Hidden Idiosyncrasies of chronic illness

I take for granted sometimes that people understand how difficult small tasks are for someone who is chronically ill/ in pain. I actually forget that getting off the couch to go refill your water bottle is not a monumentous event for "healthy" people. It doesn't cause them pain. They don't have to fight with their body to do it. It's easy, you tell your body to go and it goes. I'm sad to say that after 9 years I no longer remember that feeling. Every task put in front of me and everything I see, whether as simple as walking across a room, bending to pick something up or as painful as going to the beach or park or pool, it is immediately measured in my head as to the effort it will take, if I have enough strength to even do it and if it is worth that effort/ consequence. "Regular" people talk about things taking "effort" all the time so I almost don't like using that word because it doesn't accurately portray how difficult it is to do even the smallest of tasks.

One thing that isn't obviously difficult for anyone, but is for people in my situation is showering. I've explained why to a few

people and I constantly get "oh yeah, that makes sense". Showering back in the cold damp of northern California required many many spoons. I generally didn't have spoons to say shower AND go somewhere in the same day. I got used to taking showers at

night when I could. And always with the bathroom heater on high and only washing my hair periodically.
Showers are tough for many reasons:
1. Your body temperature fluctuates constantly in a shower since the water temperature is different than the air temp and the water hits different parts of your body constantly.
2. The effort of raising arms above the head is extremely difficult for many of us, so washing and conditioning hair is difficult.
3. Attempting to shave your legs is a nightmare. It's painful to bend over it's difficult to stand on one foot (turns purple and pins and needles).
4. Then there's getting out of the shower- sudden temperature change, more movement to dry and for some it's irritating to have textures rubbed against your skin (this happens to me sometimes) and then any sort of hair drying or product requires even more effort.
5. And you're still naked at that point! So you have to add getting dressed which is difficult

every time you do it and takes away spoons.

So, when I say showering is too much for me most days that's what I mean.

(There's a reason there's so many memes about this)

The GOOD news is that the first major difference I've noticed moving here is that showering doesn't require nearly as many spoons! The air and water temperature are almost exactly the same, there's no sudden change in temperature getting out and honestly you barely have to towel off because the heat will help that along! And for me personally I don't bother blow drying my hair here because it is curly so this humidity will just curl it right after I straighten it. So it can air dry with some hair gel. Getting dressed every day is shorts and tank top! No dreaded socks with the bending and twisting. Slip on flip flops and done.

This isn't something I anticipated being so much easier so it's a nice surprise! Score one for Hawaii!!!

Sadness, sand and goats

"So far I don't see any benefit to moving here, you're still sick" - my 9 yr old daughter

Insert knife in heart and twist.

So, we are settling into our new town still looking for a rental to live in! So far we've seen 4 and none of us really loved any of them. So on we go.

We did get to go to a farm yesterday though and pick vegetables and play with chickens, goats and bunnies! I had a great health day yesterday. Went to the farm, looked at two houses. It was my first truly "good" day since we arrived on the island. All I can say is thank goodness I have 9 years worth of evidence that I in fact DO feel better here because otherwise I would be convinced we moved here for nothing. Like my poor daughter is.

For this upset little girl keep in mind there was a huge parade right on our street on the 4th of July, and that night we WALKED to the BEACH to watch fireworks with like the whole town, in 75 degree weather at night. Yesterday we went to a farm and then they went to the pool. They've gone to the beach 3 times. Some would see those things as benefits. But for all I can justify in my head that she's "just sad because of the move, she's feeling anxious because we have no permanent place to live, she hasn't made friends", etc it still worries me beyond belief that maybe she's right.

Why would anyone move to paradise?

So how did we end up here?
Living in unpredictable cold weather was making so many things so much worse. W
have other reasons as well , but the thing that started it all was being told "it's probably not ALS, I'm pretty sure it's MS".
'Probably'? 'Pretty sure'? These phrases made us take a step back and take a serious look at our life.
We decided if it was ALS we were travelling the world as long as I could. If it was MS we were moving to have a simpler life where my husband could be home more and we could all enjoy each other.
The testing for MS went on seemingly forever, and when it ultimately came back negative we started to realize that this was just our life now diagnosis or not. The symptoms didn't magically disappear when  why they said it wasn't MS. And we decided it was time to make a change anyway to live a simpler life where we could enjoy each other and our kids more. Possibly help my health and enjoy whatever time we have left on this planet.

I've always wanted to live in Hawaii.  Since I was 13 years old and my parents took us to Maui for the first time it has been a goal. I remember saying even at 13 "I'm going to live in Hawaii someday and be a scuba instructor ".
Being scared you don't have much time left really re-prioritizes your life. Finding out it wasn't a death sentence but a chronic problem that could get worse didn't change things back.
But living your dream does take on a whole new weight. What if it sucks? I've been dreaming of this for 30 years! What if I ruin my kids lives moving for MY health?

We landed on moving to Oahu through a circuitous route involving Costa Rica, The Carolinas, Texas, the big island of Hawaii and then finally Honolulu. It just has more to offer young kids growing up and most importantly the best access to some of the best healthcare in the country. Yeah, Hawaii, who knew right? From there it was a five day trip with 6 hr days in the car visiting seemingly every town on the island to find where we belonged. When we hit the town of Kailua we just knew. We still gave other places a chance but nothing really felt like home like this small beach town.

So here's hoping! Taking off from your very comfortable life with no job, no place to live and all of your stuff on a boat in the Pacific really makes life itself stand out. We've got nothing but the clothes in our suitcases and a desire to live a fulfilling and healthier life.

Ma'i in the land of aloha

Back in time a bit to the actual move...

