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…..

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Weather Swings and Migraine

I wish weather swings were as fun as real swings.  The way my kids laugh going up and down, back and forth looks fun.  Instead, the temperature goes up and down making my head sway back and forth.  

Weather is a huge trigger for me!   Living in Cleveland is not ideal for this!  From what I’ve read, it happens most places though, so I’m not going to blame it fully on location.

This week we had a 30 degree shift in two days!  There goes my head.  The barometric pressure squeezes me like a vice.  I have a barometer in my kitchen but I don’t need it because I am triggered before it registers.  My allergies kick up and my head gets so much pressure in it I feel like my eyes are popping out. 

The wind, hail and lightning against my windows gave me generalized pain EVERYWHERE.  The migraine, my joints, my stomach, the fatigue all revolved around the weather.  I’m so much better when it just stays the same.

So how do I stop the weather?  I haven’t been able to figure that one out.  I have no ideas on how to even prepare for the swings when I know it is coming.  I don’t like to take meds to prevent them because I would be doing that several times a day with the amount of triggers I have and the pain state I live.  

So how do I help myself during the swings?  I drink lots of water, keep my rescue meds close by, eat anti inflammatory foods, stay on my sleep schedule, try to take stress in stride and continue to do what I can to brace the not so fun swing I’m about to ride.

Where do you live?  

Do do these weather swings trigger you too? 

How do you deal with weather swings and shifts?

I know I’m not alone! 

Thankfuls to remember and add to


Thank you to everyone who participated in sharing your thankfuls during the month of November.  Here are a few that I hope to look back on during the year to be remind of how much there is to be grateful for!  Please feel free to comment and add on to our list.

“I want to thank you for opening up about your journey.  To find you and to know you can function as a mother, human being and to love life even after 25 years has been so encouraging.  I have not found this before.  But when I have read your blog I feel there is hope as a mother, a nurse and wife.  Thank you in many ways!”

“I’m so happy you made this post!  I think you have the most amazing positive attitude by always seeking out the good things in life despite the pain!  I am exceedingly thankful for the love of my son and two little bunnies who cuddle with me when I need to be touched.  I am thankful that I am able to live near the ocean and travel there to feel the healing power of nature when I need it most.  And I’m thankful for the empowering influence of woman like you on the internet!”

“I am thankful I found your blog!  I think you may be my migraine twin.  As I read your posts, it is like I wrote them.  I am a year older than you but have not had a baby yet, mostly because I am terrified of migraines during pregnancy.  It is encouraging to hear your stories.  Thanks for posting!”

“Thank you for sharing this!   I can relate 100%.   I am thankful for my pain and who I have become because of it.”

“I opened up two gifts this morning, my eyes.  I’m grateful for that.”

“I’m thankful to be alive.  A dear friend is in her final days….each moment spent with her is a reminder of how precious life is, even when living with pain.”

“I am thankful I have great friends that are here to celebrate with me even though we only see each other a few times a year.”

“I am thankful for a full day here and there without a migraine.  I cherish those and makes me more grateful for a pain free day.”

“The roof over my head.  My family and friends that I’m able to advocate for myself and others.”

“I am thankful that I still have my mom alive at 91.  And I am very thankful for my grandchildren.”

“I am thankful for a peaceful room and my medication when I have migraines”

“Bless you for your kind caring heart!”

I am thankful for:

“Loving partner, family friends, warm bed, and migraine awareness spread.”

“My fiancé, my family, good doctors (there are so few).”

“Food!”

“Your blog posts that make me cry”

“Waking up and eating”

“Food, husband, kids, best friend.”

 

“Sow gratitude. Reap. Joy”

What are you thankful 

for?

 

 

 

Chronic Illness Bloggers Holiday 11 Prize Pack Giveaway

Today is the day!

The BIG BIG GIVEAWAY is now ready to be entered!

I have teamed up with over 50 chronic illness bloggers to give away thousands of dollars of prizes!!!! 11 Prize Packs, each with a value between $400 and $600 is ready to be given away!   2 of the Prize Packs are available only to US-based winners.  As winners are chosen at random, if a non-US- based winner is chosen for one of the US-only prize packs the winner will have the option to either have the prizes shipped to a US address of their choosing or to forfeit the prize. Enter below….

