"I Don't Do ENOUGH!"

I tell myself lies.

I've always been a very busy person. Handy with my house, working, making money, enjoying others and volunteering in my community. Not to mention supporting family and friends. All of that changed dramatically when I became ill. It's something I still struggle with. That feeling of "I don't do enough." Or "I can still do that." Both lies I tell myself.

Thank goodness both my mother and my husband disagree with that statement. In fact they remind me to pull back when I need to. Which is often.

Right now we're having our bathroom remodeled and it has killed me not to do any of it myself. I did it in the past and I remember myself being very physical. But that isn't my truth right now. Now I need to conserve my energy. Now if I did something like paint a door I would be in incredible pain for days. In fact the very last time I painted in 2017 I was in incredibly pain. Looking back I think that was the very start of my issues.

My mom helps with my dogs ALL the time.

I remember being a bit dizzy on the ladder and my hands cramping so bad. Neither had happened before. At the time, both my husband and myself chalked it up to "getting older." I don't think that was the issue.

Now I don't work in an office and I don't volunteer in my community. Most days I feel like all I can do is prepare food, keep myself clean and do some small chores around the house. Some days I feel ok, other days I feel awful. I never, ever feel "good." Just levels of bad. 

So the lie that I tell myself that I "Don't do enough" couldn't be more wrong. I push myself every single day. I could very easily just not get out of bed. But I have relationships, help friends, get out in my community, walk my dogs (when I can) and try to take care of myself and those I love. 

I'm doing plenty.

Getting my eyes checked the other day.

Medical appointments keep me pretty busy.

Covid Three Years Later

My husband and I attended a live show yesterday. It was my first one indoors since COVID began three years ago. Officially COVID was declared a pandemic in March, 2020. But it began much earlier than that and was already thriving in many countries this time three years ago.

Fast forward to now. There have been three immunizations for three different mutations. We keep having new mutations however because of the lack of people willing to be immunized. Of course I have had all three the second that I could. I've also never contracted COVID (that I know of. I never tested positive.)

COVID is still very much alive and well but most of the "civilized" world has decided it is not. People are tired of wearing masks everywhere and tired of being told what to do. So everyone has just mutually agreed that it's not a threat anymore. Even though it is. 

The issue with that "solution" that I have is that society has then silently agreed to:

1) Keep mutating COVID into new forms requiring new vaccinations.

2) They are ok with old people dying horrible deaths (as the most at-risk population.)

3) They are ok with babies and young people dying horrible deaths.

4) They are ok with chronically ill people dying horrible deaths.

Yeah... I'm not ok with any of that.

Especially ME dying a horrible death (or anyone I love for that matter.)

There are millions of people with compromised immune systems and compromised lungs out there. Myself included. That's why when we went to the show yesterday both my husband and myself "masked up." And you know what? I wasn't at all surprised that we were in the vast minority who did so. I saw maybe 10 people out of the thousands that attended the packed show.

This included my husband's family. None of them wore a mask. 

I think that people believe vaccines make them "safe." Like a condom protects you from a pregnancy. It's about the same percentage I believe. A bit of "Welllll... it helps and it's better than nothing, but don't be too shocked if it fails." The "rubber vaccine" should be its new name. Hah!

That's the last big indoor event I'm attending for a while. Although I enjoyed it, it did make me nervous. I'll continue to vacillate between "I'm not doing anything indoors ever!" And "I have to just keep living my life." It's a very interesting time to be in. 

Finding My Way

 

At 48 years old I feel like I'm finally finding my way. The way to really care for myself. With the same deep passion that I care for my family that I love so much.

CARE is such a lovely word. I sign off all my correspondence with "Take Care." I say that because it's important to me that everyone takes care of themselves. It is true what they say that you can't take care of anyone else if you don't take care of yourself first. Although I believe that you CAN take care of others, it's just not as healthy for you or the people you love. Putting yourself first is actually an act of love for others. This is something I'm just coming to realize.

Showing I care about myself through food choices.

I have always been a giver to others. Not materialistically, but emotionally and with my time and energy. As I aged I learned that it's important to say "no" to some people and some obligations. I thought that was all I needed to be mentally and physically healthy. Well, that and a Starbucks with a pedicure once in a while.

The older I get (and wiser I hope) the more I realize there's much much more to caring for yourself than sweet coffee and paying people to rub your feet. There's...

• Thoughts about myself, my body and my actions.
• Self talk. Am I being kind to myself?
• What I am choosing to put in and on my body.
• Am I committing self harm with my eating and lifestyle choices?
• How I spend my time.
• Am I connecting with people who make me more?
• My goals and dreams for myself.

Each of these can be a gateway to either self care or self harm. In the past, I don't think I was always choosing the CARE way. 

