Chronic pain is too much for too long and too often

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The last 3 weeks I have been in a migraine cycle from hell. Hell is the only place to describe it. I suffer from chronic migraine and even this rattled me. Here’s the thing I’d like to tell you about chronic pain, it’s too much for too long and too often!

You never get used to pain. I have found ways to mentally deal with it better, to alternatively treat it more naturally and ways to adapt my life but the reality is it hurts….a lot. With my migraines, I get insane pain (on all sides) that resonate throughout my entire body like a lightning bolt that never goes away. I throw up constantly (well, my body tries but at this point my stomach clenches so hard to keep any food in me that it’s basically violent painful heaves each time I sit up.) I have auras that consist of black dots, lines, zigzags, white light flashes and tunnel vision. I clench my teeth/jaw, fists, toes and thrash my body to the point I bruise. Light and sounds puts me at risk of passing out. The list of pains goes on and on and on while the minutes, hours, days and nights pass by.

When I was in labor, my nurse was able to tell me “Your contraction is at its worse, it’s getting better and going now.” The biggest battle besides the pain is not knowing how long the migraine will last. With this last cycle, I had points that I did not see the light at the end of the tunnel. The fear of living at a level 8/9 for the rest of my life was and is my reality. After an unending migraine, I don’t remember ever feeling better, can’t do anything to find relief and no one can tell me it’s going to be better soon because they don’t know that.

In comes the anxiety and depression that most chronic migraine sufferers experience. Anxiety about doing something to make it worse, about how long it will last, about missing out on life and about what will be missed in the future. Depression about being locked in a dark room alone for hours and feeling so alone. Alone. Alone to fight my pain because no one else can help. Feeling worthless and sad that this is my life and the way it will always be. Sadness from the things I can’t do and won’t ever do. The feeling of pain being the only feeling that I feel because nothing else can enter my mind is exhausting and unfair.

In fact, everything is exhausting and unfair. Even once the pain lowered, I was exhausted. Exhausted from fighting the pain and little sleep after days and days in bed. Looking at social media was too trivial. I can’t stand seeing moms complain about their kids when my children are my inspiration for everything and give me a reason to fight! Those moms are so ungrateful. In fact, the only reason I got out of bed was to go see my daughter for one hour at her school for an end of the year reception. I had spent the entire morning heaving from pain and used every bit of my energy to be there. One hour. One hour is where I spent all my energy in one day just to make my daughter smile and to make me feel human while other women are complaining that their kids are being kids….ugh, exhausting! (*Note:  I’m planning on writing a series on how my children are shielded from these episodes….**spoiler alert** lots of help and preparation!)

Once I emerge from a cycle, I always find it difficult to enter back into the real world. The world outside of my pain, outside of my room, outside of my head. I look in the mirror and don’t even recognize myself. My face is broken out and I look so weak and pale. My list of to dos is a mile long and the cognitive damage and physical weakness make it difficult to multitask like I normally do. I have trouble with just one task and focus on that alone. The anxiety stays with me because I never know when my migraine will return. I walk on egg shells and give myself credit for doing even the smallest things.

Chronic pain is too much for too long and too often. Before this 3 week cycle, I had made it 4 days at a level 5 pain level. This was good, but 4 days since my last major migraine? It’s not like I got food poisoning and thought, “Wow, glad that’s over, I’m never eating there again.” I’m going through this dramatic traumatizing event and thinking, when will it come back? Not if, when. Will it be tomorrow once I eat a normal meal again, will it be when I leave the house, will it be when my children scream and my stress raises, will it be when I try to get my list done and push myself too hard, will it be in a few days with my menstrual cycle, will it be when the weather changes AGAIN, or will it be for no reason? It will always come back….and soon.

I questioned if I should write this post. I like to be optimistic and show my readers hope. But the reality is, I suffer. I suffer a lot. Hopefully I help many with writing MyMigraineLife but there is no cure and I live with that every day. This is not a post to make you feel bad but to remind you that you are not alone. That maybe someone has it worse and to show gratitude for everything you can do today. To remind you that you never know what someone is battling with and to be gentle and kind. And to remind you that someday it will get better. My better does not mean I’m ok, it just means I’m out of my dark room today and I’m writing! That’s better! I still have a long way to go and am very aware that tomorrow it could be much worse. All I can hope is that it gets better…..

