Scientific assessment

Yes, I did keep a journal of my physical symptoms. I can look back and pinpoint days I felt certain ways but I will summarize.

First we spent a week in the cold mountains with our families for Christmas and it was spectacular. So much fun, laughter and love flowing. I had a few days of weakness and fatigue and I opted out of several activities. It was easy during this week, however, to take breaks in bed as our bedroom was directly off the living area and there weren't many expectations from the week other than relaxing with family. The one day we ventured into town the cold and short walk completely did me in and by the end of lunch I was shaking and tingling- a sure sign my body has had enough and generally my "lay down or I'll make you" warning from it. 

All in all that first week was what was expected and while really cold, the dampness and temperature changes of our old town we're not present. It may have only gotten to 51 during the day but it would still be 46 at night for example. As we've determined temperature change is worse than consistent cold by far. I was actually impressed by my body's strength in this climate, not great but not as bad as expected. But the heat was on and our shower had a heated lamp- these things make a big difference in sudden temperature adjustments. 

I will not count, but will make note of, the dizziness and nausea portion of our trip as that is a direct correlation to my meds and happens in every climate and state… so let's say the drive down the windy road was unpleasant. 

The second part of our trip was also filled with laughter and love and a whole lot more activity. We stayed in our old town with a good friend. Attempting to see so many people in one visit may have been overly ambitious. 

My body held up for a late NYE but needed a day on the couch the entire next day. I was able to drive one day to visit family, who had a preheated throw on the couch, but by the end the pain, dizziness and nausea were severe. 

I pushed through a day I shouldn't have to make a promised get together only to be flattened even worse the next day unable to see a dear dear friend. The rest of the trip- three more days- was incredibly low key couch bound and unable to see another dear friend for coffee as hoped. Both of those I regret and am heartbroken about. 

So for those keeping track I got about 9 really good days out of the 17. 

As for a symptom score: one thing I hadn't even realized was that the numbness and nerve pain in my left leg has pretty much gone away in Hawaii. It came right back in California again! Back to 4 pairs of socks on my left foot. I was also back to dreading showers because of the cold and needing Gatorade more for my blood pressure. I was unable to stay outside (as I can for flag football games here), I was unable to help much at the houses we were staying at, etc etc. 

It's not an accurate representation for my scientific mind because the kids weren't in school and didn't need a schedule, my friends came to me for the most part- couch, PJs and all- and I had no real obligations and responsibilities except to things I really wanted to do. That adrenaline rush always really helps. But for an overall trip it definitely affirmed that I am better here sometimes a lot and noticeable, sometimes only in some ways or slightly. But even just 10% is better right? Hopefully that realization will help assuage the overwhelming mom guilt when it pops up...

So I can safely say we were all happy to be back in the warmth, but none more than my body. 

The unexpected crash

For two and a half weeks we have been surrounded by love and friendship to the point my heart could burst. Leaving California was only difficult for me because of  the incredible friends we were leaving behind. Never a judgement for hanging out in pajamas all day, lying on the couch zoning out on movies, unable to go out, in bed during a get together, or unable to even see them on this trip when my body completely gave out. Never a judgement for anything ever. In fact the opposite is true. I truly don't know what I've done to deserve these amazing friends, but I thank the universe for them everyday. I'm so blessed and humbled by their generosity and love constantly. These past two weeks, the first week with our incredible family full of laughter, the second with the family we made out of friends, did two things for me. It reaffirmed how special these people are and made me miss them so much my heart aches. Independent of the company this trip also made me realize that I do feel better here, I do hurt more in the cold and damp. And that the time was right to move since I can honestly say the only thing I miss are those people. It feels so crowded and fast paced to me now. It's expensive and unnecessarily complicated to live there. Even M and the kids were anxious to get home even if we weren't anxious to leave our people. 

I indeed did keep a mini journal of how I felt while there. I paid very close attention to my physical symptoms with one minor error. I didn't think at all about my emotional health. 

Coming back home to Hawaii I was struggling physically- 17 days of travel with two small kids and constant company will do that. But the second day we were home the emotional letdown came out of the blue. I was exhausted to the point all of my defenses were down. I was home in bed and the adrenaline crash, emotional purge and inevitable comparisons of here to California began. It was a spectacular meltdown that unfortunately my husband witnessed part of. I cried so hard my body ached the next day. It was the kind of cry that comes from deep in your soul. 

I don't cry. I'm not a happy cryer at all, I don't necessarily cry when I'm sad and when I'm in pain or really stressed I actually laugh uncontrollably. This purge was a buildup of at least six months without tears and years without that level of just letting it out. And while being that scared and sad isn't pleasant it ultimately felt really good. You always hear that "getting it out" helps you deal with emotions and that they "build up" etc etc and I can attest to the fact that that is true. I feel cleaned out. I feel like being that emotionally raw was helpful in maintaining my strength. I don't try to hold my emotions in consciously, maybe my capacity for absorbing emotion is big but when that capacity needs to reset the purging of all of that emotion and fatigue is amazing. I feel empty, in a good way, like I'm ready to take it on again. Not to say emotion and mental health won't continue to play a huge part in my existence with chronic illness.

The talk in society lately is so much about mental health. I firmly believe that feeling your emotions and letting them out in a healthy manner is an essential part of it. Being happy all the time is not mental health. Being comfortable with your emotions no matter how they choose to present themselves, and being able to deal with them, be open about them, use them to grow and move on is a key element, for me at least. Phew! 

Expectations of something nonexistent

The reality of travel is that it's exhausting. I love travelling and being out of my comfort zone, always have, but it does require a stamina and energy different than others. I was reminded of that by a close friend this morning at a time I needed to hear it. 

I'm trying to remind myself that no one is superwoman and even "healthy" people need breaks and run out of energy. I tend to have higher expectations of myself, that's no surprise, but what I'm trying to get through to my head and heart today is what my friend's comments made me realize- that my expectations of myself may exceed what I could do even if I was perfectly healthy as I was 10 yrs ago…. Yeah mind blown. This may be why I can't seem to get past my unrealistically high expectations of what I should be doing. This seems simple but honestly is huge for me to realize. Whether that will help me in this eternal road to acceptance remains to be seen, but at least it's a new path to stop me from going in circles. I hope so and hopefully it can prevent existential breakdowns like the one I had yesterday. That was complicated and rather severe so it requires it's very own post.

Gambling with reality

Sitting in the donut shop we have always loved in our California town we buy our lotto tickets and perform our ritual of "what would you do….". There is no lottery in Hawaii so it's been a while since this beloved ritual of donuts and gambling.

I instantly say what I have always said and wanted. Being a traveler at heart and in my soul I say "I would go to the airport and get in the first plane I could to another country to explore." For some reason reality seeps into this particular morning's ritual and M says:

"It would have to be somewhere warm though." 

I stared at him in shock and silence as he and the kids threw around ideas of building mommy a special suit that keeps her warm and energized and helps her walk…. 

I couldn't believe, and still can't, how this one comment affected me. It was like being punched by reality in the solar plexus. No matter how much money we have or where we live or what is discovered I am stuck in this broken body. There is no "eventually", "down the road" or "someday" in this health journey. 

Sometimes comments slide on by and sometimes they become part of you. And damn don't you wish you could pick and choose which ones do which thing