Some things I am committed to working on and changing are...

• Going down to a healthier weight for my body.
• Moving my body more through stretching, swimming and using my stationary bike pedals.
• Eating "good for me" foods that I would have skipped over in the past for tastier options.
• Ditching the chemicals on my body (hair dye, makeup, deodorant.)
• Setting new goals for myself.
• Exploring my new identity as a disabled person unable to work.
• Playing with my creative side.
• Relishing time in nature.

Caring for myself more may mean caring about other things less. Things like youth culture, other people's opinion, things I cannot control, other people's choices... Because caring to me is also really all about choices. Picking and choosing what I do, what I say, who I spend time with, how I feed myself. It's all one small choice at a time. 

How I imaging me and my friends in 20 more years.

Life is very short and I want to make sure I enjoy my ride as much as I can. That means being in the best health possible, as strong as possible (both mentally and physically) and not wasting time on things that don't matter. It's up to me what kind of life I create for myself. And I find it worth the work.

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.

Important Anniversary

Today marks one full year since I left my job. No... left my career. A career I loved and worked hard to achieve for 10 years. 

When I left I thought it would just be for three months. I thought I could "recover" enough to come back "stronger than ever." Our ableist culture told me this was something I could "fight and win!" I mean... it's not like I had Cancer. Right?

No... not Cancer. What I did have was a serious muscle disease that robs my body of processing energy correctly. What I also had/have is crippling migraines that left me unable to work. They cause pain, blur my vision, make time jump, can make people look like flat 2-D cartoons, give me severe dizziness, make me feel like I'm falling (you know that jump scare feeling when you're almost asleep? It's like that). They cause exhaustion (on top of my energy issues that I already have), make my muscles even worse and cause short term memory problems (on top of the memory problems I already have from my mitochondrial myopathy). Try working with that going on. Even for an hour.

The Botox shots have been hugely helpful. My migraines aren't the kind that come and go. There's bad and worse. So to get any kind of symptom relief is an enormous improvement to my quality of life. But I digress... this was why I had to leave work.

What leaving work did to me? I'm honestly still processing that loss. 2020 has been so shocking and I had so much change so quickly to my entire life that only now is the dust settling in my slow moving (but still brilliant) brain.

I feel the loss of my identity as a therapist profoundly. BUT (there's always a but/and in life if you look closely). But I am also building up new identities as I talked about a little bit before. I am still thriving. I can do both. Re-invent myself and mourn a profound loss all at the same time.

I'm learning the language of my body. What different symptoms mean and how to minimize the big ones (when possible). I'm learning to love myself and all my flaws, not to be "at war" with my disease. My disability is a big identity and it's not one that's healthy to "fight." 

I am the orchestrater of our home. The organizer. The planner. The artist and creative. A daughter, wife and mother. A puppy lover and gardener. I take pleasure in watching the people and things I love grow and flourish. I'm a disability advocate and a friend to some. 

These identities are why today doesn't feel like a loss. Today feels like a day to remember and recognize when my world changed, but I am still myself. Still passionate, wise and full of love and life to contribute to my community... It will just be in a different way than I originally thought and planned. 

Processing Grief

I lost a lot when I became disabled. 

A big part of my identity was wrapped up in my job. No... my career. It felt like I had just barely scratched the surface of a huge part of my life when everything was turned upside down. First by my muscle disease that cause my energy and mobility issues, then again by my brain tumor that left me with potentially life long side effects.

I am very resilient and landed quickly on my feet. I also have fantastic family support. However I don't think I entirely processed what had happened. I feel like I was just taking it one day at a time in survival mode going from one medical appointment to the next. My identity as a helper of others had been turned around completely and now I was the one in need of help. 

I realize now that the dust has settled a bit (and even though that we're still in a global pandemic) I'm finally processing what happened to me. It was very shocking, completely life changing and horrible. Now I'm having to grow my other identities (and dust off old ones, like being an artist) to rebuild myself. 

A Sharpie drawing I did for my Mama

One thing that hit me hard this weekend was that I had been feeling entirely unattractive. My sexuality had been smashed along with my confidence. Not very long ago I was a full time wage earner, busy but invigorated. Now I feel like a "fat, old crippled lady." (My words)

Of course one fix is slow. Weight loss (which I REALLY need to take more seriously!) The other is my sexual confidence. When I look good, I feel good. But let me back up.

For the last 7 years (since I turned 40) I have flirted with my "natural" hair color. I had been a life long dye addict and was curious what my real hair color looked like. So began a very long repetitive process of growing my hair out, coloring it, then whacking it short to go back to my natural color. After my brain tumor I tried out Henna and shunned the drug store box because of the chemicals. But that was a long process that was also very messy.

