Monday, March 8, 2021

Simply Quilts and a Health Update

I am really enjoying the facebook group Red Button Quilts now that I have found it!  I decided to get the kit for this month's "Simply Quilts" pattern.  The patterns are free each month (join the facebook group and there is a link to the website where you can find the pattern just for that month) but I wanted to work with the wool instead of just my scraps.
I spent the entire day yesterday (besides almost two hours dealing with the lack of space on my smart tv...lots of googling and Kathy's help to fix it!) working on this little quilt and went to bed before finishing the hand stiching.
I added some extra fun buttons that I bought from JoAnn's awhile back and never did anything with.  I forgot to stitch the flower on the machine, so may do that yet but otherwise I finished the handwork this morning.

 Barb used scraps (and started way before me) and is still working on her handwork.  I love the colors she used and her border fabric!

I am still working on my Grassy Creek border.  On the string blocks for the last direction now.  May sew more of those today.  Slow and steady, it will get done!

Update on my health if you are interested.  I have finally been diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. I have been EXTREMELY fatigued now going on close to three years.  At first we just thought it had to do with my low Vitamin D and B12.  Then we thought it had to do with my reactivated Epstein Barr Virus.  Then with MS.  As time has gone by I discovered on my own that the more I do the more tired I am.  For MS the number one recommendation for fatigue is exercise.  This makes me FAR WORSE.  This is true of anything physical (shoveling 15 minutes of snow is a three hour nap, exercising five minutes a day is a two hour or more nap daily, etc.) but it is also true when I work.  While working I would literally come home and collapse everyday.  I would sleep for four or five hours, wake up, eat and go back to sleep.  Many mornings I cried getting ready for work.  I LOVED my job.  It just got more and more exhausting.  I gave up hiking.  I gave up Pilates.  I could not stand and teach, I eventually could not walk the stairs.  Last year around this time we went to online teaching from home.  I was relieved because I did not know how I could make it through the last quarter.  I used to be a HIGH ENERGY person.  Seriously high energy.  This was quite an adjustment and grieving process for me.  

So at the end of the year, I quit my full time job and we moved to Wisconsin.  I tried to focus on Hazel's arrival and I really think if not for that I might have gone screaming off the edge of the world.  I have slowly gained almost all of my weight back.  This has been so hard.  I CANNOT do more than walk and that is limited.  I can only stand/walk for around 25 minutes.  I can barely walk stairs without pulling myself on the railing.  Now that I only work a few hours a week (or none) I am awake more, but anytime I do too much I pay for it.  Last week Saturday I scrubbed my stove top for 20 minutes ( I was feeling really good) and I took a three hour nap that day, a few hours the next day, in bed mostly for several days and just did not feel back to my new normal until SIX days later.  It sounds ridiculous, but this is how it is now.  If I work 3 or 4 hours interpreting I nap all afternoon and do not get out of bed for two days.  

I also take a bunch of vitamins, minerals and supplements which have helped me get to this level of functioning.  Many people have this worse than I do, so I am grateful mine is not worse and that I am not just working and sleeping.  The only way to explain this is to imagine your worst flu and that is my everyday except I am not throwing up.  I have tried to research and figure out what is actually wrong in my body in an attempt to fix it.  It has something to do with oxygen or energy production.  All the tests they do show my heart and lungs are great....the first time I really realized something was wrong was when the kids and I went to Door county three summers ago.  We went to Washington island and climbed to the highest point.  I was still in shape but was breathing really hard and barely made it to the top despite less than a year before that I hiked the Grand Canyon.  I was also sleeping a lot by then and commented to my kids that I could not figure out why I was so tired all the time.  

Highest point on Washington Island

If I had understood what was wrong with me, I would not have pushed myself to work for two more years, further exhausting myself.  I am not sure this can ever be recovered from (most people apparently do not really get better) and so I am happy that I have quilting, reading and solo gaming to look forward to.  


Moneik said...

So sorry to hear of your health challenges. I went through a month of extreme fatigue and shortness of breath, but it was due to my heart not functioning. Now that I know what it is, I can take the meds and I feel better. Hope you'll be able to find some relief.

Vireya said...

Oh, Andee, that sounds awful! I hope that having the diagnosis will help you know the best way to proceed. Thank heavens for the things you can still enjoy, like quilting and spending time with gorgeous Hazel.