On a Cliff

In all honesty, it seems like the devil has been trying very hard to push me off a cliff for the last few weeks. Although I am always sick (yes, ALWAYS) this has been a particularity rough couple weeks.

I have been in a relapse of my ME since June. Planning and carrying out the info booth in Raleigh at the end of May as party of the Millionsmissing protest really took it out of me. Then came trying to celebrate Memorial Day weekend with my family like a normal human was the straw that broke the camel’s back. I suppose I was on a little high after being a part of such a successful and significant movement. http://millionsmissing.meaction.net/

It’s been kind of down hill from there. Yes, I know the triggers were  around Memorial Day and it’s almost August, but that is the nature of ME. Flip your switch and you can be in a relapse for months, or may even downgrade your condition permanently. It’s a terrifying game.

So anyway, to the last few weeks. My beautiful, sweet, happy, funny 16 month old daughter, Lilly started daycare about 2 and 1/2 weeks ago. When I dropped her off on her first day, I saw a room full of runny noses. When the teacher saw me wince, she mentioned that those children were teething. I nodded my agreement and wanted from the bottom of my heart to believe her. Well, fast forward a week and we all get it. And it just. won’t. go. away. For the last week and a half, I have become a ghost, hovering between the land of the living and the land of the dead. A cold would be an annoyance for most, but for someone with a severe chronic, immune related illness, it can be devastating. And to top it all off, just before I came down with the cold, I started a new treatment- Low dose Naltrexone- which my body decided to reject.

New meds are always risky for me as I have a severe sensitivity to medication. However over the years, I have found a cocktail of meds that saved me from being bedridden (after about two years of being so.)

So anyway, I have been dealing with a relapse, a cold, and a bad reaction to a new med (which I’m off of now.) And as these shitty things keep piling up, I can’t help but feel like an evil force is trying to make me give up. Like, literally, what other bullshit could I be dealing with right now? How much can I hurt and suffer before I give in? Do not worry about me to much though, I have been way sicker for way longer than this and have survived.

I wanted to write about it for this reason: http://www.meadvocacy.org/tom_jarrett?utm_campaign=tomjarrett&utm_medium=email&utm_source=meadvocacy  a member of the ME community recently took their own life. The community has suffered five losses this summer from breast cancer to suicide. And as much as I wanted to suffer in silence and soldier on as usual, I remembered today, a day that I feel particularly vulnerable, that I am not alone. I am a member of an increasingly vocal and hopeful community.

They say when you are at the end of your rope, tie a knot and hold on. I know for those with ME, you feel like you’ve dealt with too much for too long, but you never know what the future will bring. I think for us, help is on the way! Please always remember you are not alone with this and we are here for you!

 

It’s Better to Talk About It

They say if you’re depressed, it’s better to talk about it rather than battle it alone. So here it is: I haven’t been in a good place this month. Anyone that knows me pretty would know that this was coming, that I’d be sick almost all of June after taking on too much in May. Don’t get me wrong, May was incredible. Matt and I set up the info booth on the NC State Capital grounds in Raleigh as part of the Millionsmissing campaign for MECFS awareness. Also my folks came to visit for Memorial Day weekend and we had a blast. All that was enough to put me on my butt for awhile, but then Matt and I got hit with a terrible cold for the second time this year.

It was the perfect storm to create this relapse. There’s an article in the literature I received from Dr Lapp on flares and relapses that has given me some insight. Apparently, no matter how “good” an ME patient is, we are subject to spontaneous flares. A flare typically lasts about 2-3 days. A relapse can last for weeks or months (yay!) And considering this has been about 3 weeks, I’d call this a relapse. The article explains that if you have a relapse, you should examine your activities to see if you’ve gone outside your “energy envelope” (what you can do in a day without throwing your switch.) Well, I knew that planning and executing Raleigh then celebrating Memorial Day with my family would probably do this, but I always forget how bad relapses actually are.

If you have ME, you know all to well what I’m talking about. If you don’t have ME and want to empathize, imagine having the flu for three weeks. Where your body feels so heavy, it takes all your strength to move it, you’re so listless, you have no desire to move. Your head hurts so much, your entire body hurts. You just shake from profound weakness. 3 weeks. I can’t quote explain it, but it feels like you’ve lost your soul.

I read the article on relapses from Dr Lapp yesterday. The first suggestion for dealing with it is to increase your antidepressant. Noted. Sounds like a great idea. This shit is the worst, I’m angry and in actual physical pain. I’ll take all the help I can get.

The second suggestion is not to lay in bed all day. Hard not to do when you feel like actual death, but I’ll try. It says to try to maintain your normal routine as much as possible. Well gee, trying to be “normal” is what got me into this relapse, so I’m weary of normal right now. Right now I feel like a creature that lives at the bottom of a dark hole.

I suppose not leaving the house all week and barely seeing the sun is not helping with the depression, anger, and isolation I am feeling. I am out right now for my allergy shot (whoop!) and going to stop at the store to pick up some B12 that the article suggested to help get over the hump.

