Self-Love Epiphany

This is very personal, but I'm sharing because it helped me.  Hope it helps someone else, too.  It refers to my late sister Monica.  She passed in 2015 after fighting 5 years with breast cancer.  Finally, it metastasized to her brain.  I think she would be pleased in knowing how love for her helps me still.  Its likely I will get time lines wrong, because of my own fog, or distance, and I do not make any assumptions to know how she felt during these times.  And I don't compare what I endure to cancer.  Its different.  I want to share this experience with some others who are suffering and don't know what true self-love sounds like.  I figured it out last night. 

Yesterday, I had a good day until about 1pm.  Then my body turned to the "oh, lets let each nerve have a loud voice right now" channel.  I laid in bed, observing myself, my pain, not emotionally connected.  I had pain in my ears.  In the webbing of my fingers, I felt pain.  Everything was turned on.  It was overwhelming.  And, serendipitously, I'm in the middle of a really good how-to-cope-with-chronic-illness book called Chronic Babe 101 by Jenni Glover.  She writes from a place of self-love.  You can feel it in her words.  I needed to love myself during that flare yesterday, I knew that was all there was to do.  There wasn't anything "of this world" that would help.  I intuitively sensed that it would be a short-lived flare, and I just had to endure.  (It is gone this morning, by the way.)

So, here's how I spoke to myself.  Differently than I ever have before.  I remembered my first conversation with Monica after hearing about her diagnosis of breast cancer.  She had a young daughter and a 6 month old baby.  She was devastated.  As her older sister, I had the phone conversation that you just never want to have.  I got the gift of being present with her in her heartbreak and fear.  I got to say "Oh, honey, I'm so sorry.  I'm so sorry."  I got to cry with her on this end of the line, as she lived in FL, and I live in TX.  I got to have this kind of compassionate conversation ONE time.  Her choice was to protect her kids from knowing about her illness, so I don't remember talking to her again when there weren't little ears listening, so, illness wasn't mentioned.  I got all my info regarding it from my folks, who saw her daily.    They were aware of it at the end, of course, as she became quite sick, and passed at home.  But, I can only remember being present in a place of her pain, that kind of heartbreak,  that one time.   That initial conversation.  So, yesterday, I spoke to myself in the tone of that one phone call.  I spoke to myself, lying in bed, in exquisite, really remarkable pain, as I did that day to my baby sister.  It was love.  Only love.  Nothing else.  Not problem-solving, not fixing.  Not deflecting because of discomfort.  Not judgment of any kind.  Just love.  I imagined how heart-broken I was, and I wrapped my own arms around myself in pure acceptance and love.  I was present with it.  Entirely present.  I honored it.  I didn't try to move it along.  I didn't feel any anxiety about the level of pain, as I have done in the past.  I just let it be there.  I knew, logistically, that my needs were provided for me.  And after T was in the house with me, I knew I had help if it came to that.  So, I was fairly paralyzed in bed from it.  But, there was no fear, no despair, no sadness.  Not this time.  I remembered my Monica.  I spoke to myself as I would have to her.  And it got me through the flare. 

This is self-love talk.  I have FINALLY figured it out.  I'm going to practice it often, so it becomes habit, and pain becomes something that I can exist a little easier alongside. 

So, sweet, sweet Monica, this one is for you.  Thank you for so many things, but most recently, for helping me to remember what love sounds like. 

Have happy days.
M

The First of 2018

It’s been a long time since an update for you five folks who follow me. Lol.  Here is what I have been attending to since October. 

On October 14, 2017, I got a migraine, triggered by the smell of a driver.  That headache stayed severe until I was finally hospitalized on December 10.  Administration of IV DHE brought it down from 10 to 5, and that took all 5 inpatient days.  Shortly after returning home, it was severe again.  I began Botox at the end of January.  Beginning in early February, I started seeing a chiropractor 3 times a week.  My neck was found to be curved in the wrong direction.  Now, in late April, I am not debilitated by headache every day. I take my bath by nightlight.  I still have head pain daily, but it is getting better and better.  I got a second Botox treatment in April, and I continue to see chiropractor.  I am photophobic to the point now of needing tinted glasses all the time.  But, I am progressing.  I have successfully switched away from belly sleeping position.  I am working on the Muldowney Protocol for strengthening and stabilizing my muscles, so that joints can be stable, even though the connective tissue is weak.  I have battled depression this winter, not being well enough to leave my bedroom for over 2 months.  But, I am back in therapy, back with friends.  Progress.

So, you could say, it has taken every bit of my energy just to cope with this particular hand of cards for 7 months.  I enjoy writing here so much.  And I think I do have some valuable insights to share sometimes.  I missed it, but it was impossible. 

I am grateful.  I keep gratitude in my heart, as my treasure.  Today, my head pain is still under a 5, while my body pain is at a 9.  I lack strength enough to hold onto a dish.  My quality of life is so much higher than it was a few months ago.  I have support.  People love me and check on me.  I am blessed.  All my basic care and many luxuries are provided for me.

My good friend and writer, Margaret Schroeder, interviewed me part of the way through the winter.  She did a great job.  It is here.  My first podcast appearance, but not my first interview with her.  

The pain I feel is just connected to my Earthly, physical, carbon-based body.  It is not in me.  Not in my soul.  But, it does limit me.  It does affect my soul.  I grieve. 

