheets if it was an important appointment, if they gave me a referral or if it have medication changes on it that I need to remember.

8. Say "No." I'm still working on this one. I've gotten better about turning down things when I'm too tired, but I still can feel like a "flake" if it's too last minute. That also goes for modifying what I'm doing as I'm doing it. Leaving early, cutting outings short, etc...

9. Keeping things easy in the kitchen. Buying things pre-chopped (or getting my husband to do that part for me), having a food routine and having groceries delivered have all been helpful "tweaks" to how I used to do things in the kitchen. Also, using a stool when I cook is very helpful. Again... see #5.

10. Not putting pressure on myself. Period. This goes for sex, grooming, accomplishments, sleep, parenting... I tend to be an organized perfectionist, but that doesn't mesh well with the life of a chronic illness spoonie. My illness takes precedent and everything else comes second. It is the biggest part of me and demands to be accommodated. I try to keep that in mind of give myself grace.

Checking In With Myself

2025 Has been as difficult for me as 2020 emotionally. This time in 2020 the COVID pandemic was really serious. Things were shutting down and people were told to stay at home unless you really had to go out. Now in 2025 everything is a big scary mess politically.

Undocumented people are hiding out while ICE is on the hunt to deport them. Or worse, hold them in Guantanamo prison. Women, people of color, disabled people, LGBT people are all targets by politicians. Thousands and thousands of important government workers have lost their jobs because of the whim of mad men with power. Much needed services are being cut right and left. 

I feel anxious and depressed. I haven't been sleeping well and I feel exhausted pretty constantly.

Personally these changes are affecting me very little. Like the lock down of 2020. But since I'm a caring person and I see the impact it has on people I love (and people I don't know,) it is affecting me in a major way.

I have to remind myself of all the good things there are constantly. Like...

• My family
• My puppies
• The support group I just started for women
• My beautiful house
• My many friends
• My lovely town
• Nature
• That I can walk a block without my chair still
• Art and cultural experiences still happening
• Good TV & movies
• My soft bed to rest on any time I need it (which is often)
• Pottery

It's already very much springtime here. That also helps me focus on good things. It's a "hopeful" time in the season wheel. 

Changes

 One year ago...

• I only had one dog
• I loved all plants and gardening constantly
• I wasn't that great at ceramics
• I used a wheelchair
• I had no energy
• I slept a ton every single day

But in 2024

• I'm for sure over gardening outside
• I paired down my houseplant collection
• I often go a whole day without a nap
• I can do many many things in one day
• I walk my TWO DOGS on my own two feet frequently
• I'm getting better at ceramics
• I'm enjoying my hobbies now that I have more energy

I still enjoy a garden. Just not really the "doing" part. This year I went with flowers vs food. I enjoy watching the nature. Our bees and butterflies are very happy.

I'm Not That Person... Yet

In my dream life... 

I'm up with the sun at 6AM. I start the day with a protein smoothie (not a giant mug of coffee). I pull on my workout clothes, kiss my dogs and head to the gym. After an hour of yoga or swimming I come home, shower and dress for the day. It's now around 9AM. I take my puppies out for a walk or adventure in town. They come home pooped and we're all ready for some food. I have a healthy little cup of yogurt, blueberries and gluten free granola (or some hot oatmeal). 

It's now around 10:30. Time for some art! I work on a painting, or drawing, or just play around. Maybe I even have a pottery studio? I throw on my apron and do some sculpting. Or perhaps photography? Art till 12 my dear.

I break for a small lunch with my honey. Maybe a chicken salad? Light, healthy and filling. Protein to keep me going through the day. In this dream life I have no cravings and am satisfied with what I have. 

Look at everything I've accomplished and it's only 1PM!

Now I work from 1-3PM. Maybe it's writing a book, paperwork for my support groups, volunteer work or just reading a good book.

3-4 House time. I work on a house project, garden, meal prep, do laundry or clean something up. 

It's already 4PM and now it's time to walk the dogs again. After another adventure they're ready for their dinner. Lucky dogs. I play with them after dinner. 

5-6 I'm on my computer. Blogging, e-mailing friends, posting pictures of my art. Whatever I choose.

6 We start making dinner together while talking about our busy day. We're both tired, but happy.

7-9 TV while getting my feet rubbed and petting the dogs. I'm sandwiched between them loving life.

9 is bedtime. I'm exhausted after such a busy day.

Although this isn't my life yet, it's pretty close. I still rest most days in the middle of the day. Like 3-5PM if I do. I also tend to sleep in almost every morning. Some mornings I even sleep till 10AM. I can't tell you the last time I was up at 6AM.

I haven't been back to my gym in two weeks. Something I want to remedy. A long time to go without vigorous exercise or yoga. I'd like to be more consistent.

Life happens. Things get in the way. I want to learn to pivot better and stick with what really matters to me. Art, health and happiness.

Adventure List

Now that I have more energy and my mobility back I have a list of things I would like to do. 

• Go Roller Skating
• Camping
• Ocean Swimming
• Snorkeling
• Running on the Beach
• Walk Barefoot Through a Meadow
• Collect Seashells
• Hike Through the Woods
• Go to a Botanical Garden
• Travel More
• Become Proficient at Yoga
• Dance with Friends (doesn't have to be in public)
• Ride a Bike or Trike
• Put My Hands in a Waterfall
• Create More Art