Friday, June 23, 2017

Neurofatigue

A friend of mine recently had brain surgery.  Sharron had a smallish...boulder size tumor sitting on top of her optic nerve that she had a horrible time getting anyone to listen to her about needing help with.  After about 5 months of headaches and putting up up with the damn thing the doctors at Stephenson Cancer Center in OKC listened to her and removed the darn thing.  It was benign but still a relief when it was out!  I love it when someone tries to explain away a benign something as not being as bad as a malignant something.  Malignant means it can spread other places while benign means it usually stays in that one spot.  Her tumor kept growing and like with malignant tumors there is only enough space for the brain and not much else so she was having a horrible time.

Did you read the spoon theory post before this one?  The one on fatigue?  Well Sharron posted this article on Neurofatigue...and the invisible consequences.  It is another example of neuro fatigue and some good hints on how to combat it.  Most brain injury people have some degree of this type of fatigue and it would only stand to reason that people who have fibromyalgia or other diseases that affect the brain would too!
Don't you love this little guy and his depiction of Neurofatigue?  Do you ever have days like this?  I know I do!  Call be a bowl of melted jelly and you have the description correct!  I can't stand light, noise, heat, cold, I turn off the TV, radio, computer everything.  I am not feeling feel well at all and can't stand any outside stimuli...all I want to do is veg out in my bed!

The article talks about different things you can do to help with the fatigue and get the rest you need.  Check it out it is worth the read!

Thursday, June 8, 2017

Spoon theory

In an earlier post I wrote about the spoon theory but can't seem to find it now!  I thought I would rewrite it in hopes that if anyone is having issues with their disability this will help them understand it better.

There are a lot of articles out there and a lot of people that are claiming ownership of the theory but it truth it has been around for a long, long, long time!  Wikipedia says The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.   According to Wikipedia the term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory" that she posted on her website ButYouDontLookSick.com   

When I first 'came down' with Fibromyalgia I tried to keep on keeping on doing all the things that I had done all my life.  I found out pretty quick that was a road to disaster for me and I would find myself doing more harm then good.  I just couldn't believe that my fatigue, brain fog, etc was anything more then my working too many extra shifts at the hospital so I cut them out and I still had issues.  I figure I must have been issued 100 spoons a day back in the old days but when I got sick in 2009/10 someone stole 95 of spoons and left me with only 5 and left me wanting/needing more.  I found out really quickly that I couldn't cook dinner, vacuum, do laundry, go to the store, or garden all in the same day!  Dinner usually took a spoon, laundry about 3, shopping at Walmart all 5 and forget the garden unless I broke it into manageable bits.  I learned that I had to prioritize and schedule time to rest and recover or I flared up and stayed down for days and sometimes weeks.

Simple things like getting a shower and getting dressed some days took all 5 spoons and I climbed right back into bed!  It has taken me years to finally learn to manage my spoons and cope with life.  I used to feel so guilty that I am unable to do things I used to do.  I have found out that I have to be the #1 priority in my life or nothing gets done.  I have lost friends because they seem to think I am a flaker and not being truthful with them about how I feel and why I can't donate time and energy to stuff I used to do routinely.  Their loss cause on my good days I am still awesome!  I can't hike or even walk through Walmart anymore without using up my allotment of spoons.  Luckily as time has progressed and I have learned to manage my spoons I have gotten more spoons and the ability to do more.  I will never be back to 100% but I am better!  I live each day at a time and I never count on the same number of spoons to spend in a day because if I count on 20 I end up with 5 or vice versa.  I am a spoonie (embrace the spoon theory) but there are some that aren't.  I read this article on The Mighty the other day my Jennie Small entitled Why the Spoon Theory Doesn't Fit My Life and she has a valid point...it isn't for everyone!  That is something else we need to remember...there is no one fixer upper for any group of people because we are all so different.  We need to be tolerant of the difference.

I just read an article on Spine Universe that says Fibromyalgia is a real disease...hmmm...I could have told them that!  The article titled

Fibromyalgia Study: It's a Real Disease

The article talks about research being done by Dr. Guedj of the Centre Hospitalier-Universitare de la Timone in Marsaille France.  Dr. Guedj was the lead researcher in a study examine blood perfusion (abnormal blood flow) as possibly being the cause of fibromyalgia!  I am really excited about this because if proven positively they will start researching why there is abnormal blood flow and we will get to the bottom of the cause of fibromyalgia.  

Right now Fibro and all its pain is merely a syndrome and not considered a real disease and I can tell you from personal experience it can cause all sorts of havoc in your life being "not real!"  What kind of problems...well if I go to the ER I feel I get treated different with the diagnosis.  I definitely have fibromyalgia cause I participated in a study where they drew lab and I was 100% positive...some were only 80% or less.  The lab is only available for research purposes right now but hopefully will be out on the market in the future.  

My proof I get treated different comes from years as working as an ER nurse.  I went in with Chest Pain and when the triage nurse found out I had fibromyalgia I was given a seat in the waiting room and not put on a monitor or taken taken to an exam room.  If I had not had that diagnosis on my chart  I would have been treated much differently and would have been taken to the back immediately!  Fibromyalgia patients are considered drug seekers and treated much differently... I actually was told I needed to lose weight and exercise more and my pain would go away! Well...doctor...I don't think so!  

