But Where Are The Good Days....?

I constantly forget CFIDS symptoms that are legitimate. So I'll have these symptoms, then I'll freak out thinking it's something new, only to find out it's old hat. CFIDS it is. One of those "forgotten" symptoms is an upset stomach. I get it in a very special way. I get agita, all the time. Today I threw up in my mouth three times. That's a normal occurrence for me. Lately I've been having severe nightsweats. Yet another CFIDS symptom that I forget about, until I wake up drenched in what feels like a gallon of sweat. There are so many more symptoms, that majority of which I suffer from.

But this post isn't really supposed to list my CFIDS symptoms. This is more of a "checking in" post, catching any readers up to date on what is going on with me, physically and emotionally. If you care to know the truth in all it's forms, continue to read. If not, check back at my next posting?

On June 26 I had a horrible, sudden onset, muscle spasm and my trapezoids locked up. The only position that I wasn't in pain was tucking my chin to my chest. It was severe and paralyzing. Feeling hopeless and terrified, Kevin called my Physical Therapist, Travis, who gave us some suggestions: stretches & heat, but the muscles wouldn't release. I was in agony. I was sobbing, with bits of calm or just trickling tears, then sobbing more and more. 

So I went in to physical therapy. Travis did manual manipulations and while I was there my pec-minor on my left side started to spasm as well. (Incidentally a pec minor spasm can reproduce some of the same TOS symptoms, soooo awesome.) It was severe enough that the PT students could see my shoulder raising off the table. Travis got that to release but my traps stayed steel-rod-like. He hooked me up to electrical stimulation, which usually I have a high tolerance for, but I didn't that day. I made them set it much lower than normal. Within two minutes my pain got so much worse. The tears came rushing back. Kev went to get them, and at that point Travis said my pain was crossing the line and I needed to go to ER or Urgent Care. He said e-stim is a pain relieving modality and for that to set me off, I need to see a doc to check for fever etc....

I went to the particular urgent care place he recommended and the wait wasn't too long but it was awful because of how I had to curl up and tuck my chin to get pain relied. The doc prescribed me a stronger muscle relaxer. It definitely helped. I'm now only sore like I did a hard work out using those muscles, so I'm definitely getting better. Since then my PT appointments have only been light and gentle, to be careful not to flare anything up again. Since then I have had frequent, more minor spasms of my lats and my traps continue to feel as though I went through a strenuous workout.

I have no answers for what is going on with my back and neck muscles. I also have symptoms of TOS that I shouldn't be having this far post-op (blood pressure affected and other stupid things). There are no answers for that either. I've always been a medical mystery and it seems I always will be one. 

What came out of this was obviously more questions. The biggest of which was "but where are the good days?" I believe I was reassuring Kevin that this was just a freak bad day and I'd be better soon. Then he asked me, "but where are the good days?" In truth, I was reassuring myself as much as him because I didn't know why this was happening either but I wanted to believe what I told him, that it was just a bad day. I want to believe I'm due for so many good days. I wanted to believe it because I ask that same question both internally and out loud all the time. I get sad and scared and angry and I need to know where the fucking good days are hiding. The state of existence in which I live in is full of fear and unknowns. I do have good days (relatively speaking), but the bad days are overwhelming.

Something positive has come from this. It may be temporary, I don't really know. It has only been three weeks since this freak incident. But at least for now, Kevin and I are both consciously focusing on a change of perception. We are choosing to see more of the good. It's our way of creating good days rather than waiting for them to magically happen. Every day has good and bad in it, whether you are 10 different kinds of broken like I am or if you're a "normal" person who commutes to work. Good and bad everywhere. But the overall theme of the day, that's our choice. Believe me, I have enough bad that I cannot control--the last thing I need is to put blinders on and miss the good that is there.

So we are celebrating the small victories, whether it's something fun that I'm able to do or whether it's doing productive things. We keep some structure in my days so I have a routine conducive to my limitations, which helps maximize success. We are making our own happiness. 

It's all perception. Instead of choosing to be bummed when yardwork wipes me out and causes immense pain, we make that a good day. Pain and exhaustiion, good? No, not really. But it's definitely good that I felt enough strength to do some of the yardwork. The alternative is me being too tired/weak to get out of bed and spending the day laid up watching life go by. And the structure helping this is scheduling an evening of rest that night and a lazy day-after. My body being dead after that work is inevitable, but it is a choice whether I celebrate the successful work I did or whether I pout and dwell on the post-exertional malaise. Change of perception, bam! 

So where are my good days? They're somewhere in my mind in between the bad days and the pity parties. They're in beautifying my home with roses, lilies, and butterfly bushes. They're in spending a long weekend with family, even if my sleep schedule confuses everyone a little. They're in a day at the beach with my nieces, even though my body had to be told to suck it up to get out of bed. 

MUST Read & Watch: Robin Roberts' Arthur Ashe Courage Award

"Make your mess your message."
"When fear knocks, let faith answer the door."

When I was in the height of my playing days, I was inspired by Briana Scurry more than anyone else. I trained nonstop and planned to play Division 1 college soccer, then professional. If there wasn't a league, I fully intended on being a part of forming that. I was going to do it. It took 5 knee surgeries in my high school years to put the brakes on those plans. I'm stubborn, if nothing else. Michelle Akers took over as my hero; another female soccer superstar, only one with extreme health problems.

