Chronic pain is too much for too long and too often

Image-1

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…..

Advertisements

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.

Emotions triggering migraine (sadness, stress, excitement, anticipation and more)

Image result for scarlett o'hara i'll think about it tomorrow

This summer was fun, fast and filled with migraines.  In the last few weeks, my emotions have been building for the fall excitement.  My first child is entering Kindergarten.  For some that may not be a big deal, but for a stay at home mom it’s momentous.

On top of this momentous moment, I am also starting a job after 6 years.  Over the last 6 years my only focus has been on my babies, family, dog, and home that we make.  It’s the biggest and hardest job to stay home and I’m so lucky to have had the opportunity.   One of the luxuries of staying home is that I can deal with my migraines on my own.  With a job, my migraines are public and open to scrutiny.   Absences require subs and placing responsibilities on others.  The stress of missing work, throwing off schedules and not being a good employee is huge!  I love the position I was hired for and really want everyone to grow and thrive.

So between the stress of starting a new job, the devastation of my baby leaving me all day and a change in our whole dynamic, I’ve been walking on needles to avoid a migraine.  Here’s the thing with migraines, they don’t care who, what, where, when or why you don’t want it, it comes!  In fact, sometimes it feels like my migraines know the worst time and hits me right then.

That’s because emotions trigger migraines!  All emotion filled events I get a migraine anticipating, during, or after the event.  I have had one on most holidays, many weddings, baby showers, birthdays, concerts, sporting events and more.  Events bring migraines, change brings migraines.

So with all these events and change, I have tried to numb my emotions.  I remind myself of Scarlett O’Hara saying “I’ll think about that tomorrow.”  I haven’t allowed myself to fully feel the change because I just can’t.  I cried a bit when I dropped my daughter off but had a staff meeting and needed to pull it together.  I didn’t sleep the night before and lack of sleep is another trigger I was trying to deal with.

The excitement of my job is huge and setting up is a trigger also.  The heat, the lights, the cleaning, and the reorganization takes a lot.  It’s all wonderful and fun but those things can also be a trigger.

So I sit here thinking to myself, how do I fully feel these emotions without being sick?  I can’t.  I can’t sit and cry about how yesterday I was holding my baby in the hospital and now she’s waving goodbye to me for the day.  I have been with her, planned every event and known exactly where she is for the past 6 years.  Now I just wave and don’t hear from her for almost 7 hours!  The worry just sends me through a tail spin.

Next I throw myself into a new job and I don’t have time to be in my dark room.  I need to be planning.  Once I’ve planned I need to be well enough to fulfil those plans.  I have such high hopes and my ambition scares me in that I will not be able to live up to it.

Bottom line is, emotions trigger.  I can’t imagine being able to feel how I feel and not worry about it.  As if emotions aren’t complicated enough, controlling them is imperative.  So I’ll just worry about that tomorrow, shake off those tears, numb the fears and just keep swimming.

What do you do to control your emotions from triggering you?  How do you do it?

Image result for scarlett o'hara i'll think about it tomorrow

 

 

Cold vs Migraine

I rarely get colds. I jokingly say that it is too small for me.  I am allergic to viruses and get very sick when I contract one.  I react harshly to medications so colds just seem not that bad to me.  I have been burning my candle from both ends, so to speak, lately and got a cold.

The first day I was wiped out with no energy, lost my voice, and was overall down and out.  The following days I continued to cough a lot and have other various cold like symptoms.  I have to say, colds are no fun and I’m glad I don’t get them often.  It really is more annoying than anything else though.  I was just ready to be over it.  I could continue on with my life but slowed down a bit.

Here’s the difference between a cold and my everyday life….migraines!  I tried not to take a lot of over the counter cold meds because I really don’t like to take OTCs in general.  I lived a period of my life getting rebound headaches not understanding the repercussions of OTCs and I have not taken them since.   So med free, I had a coughing fit one night.  This fit triggered a migraine and I immediately went into abort migraine mode.