Anyway read the article...it is a possible reason for Fibro and still under research!  








Thursday, January 12, 2017

OMG! and all at once it is 2017!

I have an awful head cold and I am flaring up with my Fibro and unable to sleep.  OH NO!  Yes it means I get on my computer and start spewing forth shit that normally stays dormant.  I have been having fibro issues for a couple months now...ever since the presidential elections!  I know!  Stress plays a big part in my flare ups and it is stressful times!  I watched Obama's farewell speech Tuesday night and a mantle of dread and actual fear has settled over me.  I went to my psychotherapists appointment on Wednesday and spewed forth all sort of stuff and she told me that everyone she has seen has been expressing the same fears and sense of apathy!  Not just me is a good thing...I thought it was the fibro fog and my memory issues!

I remember sitting in a classroom back in the stone ages and a teacher asking us had we given any thought to how old we would be at the change of the century, where we would be, what we would be doing?  WOW!  Now that was a loaded question because at the time I was only 9 years old living in Oklahoma!  Turn of the century was still about 40 years off...plenty of time to think about that later.   Women had been given the vote back in 1920 but here in Oklahoma things move a little slower then national average and some women still weren't voting much or voting what their husbands told them to vote!  The civil rights movement was scandalizing us all!  It was 1961 and a social revolution was in the making.

I was very religious back then having been brought up in fundamentalist holy roller church...Assemblies of God and Church of Christ!  What was I going to do?  I was going to get married young and spit out babies until I was incapable of doing so.  True story...that is what I thought God wanted me to do cause I had been told my goals all my life had been be a God fearing/loving woman, get married to a God fearing man, have God fearing babies and take care of them all.  God, Family, Work was the mantra of the day!

Little did I know that one year later events in my life would change the course of my life forever.  My mother and step-father Melvin divorced.  I was flabbergasted because this just didn't happen in our circle and family very much ever.  I didn't know my beloved grandparents had been divorced and reunited multiple times at that point.   I just knew people at church began making statements about our family values when they divorced.  I began seeing a side of the church that was pretty dark, very biased and bigoted.  I didn't like it and started questioning certain things.  When I questioned any aspect I was put in my place and called in to the preachers office to be chastised for my questioning of 'the way'.  I used to cry myself to sleep at night for worry and fear of the Cubans and bombs, my folks divorcing, and the social change that was starting to make itself known with the 'hippy generation'!  It was tough times for a little 10 year old to try and grasp any semblance of normalcy from but times they be a changing.

In 1962 a new musician/artist to me...Bob Dylan released a song called "Blowin in the Wind" and a couple years later "Times They are a Changing" that were absolutely revolutionary.  I have never been a big Dylan fan but these songs impacted me at a time in my life where I was ripe for a change.  Dylan was a chronicler of social unrest in the 1960's and just said what most of us were thinking.

What does this have to do with 2017?  Patience my child it takes a minute to put a story into perspective...

Fast forward 5 years.  I am sitting in a church waiting with the rest of the kids from my Sunday school group...kids that I had grown up with all my life...waiting to be baptized.  I was pulled from the group and told that I needed to rethink my christian values and that I would be baptized later.  Never happened.  I walked out of that church and never darkened the doorway except once...1975 to get married to my husband Chuck.  Why?  I think because my first marriage ended in divorce after only 2 weeks...my husband was abusive and I wasn't going to end up like the other women in my family.  I think I thought if I was married in a church it would last...it has but not because of the church.  It was shortly after the second marriage that I realized I wasn't a believer anymore.

At 17 years of age I was sitting at work one night and realized that I didn't believe much of anything that I had been brought up to believe.  I didn't believe in a God if he knew everything and could fix everything why did he let so much of the bad stuff going on happen?  I didn't believe a woman had to marry to be whole and satisfied with her life.  I didn't believe a woman was a punching bag for her philandering husband to punch on.  I didn't believe in much of anything...  Apathy is a good term!

In 1970 I married, divorced, and moved out!  I tuned in, turned on, and dropped out of the society I was brought up in.  I knew I deserved more and better then what I would get if I stayed there...hard to say that now and I wouldn't have been able to back then.  I started to nursing school in 1971 because nurses were making a lot more money then what the average female worker in Oklahoma was...if she could find a job.  I actually was interested in nursing and caring for people so I started working as a psych attendant and was making $1.00/hour in a state institution that paid better then non government jobs.  I know!  Think about that!  I made a whopping grand total of $80.00 before taxes if I worked 80 hours in the two week period.  I think back and wonder at how uncomplicated life was back then.  I got up, went to work, went to school, came home went to bed.  Day in day out!  After my divorce that was what I needed to work out what I was going to do and where I was going to go with my life.

