slowly learning

I'm 53 and still slowly learning what my body needs. Especially since becoming severely disabled. That was (of course) a game changer. I've always been the person in a group to take care of everyone else. The person who thought of everything and planned it all. The first to arrive and the last to leave. Well no longer. Now you can bring your own Excedrin because I travel light. 

Out with good friends.

I feel very proud of myself. We had company last weekend and I really listened to my body and what I needed. I let my husband plan everything start to finish. Some examples of changes I made are:

• I did Karaoke the first night. It was an energy stretch, but I rested before and ate healthy right before.
• I rested the next day at my usual time. I also had coconut water, a V8 and lots of regular water. Again, I chose healthy whole foods to eat.
• The third day I went to the gym and swam with my mom. Just went about my business while my husband hung out with our friends.

For me the gym has become non-negotiable. Just like a doctor's appointment. I feel so much stronger and healthier in general. My mom does too.

Day two. Out for veggie sushi with friends post-nap.

I'm also learning I have a lot less pain when I avoid sugar. Easier said than done.

If I stick with whole foods I feel my best.

Using my tools and researching new ones has also been vital. For example. I've been having killer heel and achilles pain for a while now. All the exercises to stretch it out were just making it worse. That's because it's not just achilles tendonitis. It's Insertional Achilles Tendinopathy. What a shocker. One of the causes is "muscle weakness" in the foot. Stretching will just make it worse and more irritated. I learned instead what I need is shoes that elevate my heel and point my toes down.

My first time at Karaoke. It was such fun.

I only have one pair of shoes like that. Flip flops that I nicked off my mom. But I ordered some inserts that I can put in any shoe I like. That should be really helpful. I'll also keep off it in the pool. No more stretching that foot or kicking off the side when I swim.

This is all literally the opposite of what my muscular neurologist told me to do. Sometimes the doctor doesn't know best. Right away I was feeling relief when I put on those flip flops. Now I need to break my habit of walking barefoot around the house. Dang.

Point is, I'm learning to trust my intuition. My inner voice. Myself. Learning from my mistakes and caring for me. Putting myself first over the discomfort or inconvenience of others. And that's no minor thing. 

Making an Effort

I'm realizing there's a very good reason why most disabled and chronically ill people complain of loneliness. It's because friends don't like to be the one to make plans. I'm not sure how that works if EVERYONE is like that. Actually I am sure. It doesn't. Friends fall by the wayside until they vanish completely.

My husband is my best friend.

Of course there are the rare exceptions, but those tend to be family members. It's the very rare friend who will be the one to make the effort to keep in touch and suggest plans.

My mom is my best friend

I have also come to terms with being that person with my friends. If I want to see them EVER than I have to be the one to text, call, suggest SPECIFIC plans... (that's the key, they have to be specific.) And there are a lot of people in my life whose company I enjoy enough to make that effort. And those who I don't.

The person I call my best friend is one of those people who would make an effort even if I was ill and couldn't do it myself. That's one of the reasons I say she's my "best friend." She's reliable, funny, fun to be with, smart, a feminist, doesn't hound or smother me, makes plans and asks me to join her. All qualities I admire. 

My best friend and my mom helped throw me the best birthday party ever.

She's also anxious as hell. Complicated. A contradiction. Traumatized and stubborn. Not all bad qualities. I think of it like a dessert. If it was too sweet I couldn't have much of it. People need balance. 

I also admire how important her heritage is to her. She's half Samoan and half Italian. Funnily enough her Samoan half seems more important to her. But I get it. I value my Italian heritage even if it is much less than my English or Irish genes.

I find now that I have my sisters in my life and their very large families it leaves less time to spend with my friends. But I will always make time for those who enrich my life.

Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The intensity of it will vary, but not the pain itself. So I actually forget that most people don't have ANY pain unless they hurt themselves.

However, I pretend to be "normal" all of the time. A term the neurodivergent community has coined as "masking." I am a huge masker. This is why communication is so key.

Beautiful coffee from my mama.

Mindfulness activities like a body scan through my day are massively helpful. I tend to dissociate from my body. Anyone would living with constant pain. But that's not actually useful or helpful. I also have a severely delayed pain response. Typically I can do a hard activity like intense gardening and then not feel it or notice till about 12 hours later. This makes it a big challenge to know my limit.

Mental energy is different for me. I can feel my brain battery actively going down. Draining minute by minute. So mental tasks can become difficult for me quickly. 

Since all of these things are hard for me to realize, I know that people around me, even those who are mad about me, won't know how I'm feeling unless I tell them.

I am still disabled. My dis-ease impacts my daily life and ability to function in a pretty major way. I have to monitor and pace myself in ways no healthy person does. I also struggle with constant pain in levels that would send your average white man into screaming fits on the floor. 

The receptionist at my pain clinic asked me over the phone yesterday what my pain was at between 1-10. It was a good day so I answered honestly about a 6. Reminder, that was a GOOD DAY. I'd say I average about a 7. I message my doctor and make an appointment if it's a 10. I've never been to the ER for pain.

I tend to share with my mother much more than my husband. He's an abilist who tends to be a bit dismissive. I think that's a reflex most people have. To instantly compare their experience with what they're hearing. I'm guilty of it too. It builds relatability. And frankly, he's not the best listener at times.