I actually thought to myself, “wow, a cold is annoying but a migraine sends true fear through me.”  The proverbial trick or treat.   A cold is no treat, but with a migraine looming I took it as one.  My trick being pain, pain, pain, and I wasn’t falling for it.  I had  balking at taking meds all week but once the migraine hit I immediately took what I hoped would be effective.

With the coughing, lack of sleep, stuffy head/sinuses and so on, I knew a migraine would not be far away.  So why can’t I just get a cold?  Like I said, it’s no fun at all (especially with 2 children that take advantage of not hearing my voice) but I almost felt normal.  I actually got a normal thing that everyone gets and was having a normal reaction.

But back to reality.  Luckily for me my meds worked and I avoided a head banger of a migraine and throwing up pain.  Yea for me because my throat was already stripped.

Bottom line being, colds are ok, migraines are not.  I actually felt relieved in the morning when I didn’t have a migraine yet my voice was gone, my stomach was crazy nauseous and my body was weak.  How was that a relief?  I was relieved that my normal migraine life was more miserable than a cold  and all I had was a cold.

Oh the life of a migraine sufferer.  Only I would be ok with having a cold.  Not happy, but ok, and I’ll take that for today.

Getting to know My Migraine Life


After a month of advocating for Migraine and headaches, I thought I’d let you get to know ME a bit better.  Please feel free to answer these questions and tell me a bit about yourself also.  Here’s some things you may not know about me.

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic migraine
2. I was not diagnosed until years after my first migraine.
3.  I had symptoms since: probably the day I was born or soon there after. I had my first migraine when I was 5 that I remember.
4. The biggest adjustment I’ve had to make is: being prepared for it to hit at any moment, anywhere.
5. Most people assume: that it’s just a headache
6. The hardest part about mornings are: waking up. I have a headache everyday when I wake up and the direction of my pain level dictates my day
7. My favorite medical TV show is: Gray’s Anatomy
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: going to sleep. I love to sleep to escape the pain but my eyes flutter open from the pain and it takes me a while to fall asleep.  By the end of the day my migraines escalate to levels that require peace and quiet
10. Each day I take the least amount of pills that I can & vitamins in order to survive.
11. Regarding alternative treatments I: do as many as possible to hopefully cut back on meds. They help minimally, but I do whatever I can to help myself naturally.
12. If I had to choose between an invisible illness or visible I would choose: no disease. It is actually helpful at times that I can hide my pain but also leaves me vulnerable to judgment. I don’t know how it feels to have a visible disease and I’m sure that just as many problems arise with it.
13. Regarding working and career: I used to be a special education teacher and the stress triggered me into missing many days and was criticized for having my own special needs. I now stay at home with my children which allows me flexibility but no breaks. I literally live, eat, sleep and breathe my children and even if I’m crazy sick, they are still my responsibility.
14. People would be surprised to know: that I am chronically ill. I hide it really well (the best that I can) so my children and friends don’t worry about me.
15. The hardest thing to accept about my new reality has been: it’s not a new reality. I’ve lived with it my entire life but have never gotten used to it. It has changed as often as I have since I was 5 and it is constantly a trial and error to give me some kind of normalcy.
16. Something I never thought I could do with my illness that I did was: go to college. I say this in hindsight because I was naïve in thinking that I would be fine when I left from my family and doctors. I have read how so many people have had to drop out of school and how it affects their education. From hearing others stories I am most grateful that I was able to be educated and enjoy college life at the level that I did.
17. The commercials about my illness: make me roll my eyes and give sarcastic comments. See my thoughts in Excedrin migraine commercial 
18. Something I really miss doing since I was diagnosed is: being carefree. I don’t remember a time that I didn’t have migraines and I live each day thinking and dealing with them. To not have to think about my chronic condition would allow me to live much differently.
19. It was really hard to have to give up: drinking, foods, nights out, events etc. I miss out on a lot and even more if I’m not cautious
20. A new hobby I have taken up since my diagnosis is: blogging. I find it meaningful to help others and in return learn about myself and sort through what I’m dealing with.
21. If I could have one day of feeling normal again I would: (see) https://mymigrainelife.wordpress.com/2014/06/02/what-would-you-do-if-your-dream-of-a-pain-and-a-completely-symptom-free-life-came-true/
22. My illness has taught me: that I’m stronger than I think and that giving up is not an option
23. Want to know a secret? One thing people say that gets under my skin is: it can’t be that bad.
24. But I love it when people: say they enjoy my blog. I feel like I’m making a difference with positive feedback.
25. My favorite motto, scripture, quote that gets me through tough times is: live like  you are dying.  I never know when I’ll be locked in my cold dark room and I do not take low pain days for granted.
26. When someone is diagnosed I’d like to tell them: I’m sorry. It’s a journey.
27. Something that has surprised me about living with an illness is: how many aspects of my life that it effects.
28. The nicest thing someone did for me when I wasn’t feeling well was: a lot. I am surrounded by love and have an army of people who fight for me. I feel so sorry for people who are unsupported and alone with this already isolating disease.  Love won’t cure me, but it has healed me.
29. I’m involved with Invisible Illness Week because: bringing awareness is important.
30. The fact that you read this list makes me feel: special. There is a lot to read and do and the fact that you read about me is special. Thank you for reading.