Many of the products I have tried and love and some I’d love to win for myself!  This post contains affiliate links.  This means if you buy something I recommend, I get credit for referring you.  Here’s the list of prize packs.  Take a look and enter to win here!

FULL prize pack information

Sponsor List:

The giveaway will run from Nov. 23 – Dec 3, 2016.

!!!!!!!!!!!!!!!!!!!!!!Enter here!!!!!!!!!!!!!!!!!!!

Good luck!!!  Please share this post on Facebook and twitter.  So many people suffer (in silence).  You may never know who you are helping!!  These products are known to help:

ADD/ADHD, allergies, Ankylosing Spondylitis, anxiety/ depression, arthritis, autoimmune disorders, Bell’s palsy, bladder issues, Brain Tumors, cancer, Celiac’s disease, Cerebral Palsy, CFS/ME, chronic pain, chronic pancreatitis, cluster headache, colitis, Crohn’s disease, CRPS (xomplex regional pain syndrome), diabetes, digestive disorders, dysautonomia, Ehlers–Danlos Syndrome, endometriosis, epilepsy, fibromyalgia, gastroparesis, heart disease, Hodgkins lymphoma, Inflammatory bowel disease, Interstitial Cystitis, irritable bowel syndrome, lung issues, Lupus, Lyme disease, Meniere’s Disease, mental illness, migraine, Moebius syndrome, Multiple Sclerosis (MS), Myasthenia Gravis, neurological disorders, Parkinson’s, Polycystic Ovary Syndrome (PCOS), Postural Orthostatic Tachycardia Syndrome (PoTS), Psoriasis, PTSD, rare disease, Rheumatoid Arthritis (RA), Sacroiliac Joint Dysfunction, Scoliosis, Sjorgrens, sleep disorders, Still’s disease, thyroid disorders, TMJ, Venous thromboembolism (VTE), vulvodynia

Monday Munchies and Meals: Pumpkin Oatmeal

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This week I was sick! I mean, really Migraine sick! It lasted an entire week and fluctuated from a 6-10 on the pain level scale. For anyone who has not lived at a 6 (feeling good) for a week and spikes of mostly 8 and 9, it’s not only hard physically but mentally! No matter how much I slept, I’m still exhausted. I spent most of the week in my dark room, throwing up, missing work, missing the Indian’s game, time with family and time from my life. It was miserable!
When I’m in a cycle of pain in a Migraine cycle, I also cycle my eating. I go from eating and craving everything in sight to not eating at all or throwing up what I eat. This is a harsh cycle because I’m triggered by food that I eat yet crave it horribly when I’m sick. I get so nauseous that I allow myself to eat whatever tastes good. Then I either throw up or my migraine spikes without getting physically ill  which in turn makes me sicker. It’s a loose loose battle.
So when I woke up on Sunday morning, I prepared my Monday Meal, pumpkin oatmeal. What better way to ease myself into food than this nutritious and easy recipe? I liked the idea of starting my day out, motivated to finally defeat this cycle and get ready for a new week. I was excited to spend some quality quiet time with my babies and so were they.
We gathered the ingredients and it only took about 10 minutes to make! I wish I would have made a double batch so we could have had more the next day for breakfast also (school days I do quick breakfasts and keep it moving).
After we made the oatmeal with pumpkin, I laid out some toppings to give each child more ownership and incentive to eat what they just made. They chose walnuts, craisins, and maple syrup. I have to say, it was delicious!
So for those of you who are struggling this week, this one is for you. Remember that different foods trigger different people and only you know what ingredients are best. This is an easy meal or snack that only takes 10 minutes. 10 minutes is enough for this week. I’ll take what I can get and hope for a better week. So far so good……

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Here’s the recipe: Pumpkin Pie Oatmeal 

Real Hope, Real Heroes

The INvisible Project creates pain awareness through the photographs and stories of real pain survivors. At last year’s Real Hope, Real Heroes Gala, this video titled “In Their Own Words” was featured. It highlights the intent of the program and what having an invisible illness means to them and impacts their pain journey. U.S. Pain challenges you to:  -Watch this video of Real Heroes within our pain community: https://www.youtube.com/watch?v=hc51H0tj4z8

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This post is inspired by Pain Awareness Month 30 day challenge run by U.S. Pain Foundation

Music Therapy: Chronic Pain, Migraines, Children and Special Needs

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I have experience teaching children with severe special needs.  It was an extremely difficult job while so rewarding at the same time.  During my time teaching these special children, they received Music Therapy.  I have written about how much music helps me (feeling better makes me sing) but have seen the actual clinical side of how it can benefit many.  The American Music Therapy Association has provided fact sheets and extensive information on music therapy.

