Feeling Brand New

Went to bed last night feeling a bit down and disappointed.  Spent my dreams in a trapped state, unable to change them or emerge from them regardless of waking and returning to sleep.  Slept too long and felt sluggish after waking.  THEN immediately did 90 minutes of yoga and FELT BRAND NEW!!! 
Mood is happy, disappointment is a memory, trapped is fiction.  Just lovely to be able to choose to do an activity that I CAN do which will enrich my life so much.

Have happy days!!

Cousin-blog

A place to share my collection of the recipes which have saved me and my lil' head.  
triggerfree.blogspot.com  We can call it our cousin-blog.  :)

Practicing what I know

I have been struggling for a couple of weeks with feeling lonely and forgotten.  During this winter, most of my friends and neighbors have been ill at some point and, I have kept a distance in order to preserve my health.  But, the result has been that I really only have interaction with my husband and on the phone.  I did not want to recognize the loneliness becuase it reeked of self-pity to me and I was ashamed of it.  But the fact is that what I feel is the TRUTH of me.  It is information that I can use to take an informed step.  I attached the self-pity label to it, no one else did that.  Finally yesterday, I shared these feelings with 2 people.  They discussed it with me briefly so that I knew I had been heard and understood.  No solutions were found.  But, I feel SO much better today.  I know my soul works this way but I forgot. 

Just in recognizing and, more importantly, validating what I felt, the isolation and loneliness, I was able to handle it.  It became something I could work with and mold instead of something hanging over me out of reach and menacing.  It helped me deeply to speak of it and own it.  Last night's dream was of me, with my current condition, as the most important person in a huge crowd of people.  Admired and cherished by them all.  Many went to personal trouble and sacrifice to help and protect me.  None tried to fix me, they just endeavored to make my life easier in the face of the fibro.  I woke with a smile on my face.  I dreamed myself as I am.  Loved by many and far from forgotten.  And so today, I reflect on practicing this validation of what I feel, whatever it is.  Only then can it be held and owned and dealt with.  And learned from. 

My mood is far better today.  I am still here by myself, no one is calling, but I am at peace and not missing people.  I am far from self-pity.  I am grateful for the insight and my huge list of blessings.  All because I admitted something that is normal.  Loneliness is normal. 

Forgetting the symptoms. Victory and Defeats.

It is, of course, a biological necessity that we, as humans, forget physiscal pain.  We can remember easily heartbreak.  Also, mental and spiritual pain.  But, not physical pain.  We forget it so that the species can multiply.  This is the victory for us.  The victory that keeps our species afloat. 

I have had very light and manageable symptoms for several consecutive months.  Some fraction of this is due to action I have taken.  The rest is out of my control. 

Yesterday, I could barely walk and had to resort to using my wheelchair for the first time in about 3 months.  The pain I felt seemed brand new, like I had never felt it before.  Like something new must be wrong.  This is the defeat.  I am forced to remember that this pain is my NORMAL.  I am guided by the Holy Spirit to thank God for the few months of relative relief and assured that I know how to carry this burden.  Of course, I don't want to.  But, that is neither here nor there.  And so, I go through my day that day trying not to feel confused about what is occurring.  My moments of clarity are just that, brief 5 second intervals every few hours where I can wonder what has happened to me today.  But, the clarity is gone long before I can verbalize my distress over it.  My brain is coated with a very thick layer of vanilla frosting.  Impenetrable.  I can't get through it to the info I know is there. 

I'm relatively proud of myself about halfway through the day because I have not let the pain change my mood much.  This really is a victory.  And here is another defeat.  Other people, people close to me who know about my health, ask why I'm in pain that day.  As if the months of lighter symptoms mean a cure or some healing or something.  As if I did something to bring on the layer of frosting on my brain.  As if there is always going to be an explanation for every time I can't walk.  It is incredibly frustrating and distressing to feel like I have to explain to others, who aren't living in pain, what is going on in my body.  The simple facts are that medical science doesn't really know what is going on in my body, so how am I supposed to answer the WHY question?  Yes, it is true that I do try very hard to control what I can control in my lifestlye, diet, associations, household chemicals, emotional support, etc.  I try VERY hard to prevent symptoms from on-setting and especially from getting bad enough that I want to turn to tranquilizers to get through the rest of the day.  But, I am not able to control all of what happens in me.  And on days when I can barely think clearly enough to brush my own teeth, to have a relative say, why Marie, what's going on?  is infuriating. 

