Who knew????

     Actually, the millions of people world-wide who suffer with CFS/ME know this all to well and it's about time the medical and scientific world caught on to this fact as well.  Thanks to this latest research, it looks like they may be doing just that!

      This article, published this week on Science Alert, introduces some amazing Australian research. Among other things, it's the first research to show ME/CFS is linked to faulty cell receptors in immune cells and it offers great hope for future treatment and tests to diagnose ME/CFS.  

                             Fantastic News!!

      The article discusses many things that we (people with ME/CFS) already knew, like the effectiveness of current treatments (practically zero). 

        For example:  The article states:  

                         Don Staines, who is one of the researchers and
                         co-director of Griffith University's National Centre
                         for Neuroimmunology and Emerging Diseases states
                         in the article, ""The new research also suggests that
                         [prescribing] exercise is just unbelievably bad as it
                         can put the body under further stress." 
                      
                             More Fantastic News!!!

      I only wish I'd  knew this when I was first diagnosed.  I would have saved my body a lot of permanent damage I caused to it by adding exercise into my routine.  

         Without further delay, here is the article!

​           Science Alert Article ​ 

           Enjoy!

      Finally moving forward in order to have

                                  Balance....despite the chaos!

     I've always functioned *much* more efficiently when my world around me is organized.   This is a must do for me even while living with chronic illness, although it's not quite as easy.  I work hard at using the energy I do have, in the most efficient way I can, thus making it stretch as far as possible

     This list includes (but is not limited to):
       

• I keep a couple of note pads and pens in my bedside table.
• If I'm having a bad day and am unable to get up (or just pacing myself a bit), I jot down notes as things come to mind.  This includes everything from groceries, to house chores, to things I need to tell my kids.  Everything that needs doing, gets written down.  This helps defeat  the brain fog.
• When I do get up, I do things from my notes in the most efficient order possible, reducing the amount of energy I expel walking around (ie on my way to the office to retrieve the bills so I can pay them from my bed, I stop at the pantry to check supplies and record what needs to be replenished, then stop at the laundry room to start a load of laundry, before getting to the office.  After I retrieve the bills, I head back to bed to rest before logging online to pay the bills.  
• I loosely plan out my day based on energy available to me.  If I'm in a lot of pain or extremely fatigued, then bed rest for the morning it is and hope I feel well enough in the afternoon to tackle day's chores.  If not enough in the afternoon, perhaps the evening.  If the whole day is a write-off, then everything gets pushed to the next day.
• I give myself permission to be sick and not able to complete scheduled tasks if I'm having a particularly bad day.
• I do what I can from my bed.  This includes paying bills, planning out my day or tasks *before* I use energy getting up and standing around, making calls.
• What I can't do from bed, I save for when I am able to sit at my desk.
• I prioritize everything -- must be done, would like to get done and bonus if I can get done
• On the days I'm feeling a little stronger, I cook double batches of my meal and freeze one for the days that are a total write off.  Those are the days I need top-notch nutrition (but obviously am unable to prepare any food whatsoever).
• I break tasks up into small parts.  Sometimes I accomplish all the parts, sometimes only a small part, sometimes none of it.
•  I delegate what I can.
•  Once things are in place, I try to keep them in order.  This saves energy the next day and beyond by not having to re-do something I've already spent energy doing once.  
• I actively look for ways to reduce my energy output by combining things where possible and putting practices into place which reduce the number of steps I have to take over the course of a day.  

     
      For me, organization is the key.  It saves time and energy which allows me energy for other things.    Every little bit of energy saved, helps by extending my energy envelope!

      Keeping organized so I can have

                                        Balance....despite the chaos!