Tag Archives: invisible disease

Hope is Alive for 2017!

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Happy last day of 2016 everyone!  We made it!  We are still alive!

I love making New Year’s Resolutions.  I do it every year.  I think about my goals often, and how I can survive and thrive, despite having this painful and misunderstood chronic migraine disease.

I hope I helped educate people better over this past year.  I haven’t tried to hide my disease as much, like I did in the past.  I started this blog a couple years ago as a baby step toward being more vocal.  That helped me gain confidence about posting on my personal social media pages, like Facebook and Instagram.

So Thank YOU, my friends, for helping me grow.  Thank you for your support.  I love you all!  You bring so much to my life.

Please continue to have HOPE for 2017!  We can still have meaningful existences, even though they are painful ones.  We have so much to give to this world.  ❤

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The “Concerned” Family Member just wants to “help”

What is it about a seemingly innocent suggestion from a “concerned” family member who just wants to “help” that can send me into a spiral of guilt, self-loathing, and tears?

I imagine I am not the only one to experience this.

I’ve read tons of articles about how to prevent migraines.  I’m sure you’ve heard these tidbits before too.  I sigh with relief when one doesn’t apply to me.  “Quit smoking cigarettes”… well, I’ve never smoked cigarettes ever in my life, so SWEET!  Done and done!  “Maintain a healthy weight”… okay, cool, I’ve been doing that for my whole life, so SWEET!  Done and done!

Sometimes, a suggestion hits too close to home…

“Maintain a consistent sleep schedule.  Go to bed at a decent hour, and figure out your magic number of hours of sleep, like 7 or 8, and stick to it.”

Well F*ck.

I’ve had insomnia my entire life, and I have SO much anxiety surrounding bedtime.  I wish I was a better sleeper, but it is truly difficult for me.

So when a “concerned” family member points out this fact to me for the MILLIONTH time, what did I do?  I said that “it’s hard for me, but I guess I could try.”  And then I locked myself in my room and cried and spiraled into that guilt/self-loathing pit.

I have no idea how the f*ck do that.  And this person wants me to control the very thing that has eluded me my whole life?  And is basically blaming the fact that I am in horrible pain right now (and for the last 15 years, up and down) on something that they are basically saying is my fault?

Grrrrrrrr.

And one of the worst parts of it all?  …  They could be right.

F*ck.

I don’t know what to do.  Try harder, I guess?  See a sleep psychologist?  I don’t know.

In too much pain to play this game right now.

 

P.S.  My vacation was GREAT!  Much too short…and I only had a couple of attacks, that were managed well with pain medication.

 

“How’s your head today?”

I don’t know if my friends should ask me every time they see me, “How are you doing… How’s your head today?”

I appreciate the love and concern and support, buuuuut…

it’s getting depressing, to be honest.  It reminds me that I have symptoms every day, and full-on pain attacks almost every day as well.  It’s rare for me to have a full good day.

So at this point, it’s safe to assume that if they see me out and about, it’s either because:

A.  The pain/symptoms are tolerable at the moment
or
B.  I am able to fake feeling better for the moment

So maybe I should have a chat with them.

I can see how much they care.  I can see that they are curious about how I am doing.  It’s just not my favorite topic at the moment, because it brings up all these negative feelings in me.

I’m getting better at talking about it when I need to talk about it.  All other times, I’d rather be distracted and try to forget about this disease that haunts me.

I know that deep down, I am lucky that people care.  That people *want* to know.  That my friends are trying to understand what I am going through.

Having a chronic pain condition is different than getting sick.  The cycle is different.

Healthy Person Cycle:  Healthy ->  Gets sick -> Rests, eats chicken noodle soup, stays home for a few days from work, takes antibiotics or OTC meds -> Gets better -> Life resumes as normal, until you get sick 6 months later or a year later or whenever

Chronic Pain Cycle:  Gets diagnosed -> Tries a hundred remedies and medications -> Has symptoms almost every day for life -> Misses work and social activities all the time -> Has to take pain meds to function most days -> No more “normal” -> No more “getting better”

I’ve lived in this pain cycle for 15 years.  I have hope that something will help my condition eventually, but I haven’t found it yet.   I am learning to cope with this life I didn’t choose.  I try to spread awareness to the people in my life.  So I thank them for asking me how my head is, even though the answer has been the same for 15 years: “It’s up and down.  Good and bad.  Unpredictable.  But I am managing the best I can…” because I am a chronic pain warrior!

My definition of a CPW?

“Chronic Pain Warrior”:   Someone who experiences excruciating pain every week.  Someone who treasures their good days *so much* because they have so few of them.  Someone who wasn’t given a choice to live this kind of life.  Someone who keeps going despite how hard it is some days.

 

P.S.  I am going on vacation for the next week!  *Fingers crossed* that my pain levels are nonexistent… or at least tolerable!

 

 

 

 

 

 

I wish life hurt less

“You think you want to die
But in reality
You just want to be saved.”

I’ve been struggling once again (ahem, like always) with acceptance of this disease (chronic migraines).  I’ve been hit with so many pain-filled days lately, without much of a break in between.  And even on my “pain-free” days, I am still experiencing symptoms of prodrome and postdrome… either recovering from the pain, or dealing with symptoms that I know are going to lead to another horrible attack.

It’s really f-ing hard to deal with.  I constantly battle with myself over every little thing: what to do, how to care for myself, which meds to take, if I should wait to take meds, if I should try to go to work, if I should hide it, if I should reach out to people… but isn’t everyone sick of hearing about my pain?  Because I’m sick of feeling this pain that won’t leave me alone.

There is so much good in life… people, places, experiences… I’ll never give up.

I just wish life hurt less.