I usually try to stay positive, but this shit just breaks you. Until then, I’ll try not to exude my Creature from the Black Lagooness to the world.

And then I read about studies showing people with ME having significantly reduced life spans! Perfect. I could have gone to my entire drastically shortened life not knowing that. http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-syndrome

A Cause Worth Sacrificing For

I am hurt right now and I am angry. I am also having a flare of my MECFS as the price I pay for trying to enjoy a semi-normal holiday weekend with my family.

I just read a facebook post from a desperately ill ME patient that had been turned away from the University of Pennsylvania. She has lost 20 pounds in the last four months and is at 83 pounds. The reason she was turned away: her diagnosis- Chronic Fatigue Syndrome. The hospital was even threatening to call the authorities as she begged for their help.

This post reminded me of the handful of times that I have been so desperately ill and beside myself with ME that I was suicidal. My obviously worried family would beg me to go to the hospital, but I had been down that path before. It would be a waste of hundreds of dollars for NO HELP WHAT SO EVER.

What will it take for ME to get the respect it deserves? It makes me think of the start of Vietnam when Buddhist monks would burn themselves in protest of the Diem regime. Is that what it would take?

I am starting to feel that I would be willing to give my life for this cause. This feeling coming from so much frustration at the discrimination I myself am facing as an ME patient.

I have been denied twice for SSD and have been waiting 16 months to see a judge. BCBSNC is trying to weasel out of paying for an MECFS specialist, and now to hear about the discrimination others are facing is too much for me right now.

I have a beautiful little girl that I can not leave, otherwise, I would consider this.

Not Alone Anymore

2011 and 2012 still seem like a bad dream now. The memories of those years will haunt me for a lifetime. 2011 is the year my body completely fell apart and I had no idea why. In late 2010 I was prescribed an antibiotic and it started a horrifying cascade of medical problems all of which had doctor after doctor scratching their heads and my coworkers thinking that I had gone crazy (trust me, I was starting to wonder the same thing.)

The most distressing symptom at the time was a terrible burning nerve pain in my chest, a feeling as if I were being electrocuted from the inside out. I would learn years later that people with CFS have sensitivities to anything their body perceives as a toxin- medications, alcohol, mold, chemicals, etc. During the seven months of the horrible burning nerve pain, I would stare longingly into traffic wanting more than anything just to end it all. Just for the horrible pain and terror to be over.

As soon as I got the nerve pain resolved with a medication called Gabapentin, next came the extreme stomach issues (which I would later learn was IBS-D, also common w CFS patients.) And horrible weakness and unrelenting fatigue.

After two medical leaves from teaching, I knew it was the end of my teaching career. When I went to stay with my parents, a simple trip to the grocery store would leave me in angry tears. Why the hell was I too weak to walk through a store? What was wrong with my body that was stealing my life?

I remember crying in my mother’s lap just telling how alone I felt with all of this. The 10 doctors I had seen were not providing much help. I was still too sick to ever think I would have my life back.

Fast-forward four years, I am married to a wonderful man have have a beautiful one year old little girl, but no one would ever know the struggle I and my family have gone through due to my illness.

The exciting thing is that because of the magic of social media, members of the CFS are mobilizing a movement to make their voices heard. They are staging a huge protest in Washington DC, Seattle, and San Fransisco on May 25th to raise CFS awareness and try to get badly needed research funding. CFS gets less research funding than Hay Fever and male pattern baldness, yet is twice as prevalent as MS. A suspected 3 million suffer with CFS in the US yet only 20% are diagnosed due to the odd spectrum of symptoms.

If you love me or anyone with CFS, there are easy ways to get involved. It can be as easy as posting a photo of your shoes on social media. Or a photo of yourself wearing your undies over your clothes if you’re brave!!

Please get involved if you can just follow these links!

http://millionsmissing.meaction.net

http://www.undiesontheoutside.org

Crime and punishment

When you’re always exhausted, hurting, and struggling to make it through the day, it’s really hard to feel like you don’t deserve it somehow. Like you must have done something to deserve it because a good person wouldn’t have to go through this. I try so hard to be a good person and do the right thing because I hope it will come back to me somehow. I am scared to do anything that I don’t 100% feel is right because I’m scared I will be punished further. I can’t take anything more than this.

ME/CFS Christmas Card Campaign

image.jpegI started my own little campaign to write to some of the prominent ME/CFS doctors and researchers around the country. It is my hope that I can help to put a human face on this horrible illness and encourage them and thank them for their work. It may not be much, but it makes me feel like I’m helping the cause. imageimageimage

Truest Words

true

I feel Molly’s reply to an article posted on facebook is one of the truest things ever said about those living with ME/CFS or any significant disability. Think of how unnerving it is to be driving an unreliable car that constantly breaks down. Now imagine that is your body.

When I feel bad about the limitations of having this illness, I decide to give myself credit for simply existing and getting through every day with so many impairments. I go even further and try to live as normally as possible. I approach each day with uncertainty of what my body will allow me to do. That’s courage.