Megan Bostic's Blog, page 2

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.

Let's talk about Trump

 Photo ©  Mike Licht 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 BosticHe 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.

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).

Insomnia and other pesky ailments

I know you're probably tired of me talking about CFS (Chronic Fatigue Syndrome), but like I said in a previous blog, people don't get it. They don't understand it. They don't know how debilitating it can be. It causes things like insomnia. I have suffered insomnia for about three years now. Something I didn't know was connected with CFS. According to my FitBit, I never get more than four hours of restful sleep a night. Last night, I woke at 1:30 am and was up until 6 am. I did finally go back to sleep, but have no idea how this giant break in my sleep will affect my day.

Also, a follow up from last weeks blogs in which I walked to work...I've been paying for it. My entire body aches, I'm so exhausted, I've been having dizzy spells...I didn't walk to work yesterday, because I had some things I needed to bring there that would have been too burdensome to carry. This morning I needed to sleep as long as possible, so I won't be walking today either. I hope to get back to it tomorrow. I'm serious about fighting back. It may have put me out for a few days, but I'm going to get right back to it when I feel my body can handle it.

Luckily I have a job that is fun and doesn't take much physical effort. I can only handle  5 to 6 hours a day, especially when using my brain a lot. When I was trying to find a job, I was worried I wouldn't be able to find one that fit my needs. I was afraid I'd have to go on disability, which felt wrong because I'm perfectly capable of working, I just can't work a full time job. I even had to fight to get unemployment because I was only looking for part time jobs. I had to get a letter from  my doctor and have a hearing with a judge. Thankfully she understood. I'm glad to have a job in which I only work 6 hours a day,

I worry though, because come April, I'll have to work 5 days a week. I know that sounds lazy, but the struggle is real. However, I did work 5 days a week before for 5 hours a day and I did okay. I usually had to take a nap as soon as I went home. This job is different because my hours are noon to 6. There is no nap time. If I had my choice, I'd get up early and get things done, then go to work. But the reality is, working those hours, I need to sleep as late as possible to help me make it through the day.

I know it probably sounds pathetic to a normal person, but I can't reiterate how real it is. I used to be a person always on the go, always getting things done. I had endless energy and could write, clean, cook, exercise, take care of the kids, do the grocery shopping, help with homework...how I'm lucky to get one of those things in during the day. So believe me, it's frustrating. I wanted a curable diagnosis so I could get back to being my normal self. But what my doctor said is this,

"You have to come to the realization that you have Chronic Fatigue Syndrome. You need to learn how to live with it. You need to learn how to love yourself with it."

I'm still learning.

To Kill A Mockingbird and our never ending battle with racism

As probably every teenager on the face of the planet, I was forced to read books for English class that I didn't enjoy. However, when I read To Kill a Mockingbird, it immediately became my favorite book and remains in that top spot to this day.

I think perhaps it was the first time I really thought about social injustice. I know racism and all kinds of bigotry were present, but I mean, I was still a kid. I didn't notice things like that really. It would be nice to stay blissfully ignorant, but the fact is, we can't. As far as we've come since Harper Lee wrote about good and evil, injustice and social profiling before it had a label, we still have a long way to go.

The unfairness that befell people like Tom Robinson, though maybe not as overtly (or maybe so, depending on who you ask), still exists today. People are judged by the color of their skin, the god they choose to worship, who they choose to love. While all those may not be mockingbirds, complete innocents, they are still enduring great injustice through intolerance and prejudice.

Let's talk about black history month for example. Many people ask, why do we need it? And, why is there no white history month.I will quote my own self from my Facebook profile to explain the whys.

Today Black History Month begins. I know some people question its importance, including some African Americans. I may not be able to express why with the right words, but I'm going to try to explain its importance and significance.

For centuries schools have taught history. However, many of the achievements and contributions made by African Americans have been omitted, so really, our history lessons were whitewashed (also the reason, no, we don't need a White History Month). Just like whites, African Americans have contributed greatly to art, science, politics and sports, among numerous other components of American culture. We should know about these contributions. We should learn about them. We should care about them.