After reading many informative articles on Music Therapy, I thought I’d share some information I found intriguing and hope you will follow the links to learn more about how Music Therapy can benefit so many.

Music therapy is using music to address physical, emotional, cognitive and social needs of an individual. Treatment includes creating, signing, moving to and/or listening to music.

Music therapists are more than music teachers.

To be a music therapist, one must “complete one of the approved college music therapy curricula (including an internship) are then eligible to sit for the national examination offered by the Certification Board for Music Therapists. Music therapists who successfully complete the independently administered examination hold the music therapist-board certified credential (MT-BC).” [1]

What can one expect from a music therapist?

“Through a planned and systematic use of music and music activities, the music therapist provides opportunities for:

  • Anxiety and stress reduction
  • Nonpharmacological management of pain and discomfort
  • Positive changes in mood and emotional states
  • Active and positive patient participation in treatment
  • Decreased length of stay

In addition, music therapy may allow for:

  • Emotional intimacy with families and caregivers
  • Relaxation for the entire family
  • Meaningful time spent together in a positive, creative way” [2]

How does music therapy make a difference for medical patients?

“Music therapy has been shown to be an efficacious and valid treatment option for medical patients with a variety of diagnoses.  Music therapy can be used to address patient needs related to respiration, chronic pain, physical rehabilitation, diabetes, headaches, cardiac conditions, surgery, and obstetrics, among others.  Research results and clinical experiences attest to the viability of music therapy even in those patients resistant to other treatment approaches.  Music is a form of sensory stimulation, which provokes responses due to the familiarity, predictability, and feelings of security associated with it.” [3]

Not only am I interested in how it can help migraine and chronic pain sufferers, but I am also interested in how it can help children.  I am a firm believer in teaching children through music and think it can benefit them for mild to severe needs.

How Does Music Therapy Make a Difference with Young Children?

“Music stimulates all of the senses and involves the child at many levels.  This “multimodal approach” facilitates many developmental skills. Quality learning and maximum participation occur when children are permitted to experience the joy of play.  The medium of music therapy allows this play to occur naturally and frequently. Music is highly motivating, yet it can also have a calming and relaxing effect.  Enjoyable music activities are designed to be success-oriented and make children feel better about themselves. Music therapy can help a child manage pain and stressful situations. Music can encourage socialization, self-expression, communication, and motor development. Because the brain processes music in both hemispheres, music can stimulate cognitive functioning and may be used for remediation of some speech/language skills.” [4]

Natural treatment

“Research in music therapy supports its effectiveness in many areas such as: overall physical rehabilitation and facilitating movement, increasing people’s motivation to become engaged in their treatment, providing emotional support for clients and their families, and providing an outlet for expression of feelings.” [5]

 

This post is inspired by the U.S. Pain foundations 30 day challenge during pain awareness month (Septmeber). The focus of the challenge is a month of empowerment!

For more information on how you can participate and support the U.S. Pain foundation please go to: http://uspainawarenessmonth.com/30-day-challenge/ #PAM16 #PainAwarenessMonth #USPain

For more information on Music Therapy please go to the referenced links or visit: http://www.musictherapy.org/about/musictherapy/

References:

[1] http://www.musictherapy.org/faq/#39

[2] http://www.musictherapy.org/assets/1/7/MT_Medicine_2006.pdf

[3] http://www.musictherapy.org/assets/1/7/MT_Medicine_2006.pdf

[4] http://www.musictherapy.org/assets/1/7/MT_Young_Children_2006.pdf

[5] http://www.musictherapy.org/about/musictherapy/