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

Assessment, validation and for goodness sake write it down

We are on the airplane as I write this travelling back to California for the holidays. This has become a big test in my mind. Is it better in Hawaii or just better? I don't feel that the improvement is drastic but when improvement comes on slow after six months you have a hard time comparing. I feel like my flare ups aren't quite as miserable. I think  my good days are much much better. I'm pretty sure my medium days are easier to push through and still do what needs to be done if it nothing else. If I were smarter or more organized or something I would have been keeping a day by day account of symptoms. I have notes on particularly bad days and out of the ordinary symptoms, but general prohibitive symptoms I take for granted. 

I think I will try to be smarter these next two and a half weeks and keep a journal of my symptoms and my activity level, pain level and degree of fatigue. 

I think this will be good for the four of us especially to be able to directly compare my ability to function. In the last two weeks we went to the mall to have dinner while watching our daughters friend perform at night, went to the beach with friends, went kayaking in a bay near us, we went to an evening school function that was outside, I got the warm clothes from storage and washed them and packed myself and both kids, I ran a ton of errands including a Drs appointment of course, I wrapped presents and we did two of our sons flag football game. All while I had a sinus and bilateral ear infections and am now on my second course of antibiotics…

I think that's it. 

Something tells me these coming weeks won't be quite so active. However, my confidence in my body has clearly improved as I have been scheduling tons of get together a with friends while we're there!

Probably way too much. In Hawaii I'd most likely be able to do it, but in the 50 degree, rainy, damp northern California the chances may be just a bit smaller.

I will have tons of adrenaline to help me through since I'm so excited to see my family and friends!!! 

Beach walks and ikaika (pushing through difficulty)

Our beach

I've said my emotional state is more fragile here. I'm not sure I've said it here but I've definitely said it to friends. This is unexpectedly severe. I feel responsible for moving my family here. And while my kids are thriving and my husband is really enjoying all of the outdoor activities offered here "There's just so much fun stuff to do here!" He said just yesterday, I have this feeling of responsibility. Warranted or not, true or not, it makes my bad flare ups stand out much more in my mind and my emotions. 

I try not to talk about this stuff too in depth with my husband. He's so amazing and has so much on his plate taking over the kids and house when these flare ups happen that I feel like it's only fair to try to keep my mood good and not dwell or wallow. 

I'm not a "why me?" Person, and I'm more likely to do something I shouldn't and pay for it later than not do something. I'm definitely not lazy though to some it may seem like it, those that know me know that I'm more likely to overdo it on a good health day so I can get things done! And I get really really tired of being in bed.

Anyway, this was all true in California and it's still true here. I push through the pain and more here because it's not as miserable when it's nice and warm, and I have gotten smarter about just not doing certain things and trying not to feel guilty about it, but I still have bad days. Sometimes those bad days turn into bad weeks and then my mind and my emotions just tank with thoughts of being a burden, worthless, moved my family here for nothing, if the sickness isn't better here then it won't be better ever, this was our "last resort" for getting me to live a life I could participate in, yadda yadda yadda. You can see how these thoughts can spiral, especially when you can't get out of bed and have nothing to do but think. 

I've decided that when these thoughts take over and I'm semi functional I will take a walk on the beach listening to music and guess what? It really helps! Of course the first time I did it I was feeling good and I walked 3.5 miles in the sand realizing later (and for days after) that it's harder to walk on sand and works different muscles in my back than the ones I typically work on! But after that disaster I got smarter and keep myself to one mile round trip for now. I'll build up slowly because my goal is to walk to my favorite little market, get coffee and walk back. That's about 5 miles round trip and while I can actually walk quite far on level ground, even to my little store, sand I have learned is a very different story.

So I have worked to snap myself out of the emotional days when I'm having a decent physical day. As I'm sure you've figured out this doesn't leave me an option for those times when I just can't get out of bed… going outside and sitting on our patio helps but sometimes even that is hard. So I'm still working on that if you have any suggestions.

Overall though despite emotional days I feel more like I'm living life here instead of just existing as a lump in my bed! And as a friend said that's huge. I need to be kinder to myself and remind myself of that. And I need to let it be ok that though my bad days may not be much less frequent my good days are unquestionably better and filled with awesome activities with my family. That is enough, should be anyway, I guess I just need to tell myself on my bad days that a good day WILL come around again even if it takes a while and the possibilities for that day are seemingly endless here whereas they were still very limited before. If I can get myself to believe that it should work yeah?

The post you've been waiting for..... Payback time

Yep. As suspected my amazing marathon of a day demanded payment in the form of two days in bed. The pain was outrageous, that fatigue crippling, the guilt was ever present, the "I'm sorry"s were flowing and my friends were sympathetic and understanding. I managed to make it to dinner out last night because it was some of our friends last night, and it was ok. So not quite two days. That recovery time alone  is definitely improved on some levels from my experience in the bay area, but  I tend to think it is more the adrenaline from being on vacation and seeing my friends that really shortened the timeframe. Today has been a bit of a struggle, but I did hang out at another friends pool for a few hours and catch up with her. My exhaustion level and physical shut down dictated our hasty departure but it was a good time to leave and the kids and a marathon day of  swimming, hiking and more swimming. Now we're home and Wrapping up the day and I still believe it was worth the payment.

