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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Note To Self For This New Year – 2020

How incredible that I’ve made it this far?! I want to start the month off by writing a few truths to myself and what version of me I want to be moving forward.

In living with chronic pain there are always different feelings, one minute I’m tired, the next I’m happy, excited, the next I’m drained and filled with intense physical pain. So, as much as I can’t control nor predict how I’ll be feeling physically, I want to be a little more positive moving forward. It can be draining to feel as if I’m a walking ‘Debby Downer.’ Or am I just imagining that?! Perhaps I am – I tend to be a little dramatic.

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Note to self for this new year – 2020. Be honest with self.

+ Stop feeling sorry for your illness. Things happen, trust in Him that all will be well.

+ Yes. You are sick. Accept it.

+ No one’s judging you for your illness. They just don’t know better.

+ Take your medication, including your vitamins, they’re good for you. Less pain equals less mood swings.

+ Schedule your doctors appointments. It is for your well being. If not for you, for your family.

+ Take charge of your life.

+ Don’t make commitments. You can’t keep them. Not because you don’t want to, but because you can’t predict how you will feel.

+ Your children will admire your strength and determination to keep going – despite it all.

+ Stop wanting people to understand your illness. They don’t. And they won’t. And that’s OK.

+ People don’t understand the energy that it takes for you to be open to ‘doing’ things – accepting visitors etc. It’s OK.

+ Put your energy into those who matter.

+ Be patient. Patience will get you far.

+ Be loving with yourself. Love yourself. Your body will love you for it. The weight gain is minuscule to what really matters. THYROID equals your weight gain. No one is entitled nor deserves to know this. You do. And that’s enough.

+ You’re sick. Accept it. Once you do, you’ll see life differently and only then, will you truly begin to live.

I’m sure there are one or two things that may have slipped my mind. But for now, this is a good start. These truths are not to demean or shame myself, they’re to help me see who I am and who I’d like to be moving forward.

A-

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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