Disney World. My migraine

 

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This picture is intentionally blurry.  I may have been smiling but this is a small sample of the blur I was looking through that day.

 

There is no way I expected to make it three days without getting a migraine.  My day at Magic Kingdom had been perfect and low pain which meant for sure I was getting one the next day.  Sure enough, I woke up sick.  I immediately took my rescue meds, drank water and rolled around my bed in pain and anger.  I was really angry and not willing to miss the day that I had planned for my family. 

So when it was time to go, I loaded myself out of bed and got on the boat to Disney Springs.  With the experience I have, I had prepared our bag and stroller the night before and all my husband needed to do was get them dressed and lead us all to the dock.  At Disney Springs we got breakfast.  I sat outside of the busy crowded, loud, disorienting restaurant to save a table and hang my head in pain.  Everything around me was in slow motion and my body clenched.  I was barely able to stomach a sandwich and caffeine to hopefully speed up my meds. 

We next proceeded to the boutique in which my beautiful daughter would be turned into Cinderella.  As I approached, I  instantly felt fear of this magical place.  Picture a room filled with lights from every direction with air packed with hairspray, sounds of women talking in pitches I can only imagine a dog could hear and parent’s pushing you to get out of the way of their photo op.  Basically a Migraine’s hell.   I can still smell it just writing about it. 

As my son and husband were leaving to go to the Lego store,  my husband asked me if I was going to make it.  Let me tell you about the motivation of a stay at home mom watching her daughter turn into a princess.  My daughter had told me the day before that she wished on her “wishing star” that she could turn  into a princess.  I may not get money for what I do but watching my sweet girl’s wish come true is my salary. 

As I was very aware of the seats around me and garbage cans (I tend to throw up with my migraines) I decided to stay and immerse myself in the experience.  Let me tell you, if I had been one bit of a higher pain level I would have had to tap out.  Don’t think I’m telling you I can do anything if I’m motivated enough, but this was an exceptional occasion.  I should have been in bed and am not sure how I did it, to tell you the truth. 

Anyways, I decided to ask our “fairy Godmother” about some special occasions she has seen there.  She began to tell a story about an engagement but the story that moved me was this…...

A little girl Skyped with her father while he was deployed in Afghanistan so he could see her transformation.  I listened with tears in my eyes.  Tears of pain, tears of heartache for so many and tears of gratitude. 

I stood there with a smile on my face yet close to passing out and I thought of how thankful I was.  Yes, I was pained in every inch of my body yet I was thankful.  I was thankful to that dad, his daughter, her mother, and to everyone who sacrifices for our country.  I was thankful that I knew my husband and baby boy were safe next door.  I was so thankful to all of the men and women who put their lives on the line so I could stand there and watch my child’s wish come true.  It was a very profound moment to remind myself that my pain may have been all consuming but I’m not the only one suffering.  I think it’s a moment I will never forget!!!

So with this all said, let me say THANK YOU to all of the men and women in our armed forces.  Not only thank you to you, but thank you to your family and friends who also sacrifice while you protect us.  Thank you to generations past, present and future.  The job you do is something that is not acknowledged enough.  You allow the American dream and little girl’s wishes to come true.  Thank You!

Disney World. The Good, the Bad, and the Migraine

Disney World

Disney World!!!!!!

 

I went to Disney World for 3 days and I could probably write a book on it.  Instead I’m going to focus on three things. The good, the bad, and my migraine.  So let’s begin with the good……

Where to begin. Disney World is called the happiest place on earth for a reason.  If you’ve been following me from the beginning, you know this is not the first time I have written about a Disney princess (A Whole New World?) I have loved all things Disney since I was a child and have been so happy to see my children fall in love all the same.  We spent an entire day at Magic Kingdom.  I had planned and saved like most families do and was eager to see how my dreams would come true for my family.