Accomplishing the improbable

I would say my stamina has been tested in many ways since we moved to Hawaii, but yesterday was one heck of a pop quiz. 

We are in Maui having a mini reunion with friends from California. There are several families joining us and it has been an amazing trip so far. One thing Maui has that we love is the aquarium. Our son is especially into sharks and sea life right now, so we had to go. I actually made reservations a week or so ago to do the behind the scenes tour of the aquarium which in and of itself is incredible to me, since I never would make non refundable reservations in California because I just never knew if my body would allow it. But, I digress. It was also decided among the families that we would go to the kids’ favorite restaurant in all the world- Slappycakes for breakfast. So, the day began with a two hour breakfast of making our own pancakes and chatting with friends, followed by a 45 minute drive to the aquarium, an hour long walking tour and then meandering around the ocean center. When we left there it was time for the football game and some lunch with friends at one of the resorts on the beach. Lunch and drinks at the sports bar, four hours of 3 different pools, four different families, a visit from our daughters old teacher all followed up by dinner, a movie and a sleepover with R's bestie at our condo completed the day. 

At one point my friend even asked how I was feeling and remarked on the day I had. And I felt the need to point out to my husband several times that my body was still functioning at a decent level after a full day already. It allowed me to enjoy my friends as I wanted to, not how my body dictated and it allowed my amazing and selfless husband to sit and watch the football game with friends and drinks since I was perfectly capable of walking around and swimming with our kids by myself. It was a day out of a movie. At one point I was strolling through the resort looking for the "pirate pool" to find my child and some friends, holding a juice in my hand and revelling at the normalcy of my actions in this storybook situation. Can there be a better vacation, day, life than wandering in the sun through a beautiful beach resort drinking tropical juice in your bathing suit looking for a group of friends after leaving another group at a beach side bar/restaurant? After a day at the aquarium and a fabulous unique breakfast? In my world the answer is No and until a few months ago the answer would have been “if only my body would let me”. Thank you Maui for giving me that day and universe for giving me this life.

Friends, island hopping and feeding the soul

Today, our blessed life has brought us to Maui. Our daughter’s friends from California have descended upon the Island so we had to hop over for a mini reunion. Four of her close California friends, another family from the school AND her old teacher are here within 5 miles of each other. So, a 45 minute flight and an ocean view condo just had to be done. There has never been a question in our minds that we lead a blessed and unique life, and yet another experience has proven it as I sit here with my cup of coffee looking out at the ocean and blue skies of west Maui. 

Sitting by the pool for hours on end catching up and laughing with good friends we have known for a child’s lifetime and watching our son and daughter wrinkle from endless amounts of time in the pool playing with friends feeds the soul like nothing else. 

I cannot express how much I love Hawaii and how happy I am to be living here. My soul feels at home here in a way I cannot even describe, but it doesn’t come without sacrifice and sadness as well. I miss our California community, the school, the neighborhood, so having such a huge group of true friends surrounding us has definitely lifted spirits I didn’t realize were slipping. It has made our daughter realize she will not lose these friends that she held so dear, and it has made me realize that simple conversations and laughter with good friends is an integral part of who I am. Oddly it has also reaffirmed my decision to move here. Before we came to Maui, I was wondering if this experience would make me question the move by reminding me of what we left behind, but it has done the opposite. I have realized I will not lose that community of amazing people and that it wasn’t built in a matter of months but years, so I can build another one in time. It has also allowed me to enjoy these people in a way I couldn’t in cold foggy Northern California since the weather and outdoor lifestyle prolongs my days and stamina. But that is another post...

Experiments, sleep and oops....

It has been a while. I wish I could say this was because I have been feeling so great that I haven’t had time to write. Sadly, not the case. However, I am on the upswing now!

I had a(nother) moment of not so bright. I will never learn apparently not to push my boundaries. 

I visited my new Dr with a great sigh of relief learning she is awesome and I look forward to working with her. She, however, got the un-brightness ball rolling with an explanation of anemia of chronic illness. I am anemic- surprise surprise- and have been since I was pregnant with baby #2. Many many women become anemic during pregnancy, I am not unique in this, but my numbers just never recovered. I began taking iron supplements and everything was fine. Fast forward 6 years to a drs office in Hawaii where my Dr tells me that this anemia may be due to chronic illness and inflammation not iron deficiency…… Well, I’m sure you can guess what came next. Yup, I decided to test that. So, after 6 years of balanced blood levels and no anemia symptoms I stopped my iron supplements and plummeted into sleeping 18-19 hours a day and being cold in 85 degree weather. Oops. 

So, that is why I have been absent for awhile. Sadly my parents visited during that time, so I didn’t get to really spend the time with them that I wanted. It was fantastic to see them and have them experience our sweet little town though! 

Anyway, back on iron and feeling back to my normal. I solemnly swear to never test that theory again.