How Summer's Going

Summer 2025 is more than half over and it's going very well. The less animal products I eat the better I feel physically. I'm also have a lot less pain, especially at night. This is a huge leap from the person I used to be. Someone who would lay in bed at night and cry from the pain. 

I very quickly went from using a motor cart to shop to not even using my handicapped parking. And this...

I haven't seen the dimple in my "bad leg" in at least six years. It's usually always swollen no matter what I do. But now it's almost as strong as the other one. I've been biking and swimming, so I'm sure that combined with my diet is why.

This is how I feel. Like I'm "almost me again." It's the best feeling in the world.

I've been pushing myself, but paying close attention to my limits. I did a mile and a half walk with my husband yesterday and made 10,000 steps for the first time since I became ill.

Right now I eat a vegetarian diet with minimal dairy. And the dairy I do eat is usually fermented, like yogurt. I use oat milk in my smoothie and just eat a lot of Buddha bowls and Mexican with no cheese. The biggest dairy I eat is eggs, which don't seem to bother me.

I've gone from riding my wheelchair to the pool to swim with my mom to riding my electric bike! And yes, I do peddle. 

I work out with pool noodles and water weights about three days a week.

Another accomplishment this summer, no fear of being in the pool alone.

My mom observed that both of us usually feel our best during the summer. I agree. I think I am the most physically active, despite the horrible heat. I also tend to naturally eat a bit lighter and not quite as much.

I have felt hungry almost every night in bed. But I'm down to 281, which is a big deal for me. I'll be so happy to break through the 280's. What a wonderful summer of success!

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. 

Are you a mini or a maxi?

I've been a massive maximalist most of my life. But deep down inside has always been a minimalist dying to come out.

I'm a maximalist in all ways. Spending, decorating, buying clothes for my dogs, eating, loving people. It's very easy for me to go way over the top in all areas of my life. My husband will ask me if I want something now, or later? Both is always my answer. Did I want to go on a trip for our 30th anniversary or get a nice piece of jewelry? Both of course. Would I like the appetizer or dessert? Uhhhh BOTH!

See the pattern? 

Restraint, budgeting, minimalism, living withing my means, decorating within the boarders of my walls... nope. Big no to all of that.

I'm an expert money spender!

2025 is knocking. It's the perfect time for reflection and change.

1 - I want to be much less of a consumer. Both with my wallet and my mouth.

2- I want to de-clutter my environment. Donations and Ebay selling are the best way to purge.

3- I want to be more on top of my finances. As long as I'm not working (and I don't think that's changing soon) I feel I need to be more responsible about my budget.

4- Be out in nature more. 

5- Be more active with the dogs & take them out with me more. That always takes a ton of spoons, but I feel it is very worth it.

I also want to embrace new ways to self sooth that don't involve hurting myself (by over-eating or by over-spending.)

WHEW! That's a big list. Notice how "weight loss" isn't there?

When I put pressure on myself by turning my focus on that, I fail. I'm tired of failing, so I'm not making it a goal right now. My hope is by trying to do a better job of taking care of myself and simplifying my surroundings, other things will fall into place.

Happy New Year.

I wish nothing but amazing things for us in 2025.