Besides the obvious that there is a great feeling of being tired that really doesn't go away, there is alot more to CFS than most people realize. I think the hardest part about living with CFS is that most of the time I don't look sick so its hard for most people to understand and remember that there is something very wrong in my body. I remember dragging my but out of bed and going to work before I had any idea what my problem was, getting to work and barely remembering the drive. Every break I had I would just have to lay down and close my eyes, now remember before this I was always on the go, I didn't stop to take a break, I would crash. I started having trouble remembering little things that I knew, work became harder and harder as part of my job was to think on my feet and be able to adapt including implementing strategies that supervisors had given me. I just wouldn't remember until someone would remind me, and then I'd just feel stupid, it was like "I knew that! What's wrong with me?" Then there was further embarasment when I would meet someone knew and I swear to you two seconds later the name would be completely gone from my brain. Previously I had a great memory, especially for names, I could tell you my childhood friend's name, dog's name, from twenty years ago but now I couldn't even introduce people to each other.
I was now in the land of fog, brain fog. It became increasingly harder for me to focus on even doing one task, now navigating though something I had done a hundred times before became difficult and I would forget steps. I would get so frustrated with myself and with others because they didn't, and for the most part still, don't understand that my brain is in there somewhere and I was trying but it just wasn't working. I had employers think that I was actively not listening and just slacking off, even after the diagnosis. Like I said in my previous post it came to the point where I just couldn't work anymore and I took a leave of absence.
So I tried to sleep as much as I could but the harder I tried, the harder it became to sleep. It came to the point where I wouldn't be able to sleep until 5 am, 6 am, 7am, 8 am and my fiance would be getting up for work in the morning. I do have to thank my wonderful man for sticking through this with me, we starting dating not long after my migraines started and we have been together for five and a half years now. They wern't always easy times, and he hasn't always been as understanding or as helpful as I would like, but he's still here and that says alot. Suddenly I'm very emotional, the love he has shown me is bringing tears to my eyes, but I still have days where I want to strangle him for not putting his dishes in the dishwasher or taking the garbage out. Anyway I will get into this more in a later post, back on track.
I would sleep then until 2 or 3 pm. I would force myself to get out of bed, or rather my cats insisted (if you have ever seen the Simon's cat cartoon where the cat wakes his master, its just like that). I would get up, go to the bathroom, and go lay on the couch for pretty much the rest of the day. I would try to research on the internet as much as I could to see if I could find things to try to improve my condition. One day I googled Chronic Fatigue Syndrome and it came up with an article about a young man that had been very much like me, and now he was suffering just like me. He had CFS and he was on the Marshall Protocol. I would like to go further into what the Marshall Protocol (MP) entails at a later date when I explain the different treaments I have found available and the reported pros and cons of each. I was excited to have an idea of what might be going on and that there might be a cure, since everthing I had found so far said CFS is not only incurable but also difficult to treat to get any improvement. I spent the next couple months struggling to even get of the couch, my body felt like it was weighed down by cement. I was so tired that I couldn't get up to get something to eat, this probobly didn't help my energy.
Looking back at that time in my life it was like I was a breathing corpse. I couldn't function in pretty much any capacity. I couldn't work, I couldn't paint, I couldn't go to a simple family gathering, I couldn't do anything that I previously enjoyed. Looking forward I probobly won't be able to do most of what I could before, my old life effectively is dead and gone and most of my friends and relationships have died along with it. I mourn my old life and I mourn what my life could have been without CFS, but I go on.
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