Well, this weekend I decided to color my hair again. Not henna, but not the drugstore box either. I went with a natural botanical brand of permanent dye and I picked "Licorice." I wanted a black vixen look like Elizabeth Taylor. 

My Mama took me to our local co-op and they had just what I was looking for. Then she colored it for me at her casa. I actually really love it and do feel much sexier and confident in my looks. It's silly how such a little thing can help me mentally, but it did. 

For me this was less about dying my hair and more about regaining some much needed body autonomy. I often feel like my body runs the show and I'm just along for the ride. This time I took the (black) reigns and got some control back. I also happen to think it looks great, which helps my self esteem. All that for just $18. 

I know I'll continue to process and grieve for what I lost, while being aware the whole time of how very lucky I am. My feelings aren't exclusive and I give myself full permission to feel both.

Facing Down Fear

I have signed up to take my license exam. It's the final step to becoming a fully fledged Marriage and Family Therapist. This is what I've worked so hard for over the last 10+ years. It's a very big deal and what was supposed to be the climax of my academic career. But it doesn't feel like that now.

It has been 11 months since I left my job because of my many chronic conditions. In the end it was the unrelenting migraines that were just too much for me to work through. This was my dream. To get my license and to help people and I'm still convinced I can do that in some capacity in the future. It won't look how I expected, but when does life ever work out how we plan?

Millions of people around the world have had their future plans completely derailed by Covid. Just because my cause is different doesn't make my situation any more special. Life is nothing if not unpredictable.

It has been very hard for me to study. Every question reminds me of my past work with clients and what I had to give up. I know that will fade the more that I study. I have five months before my test to work through my feelings and learn the questions. I've accomplished much harder tasks in the past.

I can almost hear the Helen Reddy song that my Mother would sing when I was little. It's very fitting to my situation. I don't always feel this way, but the strength of such mantras are helpful.

..."Oh yes, I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong
(Strong)
I am invincible
(Invincible)
I am woman"

Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.

Same Symptoms, Different Day

I used to keep a running list of my symptoms and share them with all of my medical providers at each appointment. This was helpful in the beginning because we had no idea what was wrong with me. When I started the quest for a diagnosis it was 2018 (2 years ago) and we were thinking it could be rheumatoid arthritis? An autoimmune disease? All I knew was I had a lot of pain that left me crying at night.

What it turned out to be was:

• Stocking glove pattern neuropathy
• Benign brain tumor
• Metabolic/Mitochondrial Myopathy

I also had a complete hysterectomy in 2015 due to major reproductive health issues.

I assumed at the time that my problems were mostly neuropathy (that I believed was caused by my Latent TB treatment the year before) and autoimmune. My symptoms were all pointing to RA being the main culprit. But then the sudden muscle weakness hit. From one day to the next I suddenly lost about 80% of my strength.

It took a very long time and many referrals to solve the riddle of my muscle weakness. The current consensus is that my mitochondrial cells (the power cells of the body) don't process energy correctly. I have 3 genetic mutations that have been identified that could be the cause. All of this is pretty new science so everyone is really just doing their "best guess." I've learned to be the expert in me.

Unfortunately either the brain surgery that I had in 2018 or my Mitochondrial Myopathy have cause me to also suffer from Vestibular Migraines. Shockingly these have been more crippling than my myopathy. So if you're keeping track it's:

• Vestibular Migraines
• Metabolic/Mitochondrial Myopathy
• Stocking glove pattern neuropathy
• Osteoarthritis (and possibly RA)

It's been about a year since I posted my symptoms. I also don't really keep track of them anymore. There's a few reasons for this. 

1) I'm tired of talking about it, looking at it and only being a "sick person."
2) My symptoms haven't really changed.
3) It's more useful to alert my healthcare team about NEW things if/when they come up.
3) New symptoms can get buried under my massive list of health issues and get overlooked by my doctors.
4) I have a great team who keeps good records of my health diagnosis, visits and concerns so it's a bit redundant at this point.

Rather than bringing in a list of symptoms with me now to an appointment, I bring specific concerns and/or questions that I have. I always take notes and I very very rarely go alone. This helps make sure I don't miss anything (as my memory can be a serious issue).

When I look at the list of my past symptoms I still have all of them. However, I also have treatment that helps me manage them. I feel positive that I will soon have treatments in place to help 100% of my symptoms be bearable.

Habits

My mother and I describe ourselves as the "Queens of lists". Every week we sit down and make a list of things we've been talking about. Usually something on a deep level or something we'd like to explore and grow in some way.

Last week we were discussing habits. Specifically things we'd like to become more of a "good" habit. Here's what I came up with:

Of course I also listen to my body. She comes first and sometimes habits fall by the wayside. Like this morning we were going to go swimming together, but my body just screamed "NOPE! No spoons for that today!" And I listened. Not something I used to be able to do at all, so I guess it is a new habit after all?