My personal favorite thing was to ride the rides.  I used to love rides but now enter them with a bit more trepidation.  I fear flashing lights, jerking motions and all those other triggers that come along with my migraines.  I also feared the weather, my diet, the stress, dehydration, and exhaustion.

But Tinker Bell sprinkled her fairy dust on me that day and I lived in a fairytale land.  I did however, prepare.  I had water bottles for all of us that I filled at every water fountain I saw.  I didn’t care about how many bathroom breaks we were going to stop at, we all were staying hydrated.  I also brought portable fans for my family that tends to sweat and me who tends to overhead.  I had snacks galore that were healthy and filling enough to stop us from stopping at every food stand we saw.  I had hats and sunglasses for everyone while we waited in the sun.

I didn’t stress at all because we were on vacation, we were together, and somehow I was feeling OK.  OK for me means super duper terrific on a day like our day at Magic Kingdom.  One of my highlights was watching my children meet the characters and waving to them at the parades. IMG_4327IMG_4332

Is there anything sweeter than a tiny hand waving at floats singing to music?  I found myself waving at everyone also, it was contagious. IMG_2246IMG_2186

I actually got to feel like a normal person that day.  I spun around in tea cups laughing and only feeling dizzy.  Feeling dizzy from your kids joyfully spinning you verses feeling dizzy from standing up on an average day is very different.

I felt shaky from my daughter “steering” a car on a track slamming from side to side and laughing from the depths of my gut.  This shaky is wonderful compared to shaking from pain masked by medication yet not masking muscle contractions.

At the end of the day I felt truly tired.  Not exhausted from fighting a migraine, tired from a long glorious day.  I was able to sing with Ariel in her grotto, the way I love to sing (Feeling better makes me sing)IMG_4360

I flew like I could fly

I flew like I had wings.  I took selfies without thinking how my smile was a mask for how I really felt.

The laughs, the joy, the magic was all from a low pain day.  From the opening song that made me feel butterflies in my stomach to the last firework that gleamed in my eye, I was feeling low pain.  Whatever it was; the adrenaline, the preventatives drugs, the preventative living, or  the intoxicating bubble of love and joy, I call it magic!

I could go on and on and on about how our day at Magic Kingdom was one of the happiest I can remember in a very long time (and I consider myself to live a happy life) but I will stop at saying it was perfect. For those of you who can’t relate to a perfect day, I thought it was impossible for myself.  But just like every perfect day comes reality.  Stay tuned for the bad and migraine party of my trip.

Tranquility Salt Cave for allergies and stress relief

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I have had a ton of response about my Himalayan Salt lamp post.  The main question being, “Did it help your migraines?”  The simple answer is no.  With long term benefits, possibly yes?!

After I found that it wasn’t giving me particular relief, I placed it in my son’s room.  My son suffers from seasonal allergies, coughs, congestion, sinus infections and ear infections.    Within 2 nights I noticed that he was coughing less.  I was shocked!!!  My husband (who tends to medicate over natural therapies) saw a difference also.  I leave it on in his room next to his bed and feel that the purifying salt is helping him breathe better and have less congestion throughout the night! YEA!

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After this, I had renewed faith in my Himalayan salt lamp.  After reading the benefits, I realized that it doesn’t help with inflammation which is most likely what is triggering my migraines.  What it does help with is

  • Asthma
  • Seasonal allergies
  • Coughs and chest congestion
  • Exzema and dermatitis
  • Improves lung functioning
  • Sleep disorders
  • Cystic Fibrosis
  • Stress and anxiety
  • Depression

 

With this knowledge, I found Tranquility Salt Cave of Columbus, Ohio.  I had a trip planned to visit a friend in Columbus and I always get sick when I travel.  My friend was traveling from Denver and under stress with a new baby, preschooler, her job and running on little sleep.  I knew I would be suffering from allergies, was experiencing stress and anxiety from my last migraine attack and was ready to try it.

“Tranquility Salt Cave is not your average spa. With the powerful use of salt from the Himalayas, only 45 minutes are needed to feel cleansed, inside and out. With pure salt lining the walls, ceiling, and floor, you’ll experience an effortless and pain-free total-body cleanse.”

