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!

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!