ME/CFS patients sicker than AIDS patients

This week leads up to May 12th, which is International ME/CFS & FM Awareness Day.

There was a rally on May 8th at Queen's Park, (Ontario's parliament) in which several Ontario gov't representatives spoke. So nice to see them stepping up to the plate!

The mayor of Toronto has declared May 12th to be Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day (Found Here) Again, nice to see!

Dr. Nancy Klimas, has said (she treats AIDs patients as well as ME/CFS patients) saying "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V" (interview here)

Dr. Alison Bested said the same thing (video below) about her patients.

I am proud of my country for the steps it has taken in ME/CFS/MCS acknowledgement, but more needs to be done. I'm not sure why it seems to lose something in the translation, but it just does.

For example, if someone were to say "My mother has Alzheimer's" reasonable people would not respond with, "Oh ya, I sometimes forget where I put my glasses so I know exactly what it's like. Your mother should just exercise more, or perhaps do things like crossword puzzles, to improve her memory. Forgetting things is just part of life and I have to deal with it, so she should too."

I have heard the extreme fatigue experienced by many ME/CFS sufferers being compared to the fatigue experienced by people with cancer. Reasonable people would not dare to suggest to the cancer patient, "You just need to get more exercise" or "I get tired too, it's just part of life" yet .... those are common statements to people with ME/CFS.

It is worse though, because the extreme exhaustion is only one small part of it. ME affects so many other systems in the body and produces a whole list of other problems... like this explanation: (taken from here at the cfids.org website)

"Although its name trivializes the illness as little more than mere tiredness, chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), brings with it a constellation of debilitating symptoms.

CFS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period" and even more symptoms Additional symptoms are reported by people with CFS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures"

Video of Dr. Alison Bested speaking at Queen's Park Toronto Ontario Canada - May 2012

Improvement

Improvement!

I'm noticing some improvements on the M.E./Fibromyalgia front. I don't want to speak to soon as relapses with these illnesses are quite common...but....any kind of improvement is good news!

I've been battling M.E. and Fibromyalgia for going on five years now and it's been a long and often lonely road to travel. Improvements at times are so minimal (and often a 'two-step-forward-one-back' type of scenario), that it's easy to get discouraged and think nothing is working and it never will. I find it's most productive to focus only on improvements and to refrain from comparing my present abilities to how much I used to be able to do before I got ill. It's also not helpful to concern myself with what others think I should be able to do.

Comparing points in time, from year to year, shows the largest amount of improvements. For example, this past November, we took part in an a Food and Craft Fair. We took part in the same show the previous November too.......but what a difference a year has made!!

November 2010, I was only able to stay until noon....and even that was pushing it. I shouldn't have went in the first place -- I was too weak. I had a major headache, could hardly stand up/felt like I was going to faint, weak, dizzy, swollen and very short of breath, pounding heart, felt "fluish" and all that goes along with that (only much worse than a regular case of the flu). I felt bad about leaving Larry and Jake there...but what could I do? Home to bed I had to go...and in bed I stayed for the rest of that day. The post-exertional malaise the days following were rough too.

Fast forward a few months to March when the next fair was held. Although I was able to stay for the whole thing, I did need to leave half way though for a rest. I retreated to the van, had a bite to eat, put my head back and napped for awhile. Eventually, I went back in where I stayed for the rest of the show. Even though I was majorly crashed the next few days ....I had managed to stay out for the duration of the day! Improvement!!

November, 2011, the show happened again and this time, I was able to stay for the whole show!! No nap needed, no rest in the van needed! Definite improvement since last year at this time.

I've learned to accept and carry out the pacing rules. Resting and "saving up" energy is important before an event as well as after. In keeping with this, Saturday before the show I did nothing but rest as well as Monday.

The Monday after the show, I felt somewhat achy and tired, but not majorly crashed as I have been in the past after shows. The Tuesday and Wednesday were good too --- no Post Exertional Malaise -- Improvement!!!

I've learned a lot from having these illnesses too.

Things like...Don't sweat the small stuff! I know that sounds trite, but when you don't have enough energy to even tackle the really important stuff, you soon learn to let the small stuff go.

I've learned who my true friends are. The ones who have stood by me throughout this ordeal without passing judgements.

Lots of surprises along the way too. Like, the first Sunday I returned to our previous church after a very long month of being pretty much bedridden, a woman lambasted me at the back of the church (with teeth clenched and very loudly for all to hear I might add). It seems she thought my parenting skills needed some of her 'expert' advice. Hmmm... I was so sick --- everything...and I mean everything --- fell back on to Larry and the kids --- they had done well just to get there each week. No interaction while I was so sick for that month but more than ready to pounce on me upon my return. Talk about kicking one when they're already down... What's that old saying? If you're not part of the solution, you're part of the problem....

And.....I 'get' the stares and the whispers of people who think I just can't be bothered. If they only knew the reality of it all....

Oh well -- if I want to continue to improve (and I do), I need to focus on the positive and put the negatives out of my mind. Don't sweat the small stuff ;)

Hopefully, more improvement to follow.