Surviving Chronic Pain – Axon Optics

Surviving Chronic Pain

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Surviving Chronic Pain

Guest post by a chronic pain sufferer.

Hello!  I’m a content creator admin at the Surviving Chronic Pain Facebook community. I’m also the volunteer founder of the Migraineur Misfits communities on Facebook .  I’ve founded a few blogs and twitter accounts as well.  I create the memes for the “Pain Tree” Series album and the “Stop the Stigma” Meme Collection album on the Surviving Chronic Pain page. I suffer from multiple disabilities, the most intense of which are chronic migraines, PTSD, severe anxiety, BiPolar II, and Degenerative Disk Disease (L1-L2 lumbar spine). After 3.5 years of being unable to work, I was finally approved last June for SSDI in New York State, and the fight was long and hard. I am 32.

Of the before mentioned disabilities, migraines are the most brutal for me personally. I have suffered from chronic intractable migraines (w/ and w/o aura, refractory w/ status) since I was 20. I had my first “real” attack when I was between 18-19. For almost 13 years now, I have suffered from this syndrome, and for over four years I have been unable to work due to the combined co-morbid disorders that coincide with it. I often feel alone and afraid of the world around me for physical reasons as well as emotional and psychological ones. There is still a social stigma about migraines where people think that they are only headaches, and they are not.

So where do we go when we feel like this? Whom do we turn to when no one seems to understand or try to care? Sometimes our family, friends, and co-workers get it and they give you space. Other times, they want you to just “act normal” and snap out of it. Sadly, that approach often never works because, you cannot tell your brain to stop making the vascular parts swell up or the nerves in the brain to reject the pressure. This condition cannot be cured with a ”mind over matter” attitude or lifestyle change.

We will try to educate those that think they have the answers to our “headaches” when they are not headaches at all, and seek the empathy that may never come. But the good news is that we develop a high level of tolerance for those that JUST DON’T GET IT and reach out to even more people struggling and writhing in their own grief, pain, and ostracism. We can show them that they are not alone. We are so many, but so few know the power of our unity. This disease does not need to destroy our minds and our lives. We are stronger and more powerful that this illness makes us appear.

Do not let anyone tell you that you are imagining your pain or need to ignore it, no matter what chronic pain you suffer from. It is real and we are here to help you through the dark parts and the beautiful ones – because migraines will not completely destroy our quality of life. They will train us to be more aware of those that do not care about our suffering. We can tell who genuinely cares and who just thinks we are malingerers, fakers, and losers.

Across the horizon, as the sun sets, there is always a glimmer of hope that a new day will be pain-free and life will not include ice packs, throwing up, missing work, screaming children, and a spouse that just refuses to understand. But when those people let us down, it is our job to still stay strong and educate the willing so that MAYBE this ignorance that surrounds chronic migraines will start to wane and dissipate.

We are in this struggle and working towards a revolution. A revolution to end the ignorance of those unaware of our nightmares and pain. This revolution can change the healthcare field forever. If we promise to make the misery visible. It’s okay that it is not always okay and pain creeps in at the worst possible times. It’s okay to cry and miss family gatherings because your anxiety has driven you into fear. What’s not okay is that all too often our family, friends, and coworkers don’t understand it. So, when you are well, tell them how that kind of treatment or attitude hurts and does not make you better. Those that DO care will be willing to hear you out and they will want to learn you story and help you identify triggers and find medications that work for you rather than treating you like you are nuts or just a liability.

You are worth a great deal, to yourself, your family, and those that love you and really want to see you get better or help you “ride through the agony” holding your hand. My message is that, at your darkest, most painful hour, your pain does not define you or defeat you. It empowers you and will make you stronger. Your willingness to fight for your life back will give you the hope you need to rise above the pain and be the best person you are capable of being.

Here’s a link to a blog I wrote last year that I read often when I doubt myself and my inner strength: “Finding Nemo: I Never Saw a Wild Thing Sorry for Itself”

I am a work in progress. We can all learn and empower each other as sisters and brothers in pain. We are not alone and we can bond together for the advancement of making chronic migraines more visible to those that don’t even want to give us a passing glance. With our heads held high, we can still say, “Migraines are NOT just a headache! They are real, and I am a worthy person that deserves more than this and I will fight for a cure to make mine more manageable or at least stop their prevalence and invasiveness in my life.” Furthermore, my chronic pain does not define me, and I know that I am never alone thanks to the amazing volunteers and members from the Surviving Chronic Pain and Migraineur Misfits Facebook communities. I derive an immense amount of pleasure from helping others, and that alone makes every day worth looking forward to despite the daily battle with chronic pain. It’s always a relief knowing there is a safe online environment to turn to when it seems that no one in our “everyday lives” truly understands. I look forward to promoting self-advocacy and spreading awareness together, this month, and all year.

‪#‎migraine #‎headache – Help ‪#‎StoptheStigma


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