chronic illness · chronic pain · crps · friends · ketamine · writings

this is how you know

 

some people
when they hear
your story.
contract.
others
upon hearing
your story.
expand.
and
this is how
you know.
-nayirrah waheed

Hey friends.

Man oh man, I just don’t know how I got so lucky to have the incredible support system that I have. For all the doom and gloom moments I have where I throw myself a pity party and wallow in how unfair my life is…I am so damn lucky. I have SO MANY people in my corner.

Some days when I just think Im the crummiest person around with the crummiest luck and the crummiest body, people reach out and make me feel so unbelievably loved.

As some of you know who follow me on instagram/facebook, the ketamine infusion was a very emotional roller coaster. I had some moments of my pain getting VERY LOW and achieving some things physically than I can’t normally do. Unfortunately my pain came ROARING back within a few hours of leaving the hospital. I am talking 9-9.5 on the pain scale.

I cannot begin to explain how devastating that was.

My hopes were so high that I was finally going to begin to live a more normal life with less pain that the intense pain just seemed to take me to a dark place. I hate to admit this but sometimes when the pain is really really intense I think about killing myself or being able to somehow not be in my body anymore. I hope that this doesn’t trigger anyone and I also hope people understand that this isn’t something I would actually do. When you are in intense pain your brain does strange things, its kind of like when an animal gets caught in a trap. You find yourself willing to do anything to not be in pain which is weird and sometimes scary place to be in.

So instead of burrowing in to myself and listening to dark thoughts, I reached out.

I posted on Instagram about how sad I was feeling. I then posted several videos there and on Facebook showing how I normally function vs. the things I achieved at the hospital. I was proud of my progress even if it was brief and as always I hope to educate people about chronic pain and CRPS (and sometimes Lyme!)

The support and love and kindness that was showered upon me truly got me in a better mind space. Some people just posted how much it sucks that my pain was back, some people asked what other things could help me, some people made suggestions of things to try to get my pain down, and some just told me they loved me. I am so cut off from the world most of the time because I can’t leave my house so to have this incredible outpouring of human interaction and support just felt tremendously wonderful.

I felt heard. I felt loved. I felt intense gratitude that I know so many awesome caring people, some I have never even met in person. Instead of listening to the dark inside my head, I felt pulled back towards the sunshine. You all expanded just like the poem above and in doing so you made my hope grow and my fears soften.

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Life is a funny thing.

It is wonderful and it is wretched. It is a constant journey where you are always evolving with the highs and lows. The great part is that we are all in this together. No one is untouchable from the hard shit. People struggle with different things but we all struggle. It is part of this crazy human experience and it is one major thing that ties us all together, none of us are spared from the trials of life.

I will be doing a blog entry very soon on the entire ketamine experience but wanted to say thank you to everyone separately.

I hope that I can bet the same kind of friend you all have been to me. I hope I can be understanding, compassionate and loving as those around me. I want to be a lot of things during my time here on earth but being a good friend is one of the most important.

So…thank you thank you thank you.

 

love always,

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2 thoughts on “this is how you know

  1. I tried to email you but your the address attached to the link didn’t work. Here’s my emal:

    Hi,

    I came across your blog during a google search (does ivig help small fiber neuropathy). I see Dr. Younger as well and get weekly ivig infusions in my house (since January). My issues are CIDP, SFN and now Fibromyalgia.

    At my last visit with Dr. Younger I told him about the crazy pain I have in my feet after I do a very small amount of walking. The only way I can describe it is it feels as though someone beat my feet with a baseball bat. They feel bruised. They feel swollen. But they’re not.

    He recommended I see a rheumatologist and I saw him yesterday. It turns out there is a huge connection between FM and SFN and because I’ve already been down the antidepressant/anti seizure med road (and they did nothing except put 35 extra pounds on me) he is prescribing me Low Dose Naltrexone, LDN for short.

    I had no idea what it was and walked out of his office thinking this was going to be a huge waste of time, but then I googled it and lo and behold it looks like this stuff just might work. Here’s a link to get you started:

    http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for

    I start on LDN tomorrow and am crossing my fingers, toes and eyes that it works for me. Just wanted to bring LDN to your attention in case you haven’t heard of it (I hadn’t).

    Good luck to you. Best, JB

    (If you have access to my email feel free to contact me)

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