My Life With Medicine – The Chronic Pain Truth

When you’re living with chronic pain, medicine is a part of your life. The year is filled with doctor visits, follow-ups, tests, prescriptions and refills. The medicine helps relieve some of the pain. That sharp pain, the pain that takes your breath away – and not like in the fairy tale books. This is the type of pain that stops you in your tracks and makes you close your eyes in pain and at times brings on those silent tears. The ones that no one other than you knows about. You’re unable speak and find yourself closing your hand in a fist – from the pain. After a few minutes, that intense pain is gone. And you think, “I’ll take my medicine to help me get through the next one.” And I do.

I take the concoction that the doctor thinks will truly work this time! He say’s, “take these two in the morning, this one for nausea, this one for vertigo and these 2 at night.” I see him on my next visit and tell him, it’s a go! It’s working, the combination that we’re trying is working!

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And because nothing is perfect, nothing comes without a ‘cost,’ I tell him about my side effects. The medicine although helping relieve the pain, discomfort, aches and the daily needle like pain, the side effects take time to accept. All medicine have side effects and that’s the truth. And my medicine, are for the most part, muscle relaxers. If you recall, what I have is all in the nervous system – the brain and spinal cord. These muscle relaxers cause a ‘sedation’ type effect on your body. It brings on fatigue and weakness, which in turn cause me to feel extremely tired.

It’s a feeling of having not had slept in a long time. That sleep that causes you to close your eyes while speaking to someone – oh but you don’t intend to be rude! You just can’t help it! And you sleep and sleep and sleep. Because the sleep is what removes you from the pain and for short periods of time, you’re taken to a place where you are in pain no more.

In turn for taking my prescription medicine …

I feel left out,

Alone and afraid,

Like a bad mom, wife,

Like I can’t keep up with life or my kids.

It’s caused me to …

lose friendships,

give up friendships,

cancel, and

feel frustrated.

Yes, it’s true! You take something on to then give up others. You give up the life you once knew, for the life that’s been handed. The new cards. The new circumstance. The life with chronic pain.

A-

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Chiari Is My Unwelcome House Guest

The past week has been a whirlwind. I’ve had my ups and downs and have been a ball of emotions. Last weekend I had to be taken to the ER due extremely intolerable symptoms due to Chiari and since then have had this week to recover at home from such events. Yes, I do take medication for many of my ongoing symptoms but when the medicine doesn’t do what it’s meant to help with, I progressively feel worse, and that’s when I take a trip to the ER. It’s no fun, it’s tiring and unfortunately I’ve been to my local hospitals ER more than I’d like to admit.

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While at the hospital though, I came to thinking about Chiari and what it means to me. I was thinking of what I can compare it to. I had so many nurses and a doctor come in to see me in my room and had no idea what Chiari nor Syringomyelia was. I don’t blame them though, the lack of knowledge and education on such a rare illness is seen too often, especially in the medical field.

I finally narrowed Chiari to this – that unwelcome house guest.

The one that refuses to leave no matter what signals you throw at it.

The one that has no remorse in overstaying their welcome.

The one that doesn’t shy away from being loud.

It has the worst timing!

It doesn’t care what day of the week it is.

It’s there and it isn’t looking like it has a departure date set.

If you have someone close to you that has chronic pain, lives with Chiari Malformation, Syringomyelia or any other illness, the best thing you can do for them is educate yourself on the matter. It’ll mean more to them then you’ll ever know.

Happy Friday,

A-

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Unapologetic and Living With Chronic Pain

It’s been with me for so long that I forget who I was before my Chiari diagnosis. The pain-free, care-free days are behind me. I have enough pain meds too embarrassing to say. There are days I want to go on without them – and feel human.

As time has gone by I’ve realized how much time I’ve spent trying to make others understand the depth of my chronic pain. I can’t change the way people perceive my illness, my diagnosis, my feelings, my physical limitations, nothing! The ‘ole ‘but you don’t look sick’ gets old quick. I know myself, what my day to day looks like, and I, myself know exactly what I have to live with – and that is enough.

There’s are certain feelings of guilt that come with chronic pain. The guilt of not being the mom I want to be, the wife I want to be, the daughter, friend, etc. and not living to peoples expectations of who they want me to be.

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I am not physically able and available and that is nothing I should continue to be ashamed of. I can’t be present in others lives as much as I’d like – or at all. I am physically unable to do many things, and only desire to push myself to my limits for my children, my family – no one else. Others expectations should not affect me, the Instagram worthy pictures of family outings should no longer tug at my heart, yearning those days to return to my own life. This is my perfect life, I am perfectly chronically in pain and will continue to be until my days end. I’m not sorry for others not understanding what I live with. I’m only sorry I’ve spent so much time convincing them my words and behavior are due to the constant struggle of battling with chronic pain while being positive. I will not allow others to cut me with their words. There is no need for excuses, I’m struggling and I don’t owe anyone an explanation for my absence.

Because no one is worth allowing them to break me down.

Happy Saturday.

A-

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