Tuesday, March 22, 2016

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.


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.

Wednesday, March 2, 2016

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.


Saturday, February 27, 2016

Let's talk about Trump

Jeremy Nix wrote an open letter to his friends that support Trump and it was posted on the Huffington Post. I think in this letter, Jeremy articulates things many of us are feeling. You can go read his letter, but I am going to summarize some things that I believe are the best reasons not to vote for The Donald, and of course, add my own rant.

Donald Trump, if you really listen to him, this is what you'll hear...

Photo © Michael Vadon edited by Megan Bostic
He wants all the Muslims kept out of America because, terrorism. The pilgrims first came here for religious freedom (though it actually took awhile for them to get it). Everyone who lives here is not a Christian. There are Atheists, Agnostics, Wiccans, and yes, Muslims. Islam is really not that different than Christianity. They believe in one god, angels, prophets, prayer, faith, giving...Yes, there are a few Muslims that do terrible things in the name of Allah. But there are bad people in every bunch. Americans are shooting other Americans because of religion, color, culture, and for no reason at all, but let's block an entire religion from entering our country because they're probably terrorists. WTF?!? And the ones who are already here? Registration.

If Trump gets his way, every non Christian will have to bear some kind of mark so people know that they share a different belief system. Does this sound familiar to anyone? Trump is a modern day Hitler.

Trump is also a misogynist. He insults, belittles and marginalizes us. He calls women fat and ugly. He appreciates beautiful women, but not in a healthy way. He treats them like possessions. For instance, in his book Trump 101: The Way to Success, he lumps our beauty and elegance in the same category as buildings and works of art. We are nothing more than objects for him to admire, but not if we're fat and ugly.

As far as sexual assault goes, he's within the "boys will be boys" ideology. He tweeted the following about sexual assaults in the military:

"What did they expect would happen when they put men and women together?" 

Um, maybe that rape is vile and illegal and should not be an option? 

He think women need to rely on sexual appeal in business, that female journalists need to be hot, that we're tricksters and gold diggers... I could go on and on about what a giant douchebag misogynist Trump is, but I fear it would take an entire blog.

I don't know how any woman can consider voting for Trump. He will strip our rights away. He would reverse Roe v Wade, shut down Planned Parenthood, and forget about equality in the workplace, insurance covered birth control, paid maternity leave and anything else that would empower us. Anyone sporting a vagina is not on his list of priorities, and truly, seems to not even be human to The Donald.

He wants to build the Great Wall of 'Merica. He wants to keep Mexicans out. This country was built on the backs of immigrants. None of us are native to this land aside from those who were here before the white man came. Those from Mexico do the jobs no one wants to do and they're damn good at them. They're hard workers. Many of them pay taxes. He thinks all immigrants are thieves, rapists and thugs. Can you say, stereotyping? Profiling? Racism? I knew that you could.

He believes we don't have a gun problem, we have a mental health problem. I say we have a problem with both. Our country has too many guns. But Trump believes guns save lives and we should have no limits. He believes gun ownership makes our country safer. Tell that to all the victims of mass shootings. He believes gun violence is inevitable, so regulating them would be futile. Are you fucking kidding me? The statistics and facts are out there. Less guns, less gun death. Period.

And the newest Trumpism, he wants to get rid of the First Amendment. WTF? He wants to take away our freedom of speech, our freedom of religion,  the freedom of press and peaceable assembly. He wants to punish people for speaking or writing opinions or truths. He wants to take away the rights of our faiths, beliefs, and the way we worship. He is a true Nazi.

How can his followers not see how dangerous he is for our country? He is a hate monger. If he's elected we will be at war in the blink of an eye. He's like a child that can't wait to blow some shit up. I honestly would not be surprised if we ended up in a civil war during a Trump presidency. 

He wants make America great again. Which time period was that exactly? Before gay people had the right to marry? The years we sent our troops overseas to die for needless wars? Before women could decide what they could do with their own bodies?  When Japanese Americans were thrown into prison camps and Italians had curfews? When women belonged in the home, having babies, making sure dinner was on the table and a martini was waiting for hubby when he came home from a long day at work? Before women and blacks had the right to vote? When we still owned slaves? Are these the great times of which Trump speaks?

This country has had moments of greatness. The Separation of Church and State, as that's really when religious freedom really began. The signing of the Declaration of Independence. The Ratification of the Constitution. The Emancipation Proclamation freeing the slaves. Immigration at the turn of the century when we became a melting pot. Women's Suffrage. The Civil Right Act of 1964. When Armstrong walked on the moon. Desegregation. Affirmative Action. Americans with Disabilities Act. Electing the first black president. These are the moments that has made our country the greatest - When we come together to work for a better America.

What Trump is already doing and will continue to do is tear us apart. He is a loud bully, sexist, misogynistic, xenophobic, homophobic racist. He will be cancerous to society as we know it. A Trump presidency will destroy us and it may take a long time for America to recover, if ever.

Thursday, February 25, 2016

More of the battle

I was going to write about the joke of a presidential election happening, or the idiocy of blocking a nomination of a supreme court justice, the building of a methanol plant here in my city, or maybe even the new emoticon buttons on our facebook posts, but I've had some people tell me they have enjoyed being educated about CFS and I should continue to write about it. So here I go...

The view from my back door today.
Today would have been a beautiful day to walk to work, but basically, CFS and insomnia (could be CFS related insomnia, but who knows) has kicked my ass this week. I pushed really hard last week and now I'm paying the price. Last night I tried a little "herbal" help for my sleep. Yes, I mean weed. Not just any weed, but weed designed specifically to help you sleep. Don't judge, it's legal here. It made me tired. I fell asleep. Then I woke at 2 am and stayed awake until almost 6 am. When I woke up again at 9ish, I feel like I got hit in the head with a baseball bat, I have enormous bags under my eyes and they sting, and my entire body aches, especially my back and elbow (the joint pain is excruciatingly painful).

A friend told me that retail weed is weak and that I should try medical weed before the government ruins it for everyone (they've closed a bunch of MM stores, I assume they will continue to do so or start regulating their weed). So, anyway, the sleepy time weed didn't work.

Many people on my Facebook page gave me ideas for how to sleep better. I appreciate the support, I do, but none of it is anything I haven't tried before, with the exception of meditation and Zzzzzquil. A friend invited me to her meditation/yoga class next week, and I'm considering going though I hate yoga. And I think I'll go to the drug store for some good old fashioned Zquil. May try xanax as well since I have some.

Having CFS comes with a lot of other crap. Insomnia is one of them. Restless leg syndrome is another, which also is cause for a lack of sleep. Pain of course. And for some reason, I get itchy, especially my back and feet. No idea why. I've switched body wash, laundry detergent and fabric softeners to dye and fragrance free, but it doesn't seem to alleviate the problem.

I need to address some issues with doctors, unfortunately, I have to switch some doctors around because of my health insurance. I also have been doing research and finding what may help those who suffer from CFS with insomnia.

These sleepless bouts have been going on for about 3 years. I'll go sleepless for a few months, then have one day that my body revolts and I can't get out of bed all day, then it starts over again. Hopefully that "bed in" day will be on a day I don't have to work, but with my luck, I probably can't count on it.

So tonight, I follow some of the guidelines I've found and maybe take some Zquil. Hopefully I can get more than the 2 hours and 54 minutes I got last night (according to my Fitbit).

My Dad. He's awesome.

John Messina, Personal Injury Attorney

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