So, today, when symptoms are lessened a bit and I am thinking, I pray that the Lord helps me to inform folks that I have not brought this on myself and it is important not to imply such a thing, especially at a time when it would be so easy for me to turn to self-pity and depression.  The things to be saying to me on those days are, you have gotten through so many of these days so beautifully.  Let's say a quick prayer that tomorrow is a bit better for you.  Anything like that.  But, don't ask for an explanation.  I don't have one and I don't know if I ever will.  I'm not sure how to get this message out to them.  I'm not sure they will even listen or care.  But, it is a way for me to advocate for my own welfare, my self-care.  I need to figure out how to help them know that just because I haven't complained for a few months does not mean I'm now well.  I truly do try to make the most of every second that I feel relief from pain but, I should not be put in a position to explain myself when pain returns.  JMHO.  It's demoralizing. 

Grateful to God that this too, will pass.  A distressing situation.  Sometimes constant pain seems like it would be preferable in that it would be easier for others to understand me.  But I would never wish that, not on anyone.  God understands me.  My husband, too.  A very small handful of others.  That is enough. 

New Year Progress

Went to a consult with a new GYN yesterday.  Upon walking in the offices, I smelled the air freshener.  It was a Scentsy.  Historically, this would have caused an almost instant migraine, chased me out of the building and probably cancelled the appt and searched for a new doc.  Yesterday, I was able to really observe my progress in symptom control.  Not only did I wait for the appt, the exam room I went to is the one that the Scentsy was in.  The smell was so strong.  Naturally I had a headache.  But not a migraine yet.  I was able to converse with my new doc, btw, one of the best I've ever seen, and then wait another 45 min in the lobby again for my bus to come.  Of course, I was wearing my sunglasses and nibbling on my foods to try and keep symptoms under some semblance of control.   At home, the smell was deep in my clothes, in my hair, and on my skin.  It was intense.  Previously, this would probably have led me to vomit and then bed with unimaginable pain.  But yesterday, I was able to stay awake and enjoy some time with my family.  Yes, I had to change and bathe, and wash my hair and use sunglasses and cold packs on my head all evening.  But, I still got to be with them.  A heart so full of gratitude.  I am going to call the doc offices and suggest they tone down the smell somehow.  After feeling so long like I have been robbed of so much, it is fantastic to now see that my embracing a hard change empowered me to be able to get some of my time back. 

Remember that wherever you are in your journey, later, you will have moved to a different place.  I see now that coping is not as hard for me as I remember it being in the past.  I am better at it.  More practice. 

The voice of pain

So, lying in bed just now on Christmas night, I have just realized why pain is so scary.  It makes me feel unlovable.  It makes me feel ugly and lonely.  It makes me feel isolated and unworthy of goodness.  None of those feelings are valid.  None of the statements true.  But, even though I was in touch with many people who love me today, I lay there feeling utterly lonesome and forgotten.  The pain has a voice of some sort that separates me from the rest of the human race.  I am different.  I am so different as to be not understood by anyone.  It feels like I am a soldier who has fallen behind enemy lines and I'm being fed propaganda by my body about myself.  I'm not bad or deserving of this.  I begin to think along those lines though, even though I know that is not the truth. 

Tonight's symptoms are severe and due to about 3 issues.  First, it is snowing out.  Clearly I can't control that.  Second, my blood is surging with hormones.  Also, uncontrollable.  And third, and this one makes me mad, the turkey I made for Christmas dinner had MSG in it.   I had two servings of it today and haven't had a migraine this severe for over 2 months, the duration of my diet change.   I'm bitter that our food supply has these chemicals in it that make me sick.  What the heck?  I'd be healthier if I lived in some other era before all the available food was tainted with "natural flavors".  Of course, since I require air conditioning, I couldn't easily make it in any of those eras and, it is empty wishing anyway.  I live now.  I just hate that I am so vulnerable to crap.  I feel abnormal.  Thinking of the millions of people who ate a holiday meal today and did not get sick from the chemicals in it.  About 87 flavors of unfair. 

