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Softness

I was recently talking to someone and they told me that I over identified with my pain, that my desire to communicate it was just a way of feeding the pain and make it bigger. It is a terrible thing to hear from someone that your illness is your fault, which is how my inner critic took the message.Maybe she is right or maybe I need to find some way to communicate this hurt, to be able to really look at it and let it go.
Recently things took a turning point and I am struggling to hide the physical pain.My walking has become unsteady and unpredictable, it is embarrassing and inconvenient.Right now, I have no idea what the future holds except a trip to see another doctor.
Instead of me sitting down to a cup of tea and describing in detail what the pain feels like, let me tell you what I am grieving, what I have lost.It might be a temporary loss or it might be a permanent loss, the grief is there.
I have lost confidence and trust in my body. Yesterday I needed to stand up in front of som…

Breath

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Today is a really rough day, that word rough can have so many different usages.Let me tell you what that means today, let me tell you about the demon that rears its ugly head sometimes.Physically I have little energy, the pain has been high, there has been a lot of loss of function and I am tired. But all of that is minor compared to the lies my mind will tell.
Today I woke up to listening to my body scream and shout in protest, the past few days it has felt like my emotional body is just locked in that paralyzed scream.I take breaths to feel that, it is all I can do at this point.I make my juice, use my inversion table and do some quick physical therapy exercises. The mind starts jabbering, it tells me this is not going to get better.It tells me that if it was going to get better I would’ve figured it out.It twists what my loving friends and family have told me into painful daggers to back up the point that I am simply a burden.That I need to push harder.But there is nothing left.

Prayer

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I open my eyes and my body is heavy, I can feel the burning and tingling of my nerves and I just want to go back to bed.I toss and turn for a little while trying to find a comfortable position until my alarm goes off, but eventually I just get out of bed.
I am reminded of a backpacking, carrying the weight of the backpack, pushing the body to get to the next campsite.Those moments when the legs are so tired it takes intense concentration to move.When the only thought becomes just take the next step, that is how I feel this morning.Except there is no backpack on my back and I haven’t been hiking ten miles.I slowly cut up my celery to make my juice, send Adam a good morning text and measure out herbs for my tea.
I share with Adam that I was upset about something, that I still felt misunderstood.That is a so difficult to explain to people that do not see me on a daily basis to understand how it feels to be in my skin.How much intense mental work it can take to keep moving, to put on fo…

Pain

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I have been asked many times, “what is your secret?”People want to know how to handle pain, but the truth is very few people have ever seen how I deal with pain.When it crosses a threshold I retreat, as most humans do.I have seen that retreat as weakness.You see I walk around assuming that everyone else is in as much pain as I am, and they handle it better.(This might sound crazy to you, but it is more about how I experience the world.I experience the world through a filter of pain and I am just doing my best.)
Last night Adam and I were at dinner, and he said something interesting.He said there is no way to quantify how much pain someone is in.He said maybe I need to consider how my pain affects my life.He said “I hurt a lot from my training, but I have never been in so much pain I couldn’t walk, that I passed out, I have never even had to consider if I could go to work because of the pain I was in.” I really wanted to take this as proof that I was weak, he said he was in pain and h…

Groot

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This post probably won’t make sense if you have not seen the Guardians of the Galaxy movies, so I you want context, go watch it. The post will still be here.
I happen to love Groot.It is a common tool that Adam uses to show me clips of Groot; they make me smile.Today after an awkward morning I was thinking about how Baby Groot fits in with the Guardians of the Galaxy Team.
I went to meet with my old supervisor this morning to go over my final evaluation, I put on my chaplain clothes, and nothing felt like it fit.Of course, it was raining so I just needed to get out the door, ugly shoes and all.I couldn’t listen to music or a book because driving takes far too much concentration for me now.I was left alone with my anxiety and stories about how the meeting would go.Most of my anxiety is rooted in not being able to give a timeline for my recovery or even a clear diagnosis of what is going on.The amount of blood and other samples that I have given in the past two months, I would’ve hope …

Dinner

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I never know, I never know what the day will hold when I start to open my eyes.I am one of those people that opens my eyes before I start to stretch into my body, I like to look around and plan. The night before I had gone over the plan for the day, make breakfast, clean, appointment, make lunch, prep dinner, write and rest.As I start to feel my body, my legs are tingling, not painful but weak.Right there, I start to get discouraged.I keep going and wake up, start breakfast.I can feel a change in my gait, I can compensate for it and adjust it, but it might get worse.
It might get better, and there are things that certainly help but I am discouraged.First thing I do in the morning is plan, I like having a plan. I want to be able to say when I can go back to work, I want to say when I will know if the medication change is helping, I want to sign up for classes and keep growing but I don’t have a time table.That is discouraging for me.
I come back to that question “What can I do…?”In t…

60 miles an hour to 0

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I am not able to write, at this time.Looking at words and screens tends to make me dizzy, when I do type my fingers don’t necessarily work.I find that random words are spelled wrong, or I just type half a word, or sometimes only a few words in a sentence.I am beyond frustrated and I must use Adam as a proofreader for even simple things, like text messages.I can’t really read my own handwriting.However, I really wanted to share something with you all.
This past month has been terrible, I spent weeks in bed, a week in the hospital and was really scared.I left the hospital without a clear diagnosis and was forced to use my very foggy brain to put things together.Luckily, I had some clear moments and it lead me to a possible diagnosis and more importantly an amazing, caring doctor.This doctor spent over 45 minutes with Adam and I going over my entire medical history. As someone who has battled complex chronic illness for years, I am still overwhelmed with gratitude that someone took time…