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.