Blacks have, and continue to, endure hardships we can't even fathom. They have overcome many obstacles and injustices and have triumphed. There are works of art, events, inventions, and progress that would never have been possible if it wasn't for the contributions of African Americans.

I think it's our responsibility as Americans to learn more about our prolific history, not the whitewashed one we were taught in school, but the one in which a diverse people made and continue to make notable and innovative achievements and contributions, allowing us to become the strongest nation in the world.

So, that's why.

Photo by Gage Skidmore And let's talk about the 2016 Oscars. It's really not just about black, but about diversity. Every actor and actress nominee is pretty much the whitest people you could choose. I'm not saying they don't deserve their nods. To be honest, I've not seen many movies this year (okay, I've seen one and it wasn't Oscar worthy) but many of them have actors of color that have been overlooked when others related to the movie have received nominations. Such as:

Creed: Sylvester Stallone is nominated for Best Supporting Actor, but no Best Actor nom for the talented Michael B. Jordan?

Straight Outta Compton:  White people nominated for writing, but no nod to actor Jason Mitchell, whose performance was critically acclaimed.


The Hateful Eight: Jennifer Jason Leigh is nominated for Best Supporting Actress. No nomination for Samuel Jackson.

A couple others passed over...Idris Elba for Beasts of No Nation and Will Smith for Concussion. And that's just the actors. Director of Creed, Ryan Coogler and director of Straight Outta Compton,  F. Gary Gray were also overlooked for Oscar nominations.

It's really a sad statement that 56 years after To Kill a Mockingbird, racial inequality and discrimination still exists. It's too bad, that just as Scout and Jem had to witness  the injustices in a dominantly white society, we still have to endure the ugly face of prejudice. And that this mindset, though it may be diluted from generation to generation, is still passed on. Racism is not innate, it's learned behavior. What I wouldn't give to live in a world that sees each other through the eyes of children. They don't notice color, at least not when they're very young. They see beyond the color of skin into the heart of a person.

And as I said, it's not just about color. It's about religion, sex, sexual orientation, social class...we should view each other as Mockingbirds, worthy of respect and admiration. We should embrace our differences, not judge them. Instead of knocking each other down, we should be lifting each other up.

I know society has come a long way since the era to TKAM, but it's still not good enough. We need more Finches in the world. Those who lend a voice to those who can't speak for themselves. Those who understand that people shouldn't be judged because they are different in some ways. Inside we are all flesh, blood, muscle...the things that make us all human. The things about us that are the same. 

Another Day in Paradise

9:34 am
Skeptical Megan is skeptical. My body is feeling the affects of my last two days of pushing hard. I
woke in the middle of the night and stayed awake for a couple of hours. It was hard to get out of bed this morning. My back, both my knees and my elbow hurt. It's a beautiful day, and I'd really like to walk to work today, but I'm afraid if I do, I woke be able to function properly the next few days. It's another long workday with my shift then a two hour event following.

I have an hour to make up my mind...more later.

12:57 pm
I opted for walking. the day was too beautiful to waste. If I'm going to skip the walk, I'd rather do it on a gray, rainy day. Plus, I get to admire the view. There's a walking/biking path on part of the route to the wine shop. It's shorter that walking the busy commercial street.

I lightened my load today by leaving my computer at home. I put the files I might need at the shop on my external hard drive and packed that instead. Also, I opted for tennis shoes instead of Uggs. I love my Uggs and they're comfortable, but not for walking 2 miles. I packed a pair of Mary Janes to change into. Once again also packed hair product, makeup and deodorant.

At just under a mile in, again, my middle aged hips screamed. I ignored them, knowing they would be numb after a little more walking. Everything else felt pretty good, especially my feet.

People gave me funny looks as I trudged my way to work. I supposed maybe I looked a little funny, flowy pink and white blouse, black skirt and tights, cross trainers on my feet, backpack slung over my shoulders, elbow brace in place. My hair (which all of a sudden seems very long) flew out behind me in the light PNW breeze. I forgot to bring a hair band for my walk to keep it out of my face and to keep my neck from sweating too much.

