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?