Friday, March 4, 2016

This is what Systemic Exertion Intolerance Disease looks like

Systemic Exertion Intolerance Disease (SEID). Sounds serious, right? What about Myalgic Ecephalomyelitis (ME) ? Sounds horrible doesn't it? How about Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)? 

These don't sound like anything you would want to endure, do they? What if I told you they were all the same disease? What if I told you, they were all Chronic Fatigue Syndrome? Why the fancy names? It's because physicians and clinicians want people to take this ailment seriously. Because they want people to start treating it for what it is - a real illness.

There has been a couple reports lately by Stanford University and Columbia University declaring the highly stigmatized disease formerly known as CFS as having a biological basis. SEID, ME, or CFIDS, whatever you want to call it, is not psychosomatic. This is backed up by a report put out by the Institute of Medicine.

Mady Hornig, the lead researcher behind these studies at Columbia University,is privately funded. Traditionally, CFS research has been greatly underfunded. It is low on the list of The National Institute of Health (NHIS) priorities with a research budget at about $5 per patient for 2015. Yet it's one of the most mysterious illnesses out there.

Why am I telling you all this? Haven't I beat this subject into the ground yet? Well, because I've started to do my own research, but let me back up a little...

Today I was going to show you in photos what it was like to live with CFS, which I will now call anything but that. I took pictures of certain rooms in my home that suffer from my ailment. But then I got embarrassed. Mostly because this illness is over stigmatized as "all in the head." I thought maybe people would see me as lazy or a hoarder, when in fact, that is very far from the truth.

I was afraid to show you the photo of my bedroom. That week I walked to work, I had just returned from my vacation. Why am I telling you this? Because that photo of my bedroom would have shown you a pile of clothing on my bed that I've been too tired to put away. On a chair, a laundry basket of clean clothes I have been too tired to fold and put away. And underneath the clothes on my bed is the suitcase I've not fully unpacked since I returned from my trip to Arizona on February 15th. 

I was afraid to show you the photo of all my medications for ailments connected to ME/CFS. Medications for anxiety, allergies, sleep, and focus.

I was embarrassed to show you the photo of my office and hallway. My office is my go-to room for all my junk. Right  before I left for my vacation, I started cleaning it out. I got pretty far, but I didn't finish. Now there are papers, books, and boxes of things spilling out of my office into the hallway. Me, having been much too exhausted to finish that task since coming back from vacation and overexerting myself that week.

I didn't want to show you the photo of the unpacked boxes I have by my front door. The ones with the groceries I bought from Amazon Pantry because it is too hard for me to get to the store most days. The other two boxes that contain the new shredder I bought to assist in the organization of my office. And the new garbage/recycling can I bought after my garbage can broke about a week ago. 

That is what living with ME/CFS looks like. It also looks like:
  • Sleeping restless every night because you itch, or your legs won't stop moving, or your
    mind won't stop churning, or you have crazy nightmares.
  • Getting out of bed at 12:30 pm on days you don't have to work outside the home. 
  • An aching back, painful joints, sore shoulder muscles, headaches, stuffy nose and puffy eyes. 
  • Not being able to recall the simplest of words, remember people's names, even your own friends sometimes, where you put your car keys, or what you did two nights ago. 
  • Forgetting you're ill when you're feeling good, then overdoing it and suffering greatly for three weeks following. 
  • At the end of the hard spell, having to start over again, trying to get back to where you were before you came out of remission, which for me was going to the gym, cooking, and cleaning, things that normal people can do without thinking about it. Things I once took for granted that I would always be able to do with no problem. 
  • Having to have someone come clean your house and do your yard work once a month (I miss yard work) because if you did them yourself you wouldn't be able to get out of bed the next day.
  • Getting physically exhausted by not only physical activities, but by thinking too hard as well. 

Don't just take my word for it, find out how others describe ME/CFS at The Mighty.

So I continue to do my research on what I can do to get and be better, to find away to raise money and awareness for ME/CFS research, which by the way, is not an easy find. I looked for support groups or organizations in my city. There are none.

So I guess you could say I'm on a mission. I'm on a mission to get the word out about this disease. To tell people how debilitating it can be. I want my family and friends to understand how I feel and why I can't always do the things they want me to do or go the places they want me to go. I want them not to laugh and mock me when I talk about my medical condition.

I want more research done. I don't want to feel like this. However, I am one of the lucky ones. I can work a part time job, while some can't work at all. I can get out of bed most mornings while some are bedridden. I can walk on my own two feet, where some are wheelchair bound. 

Now that ME/CFS is being taken more seriously by the medical profession, my wish is to someday be the person I was before the illness. Someone who was healthy and fit and happy. Someone who was productive and always on the go. That wish is not just for me, but for all those  suffering from this terrible affliction.

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