Thursday, June 14, 2012

more on PEM

If you remember a couple of posts back I wrote about PEM, post exertional malaise and how it effects my life.  Not a pretty story I can tell you and I think that without the help of my family it would get even uglier cause they don't allow me to get depressed and stay that way when this hits me.  My daughter loves to tell me that I KNOW BETTER!!  (that means I should listen to my body and not over do!) but it isn't at all easy some days to listen to your body and stop when you should. 

I know I don't rest well, don't eat well, and don't exercise like I should and that adds to the whole problem but...  I could take the drugs they give me to help me sleep but I feel like crap for several days after a 'restful' nights sleep, I literally forget to eat and when I get hungry I end up eating all the wrong foods cause I need to eat right now!  The exercise issue is a two edged sword...if I don't do some I hurt, if I over do I hurt and it is hard to draw the line. 

As Jennifer Spotila JD wrote in her article for Research 1st "PEM associated with chronic fatigue syndrome (CFS) dominates the patient’s experience of the illness, but PEM is generally considered a self-reported symptom because there is no clinical test to easily measure its occurrence and severity."  In the article it goes on to say that PEM may be a clinical indicator to differentiate it from other disorders ie MS, Lupus, other autoimmune. 

Dr. Marvin Meadows is researching PEM also and there Research1st wrote and article and there is a video that can be a little technical but understandable explaining how he thinks.  The article Brain Fog in CFS: What's Going On? provides information about how reduced blood flow due to blood pooling in the legs and abdomen cause insufficiency to the brain causing the fog.  Check out the You Tube video Going With The Flow -- Blood Flow, That Is.  

Today on Research 1st I read an article about Dr. Cook doing research on how linkages in people with the disorders and how exercise causes PEM.  Exercise, Fatigue, Genes and Brain Function: Identifying the Linkages in People with CFS

Lots or research going on out there so there is hope for the future in handling this disorder.  I remember when people with MS and Lupus and... (get the idea) went through the same crap we are with no one understanding and thinking they were faking too.  Difference was they had visible markers showing their disorder.   Support research into CFS/ME, Fibromyalgia and other disorders because even if I don't look sick I am!

Monday, June 4, 2012

June 4, 2012

It has been over a week since I posted and I thought I would write a brief post and update you.

I decided this week was the get back in the groove week!  I have been out of the groove for the last month due to various events and life changes that have been going on around my house.  Literally and figuratively!  I guess I should explain that!

I am getting some renovation done on my house and I am getting up every morning about 9 am and going to bed around 12-1 am.  I am trying not to get stressed at the stuff going on but sometimes it is hard not to and to allow myself to be pulled down.  Having CFS/ME and Fibro has taught me a valuable lesson...its not worth getting stressed over things you can't control but....I am still a control freak at heart.  It has taken multiple reminders and wake ups to make me realize that I am living on a very tight rope that if I deviate too much I end up having to recover and climb back up to get on with life.  I spent 4 days straight in and out of bed after teaching that class last month cause it was so stressful.  I then went to a class that had me up every morning at 06:45 cause I had to be there at 09:00 and it was an hours drive away.  It was not a stressful class and I had a blast going to it knocked me out of sync and I spent all last week trying to get back on track.  I am still not there.  I have to limit everything I do and plan ahead before I do anything.  I have to be willing to accept the consequences if I don't stick to my limits.  Luckily I have a very understanding husband who can cook for himself and family that assists me as best they can.

I missed 2 weeks of my GA group because of not feeling up to going and missed Weight Watchers because I couldn't stand the thought of the energy I was going to have to put out to leave the house.
I don't think people, extended family and friends, understand what these disorders can do to a person.  I can give an example but it still doesn't fully explain what we, people with fibro and CFS/ME go through on a day to day basis.  

Think of a hard day at work in the yard, or on a hike, or even just shopping.  Think about how your legs, back, feet, head, all your body feels at the end of the day.   Back in the old days I knew that a couple ibuprofen and a nap would correct most of it, that I would be sore a day or two but then back to normal.  First off I doubt I could do 2-3 hours in the yard, on a hike, or shopping.  Hell, I have to schedule times I go to WalMart, Sam's, and Target on different days cause I won't make it to two much less to all three without collapsing.  It only took once for a salesperson going to get me a cart at WalMart for me to not do that again.  It is a standing argument with Heather and I when we go shopping that I should ride the cart.  I don't want to get used to doing that so it is a joke now that she will go get the cart should I need it or we can do a switch off where I will ride it for a while and she can ride it for a while.

I always ache like I have a bad flu and that gets worse if I overdo and stretch the limits.  I have had ultrasounds, MRI, CT, PET scans done but nothing major showed up.  A little arthritis but nothing that should affect me like I am affected.  I can make a bed, fix dinner, maybe do a little crafting or back wash the pool and I have done a hard days work for me.  I get down sometimes cause 5 years ago I was a go  getter type A person.  I worked 48 hours a week on night shift, had a big garden, mowed my own yard, did all my own house work and wasn't a whiner like I feel like I am now. 

Want to know more about CFS/ME and Fibromyalgia?  Check out these links:

U.S. National Library of Medicine
Medline Plus
National Fibromyalgia Association
Fibromyalgia Community
CFS/ME group service
Support group for ME/FM/CFS/MCS
Research 1st

These are some of the more reliable sources I have found and there are a lot more out there to peruse.  Be careful though that you don't get sucked in by some snake oil seller cause there isn't a cure for FM/CFS/ME.  Once you have it you have it for life with some days being better then others and some days are worse.   I have a quality life and enjoy every minute of it but I have to remember my limits and not stray far.  It is a challenge figuring out what you can do and what you can't and that is the biggest hurdle to get over.  I went through a horrible depression for about a year and a half cause I felt like I was a worthless human being cause I couldn't do everything I used to do.  I would make a remark about being tired and everyone would roll their eyes which only exacerbated the issues.  Thinking back I have probably had this problem/disorder since 1992 when I was diagnosed with lymes disease.  They say it doesn't necessarily cause the disorder but might contribute to the downward spiral. 

Anyway didn't mean to preach or whine just trying to let you know where I am at today.  Contemplative and trying to get back on track!  Hope you have a great week.  hugs.....