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.

Always Trying Something New

I'm always open to trying new things to help me function better. The best discovery I've made recently is my "Visible" device. I did a lot of research before buying it. I read many reviews and watched videos. You wear it on your upper arm. I call it the "Anti-Fit Bit." The whole point of it is to help you track your efforts and energy during the day so that you don't over-do it. 

Ok, so I am the reigning QUEEN of over-doing it. Seriously. I've sent my body into rhabdo more than once. Which is awful. So when I first saw that there was a device to help me pace myself better I thought it might be a good fit for me. It is.

It monitors my heart beat and heart rate variability. HRV for short. I get notifications if my heart rate stays up high for more than 5 minutes. I can set how long. Then it suggests I take a break from what I'm doing so I don't expend so much energy.

Interestingly enough my heart rate goes sky high every time I shower. I always knew that showering left me tired. Now I know why. 

Here's what the app looks like on my phone. Every morning it takes a measurement of my heart rate and my HRV. Then it gives me a score. The score is called "Morning Stability" and it's a guide for how your energy might be on that day. You can get a 1 to 5. The higher the number, the more energy you have. I'm typically a 3. I've gotten a 4 a few times, but never a 5.

Once a month it asks a series of questions related to your health, what you're able to do and what you can't do. How hard things are for you, that type of information. Then it gives you a "Functional Capacity" score. This number reflects my ability to carry out day-to-day activities. 

A "Healthy normal person" is typically a 6. Here's mine for May. A 3.2

But here's what REALLY gets my heart racing...

Besides wearing my "Visible" device and trying to pace myself better, I also signed us up for Hungry Root. It's a healthy meal plan and food delivery company. They send me a weekly box with ingredients and recipes to make. We've only had it 1 week, but I already love it. 

It means giving up a lot of freedom with my food. The decisions are all made for me. At first I found this a bit scary. But now I like it. I can program it for what kind of food I want, how many meals I want, how much I want to cook and other things. Right now my box is set for gluten free, vegetarian meals. I'm getting some breakfast, lunch and mostly dinner. I just added fruit to my next order as well.

The only down side is the packaging. There is a lot of it. But we're also wasting less food and eating healthier, so it's a trade off.

The last new thing I tried recently is a drug called Naltrexone for pain. It's originally intended to help people stop drinking and using opioid drugs, but they discovered in very small doses it helps block pain reception. 

For me it gave me insomnia at night and knocked me out during the day. It also made me really sweaty and gave me a headache. I gave it two weeks and then stopped. It did help my pain a little, but the side effects were too much. Sleeping 20/24hrs is no good.

I think the next thing we're trying for pain will be Ketamine infusions. I'll keep you posted.

Now for my Hungry Root healthy lunch. No Taco Bell today.

The Chronic Fatigue Sled

I've been in a tough spot the last few weeks both physically and mentally. I've been pushing myself really hard physically to try and have a "normal" life. Cleaning my house to have company over, entertaining my sister and baby nephew, cooking for them, cooking dinner every night, walking the dogs, playing with the dogs, feeding the dogs, holding the dogs, doing laundry, cleaning our bathroom, vacuuming, corresponding with friends and family. All of this has led to a series of crashes where I can't seem to sleep at night or get out of bed during the day.

I'm also trying out a new pain medication that could be giving me insomnia and more fatigue. I'm not sure since I always have both pretty consistently. 

Me on an Icelandic Glacier 11 years ago when I was healthy

This morning when I just couldn't get up, even though I was mentally excited to go swimming with my mom and spend the afternoon with her, I had a thought. The weight on my body dragging me into bed feels very physical to me. The way I push myself every day and how hard I push feels incredibly physical and mental. Beyond what healthy people experience.

I realized that I felt like one of those arctic sled dogs. Alone and hooked up to a sled weighed down with boulders. On a regular day I push and push through the snow trying to make progress on a steep mountain. So steep I can't even see the top of it. 

Then I just can't go on anymore and I collapse. Sliding back down the trail. Letting the sled pull me down.

When I've recovered enough I start pushing again. Running up the snow, pulling the sled. The weight of the sled may change depending on what's going on with my body. The only thing I know for sure is that I have this urge to keep pulling it up and that back sliding is un-avoidable. 

Days like today feel like that. Like the weight of the sled was just too much and it pulled me back into bed as time slid past me. Well into the late afternoon I was finally able to get up. I feel the pull of needing to accomplish things. Anything. And I push again.

I think what I need to learn to do is pull a little and rest. Pull a little and rest. I need to implement my vacation rules. No more than one big thing per day. 

And if there are days where I just stay in bed and rest... that's ok to.