Occipital Neuralgia

Hi, my name is BChronicPainHero. I'm here because

#MightyTogether Occipital Neuralgia Chronic Pain suffer

I was listening to music today and this song came up by Imagine Dragons. I've been having a very rough time feeling unmotivated and have been down on myself. This song really helped me to put in perspective that we all have bad times...it doesn't mean we give up, it means we allow them to happen then get back to where we are at peace again. Here is a portion of the lyrics:

"....It's okay to be not okay
It's just fine to be out of your mind
Breathe in deep, just a day at a time
'Cause it's okay to be out of your mind

I don't want this body, I don't want this voice
I don't want to be here, but I guess I have no choice
Just let me live my truth, that's all I wanna do
Baby, you're not broken, just a little bit confused.
...."

My birthday is Saturday and I am feeling a bit sad that due to all of my illnesses, my life hasn't been what I thought it would be. I've lost out on so much. And then I give myself a shake and remember everything I have to be thankful for. On Saturday I need to celebrate me, who I am now, not who I was, or the things I used to be able to do. I hope I can wake up and tell myself "Wow! I made it another year. Way to go!" And then face the day with a smile and a sense of adventure for the upcoming year. I hopefully can say " I'm okay!" #Fibromyalgia #BipolarII #Retinal Vein Occlusion #Pre -Parkisons #RestlessLegsSyndrome #OccipitalNeuralgia #ChronicDepression #intractablechronicmigrains

My name is Mita. I am a 42-year-old multidisciplinary artist and podcast hostess; a mother and a wife. I focus a lot on Pacing and Creative Coping strategies to get through my days with various chronic conditions.

Following a whiplash injury in 2015, is when my chronic pain/illness journey started. I’ve been diagnosed with whiplash, fibromyalgia, orthostatic intolerance/dysautonomia, chronic fatigue syndrome, occipital neuralgia and chronic migraines.

I am in pain every day. Some days my cognitive function is severely hampered due to Brain Fog. And P.E.M (Post-Exertional Malaise) can be a real stick in the wheel.

My baseline, on a good day, is a headache pain level 2-3, occipital neuralgia at a 2 and fibromyalgia pain level 4-5 (on the ‘In Office Doctor’s Pain Scale’) with migraine attacks every few days.

Since developing a chemical sensitivity, it makes the pain hard to control, as I cannot take most medications.

I experience Vertigo, muscle weakness and extreme fatigue on top of all the other crazy symptoms these conditions come with, and I am at a fall/faint risk if I am not careful.

Late fall, winter and early spring are the roughest months to get through, living in the Midwest as I am. But once the weather stabilizes and becomes warmer and if I have been prudent with my energy supply during the winter, then I can find myself living it up a little more during summer which is invigorating for the soul.

So, I am limited. Physically. This is my reality. I only have so much energy to go around and every day I need to pick and choose what I spend it on. I always have to keep in mind that I cannot overdraw my account. I need to balance my ‘checkbook’, if you will, to make sure I do not go down to zero, because I may not have enough to go around for the next day, or even the next couple of weeks if I do. But with Pacing I can lead a somewhat decent life.

ME-pedia describes Pacing as such: “…an activity management strategy to help ME/CFS patients limit the number and severity of relapses while remaining as active as possible…”

(Obviously, I am not perfect at Pacing as I find myself doing too much on occasions, due to getting impatient with my limitations. Overall, I’d say I do pretty well with it though.)

So, what do I choose to spend it on?  Well, some mundane tasks need to be done, like laundry or light cleaning, so I spread it out over a few days. I work within my boundaries which I have somewhat figured out via trial and error. This is part of Pacing. Ups and downs til you figure what You can handle.

I am a very lucky gal to have an extremely supportive husband and three children that help me with some of the heavier chores. The house would be in utter chaos if this was not the case.

When the mundane, pragmatic things have been taken care of, I choose to use my energy on the activities that fill me with contentment, keeps my anxiety levels down and overall contributes to a better state of mind. Whether they are Creative Coping Strategies, like painting, drawing, forest bathing, expressive writing, or just being with my family in the moment, or listening/making music (the latter depends fully on headache pain levels and brain fog but within my capacity, music will always have a part in my life).

I am also half of a duo in a podcast we have named Creative Copes where we talk about these exact things – A labor of love for ourselves and what we hope becomes an aid to others in similar situations. I save some extra energy for research and general podcast prep so I can co-host it, because the idealistic compassionate part of myself wants desperately for other people to feel less alone: a constant state of mind when stuck at home, in a body that does not compute anymore.

This is what I spend my energy on. Things that matter to me; that settle my body and mind and make my heart soar.

I am not all knowing and cannot be worldly with how limited I am: I am clearly not meant to be a main figure in changing the world!

But I can do Small Things in a Great Way, for myself, my family and others, and hopefully someone can feel less alone because of my story and be more inspired to get up each morning and meet the day head on. Love and light ❤️

I can be found on Instagram handle MitaMu.Art and/or Creative.Copes

www.instagram.com/creative.copes

How can someone cope with nerve pain for years? I'm quite frustrated by this and just can't think straight anymore because of my pain.

#Depression #Anxiety #ChronicPain #ChronicHeadaches #OccipitalNeuralgia #Migraines