I actually got a honk and a kissy sound from a passing driver. People actually still do stuff like that? Cat call and such? It was flattering, even if I totally ignored him.

My mail carrier friend, Jason drove by and waved. Nice to see a friendly face on my journey.

I know I'm close to the shop when the sidewalk flattens out. I'm glad I decided to walk. In the shop I stood in front of the fan for a few moments, patted my face with a paper towel, grabbed a glass of ice water and changed my shoes. Close to 6,000 steps before work again.

It's kind of gross, walking to work and getting kind of sweaty and stuff. But I think my pack would be too heavy were I to bring a complete change of clothes with me. For now, I'll just opt for the paper towel pat down.

I'm a bit fearful about how I'll feel tomorrow. The good thing is it's Sunday, and I don't have to do anything if I don't want to.

Living with CFS is difficult sometimes, as I've mentioned before. Every day is different. I think the hardest part is the lack of understanding by others. I've had people ask me if I want to do this or that, and I'm like, "I can't because of my medical condition." Usually I get laughed at. I don't look sick. But I never feel fully rested. My body urges me to slow down, or stop even. I'm lucky, because I am able to work, while many who suffer are wheelchair bound or bedridden all the time. Don't get me wrong, I've had days when I couldn't get out of bed, but mine happen mostly when I overexert myself mentally or physically, or I'm dealing with a large amount of stress.

Right now my elbow hurts and I'm a little tired, but I will continue to fight this. I want to work in my yard again, plant flowers, mow my own lawn, keep my house clean, cook. All things that are hard for me to do because of CFS. And I want to get to a place where I feel whole and happy again.

Thanks for reading. Have a great weekend. Hey! If you ever see me on my route to work, honk or wave. It will inspire me to keep going.

Fighting Back

So, yesterday, if you read my blog, you know I walked to work. I did pretty good. Took me 40 minutes to get there. Worked 6 hours. Then I hosted an event at the wine shop for 2 hours. After that, I went to my older daughter's double header indoor soccer game. As the second game was starting, the exhaustion kicked in. That is probably the longest day I've had since the CFS (Chronic Fatigue Syndrome) kicked in more than three years ago now.

I do not want to let CFS define who I am. I haven't fought it much, because it's just too hard and tiring, but I want my body, mind and soul back. I'm ready to be fit again and lose this weight I've gained as a result of fatigue. My body has undergone many horrible symptoms caused by CFS -  it's not just about fatigue. It affects my sleep, which I've not got a decent night of in years. Causes joint pain, which I have in one knee and one elbow. Also, dizziness, allergies, and a plethora (one of my favorite words) of other fun physical problems.

Truly, I'd like to get my mind back as well. CFS is not just a physical illness, but a mental one too. I suffer from serious brain fog. At first I didn't realize that was a symptom of CFS. I thought (and maybe still do) that I had adult ADD because I couldn't focus. My writing has suffered. Probably why I've not completed another novel. Often when I'm speaking to someone, I can't pull up the easiest of words. Words anyone, even a child could remember and come up with. When I'm working on freelance writing, the thesaurus is my bible. My memory has suffered too. I also suffer from CRS (can't remember shit) which I worry annoys people I talk to often.

Now let's talk about my soul. I've been very open about suffering from depression and anxiety. Now, this I've suffered even before CFS, but having it doesn't help one bit. When, like me, you used to be active and witty, smart and productive, then suddenly you're more like a sloth,..it affects your self esteem and confidence.

So today I stepped up my workout. Instead of walking for a length of time, I chose to walk a distance. Then I walked 10 minutes more because I had to finish watching House Hunter. I mean, they were choosing a home in Hawaii! I had already invested 20 minutes.  Then I did some strength training. I mostly work on my arms, because, really, my legs ain't so bad. I want to get rid of what I like to call "Back Boobs."

