Friday, June 27, 2014

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.