1973 I quit the state hospital job and went to work in a medical hospital as a nurses aide.  I did it primarily because I got a 10 ¢/hr raise but true be told it was because I was beat up by a patient and I was worried about it happening again!  The job I got was really hard work and I began resenting having to do all the work while the RN's sat on their butts and did next to nothing.  I vowed when I got out of nursing school I would be nothing like that and became an advocate for a patient care centered model of care that was called primary care nursing...the RN did it all.  Funny that!

In 1974 I met Chuck at a Halloween party for friends of ours...he was a little creepy in the beginning but after Christmas he began growing on me.  I think the problem was that Chuck was a much nicer guy then any of the other men I had dated and I figured something must be wrong with him!   It was really funny when my friend called me and begged me to go out with him because he had been bugging her and she said he just wouldn't stop!  So my life with Chuck started with a dinner date at his apartment (with another couple chaperoning) and him cooking a most awesome dinner of a souffl—ź and cauliflower with cheese sauce.  The man can cook!!  I still wasn't convinced he was a keeper but I was interested in furthering the relationship.  That night he told me he would like me to stay the night but that if I stayed the night I would be staying the rest of my life!  Oh no!  Exit left.  I was gone.   The next day we went to a hockey match, I went home with him, and we have been together ever since.

1975 was a busy year for me!  I graduated from nursing school and passed my registration tests.  Chuck and I got married in 1975 and immediately got pregnant with our first baby.  That was a surprise because I wasn't sure that I could get pregnant at all after a motorcycle wreck in 1965.  Chad was born in January 1976 and we moved to Kansas City in June of that year.  Life was good in Kansas City and I enjoyed my house and my job there.  Heather was born in 1979 amidst a winter that went on record as one of the worse in KCMO.   We settled in to a life that was hectic and busy as only it can be when you have kids.  It was fun and aggravating at time but it flew past way too quickly.   1982 we moved to Colorado where we lived in Longmont for four years before coming back to Oklahoma where we have lived ever since.  I never subjected my children to the strictures of the church and I raised them as humanists to take responsibility for their actions and to treat others as they would like to be treated.  I am proud to say both Chad and Heather are responsible human beings and caretakers of their worlds and the world around them.

Chad is now married (2008) living in Clarksville, Tennessee where he is band commander WO2 Charles A Doswell IV for the 101st Airborne Band!  Chad and Candice have two beautiful girls(5 and 7) and a darling baby boy(2) and are devout members of the Catholic Church!  Heather married Michael in 2006 and they just recently moved to San Jose, California where Micheal works for Netflix.  Heather has a studio in their home works as an artist and teaches classes occasionally.  They have 3 large dogs(Mocha, Wesley, and Leo), 2 cats(Horace and Inara), and an African Grey Parrot called Nyassa.  

Okay now here is the rest of the story and how it ties into the OMG 2017!  Why my flare up seems to be so bad is due to the stress related to this.

With the outcome of the presidential election last November the world has become a topsy turvy jumble of "I just can't believe it!"   The president, his proposed cabinet, and the followers of the circus are just unbelievable in how they manipulate data/info/ideas around to their way of believing.  The lies and hypocrisy are rampant and I have not felt such a fear of the future as I did back in 1961 when the world was in such a turmoil with the cold war with the USSR, the Bay of Pigs, and the threat of Cuba bombing the US!  The new government is coming in firing people, taking away some peoples rights under the constitution saying the constitution is illegal etc.  It was legal for 250 years and now it isn't?  The new government has all the signs of losing democracy and turning into an oligarchy based on wealth and religion or a fascist regime.  The president elect gave his first press conference yesterday and refused to answer questions from various news reporters saying they were "fake"!  Isn't that a breech of the constitutional freedom of press?  He mocks people and makes some of the most disparaging comment about anyone that doesn't hold his beliefs.  Most of the cabinet of people he is nominating are not qualified for the positions and a lot actually have disqualifiers in their ability to serve in the capacity he has nominated them for.  I am wondering how long it will take for some or all to be impeached.

I am a secular humanist.  I don't believe in any god.  I feel that if there is a god it was a complete asshole to allow all the pain and suffering that it has.   This new government seems to be based on extremist christian principles which focuses only on the almighty dollar and what you should do for god.  Jeff Sessions the nominee for Attorney General said he is “not sure” if a secular person understand the truth as well as a religious person but...We’re going to treat anybody with different views fairly and objectively.  I am fearful that there is a cot in a concentration camp with my name on it.  I am beginning to wonder what the difference between extremist Muslim groups like ISIS and these christians are.  I think if we put them in a bag and shook them up there wouldn't be much difference in bigotry and hate when they came spilling out.

So here we are 8 days away from inauguration and I worry.  I worry about me, my family, my grand babies and a world they will grown up in.  I worry about how we will be able to make it from day to day when they are planning on cutting our social security benefits that we worked so hard and we paid into.  I am worried about the new president elects followers who follow him regardless of how screwed up he is who actually buy into what he says.  It seems impossible that a group of  'christian' people would want to follow his direction with all the lies and indiscretions he perpetrates.  Do you know even after hearing and seeing a video about him she still claims he isn't like all the lies that are going around about him.  His followers are actually more of a concern then he is.   

I worry...a lot.