I have to be careful though. If I overdo it, it could set me back a few days. I remember when I first started working out again, I went to this yoga class, which was more like yoga on steroids, and it took me out for a week.

So why am I sharing all this with you? For a couple reasons I guess. To make myself accountable. If I'm telling the world, I would feel a fool were I do give up before reaching my goals. Also, to raise some awareness for CFS. Those who don't suffer or know someone who suffer don't understand. I remember when I first started feeling tired I was getting the, "it's just the weather" explanation, of course, I'd been fatigued for over a year, so that couldn't be it. I was told, "you just need to exercise more" and at the time, I was kickboxing and walking regularly. Then I get people who say, "Oh yeah, I have to nap too," to which I ask, "for 3 hours? And do you have to set an alarm to be able to wake up for dinner or kickboxing class or etc etc etc."

It's really very frustrating. I mean, seriously, when I was diagnosed I was like, "that's a cop out diagnosis." But I know too well that it's real.

Thanks for once again reading my rant. I'll get there. I'm determined. I don't know how long it will take, but one of these days, I will find the balance I need to be a healthy, focused and productive once again.

Read more about CFS at the Mayo Clinic and the Washington Post. There's tons of info, just google.

A change for heart

When Chronic Fatigue Syndrome kicked in 3 years ago, it was debilitating. I had to take long naps in the middle of the afternoon, I was forced to quit kickboxing, and exercise I loved, because it became too hard on my tired body. I didn't have the energy to do any normal activities after work like clean, cook, work in the yard...Some days I could barely get out of bed. It also made my weight steadily climb.

As of late, I have been truly disgusted with myself. Though I have started working out and I eat fairly well, I cannot lose this weight I've put on the last few years. I worry about my health because people I went to school are started to die. I long to be fit and healthy again and live a long full life.

I bought myself a Fitbit. My work is very sedentary. I work at a computer pretty much all day doing research, writing, marketing...Even when I go to the gym after work and walk on the treadmill and lift weights, I still can't seem to get my 10,000 steps in.

Today I got a wild hair up my butt and decided I needed to start walking to work. There is nothing else I could think of that would help me get those steps I needed. I figured between that, cutting out most carbs, some dairy, cheese, and drinking one glass of red wine a night for health, maybe I could drop some of my excess weight.

I looked it up on Google maps. It said it would take me 40 minutes to get there. I looked out my sliding glass door. It was windy, but not rainy. The sky was peeking through gray clouds. So I went for it. I emptied all the unnecessary things out of my backpack, added my computer and accessories, hair product, makeup and deodorant and off I went.

 I regretted my decision almost a mile in when I felt the first rain drop. Then another. Then another. I put the hood up on my sweatshirt and kept going. I thought, if it got too bad, I could call my daughter. Lucky, the rain abated as quickly as it had began.

I looked at my Fitbit about a mile in and had only achieved about 1300 steps. How could that be possible? Was walking to work even worth it? I got hot and took my sweatshirt off.

There aren't really any steep hills, but there are a few steady inclines, which I think are almost worse.
At just over a mile, my 40+ year old hips screamed at me to turn around. I ignored them. I was already half way there. I was cold again, and put my sweatshirt back on.

Someone in a truck honked. Was it you? Let me know. I really couldn't tell who it was.


When I could finally see the shop, I was home free.

When I walked through the door, I checked my Fitbit. I was just a few steps away from 5,000 half a day's goal. Got a glass of water, turned on the fan, and here I am.

My bad elbow hurts a little. Hopefully the 5+ pounds I carried on my back won't affect me too much if at all (I'm old you know). My hair didn't frizz out too much, my makeup didn't melt. It was a good experience.

I'm determined to fight my CFS. I'm tired of it keeping me from getting things done. My goal is to get my mind, body and spirit back in alignment (if it really ever were). I think walking to work will be a good start if I can make it a habit. It's a little hard right now, because the weather is still pretty crappy here. Come summer, though, I'll be good to go.

Thanks for reading my crap. 40 pounds to go, mind starting to unfog, happiness on the horizon.