So it becomes very important for me to clearly communicate what's going on in my body frequently. Not ad nauseum, but frequently enough to get the point across. I'M DISABLED! I can't/shouldn't do that. I need help. I'm exhausted. I've hit my limit. I need a nap. My pain is really bad right now. Etc...

Not how my nails looked a month ago.

I've started having problems with my fingernails. One of them is lifting off the nail bed. All of them have become thin and brittle, splitting painfully and breaking even though I keep them short. Copilot told me that it is likely from my Mitochondrial Myopathy and could also be an Iron deficiency. I showed my husband and talked about it with him. Something I likely wouldn't have done in the past.

I also have a hemorrhoid right now due to my chronic constipation (a side effect from my pain medication.) Sorry for the TMI, but it's health related. I've never had one before, despite my fears. I was shocked I didn't have one much sooner to be honest. When I do finally go I'm like an adult rabbit. Hahahah.

And let's not even get into the massive stye I just struggled with. 

Point is there's always something going on with my body. Sometimes you can see it. Often you cannot. That's why communication from me is key if I'm to have the real kind of relationships that make life so fantastic.

A thoughtful gift from a good friend makes my day.

Who Am I?

How would you describe yourself to someone who has never met you before? What defines you? Makes you... you?

I would say I am a woman who enjoys art and other creative people. I adore my two miniature pinschers and my Autistic son. I've been married for almost 30 years to my best friend. I am a licensed psychotherapist, but I haven't been working for the last five years because of my health. I struggle with serious chronic illnesses, mitochondrial disease and migraines. I am tall with very short salt and pepper hair. I am average size for American women. I wear red glasses (sometimes) and have blue eyes. I am very white. 

I love conversation over high tea, any music but acid jazz and generous people. I have a love and respect for Polynesian culture and that's reflected in my eclectic home. My husband and myself are potters, so yes. I would call myself an artist. I also enjoy photography in a very beginner way.

I love food and travel. I could live in the ocean, especially tropical waters. I'm a water person first then a forest/nature lover. I adore sharks, mermaids, rays, whales, otters and most things that live in the ocean.

I'm a Capricorn and have lived in the same home for 22 years. I have a wanderlust spirit that conflicts with my home-body. I'm also a maximalist with an un-voiced minimalist living inside. I'm a social justice warrior, a liberal, pro-choice and a feminist. Scratch that. A feminist first. 

Oh yes! And I'm 51 years old.

And you?

What a Difference!

 A few days ago we had our holiday open house. The last one we did in 2021, two years ago. Here's me in 2023 (left) and 2021...

Even though I look happy in both and am smiling in both, I look a little weary and fatigued in the right one. And it's not just the natural hair. Although after seeing these picture I don't think I'll ever have anything other than black hair again.

I'm close to the same weight. My makeup is similar. But as my mom likes to say "You look about 20 years younger!" I feel about 30 years younger.

I'm savoring this Christmas season. All the bustle and time spent with family and friends. I've also been very creative this season. Doing pottery, making crafts to decorate my house, drawing on wrapped gifts. Even though we've been incredibly busy I've made time to rest too.

My husband even went with me to Yoga yesterday. He said he can see why it's so helpful for me.

What a difference two years, one year, five months, one day makes. I'm so happy to have my time back.

Social Diva

One of the things I hugely missed during the years of my illness was having a social life. I was able to have just enough, little tastes here and there, to make me wistful for my old days full of get-togethers. Mostly women friends, laughing, sharing our thoughts. I think friendships make us better. All relationships, but friendships especially. Friends broaden our ways of thinking and build our confidence.

Lately I have had a whirlwind of new and wonderful friendships. I met a woman through my husband's work who is delightful. We are very close to the same age and although we don't have a lot in common on the surface, we do underneath. I knew from the moment I met her that we are soul sisters. I enjoy her company tremendously and am grateful each time we are together that I have the energy for her friendship.

Recently we met her partner and to my great joy my husband got along swimmingly with him. This is our second couple friendship in less than a month. Where we love both people. Wow! That's incredibly rare. I feel very lucky.

Max got to come too!

This past weekend I was busy three days in a row. Something that would have been un-thinkable when I was ill. It felt rich. Like a bath in warm buttermilk, I felt enveloped and fully alive basking in the conversation and friendship of others. We are social creatures and I'm just beginning to realize how devastatingly isolating illness is.

Our California sunset. So beautiful.

 

Surviving or Thriving

My husband and I have been checking in with each other asking if we are "surviving or thriving" on any given day. Recently I have learned that I answer "thriving" on days where I have been exceptionally social. This is shocking news to me.

I've always consider myself an introvert and that being with others drains me instead of charges my batteries (gives me spoons, fills my tank, gives me energy...) But what if I'm wrong? What if I actually thrive being with other people more often than I know?

Honestly I think like most things it depends on the people. If I'm with high energy people I thrive. If I'm with low energy people I might drain more quickly. Being empathetic I'm pretty sure this is the case. I mirror the energy of the people I'm with.

Recently I was able to spend time with some very high energy friends and I felt overwhelmed with joy. I savored every second of it.

I also got my nose re-pierced! So that's big news.