In a Different Way

I was traveling to my mother's house the other day in my wheelchair when I had a lovely realization. I always think of myself as "no longer able to drive." But that's not quite true. I don't drive a car, but I drive my wheelchair regularly. Many of the same skills used driving a car are implemented in driving a wheelchair. So I do still drive! 

WATCH ME DRIVE!

This new thought soon spread to other "I can't" areas in my life.

Thought: "I no longer work."

Reality: I don't earn an income for my work right now, but I still do plenty of work. 

Thought: "I can't travel anymore."

Reality: I can travel. I travel shorter distances now.

Thought: "I'll never be able to have more dogs because I can't take care of them."

Reality: We can have more dogs (in the future) and I'll just take care of them in different ways and ask for help in ways that I can't.

It may seem insanely obvious, but this was a big revelation for me. Now I'm seeing every "can't" in my life as "I CAN! JUST IN A DIFFERENT WAY." That's huge for me and feels wonderful.

Giving Myself Pleasure

The big goal for myself this year is to spend more time in my own company. To explore myself and my personal interests now that I can't hold a traditional job. A job that used to fill 90% of my life, mind and time. 

I have started journaling again. Something I find very helpful for sorting out my thoughts and feelings. Writing with a pen also stimulates my mind in a very different way then blogging. To me my blogs are more of a guidebook that I can easily look back on for reference. My journal however is completely personal and private.

I'm once again growing out into and finding out what gives me pleasure. Here's just a sampling...

I used to look at taking care of myself as something I must do and that I had no choice in. This year I have changed that thinking to be something I'm fortunate to be able to do. I'm lucky to have the time and resources to take very good care of myself. So when I actively choose not to (by not doing my stretches or eating something that's not a good choice for my body) it's an insult to myself. It's my privilege to care for myself, not my obligation. I find that mindset much more helpful.

It helps me mentally to have my home reflect our families playful side. We have a lot of interesting collections and it's fun to create little curio displays around the house. I love having a playful home.

It's not just the visual side of my home that's important to me, but the scent as well. Fresh coffee, flowers, scented candles, a fresh fire log burning. All combine to make my home inviting, warm and cozy. And since this is where we all spend the great majority of our time since last year, that matters to me.

I could fill volumes with what I have learned from sharing my life with dogs. My sweet puppy is a "super senior" now in the twilight years of her life. I treat each moment I still get to spend with her as a great gift. Just watching her gives me endless pleasure. I'm thankful to be able to have had the opportunity to give her (and her sister's who went before her) such a good life.

I love to try new things, especially when it comes to decorating our teeny tiny home. Right now my work in progress is turning one side of our hallway into a giant wall of mirrors. I was gifted two unique, beautiful mirrors by my mother and three more from my sister-in-law. It has been a very fun project that's not over yet.

I love jewelry. It is one of the greatest passions in my life. I used to wish Elizabeth Taylor was my mother just so I could have her jewelry collection. Her daughter probably didn't like jewelry because that's how those things usually work. Just like my mother is not into jewelry at all. Go figure.

It's more than jewelry to me though. It's a story. So vintage jewelry holds a special place in my heart. It's like a sliver of time with an unknown history that gets to belong to you. I imagine the people who owned it before me. Their lives and their stories.

Stories have always given me pleasure. Even the hard ones, which is one of the reasons I loved my profession so much. But now I'm focusing on my own story and my own meaning in life.

My Favorite Things

My wheelchair was just repaired (for the millionth time) and I enjoyed taking her out to the store on my own today. My independence is crucial for me, even though what that looks like changes over time. Dory and I had a wonderful time just zipping to the store and walking my dog. 

Most of my favorite activities are things I do independently. Tending to my house plants, shopping (online too!), photography and painting just to name a few. 

Plant keeping

My puppy

Taking pictures

Eating is a big hobby of mine and that's more fun with someone I love. I also adore chatting over a cup of coffee, especially in the morning. And my top favorite thing is watching a relaxing TV show or movie. Especially while getting foot rubs, or having a heating pad tucked behind my neck by someone I love. 

My Migraine

No... "Migraine" is much too small a word for what daemon has wrecked my life. The clinical term might be "migraine" but it's more like an evil possession.

Some of my current diagnosis

My muscle disease affects my body, but the migraines rob me of much more. Most days I feel like a shell... a ghost of my former self. It robs me of my memory, my attention, my eyes focusing, trusting what I'm seeing. It causes me stabbing pain, electric shocks, ear ringing, momentary hearing loss, throbbing pain, visual hallucinations and a general feeling of being really drunk or really high without ingesting anything.

Personally I think all of this is a side effect of my brain surgery on September 27th, 2018 (28 months ago). I read that nerve re-growth and associated issues can take around five years to heal. I would have proceeded with surgery anyway, but I wish someone would have gone over the side effects and talked to me about migraines.

My entire life I've infrequently had very minor headaches. I'd pop a few Excedrine and off it went. I knew people who struggled with migraines, but I thought it was just a super bad headache that maybe caused some nausea, light, sound and scent sensitivity and would last about 24hours. At best I feel like I knew a little bit more than the average person.

But when my migraine symptoms began it wasn't with any of that. I'd have a little headache behind my forehead. Just a tiny one. My symptoms started with feeling very dizzy. I felt like I was hearing myself talking from another room when I'd speak and hearing others talk I felt very far away. That's a big problem for a therapist. I was scared and had no idea what was going on. 

I quickly became too dizzy to safely drive. My husband began taking me to work. After that I could "hang in there" till lunch time, but the symptoms just got worse. With it came the crushing fatigue. I wasn't just tired, I was completely exhausted. It felt a little bit like a horrible hangover.