Trying to focus on the blessings and the positive, I go down the very long list of what I have to be super grateful for.  These symptoms this evening will wane.  I am frustrated right now because I can't find relief.  I am in too much pain to sleep and there is nothing to take for the migraine.  So, I'm just stuck.  And it is a lonely feeling.  No one else even knows I'm in this much pain.  Why should they?  It is not theirs.  It is mine.  So, I will try to bear the burden tonight.  I will try to pray some more but, it is very hard to concentrate. 

Remind myself to only think the truth.  What is true?  I am very loved, very valuable, admired, appreciated, and important to a lot of people.  I am capable of handling tonight's dose of symptoms.  I have done it before.  They are temporary.  This is not bigger than me.  I know from my own historical data that I can successfully endure before I finally fall asleep without losing my mind.  Also true is that I'm sensitive to everything.  Not vulnerable.  And I am not lonely.  Also, I think I am not more different than other individuals are from each other.  So many people struggle with so much.  I have a health struggle.  I am not a closet kleptomaniac.  I'm not worried about my minimum wage job.  I'm not eaten up with jealousy.  Not having an affair in order to feel something.  Etc.  A lot of people struggle.  Mine is physical.  If that was all, it would be easier.  But, pain's voice is toxic.  Trying to get me to believe untruths.  Wicked, wicked pain. 

I hope someday our food supply is free of chemicals that make people sick.  I pray for it. 

The Book That Changed The Game

So, sometime last summer, my friend Trish mentioned to me that she saw someone on the Dr. Oz show who talked about food triggers and migraines.  I promptly forgot about that comment until about the end of September when I had suffered a migraine almost every day since early August.  My medicine, which usually worked, stopped working.  I was desperate.  So, one morning before the cycle began, I remembered this comment, and googled the item.  What I found was a book called Heal Your Headache - The 1 2 3 Program For Taking Charge of Your Pain by David Buchholz, MD.  I ordered it and had read it in the next several days.  This program is the reason I feel so well these days.  I followed the instructions to the letter, and still do.  It isn't easy, and especially in the beginning, it is not for wimps or complainers.  But, I highly, highly encourage any who are suffering migraines to read it. 

Briefly, I had to stop taking all my migraine meds and OTC stuff for headache cold turkey.  Also, pretty severe omissions from my diet.  All caffeine, including decaf stuff, almost all processed foods, most cheeses, yogurt, nuts, citrus fruit and juice, onions, tomatoes, are about half the list of stuff that are no longer part of my diet.  I eat fresh food and I cook about 3 times as much as I used to.  But, I feel well more.  Quality of life is WAY higher.   And, I know right away when I've made a mistake with the diet since I get a migraine about 4-5 hours after eating.  Eating out is a challenge.  I basically take a thermal pouch filled with food I've prepared almost every time I leave the house just to be sure I'll have safe food in case I'm out longer than I predict. 

It is true that I have given up on what I see as tastier food.  I have made this sacrifice voluntarily.  It is good for my body.  When I eat the other stuff, I stay sick (migraine and other symptoms) and I suffer for it.  No amount of chocolate is worth the pain it used to bring on for me. 

Here is the HUGE benefit.  The clean-up of my diet has lowered my physical pain level.  There are some days when I'm not in pain much at all.  I could not say that before.  I used to rely on a cane and used a wheelchair about 25% of the time.  Now, I am so much more mobile.  I have not sat in my wheelchair since beginning the program.  One time, I left the house and forgot my cane.  That says volumes about how much better I'm feeling.  I have been on it for just over 2 months. 

Please read the book.  There is so much junk in all that packaged food.  Just omitting MSG alone is hard because it's everywhere.  I now cook out of only a few cookbooks and one is especially for migraine trigger free cooking.   I make my own bread, potato chips, granola bars, instant oatmeal, crackers, and lots of others.  I have found it to be fun now that I am past the pain in the butt part of it. 

Happy, Happy Days All!