Our experience was quite relaxing.  The owners are extremely nice and have a daughter who suffers from migraines also.  They were happy and eager to help me with my issues and hopeful that I would feel benefits from their beautiful facility.

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The salt cave is a beautiful place.  You enter through a grand wooden door walking onto warm salt at your feet.  The ceiling is twinkling with lights in a cave like surrounding. 

“The salt cave is lined with Himalayan rock salt boulders, and literally tons of granulated salt rest on the floor of the cave.  The Himalayan rock salt is millions of years old and it contains over 84 trace minerals which are readily absorbed by the human body. As pure salt is diffused into the salt cave, the healing begins.  Negative ions are released into the air, helping to promote calmness and toxins begin to be removed from the air which you breathe. The salt is anti-bacterial and begins to clear clogged mucous and debris from the lungs.  Skin conditions may even improve after repeated salt sessions.” 

Salt Cave

You find a chair with a blanket, turn off your phone and relax for 45 minutes with meditative music.

My friend and I both found it easy to relax yet difficult with the person snoring next to us.  Next time I think I’ll book the room with more friends and less strangers.  With that being said, it obviously was relaxing.  My friend had been up with a preschooler and baby all night and enjoyed the quiet time.  I used my time to relax from the stressful snowy drive and breathe in the salt to help my allergies from the change of climate.

Overall, it was a time for us to relax, recover and just breathe.  It was a great way to treat ourselves to a spa experience while reaping the benefit of Halotherapy. 

Thank you Tranquility Salt Cave for showing us a spa day can be so much more!

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*I was not paid or given my services for free.  I am writing this review with my own opinions in hopes of shedding light on the benefits of Halotherapy.  Please see a doctor for any guidance in your medical needs and be advised that my experiences are my own.

Axon Optics Migraine Glasses, natural relief

*This post contains affiliate links.  This means if you buy and click from this post I will be compensated by the  affiliate.  This in no way alters my opinion and I only recommend things I use.  I use these often!  I was given a pair to review and have used them often since.

Natural Relief

Before I had children I was a special education teacher.  The years after college; I was teaching, coaching, tutoring, and getting my Master’s degree.  That was all? ha.  At this point my migraines became chronic and pretty much elevated to a new level.  Stress, lack of sleep, noise levels and inconsistent diet triggered me daily.

Along with these were the lights!  I taught in very harsh florescent lighting during the day, coached in a bright gym and sat in front of a computer doing homework or lesson plans.  My eyes were so stressed that I sat in the dark during my free period and had the monitor brightness turned as low as possible.  I didn’t have a smart board at that time but if I had worked with one, I know I would have been pained every time I used it.

This was all before I was given a pair of Axon Optics to review.

I wish so desperately that at that time I had Axon Optics migraine glasses.  They have FL-41 lenses that block  blue-green light which was developed to reduce sensitivity to fluorescent lighting.  They sell a range of products that can fit many eyewear needs.  I found working with the Axon Optics staff easy and simple.  I appreciate this greatly!

I now use them to blog (I’m wearing them now!) and when my photophobia is heightened (which is everywhere!).  I use them everyday.  I wear them making lunches and dinner, doing homework, reading books, doing computer work, going into stores, starting my day (anywhere) and more.  If you see me, I’m wearing them!

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Check them out….. Shop our best-selling migraine relief glasses and sungasses.

 

 

What’s your diagnosis and where does that lead you with Migraine?

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Millions of people are diagnosed with migraine and every case is different.  So what’s your diagnosis?  What’s my diagnosis?  What does it mean to be diagnosed and how does that help?  Here’s my non-medical opinion.

I have my Master’s degree in special education.  It has been really helpful in understanding how the brain works, fails and where diagnosis and treatment can lead.  I think an example that I can best use to describe the migraine spectrum is comparing Autism to Migraine.  

