Tammy's Chronic Fatigue Syndrome (ME/CFS) Story
"The symptoms came on slow at first with dizziness..."
When I first came down with CFS in March of 96 (36 years old at the time), I had little idea what lay ahead. Never in my wildest imagination could I have comprehended the challenges that would affect me on every level of my being. CFS had reared its ugly head and was about to take me on a journey into "abyss".
A little background:
"I was very active....I loved the outdoors with camping and hiking being my most favorite things to do. I also became a glider pilot"
Prior to the onset of CFS, I was a single mom.......living life to the fullest. I had divorced in 87 and moved from Ca. to NM. where my family was living. I went to nursing school with the help of my parents, grants, and many a housecleaning job. I was determined to make a good life for me and my daughter. I was very active.............I loved the outdoors with camping and hiking being my most favorite things to do. I also became a glider pilot mainly because my Dad had taken up the sport and I was very close to him. It gave us something to share together.Flying came to an abrupt halt when I crashed a friends glider on take-off and subsequently broke my back. I only had two semesters left of Nursing school and wondered if I should even consider finishing. Nursing involves alot of lifting........so I didn't want to add insult to injury. However, I did finish and became an ICU nurse in the Neonatal unit. Premies don't weigh very much!
It wasn't long into my career when my Dad came down with Lou Gehrig's disease and my mom asked me if I could quit my Nursing job and take care of Dad. IT was a trying time to say the least.........2 years of watching a wonderful man go down hill. After Dad passed away, I didn't do anything for about 6 months then Mom asked me if I would take over management of the apartments my Dad had built and I did. I never went back to Nursing.
"I felt like I was on a rollercoaster with a blindfold on......never knowing what was going to happen next."
"The symptoms came on slow at first with dizziness and tailbone pain (odd, I know) being the most predominant and then over the next 5 years came the most bizarre symptoms that were the most challenging which in and of itself is an understatement! I felt like I was on a rollercoaster with a blindfold on.............never knowing what was going to happen next. It was almost like I was part of an experiment where the "experimenter" said "OK Tammy, I'm going to give you this little yellow pill and for the next 3 hours your spine, wrists, and ankles are going to feel like they are being torqued and twisted in such a way that you will expect your bones to break at any minute. It will take everything you have to keep from passing out because the feeling will be so intense."The experimenter continues.........."Then after that, I am going to give you a little pink pill that will make you feel like your body is made of lead and cement to the extent that you will have to "crawl" to get anywhere. Through all of this you will run fevers and feel like you have the worst flu ever. You will feel a "depletion" like you've never felt before. Then after that, your body is continually going to feel like it is so "wound" up that you don't think your heart can survive......nor can you ever relax completely again."
There were many many more bizarre symptoms that frankly I don't think I could even begin to describe. I was
"There were many many more bizarre symptoms that frankly I don't think I could even begin to describe. I was on a roller coaster holding on for dear life. At one time I was sure I was dying bit by bit."
on a roller coaster holding on for dear life. At one time I was sure I was dying bit by bit. During this time I didn't have a whole lot of support. In fact, I was accused of being everything from a drug addict to an anorexic because at one time my weight had plummeted down to 93 lbs. I remember one morning waking up and literally over-night I had lost a tremendous amount of muscle. It even crossed my mind that by some odd coincidence, I had contracted the same disease my father had.......ALS.During this whole nightmare, I was trying to take care of my daughter and still trying to manage the apartments! One day I just knew I couldn't go on, it was impossible and I told my mom I could no longer work. Then I made one of the hardest decisions I've ever made...........to send my daughter back to Calif. to live with her dad. This was extremely difficult for reasons I don't care to share. Mom helped me out until my disability came through.
"I was accused of being everything from a drug addict to an anorexic "
With my daughter being gone and my symptoms continuing to get worse, I prayed to the "Maker" to take me home. My most darkest period came when I felt like my body was slowly becoming "paralyzed". This was the straw that broke the camels back. No way was I going to continue life like this...........let alone become a "burden" for someone to take care of. I"m sorry if this is too "raw" for some readers. I considered leaving this part out but then I think it might be helpful in the long run for someone who might think things could never get better.I confided in a friend of mine who also had CFS, that I was going to consider ending my life if things continued to go down-hill. I even contacted and joined the Hemlock society. She knew the extent of my suffering and told me if it came to that..........she would be by my side all the way. (God, this is hard to write). This period of my life I call "Dark night of the Soul".
"...somehow my body survived the "onslaught" and miraculously started getting better. I never thought it could. I thought the damage that had been done was too much for any kind of improvement."
The next couple of years are kind of a blur, but somehow my body survived the "onslaught" and miraculously started getting better. I never thought it could. I thought the damage that had been done was too much for any kind of improvement. After getting better and more "stable", my daughter came back to live with me and has been my biggest supporter. She moved away last year to attend college and calls all the time.Things are better for me now, however I still can't work. I don't feel like "death warmed over" anymore but I still face challenges every day. My body somehow made it out of the "abyss"..........thank god! I have a wonderful "internet" family from all over the world. You guys have sustained me and I thank you for that.
What a long strange trip its been..........................Tammy
P.S............. Looking back I can definitely see where stress played a big part in my over-all health. i.e. Divorce, trauma of accident, Nursing school, Father's illness, etc. During these times I would have episodes of flu-like symptoms and other strange things.............but my body would always recover completely...............until years later in 96 when it said ..........enough is enough.
"Looking back I can definitely see where stress played a big part in my over-all health. i.e. divorce,..accident, nursing school, Father's illness, etc. During these times I would have episodes of flu-like symptoms and other strange things..."
Also, I would like to add here..............that as a result of this illness, I have a greater "awareness" of life and more insight on a level I probably wouldn't have otherwise.....................I am in no way saying that one has to suffer in order to "learn" and become more spiritual but for me............I have to wonder.
tamchapa@hotmail.com>