A lot has happened in my life in the last decade since I graduated from high school. Regretfully, knee surgeries are looking like a cake walk in comparison to the health struggles I now face. I have adjusted to life as a dedicated sports fan, as well as one can. I coached, until my health made me stop. I played in adult leagues, until my health made me stop. My now-husband was the Sports Editor of the newspaper that I was the Editor-in-Chief of in college. Sports will forever be a huge focus in my life. My sorrow is that struggle after struggle, they keep being taken away from me, to the point that I am now just another fan on the couch.

I do vote for the ESPYs, and watch the show, despite arguing with most of the awards and feeling that my fellow fans are mostly idiots if they vote the way they do. Still, how can I not vote and watch the spectacle? Last year I vividly remember the bonding experience of voting with my dad, who was much too busy to watch the amount of sports programs I did. So I showed him the video clips of each category and we voted together.

This year I voted alone, occasionally inviting Kevin to give his two cents. Tonight, I went to dinner for 6 at my family's favorite hole-in-the-wall Italian restaurant, as an early birthday dinner for ME (July 23, turning 27). I had time for an hour long nap before the ESPYs, because my medication sucks. I could've been asleep for the night at 8pm. Kevin woke me though, knowing I've been looking forward to the debacle.

Over the past few years, I've taken great joy in seeing how women's sports and specifically women's soccer have become more a part of the ESPYs. However, this year the number one moment for me was watching Robin Roberts receive the Arthur Ashe Courage Award. Roberts has already greatly affected my summer with the Nine for IX ESPN feature series she produced.

Roberts has quickly taken over as my newest inspiration. She was a strong athlete, turned sports journalist, turned major broadcast journalist. Then she became a cancer survivor, and again last year beat death again in the form of MDS (an illness caused by cancer medications -- pay attention to science news: chemo causes nearly as many problems as it solves!). Robin faced both her illnesses with incredible courage, and all under the public eye, in a way that NO ONE has.

I relate so much to her struggles, and the things she said in her acceptance speech. Now, I admit both cancer and MDS are life-threatening; none of my several diagnoses are terminal. However, none of my diagnoses have a cure. So in a way, for me, that balances things out. She could have died from either condition; for me, the fear isn't death, it's life like this.

She fought her battle in the public eye, and showed how vulnerability can equal strength in a unique way. I have always been an open book, except in matters that make me scared or hurt. I'll tell you anything I think or feel or have done, unless it is something that might make me cry. Over the last several years, one of my life/spiritual journeys was finding the courage to be vulnerable. One of the ways I've put that into practice is not being able to cry in front of people.

A much more significant way I've practiced that life lesson is, duh, this very blog. I strive to have the courage and strength to invite any of my readers, friends, and family members into my life. To share my utmost weaknesses and fears, in hopes that it can be a two-way street of you all helping me, and me helping you.

If you didn't watch that video at the top, please go watch it. If you did, watch it again and think of me. Because I watched it real time, sprawled on the couch hugging Blaze with Kevin petting my hair. And God love him, with that animal instinct, when I started crying, Blaze literally hugged me. He wasn't just laying alongside me; he tucked his neck around mine, then licked my tears. He knows things.

I am scared that my life will always be like this. I am scared that I will never get better. I am scared that I will only get worse. I haven't been given much reason from the medical community to think anything different. I am told things like, "make sure you have a good therapist" and I am asked why my insane cocktail of medications does not include an anti-depressant. Some days I feel that I've lost the fight in me, and on those days I just hold on til the next day. I feel I have lost most of my dignity and strength. I do not drive more than a few miles alone; if I have to drive farther than that I have to skip medications. I live like a child, or an elderly person, in that I have to be bathed. I cut 9 inches off of my hair because I can't wash or style it. I don't shower or dress alone. I cannot be left alone for long, because I forget almost everything short-term, like to take my pills in 5 minutes.

Showering with your SO isn't sexy when it is your routine to be bathed. Being brought breakfast or coffee in bed doesn't seem special those things are the only way for me to physically be able to get out of bed. I am a week from turning 27. I should be living vibrantly. I should be in my physical prime. The athlete I once was should've stayed fit into her mid-20s. I should NOT be living this way. Nor should my 29-year old husband. Most people cannot imagine what our life is like, and I wish it on no one. Yet through this, people think I look well. I have to fight and beg and plead to get put on disability. I got kicked off of my insurance because of my health conditions (shouldn't that be illegal?!).

Listening to Robin Roberts' speech it dawned on me that continuing to be even more forthcoming is the only thing to do. Sharing my struggles, my pain, my devastation, is currently what I have to contribute to the world. It's also the only way I can ask or hope that my loved ones will understand.

My Aunt Angie told me she'd put money down on me getting better, and I had to call her out on having little experience with betting since she seems to miss the concept. I told her maybe we'd all be better off if she picked up the money and instead spent time talking to the big guy upstairs.

For the Roberts video alone, I feel this is my most important blog post to date. But in the near future you will (finally) see the post detailing my specific health conditions and what they entail. That will also be hugely important, because most of you don't know my actual conditions. And even those of you that do will, sadly, find a new condition on that list. One that has flipped my world upside down again in the last few days. Thanks for reading, praying, caring, loving, etc... And in the near future, as things take the turn for the worse that seems to be coming, thanks in advance for your love and support. And again, please rewatch that video. I can't without crying.