I think something that is important to remember is that we aren't our body. When we look in the mirror we think we are seeing ourselves but truly we aren't. We are seeing our body, the vessel that we inhabit. We are so much more than our body, the essence of us lies within our soul and I believe that our body and our soul are two different things. My body may be betraying me, failing me but I can't allow my soul to break because without my soul, I am nothing. You can live in a body without limbs, in a body that won't move, in a body that is slowly dying, YOU, your thoughts, your beliefs, your personality, your emotions are still there. But what good is a perfect body without a healthy soul? I'm not speaking religiously, like you need to save your soul. I'm speaking just matter of fact, you need to take care of your soul. If you are depressed you need to get help, if you are constantly speaking to yourself, of yourself, in ways that you wouldn't allow anyone to talk to your best friend, well then there is a problem and you need to work on building yourself up. Whatever you need to do to take care of your soul, do it, whatever you need to be happy, do it. It's hard living like this and it is all too easy to give into the sadness and depression that comes with the loss of who you were and the dreams that you had for yourself so we must be extra vigilant.

Also, by finally coming to the realization that I am a soul in a body, rather than I am broken, by separating those things I am able to separate who I am from the illness. It is easier for me to say my body needs to rest now so I will rest, before it felt like I was giving in, like I was a failure because I couldn't push through, I felt like the disease was winning. Now I see my soul and my body were at odds, now I am kinder to my body. I'm not sure if this makes any sense to anyone else. I'm trying to explain it and I don't feel like it is coming out the way that I intended at all. So I will end this for now lol.

Chronic Fatigue Syndrome or newly named Systemic Exertion Intolerance Disease

My life has been stolen away from me, yet again, by another disease, just some more letters to add to my Alphabet Soup. Leave it to me to get a disease I never even believed in, I just thought it was a catch all diagnosis that a doctor gave you when they couldn't figure out your issues and wanted you off of their back but now I know that this is very real.

I'm tired....no that isn't right, that doesn't describe it, I'm fatigued....yet that doesn't full encompass it either. Imagine you are running the last leg of a marathon, pushing as hard as you can even though you feel like you have nothing left, drained to the very last drop of energy, you are running on fumes...and then you collapse at the finish line, oh the sweet relief of lying down....yeah thats CFS but you aren't running a marathon, you are just trying to get the grocery shopping done and when you sit down there is no relief, you still feel like you are expending that energy. Sure if you sit and do nothing for a few days you might feel a little bit better, lethargic but not quite so bad but all it takes is going up the stairs to use the bathroom and you are right back where you were.

They can't pinpoint what causes it, many people come down with a very bad sort of flu and just don't recover, others it just happens. For me, well, I think someone made a very very bad mistake that will cost me the life I was supposed to live. This is theory of course but it makes a lot of sense. I've read that the rubella virus is one of the viruses suspected to cause CFS, I didn't have rubella but I did get a rubella booster during my medical clearance for my new job at the hospital. How was I to know it was a live virus? I'm not a doctor. I have suppressed immune system and I'm not supposed to get live virus vaccinations. Perhaps that small amount of live virus was enough to trigger CFS, all I know is a few weeks later I collapsed at work and I had to be taken to the ER, I was more and more tired as the weeks went on but I had started a new job and was working lots of hours, I figured I just wasn't used to it. I started my job in April, by August the doctor had pulled me out of work, I never got to go back.

Just a few months ago I was active, I did yoga every day, I got through household chores with the annoyance that household chores brings with it. I grocery shopped and ran errands without a second thought. Now I sport a handicapped permit, a cane and am wheelchair shopping.

No treatment. No cure.

I am officially beginning life as a disabled person.

Letting Go

I quit my job today, it sucked, badly, but I had to let go. Whatever is going on is more than my RA flaring or one of my other illnesses. All of my blood work is coming back normal which leads me to believe that it could quite possibly be Chronic Fatigue Syndrome. Leave it to me to get another disease that I didn't really believe in. I haven't been diagnosed yet but all of the symptoms are there. Crushing fatigue that has turned my life upside down, yet I have insomnia at night, muscle weakness, night sweats, brain fog, cognitive issues, muscle pain and normal lab tests....

Letting go is hard, almost harder this time around. I finally felt a little bit better, I got a job, I felt like I was becoming the old me again and then I had to let me go again. People tell me that I should make new goals for myself, that I should learn to appreciate the life I have now but I haven't quite figured out how. How do you appreciate a life that you never wanted to lead? A life that feels more like existing than living? I'm still the same person inside, my mind is still the same, my body just won't cooperate. How do once active people that became paralyzed do it?

I know this is a weird place to end a blog post but I'm just at a complete loss right now.