What Comes Next?

Almost a month has gone by since my last post. Many things have changed and much has stayed the same.

I passed my licensure and am now a fully certified Psychotherapist. That's very exciting news. I passed on my first try despite the heat, a mask and a migraine. I felt and still feel a huge tidal wave of pride at that accomplishment. It also marks with a big period an enormous part of my life. Endless schooling, three degrees, 3,000 hours of practice, studying for millions of hours and now a framed certificate on my wall publicly declaring that "I DID IT!" 

What comes next?

That's the part that has changed very little.

I still can't function at all without my Botox shots for migraine every 3 months. Though by the end of month 2 it starts to wear off and then I'm a mess once more. Dizziness increases, pain, sound and light sensitivity, seeing things that aren't there, my memory gets even worse (which is really saying something!) You get the general idea.

Then there's the pain. The pain in my body is constant. I rarely take anything for it because I feel pain is the communicator. Sometimes that communicator is broken (like my migraines). But sometimes it's a valid message. I don't want to shut down that relay with my body just yet. 

But the number one ruler of my life is fatigue. When I become exhausted all systems stop. My memory, focus, ability to talk easily, train of thought, muscle strength, all go out the window. This happens daily, usually around 12-3PM. I rest and sleep and feel better when I get up. If I don't rest and sleep it gets worse till my muscles start to shake and spasm and I get cold sweats. 

When people say to me "Now that you have your license you can start seeing clients again!" I cringe. They have no concept of what goes on in my body. In their defense I also "fake normal" really well. "You can just see a few online" the friendly person might say. But that involves the ability to be there for the person 100% and many hours of record keeping, preparation, etc... I'm not just a face on a monitor. 

Therapy is out. 

So what comes next?

I'm essentially taking some time off to mull that over. I'm vaccinated and enjoying being social a little bit again. I'm looking forward to taking a few small road trips. You know... cutting myself a break!

For the future I'm considering a few ideas. Writing a mental health book is the first thing that comes to mind. Both an interventions book for clinicians and one for consumers. I like the idea of writing because I can do it anytime I feel up to it.

Right now I'm swimming often at my mother's pool. Trying to work out my CPAP machine. Attending appointments at my muscle clinic, my migraine neurologist and my regular doctor. Spending time gardening (when my body allows it), cooking (see previous comment) and hanging out with my ever-fun family.

We'll see what comes next.

Bright Side

I was thinking the other day about all the things I do now that I wouldn't be able to do if I were working full time. I came up with quite a comprehensive list. I found it incredibly helpful for my mental health to do this. I still miss working and all that came with it. The identity, the respect, contributing financially to my family, helping my community in a meaningful way...

It's one thing to have my family tell me how helpful and useful I am even though I can't work right now. But it's completely different to work through those feelings on my own.

Now I have time to:

• Fight for my medical supplies (my wheelchair, CPAP machine, etc.) This always takes a ton of time and was incredibly hard to do while working full time.
• Attend needed medical appointments and therapies.
• Spend more time in nature. 
  
  
  
• Create things and express my creative side. 
  
• Process the loss of my partial mobility. Mentally and emotionally.
• Be there to help my son. 
• Spend time getting to know my mother and who she is right now.
• Investing time and spoons into our home and garden. 
  
• Spend more time with my puppy and enjoy her last days with her. 
  
• Be available 100% for my husband. Hearing about his work and being more a part of his day.
• Being able to invest more time on my body and health. 
  
  
  

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.