Tips for sleep, rest, insomnia and Migraine

cropped-img_25481.jpg

I had a horrible sleep last night.  And to add to it, we lost an hour!  Sleep is so important for so many reasons.  My body is constantly fighting pain.  As you can imagine that makes me exhausted.  Sleeping and down town time are  both forced upon me and required to recover or survive.  It’s forced upon me by extreme nausea, joint and muscle pain, the intense sensitivities and of course the  head pain.    Giving myself a comfortable place to rest and sleep is important.  Blackout shades plus curtains help when even the clock on my tv is too bright.  I have yet to find a perfect pillow I love, but I love my bed!  We have a Christeli and it is amazingly comfortable.  I get CRAZY hot when I sleep.  My husband can feel my body radiate heat.  My Christeli mattress  sleeps cooler than our last bed, it relieves joint pain, and when I’m moving around my husband isn’t being disturbed. It is difficult for me to fall asleep in general.  Sometimes the pain flutters my eyes open and my body clenches so it’s hard to relax.   I have eucalyptus hand lotion, peppermint essential oil and water on my night stand to try to relax me.  I find that I tend to breathe deeper and slower with these things.  Everyone’s preference for smells is totally unique though. Sometimes they help me, other times the smell of anything makes me sicker.   I typically take my meds, drink some water, ice, and hibernate.  I lay under the blankets to eliminate more light and sound and sometimes pile pillows on top to have added pressure.  All of these things give me the needed rest that I require.  Being in pain is so grueling and giving the body a chance to recover is crucial.   I don’t think people fully understand the need for rest, sleep, and a chance to eliminate triggers.  A calm environment allows my brain to relax after being in constant overdrive in my loud, bright, motion filled life.  I need sleep, rest, and a cave.

Himalayan Salt Lamp for migraines

 

IMG_5134Several months ago I bought a Himalayan salt lamp.  I read about them and the possible benefits so I thought I’d try.  Sometimes I talk about things I love and I try a ton of things that I don’t.  I am always searching for something to help.

From what I read, it could possibly help purify the air, reduce allergens, increase mood and more.  If you do a search on it, you can find a lot of information.  I wake up and go to sleep with some form of headache every day so any thought in easing those times is appealing.  I leave it on my nightstand and the light is adjustable.  I have used it on high while I typically have ice or shade on my eyes.  I also use it on low when I’m awake laying in my room. I keep it on most of the time.  It has a soft pretty glow that relaxes me.  I have not felt a reduction with my migraines but I do like it.  I have a lot of products that are thrown in the closet or thrown away.  I had no expectation that it would make a big difference in my migraines but it’s not a product that I don’t use.  I feel like it could be benefiting me in me in some way if only to be a soft pretty light that comes from nature.

I have since explored the benefits of Halotherapy more….Read more here