Here's me participating in some new weekly habits.

My new habits combined with my refusal to compare myself to my "old" self have resulted in something I really needed. A new routine in my life. A new way of living and being in the world. Which have resulted in this!...

I AM

When I became disabled I had a very hard time not comparing myself to my "old" able self. It was constant. If I spent time in the garden watering I would tell myself "Well, you USED TO be able to be out here for hours". See what I mean? Comparisons.

Nothing good ever comes from looking behind. It has taken me a very long time but I feel a shift. I think I finally moved past comparing myself to what I used to be able to do. It has been a huge liberation!

I can't pinpoint what caused it. I've been aware of how damaging it is and unhelpful, but I just couldn't stop it. It literally had tentacled its way into every aspect of my life... just like my disability. But unlike my disability it is something I can control.

What helps is being mindful. Fully present in each moment as they come. Not having judgement on my life and what I can and can't do. Just enjoying it for what it is. Once I made that shift in thinking, I was FREE! Free to enjoy my life and each moment as they came. 

So now I AM a person who:

• Can ask for help
• Lets others help me
• Does my best and lets it rest
• Is MUCH happier
• Is seeing the beauty all around me
• Is more confident
• Is less judgmental of others
• Has a lighter heart

Animal Crossing - A disabled person's best friend

I've been a fan of Nintendo's Animal Crossing game series since its release on the N64 in 2001. I've recently fallen back in love with their phone app game called Animal Crossing Pocket Camp. But here's why the entire game series is so important to me as a disabled, creative, nature loving person. 

Firstly you have to understand that my reality is one of constant, chronic pain, limited mobility, foggy headedness, vertigo, crippling fatigue and other challenges. 100% the opposite to what this game offers me AND it's a great drug-free escape from pain. 

So let me break down the specifics of exactly what I love about Animal Crossing.

1: I can play with and visit my husband. He has an avatar in the game and even when he's in the other room (one bonus of quarantine) working I can visit him in his garden, his campsite anytime I want. Where else could we pop up side by side and go fishing together? Not the real world, that's for sure.

2: I make friends instantly. You literally go up to someone, ask if they'll be your friend and if they accept then your avatars are friends. You can help each other out and be rewarded by your friendships too! The more friends you have the easier the game (just like real life, but... EASIER!)

3: My entire town is there ready to be explored with the movement of my finger. No spoons required. Mining, walking on a beach, exploring an island, fishing under a waterfall... all right there! I also have a big campground that I can decorate, a two story camper that I can decorate and a two story cabin that... well... you get the idea, right? 

4: I can fish, literally walk barefoot, farm a perfect (weed-free) garden, build a library, dress my animal friends, plant and grow flowers, rearrange furniture. I can catch bugs or hear the sand squash under my feet. None of these things are possible for me in the real world, but I get a sense of joy and satisfaction out of doing it through my avatar and in game. 

5: I can express my creativity in new ways that I can't do in real life. For example, this is the bottom floor of my camper. It's a sewing room! I'd love to be a fashion designer in real life or at least sew all kinds of things for my home, myself and my family. But in the game I can at least have a cool fashion/sewing room full of colorful things.

For me this game isn't just a time filler, or brain suck like some people consider them to be. It fills an urge to go camp in nature, to just hang out with my "friends" and to build and create new things. These are things that are either very hard or impossible for me to do in the real world.

There is a new Animal Crossing game out for a system I don't own. I won't be getting it right now due to cost. For me this little pocket size world on my phone is the perfect outlet. 

Met my herd!

Did you know that a group of zebra are called a "Dazzle?" So technically I should say that I "FOUND MY DAZZLE!!!"

Where? Well, aside from the fantastic folks in my MD Mixed Diagnosis Support Group, I've also found a ton of them on Instagram. I've only been on Instagram for two weeks, but I was shocked by the number of spoonie fellow wheelers there.


Finding people going through similar challenges and sharing about it openly has been a big boost for my mood and self esteem. 

Because Instagram is owned by Facebook I was hesitant to join. I don't like supporting companies like Facebook who go against my values and ethics, but in this case the pluses outweigh the minuses for me.

Through Instagram I also found this company called "Aware". There's a lot of companies who make jewelry for causes donating a portion to the cause you choose, but this one had a lot of invisible illnesses, including this fantastic ZEBRA necklace for "Rare Diseases". I took out an advance on my May fun money to get it today.

AND what a coincidence? I'm wearing this black and white striped dress my Mama bought me yesterday. Hahah! 

Fellow zebras. 
I encourage you to go find your Dazzle.

(I received no kick back or incentive with this blog.)