I’m thankful that now, with less head pain, I can cry again.  Crying with a severe migraine is a no-go.  Now, I can properly express how sad this occasionally feels.  A good one is coming on soon. 

Have happy days.

M

The First 10

Drafted on 10/14/17

Last night was the first time in my journey that I've told a medical professional my pain was at the top of the scale.  They ask, on a scale of 1-10, 1 being not at all and 10 being the worst you've ever felt, what is your pain like?  I've never told anybody, even myself, that my pain was above 9.5.  But last night, I broke that mold.  It was a 10.  And I still wouldn't admit it.  My husband had to sort of give me permission to use the number, making me understand that I wouldn't be quizzed on it later.  Helping me to see that, this nurse in the ER, he doesn't see how much pain I live with each day.  This is not a test.  He just needs to understand how uncomfortable I am, how much I am enduring, suffering.  That extra .5 that you are hanging onto for your own mental stability can be abandoned now, and forever.  It is ok if you say your pain is at 10.  They're not gonna punch you in your migraine-riddled head and then ask you again, forcing you to say 11.  It's safe to say 10 when that is the truth of the feeling.  It was last night.  Here is the story.

Yesterday, I hadn't had enough sleep when the day started.  We needed to go pick up our shopping and run to the PetSmart for the cat food, all of which I ordered online and we just needed to pick up.  And I needed to be home by about 11:15 in order to have some lunch before the bus picked me up at 12:05 for my ride to my support group meeting at 1pm.  So the day started out not great.  Hadn't been able to fall asleep until after 1am.  Just not enough rest, that's all.  

Lay down on the couch while waiting for the bus, resting, feeling the migraine birth, taking the relievers I have here to take, doing all the things I need to do to help stunt its growth.  So, in addition to this, the diarrhea began, just before I was due to leave the house.  Increasing my dehydration.

At the support group, which I don't regret attending, by the way, it did get worse.  I did laugh, and I was valued and loved, and gave love and value, but, it did get worse.  Just by way of stupid flourescent light.  But it still was what I'd call reasonable.  I was able to take my sunglasses and hat off to take a quick group picture.  So, the stars being aligned the way they were, here is the straw that broke this camel-back.  The very polite young man who drove my bus (mini-van) home.  He was nothing but kindness to me, and I was already very uncomfortable re headache.  But, his odor was migraine food.  It grew exponentially so that 30 minutes later when we were home, I could barely see.  (One thing I could have done in hindsight to prevent some of what I was exposed to was to ask if he could just strap my chair down in front with him, and I would ride in the back, so I wasn't sitting right next to him.  But, it might have made little difference.)  I got out my trusty peppermint essential oil and rubbed it all over my face, including just barely on the skin up my nostrils.  This guy's scent was literally making me ill, and I had to do whatever was at my disposal to survive.   I didn't want to vomit, and there was real danger of that.  I held the small bottle of oil up to my nose during the whole drive home, with a blindfold on my eyes.  

Arriving at home, I was so disoriented, that I fumbled around for my keys, unknowingly pressing the panic button on my home security system.  I got a call within seconds.  I wasn't remotely able to answer a phone call, nor did I look to see who it was, and let it go.  I got inside and Tim greeted me, saying that I'd just set the alarm off, and he just got it turned off.  His phone was ringing.  He missed the first time, and picked up the second ring.  It was the alarm company, ready to send the police to me for my panic alert.  So, we were just on this side of keeping the police out of the uncomfortable day.  lol

I went straight to my bedroom.  I managed to get out of my clothes and laid on my bed with as much comfort as I could manage.  A little later, I knew I had to take some action, this was getting serious.  So, I went to my bathtub, and I let alternating hot and cold shower streams hit my head.  I think I did that for about 20 minutes.  I needed help getting out of the tub, so T came and helped.  We got me dry and to my bed.  I had him give me 10 mg diazepam.  That thankfully knocked me out for about an hour and a half.  When I woke up, the headache was worse.  I discussed with T that the only thing I had to do was to take a muscle relaxer but, that would create a situation where he would have to help me get out of bed and to the bathroom.  I wouldn't be able to do anything with my voluntary muscles.  And the diarrhea would likely strike again.  But, because there wasn't anything else to try, we went forward with that, and he stayed in my room for a bit, because I was scared to be by myself.  Just after he left, I was almost asleep again when the vomiting began.  After I vomited, I got on my support chat, asking my friends to send up a prayer for me.  One of them, thankfully, wisely told me that if vomiting has begun, its time to go to the ER.  I thought a shot of Tordol might help.  I'd only had this medicine one time before when I let a migraine go for 8 days.  At that time, it didn't help a bit.  But, I thought for this one, since it was still the first day, that it might.  So, I called T and told him I needed to go to the ER for a shot.  He got up from bed, and got me some clothes, helped me dress, got my list of meds from my health file, and took me back to the very hospital that my support group met at earlier in the day.  

I didn't stop vomiting during the 20 minute drive.  Not once.  I was dry heaving at the parking lot.  

He filled out my forms. 

UPDATE:  At this point, the piece ends and I did not write again until last week, Apr 29, 2018.  I won't go into all that happened during the rest of that particular evening, nor will I take space here to delve into the last 7 months.  Suffice to say that it was a hard winter for me, but I have been making progress and quality of life feels high again.   

Have happy days.