If you have ever met someone diagnosed with Autism, you understand that that person is an individual and like no one else (and aren’t we all?).  Although, these individuals possess some similar factors that place them onto the Autism spectrum.  Does every person with Autism look the same, act the same, react the same, learn the same way, and have the same health and reactions to treatment?  The answer is an obvious no.  Where one person may seem to have some slight social issues and not much more, another individual may need 100% care for various extreme behaviors.  You may have a full conversation with one person and another may be completely nonverbal and ambivalent to personal interactions.  While one person may see improvement with dietary and behavioral therapy others may require heavy medications and need full time care with little improvement.  Everyone is different!

I have seen my neurologist for many years and I decided to ask her what my diagnosis was recently.  I knew the answer was a Chronic Migraine sufferer with neck and shoulder issues caused from migraines which is called Torticollis.  At the beginning, it was important to be diagnosed with something.  It gave me great relief that I, indeed, was sick and not making it up issues as I was led to believe by so many.  With my diagnosis I felt vindicated and believed since I was diagnosed, I would be cured.  Years and years later, I know better.  My diagnosis is no longer as important as my journey.   I have been through so many medications, therapies, and procedures that I’m not as concerned about my diagnosis versus my treatment now.

So why ask about my diagnosis?  Like I said, at the beginning it was huge!  It provided me a starting point and that is what seems to be the best place to start.  Just like people diagnosed with Autism, it’s only the beginning and an idea of where to begin with therapies, tests, treatments and more.  It puts me into a category that I need to find where I fit.  I no longer go into my neurologist to look for a cure.  I don’t think she is going to hand me a script for a pill that will make my disease go away.  I was stuck in this mindset for years! 

I now know it takes work!  Just like in teaching,  I know I can help  at school but work needs to be done at home.  They can’t come to me to solve their shortcomings like I can’t expect my doctor to help me without putting in the work myself.  My diagnosis has become the place I started and the road that I have travelled. 

I helped with the process of diagnosing students and I had parents fight putting a label on their child.  All of us have labels. My diagnosis doesn’t define me.   I think it’s what you do with knowledge of your label and what you do with it.  You have a choice to ignore it, to get more opinions, follow your path, and problem solve along the way.  Once I realized I wasn’t going to be cured and that I needed to fight with a well-rounded approach of many therapies and life style changes, I was empowered.  My label is just part of who I am.  I am a mom, a wife, a daughter, a sister, an aunt, a friend, a teacher, a blogger, a dog and chocolate lover, a travel enthusiast, a Chronic Migraine sufferer and so much more.

What’s your diagnosis? 

How do you feel it defines your journey? 

Bright Snow Glare Triggers Migraine

Braving the blistery winter and snow glare

Braving the blistery winter and snow glare

bright sun and bright snow makes me want to hibernate

bright sun and bright snow makes me want to hibernate

I live in the snow belt of Cleveland.  We currently have mass amounts of snow.  It’s crazy cold out but oh well……I’m used to it.  So we hibernate.  But unlike those cozy, dozy bears, in a dark cave, I am forced to face the dreaded snow glare.  I have windows all over my house.  While they look beautiful, they torture me.  The windows frame a world of gleaming light reflecting bright white snow.  This week we ordered blinds for our windows because when I walk in our kitchen I feel like someone is stabbing me with an ice pick through my eyes extending out the back of my head.   I wear sunglasses in the house most of the time but it still doesn’t touch the nausea and aura the glare forces upon me.  When my children nap I am forced to retire to my room which has blackout shades and curtains over them to provide me the cave I require.

Leaving the house is obviously torturous.  I’m prepared, as always, with sunglasses and a big hood to block out peripheral light.  Driving escalates my pain instantly and without fail.  There’s nothing more I know to do.  I am not a bear and need to take my daughter to school, buy food for my family and do other humanly tasks.  It’s not realistic for me to hibernate.  I’m counting the days until I can make my castle a bit more cave like and for this snow to melt.  Cloudy days, at this point, are my friends and this is not a statement I make often.  It’s a difficult situation when it’s best to stay home yet my home and the snow’s glare make me sick.  This has been a very difficult winter, migraine wise, and this snow needs to go.  Snow, No!  You need to go.

Wondering what my favorite indoor and outdoor glasses are?

*Axon Optics is an affiliate and favorite product of mine.  If you click and purchase from this link you will give me credit for my recommendation.  And I highly recommend it!!!