It's days like this

Days like this I think I should apply for disability. I have been bedridden most of the day, barely able to move, entire body aching, sleepy, exhausted. At this point, I am lost. My medical insurance is very restrictive with doctors. I've made appointments anyway. I'll have to pay out of pocket. I cannot feel like this anymore. Sometimes I feel okay. Good even, but now it's been over a month that I've had no energy, no motivation, no intelligible thought process (of course, the illness has been raging for three years now). It has been hard to get out of bed, go to work, research for my freelance marketing and writing...

I probably have to cut back on the things I'm doing, stay away from stressful situations, start saying no, and asking for help. I asked for help today. There was no way my body was going to work. I had to get my shift covered. I only work three days a week, but come April 1st, it's supposed to be five. I'm terrified I won't be able to do it, that I won't have enough support, that I will only get worse. It's not a physical job, but mental exertion is difficult too. Standing is hard. Sitting is hard. Like today, it matters not what position I'm in - standing, lying, sitting, propped up in bed, everything hurts, and it is all exhausting.

People keep asking me if I'm still writing. I tell them yes, which isn't exactly the truth. I have projects that are started, started long ago,  but I fear I'll never finish them because of this illness. I cannot fathom sitting down at a computer and making up stories in my head and finding all the pretty, right words to use like I once did.

Recalling words is hard. Even easy ones.

I know I've complained a lot lately and I apologize. Days like today are so difficult to bear, and here, on this blog is where I like to vent. The only place right now that I feel I can get intelligible words to page.

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.

This is one of those days...

Today is one of the days that my fatigue catches up with me. It's one of those days in which, if I didn't have a job, I wouldn't get out of bed. I believe I set myself back walking to work, and that was two weeks ago. I haven't been to the gym, I'm behind on some of my work, I've not cleaned my room, finished cleaning my office, got my taxes ready, done dishes, put away packages that came last week...

I can barely keep my eyes open. My head feels like someone hit me with a baseball bat. My entire body hurts. I want to cry.

This was something I was afraid of about working again -  that I wouldn't be able to keep up with it. My last job was 5 hours, until 1:30. I could go home and nap. This one, the hours aren't conducive to napping. And come next month I'm supposed to start working from 3 days a week to 5. Basically full time. And I still have two other jobs I don't want to give up. That is something I really didn't sign up for in the beginning and I really don't have any choice. We can't afford to hire someone else.

I don't know what to do. I just want to go back to bed. Sometimes I yearn for the days I was a stay at
home mom and could write all day, go to the gym, get the house clean and have dinner on the table by 5 (the Ultimate JFC). I wouldn't say life was easier back then, it had it's stresses, but my body didn't feel like this. My head didn't feel like this.

I wasn't like this.

But now I just have to suck it up and get ready for work (a job in which I do truly love btw) and hope there are not too many phone calls or hard questions. And I just look forward to Friday, a day I don't have to do anything if I don't want to, or I can catch up on the stuff I need to if my body and brain allow it.