The headaches began getting a bit worse, but the other symptoms increased quickly. I started to have trouble focusing, both mentally and physically. My eyes would go blurry, like I couldn't physically focus. Of course I still had my muscle issues as well. The worse my migraine symptoms became the weaker my other muscles were. Soon work was ordering me a text to type program for my files as I lacked the physical stamina to type for any length of time. But nothing helped and I became too compromised to work at all.

I had no idea what was going on. I talked to my primary care doctor, crying in his office. He sent me to a neurologist and an ear, nose throat doctor (otolaryngologist). Both of them diagnosed me with migraines right away. I kept arguing that it couldn't be migraines as my headaches "weren't that bad!" I had no idea that migraines take many shapes for different people with an enormous list of effects. I sure know that now!

Every... single... day I struggle with nightmarish symptoms.

I can't work.

Some days I can't even leave my house.

I'm proud of myself for getting out of bed, dressing and showering.

A big part of my life has been reduced to that of a small child.

I have a lot of feelings about that.

Grief

Loss

Anger

Sadness

Fear

My current treatment regimen involves:

• 32 Botox injections around my head and neck every three months.
• Monthly Emgality injection.
• A cocktail of Procholorperazine 5mg (for dizziness and nausea), Naratriptan 2.5mg and 2 Acetamenophin 500mg taken together as needed (but no more than three times a week).

These all help a little.

I'm still not myself though. 

Still unable to do very much.

The worse my migraines are the more exhausted I am and the weaker. It's a nasty cycle. I'm hoping something will click soon to cause a massive improvement or they will heal and go away completely. That would be wonderful!

Until then I sometimes struggle to feel my worth. It takes a lot of intention and attention to really live in the moment. Not let each one slide by in a fog. I do have a beautiful life and I don't want to miss out on any of it.

Safety First

 

My motto for 2021 is going to be "SAFETY FIRST." And I'm going to start by postponing my licensure exam. My Mom and I had a good talk yesterday and she pointed out that with the COVID mutation in California and me being so high risk, it might be wiser to postpone. I completely agree.

Aside from risking death by taking a four hour test in a tiny, window-less room, my migraines have been awful. I'm not talking about head pain, although that happens sometimes too. I'm talking about being very dizzy, exhausted (not just fatigued) and my eyes being unable to focus. 

Luckily I have my every three month appointment with my migraine neurologist this Friday. But I'd like to get that more under control (if I can) before taking my big test. 

So this year I will go slow (I tend to be a big rusher) and take my safety seriously. I will advocate for myself and share more openly what's going on with my body. People only know what you tell them and I tend to not tell people much. Even those closest to me. 

I will also let others help keep me safe. That's a big one! 

Safety first.

Everything else second.

Road Blocks

There are certain events in my life that feel like road blocks. Success will lead to one path and failure will lead in another direction entirely. I have such a road block in 16 days. My licensure examination. The culmination of my entire education and training will lead up to my success or failure at obtaining a piece of paper. But that piece of paper means a lot to me.

Every therapist I know has failed their licensure at least once. Most up to three times. But I have high expectations for myself. I don't want to keep shelling out $100 and putting my health at risk each time I go take that test. I want to be over and done with that part of my life for good. I hate loose threads.

So if I don't pass, I can pay money, wait three months and take it again. That's one path. Or I can decide not to take it. I wouldn't do that, but it is an option. If I do pass I'll be officially, legally licensed. FINALLY! I'm not planning on practicing clinically any time soon, but mentally and for my future it would mean a lot to me.

It would give me closure. Give me confidence. Open up more doors for me in the future and for money making opportunities. Make me feel like a success. Yes, it's important.

My world right now revolved around those 16 days.

Emotional Intelligence

The most important skill that I have learned is how to not let other's emotions and my own emotions impact me. Even now it is still challenging to remember to use my techniques to not let strong emotions affect me. But my ability is there and more often than not I can manage it.

What's the secret?

For me it goes like this...

1) NOTICE. I can't change anything I don't notice. I notice my own strong negative feeling and how it's affecting me physically. Or I notice that someone close to me is having a strong emotion and how it's making me feel physically. Step 1 glides right into step 2.

2) FEEL it in my body. Does my chest feel tight? Has my breathing sped up? Are my shoulders rising?

3) CHANGE. I slow my breathing intentionally or take a deep breath if my breathing stopped. If the negative emotion is external then typically the person will also take a deep breath automatically. I relax my shoulders and check my posture. 

4) VISUALIZE. If the emotion is particularly strong, it is helpful for me to take a moment for some internal visualization. I picture the emotion as water washing over me, but not through me. Or I'm sitting on a riverbank watching the emotion go by, floating on a leaf. Sometimes I picture my emotion is a stone that I'm holding in my hand. This helps me examine it more closely. Why am I feeling this? What can I do to resolve it?

For example... Something happens to make me feel angry.

1) I notice that I'm feeling angry.

2) I feel the anger as a knot in my stomach and see that my fists are clinched.

3) I actively unclinch my fists and start deep belly breathing.

4) I hold the anger as a fire ball in my mind and examine it. What just happened? If my anger is valid, I imagine I let it go like a dragonfly into the universe. If not I look within to see why what just happened made me feel so angry. Am I instead feeling afraid, vulnerable? Anger is often a shield for other emotions.

I can easily go through life being continuously reactionary. It's not at all hard to do. I'm very empathic and pick up on other's emotions easily. Being able to filter out what warrants a reaction and what is just better to let pass is the most important skill I've learned. It helps me feel calm, centered and saves my energy for much more important things like love.