Monday, June 2, 2014

2 weeks post exercise test

You can not imagine how much energy this video took. My brain was screaming after these 3 minutes and all I could do was lay down and pull the covers over my head.

I am still un-recovered. I cannot go out every day. I use the electric scooter at the grocery store. Walking is difficult, and even what I estimate to be a safe distance to walk ends up being too much, and leaves me exhausted, not short of breath but my muscles are screaming at me.

I hope my recording of experience may be of use to anybody.

Thursday, May 29, 2014

I hope I make sense...

Please please please, I hope I make sense. I try to talk and think and my head hurts so much!
Also my ankle is giving me much grief these days, and I would love to have a scooter ready to use just about now so I can do my errands that need to be done.

Post-exertional relapse still holds me back way below my usual level of functioning. It is expected. But then one never gets prepared to give up precious time up and about, if you have it at all. The body is usually very good at sending signals. Today for instance, just dressing up had me having to lay down for an extra half hour. It's a horrible feeling.

Monday, May 26, 2014


It is time to adjust to the new reality (hopefully very temporary) of a decreased functionality. I am restricted in the amount of time I can spend vertically, and if I overtime, I get dizzy and feel terribly ill. This is not unfamiliar territory- it's just that the drop is very sudden. 

There is nothing to be done other than respecting the new limits and resting, resting, resting. That is until the scientists figure it out. Fingers crossed. 

Sunday, May 25, 2014

Home sweet home

The following 2 videos you can see me at home, the first one is yesterday just as I arrived from the airport and tonight after a full day in bed.

Post-exertional relapse is a really annoying uninvited guest that is getting settled for who knows how long. For right now, I feel pain, headaches, cognitive issues, muscle weekness and dizziness when standing, light and sound sensitivties. I have no choice but to comply to what my body needs right now.

Saturday, May 24, 2014

After the exercise

Apologies for delays in posting. Slow internet busy-ness of being in transit and last but not the least, dealing with the post-exertional relapse building are all factors that played in.

i am now home after arriving late last night. My head wants to explode. i hhave had and still have spinal, joint and muscle pain.   I am unable to go out today, or to shower, but I will keep this update for later.

Here are the missing links. Feel free to ask questions if you have them

Wednesday, May 21, 2014

Post exertional relapse, here we go

This video was taken last night some 7hours after the first exercise test.

I woke up feeling horrible. Worse than last night. Sore. Headache. Slow. i am a coupe, of hours away from test #2 which will be a doozy.

Monday, May 19, 2014

Sleep dysfunction and ME. And a quick update.

Wearing my fitbit for the last 3 months has provided me some input as of how to manage my health as best as possible. Not only does it calcluates the number of steps I walk in a day for me, it also tells me how many hours of sleep I really get despite me being in bed at for 10 to 12 hours at a time. more on that below. what I also like about the fitbit app (not like I's getting commission from them or anything) is that it links to 'My fitness Pal' which calculates the amount of calories and its breakdown in protein, fat, carbs, vitamins and so on. 

As of late I haven't been sleeping too well, though I think most patients with ME don't have refreshing sleep at all. Lately it's been worse for me. fitbit tells me I don't sleep for any lomger than 2hours at a time. it's not like I remember awakening, but more than likely my body just can't get any kind of deep sleep. Numerous studies have shown alpha waves intrusion in patients with ME and absence of slow waves sleep.

On my sleep study results from a couple years ago, there was a total absence of stage 3 and 4.

Less sleep means worse cognition, increased lethargy, decreased functional status and increased pain levels. 

These days despite being in bed for 10-12 hours at a time, my fitbit tells me that I only sleep 4-5. The rest seem to be awakening (5-8 times a night and disrupted 'sleep', fitbit measure this with move,ent of the arm simce it is worm on the wrist. I am planning to bring my Fitbit results and show my family physician with the hope that she can help adjust my meds for me. Unfortunately it hasn't been an easy road with sleep meds. i have needed more and more of one drug (I take 2) which is more than the maximum recommended dose so my dr is reluctant to recognize how much I take on paper. It means that the pharmacist tells me my drug refill is not due yet. The current dosage, while not perfect, works for me, sends me to sleep. Sort of.  

Once I saw a so called sleep doctor in town. What a waste of my time. she was a behaviorist, and wanted me to avoid my bed during the day and if I must lay down (patients with ME MUST lay down during the day), to use the floor. How ridiculous!

Non-refreshing sleep is just another symptom which is trivialized in myalgic encephalomyelitis. How about we call it sleep deprivation, because it is what it is. Other demeaning or downplaying terms with this disease is "chronic fatigue syndrome"- a term coined by the CDC to make it look less bad. Post-exertional 'malaise' I mean really? It's not the fainting malaise kind of thing that we experience.  i am hoping to show and describe what it feels like in the next few days. And heck, even the more scientific name of our disease is officially called "benign" myalgic encephalomyelitis. If it's so benign, then why over 75% of its sufferers are not able to keep a full time job, or a job at all? 

Words matter. 

Sleep matter and is definitely involved in the big picture pathology that we have. 

That said, here is a quick update after a long day of travel. Talking definitely sets me back.