So, it turns out packing and shipping a four bedroom house and two cars to an island in the Pacific is a lot of hard physical work. Who knew? The mental and emotional work is pretty cumbersome as well I must say.

But, we did it. We arrived in our new town four days ago! I really don't want to diminish the amount of work we have put in (though I think with any "distance move" it would be an insane amount of work) but it's really not that interesting so we'll move on 😉

The week before the move we were happily inundated with people realizing how soon the move was coming and stopping by for a hug and a goodbye, to help pack, to bring food and to generally be the amazing friends we know and love.

The night before the official 'house packed into the truck day' we had one last driveway take out get together with our cherished neighbors and friends. This, however, was not enough for these lovely people and it was decided a mimosa bar and breakfast was in order the next morning, and lo and behold it was set up on our lawn at 8am waiting for the movers to show up. That table and chairs stayed there until we drove away at 6 (maybe 7?)pm. So as the truck was filling and we were popping in and out instructing and helping the movers, the day was filled with more people stopping for a mimosa, a chat or a parting hug and tears. It was the best send off anyone could ever ask for and those of you who know us and our life in San Mateo know how truly incredible our friends and neighbors are and how incredibly important they are to us.

My health,sadly as mentioned before, did not hold up through the weeks of packing, the loads of boxes and the all day front yard sun party and as we drove away from our beloved neighborhood it finally seemed to have permission to give out. And give out it did. In spectacular fashion. We stayed with my brother that night and I arrived sunburned, sweaty, shaking, struggling to breathe and on the verge of physical collapse. So sadly our last night in California was not spent sitting on my brothers patio laughing and talking one last time as I had (somewhat foolishly) envisioned, but with me passed out in bed with my 12 yr old niece rubbing aloe on my sunburned arms and shoulders because I was unable to move enough to do it. It sucked, but that same wonderful niece made me a gluten free, dairy free pineapple upside down cake also so it wasn't all bad.

It is what it is and is a normal part of our existence so not really a surprise to anyone. Especially the fact that I was in that position because I am not so bright and physically way way overdid it…. 😜

Well we did it!

We moved our family to Hawaii. For my health. There are lots of feelings, sadness and regret around why we moved here, but I am mostly dealing with them. It's hard to be the reason your kids are unhappy. It's hard to be the reason we left so many amazing people in California. But it's heart warming to know that we have so much support in the move as well from incredible family and friends who just want what's best for us.

The difficult part today is that I've been in bed since we got here.
Not the way to start off a move that's supposed to be great for my health, right?

The move is the cause. Packing up a 4 bedroom house and 2 cars to ship across an ocean is a pretty big amount of work. And I can't even describe how much I overdid it. My body was breaking down before we even left the bay.  So, here we are.

It's surreal being here right now for me because it feels so natural yet dreamlike. I get excited when I think about the fact that I get to stay this time! Every year when we visit I threaten to just stay. I'm not sure if everyone realized I was serious... 

This move is the culmination of a dream I've had for 30 years along with the desire to live a more relaxed life, work and commute fewer hours, spend more time with our kids and just live our life in a family oriented community without the outside pressure we were feeling in the bay. And yes hopefully will lead to better health. So far I have to say I think we picked the perfect town and place. The people have been warm and welcoming and the feeling of aloha is alive and well! Now we'll have to see how this whole thing works out.... 😉

Meanwhile the view out my window....

Sadly not the view from my bed though. Lol. 

Just going to stay right here....

Today is a bad day.

          

 (Without and with flash)

For good reason but still a bad day. I have been in bed all day, still in my pajamas alternating between listening to books and watching bad tv and staring at the wall when my brain really fries itself out of commission.
I could get up today, but some days I don't want to fight through the pain and exhaustion to do mundane tasks like make dinner. Some days I don't want to "be strong" or "suck it up". That's today. So today I am working to accept that I'm just going to stay here and not feel guilty for being sick and for not doing what I, and only I, think I should. And I have to say it's going quite well today. It is what it is. I don't need to prove to anyone that I COULD get up and make dinner and put kids to bed and straighten up my mess of a house from camping. This is a nice peaceful feeling. I don't know why today it comes so easily when other days it just won't come at all, but I'll take it.


Wanna see how easy it is to lie though?

Attitude and foundations

A conversation this
morning led me to thinking about attitude, happiness and perspective. I realized that, in my mind anyway, your overall attitude, perspective and outlook on all things in your life (not individual things, problems or people) can be the foundation of your existence.
If you have a horrible attitude and are a negative person what kind of spouse, if any, will you find? What kind of kids will you raise? How can you further your career or have good working relationships? How can you rely on family support if you are miserable to be around? How can you expect to have a positive life with a negative attitude? I'm not saying these things aren't possible. But perspective changes them I think.
Life is made up of so many parts. If one part goes wrong do you throw all the others away?

Or do you take that part and let it strengthen you and recognize the good parts?

I by no means think these are the only two options. The actual day to day life of humans lies somewhere in between but it does create differences in people in the same situations. Do those differences matter in the long run? Food for thought. 

Summary of the Spoon Theory

"Most people don’t think twice about the energy it takes to shower, get dressed, and drive to work. Most people can go to the grocery store in the morning and make dinner in the evening. Most people can make plans and keep them.

When you have chronic disease, you’re not like most people. Multiple sclerosis (MS), autoimmune forms of arthritis, and many other conditions can cause extreme fatigue. On a bad day, you may not have the strength to even brush your teeth.

In a blog titled “The Spoon Theory,” Christine Miserandino described how she showed her friend what it’s like to have lupus. (The autoimmune diseaseoften causes fatigue, fever, and joint pain, among other symptoms.) While sitting at a diner, Miserandino handed her friend 12 spoons. These represented units of energy. She then asked her friend to describe the typical activities of a day

Miserandino took away a spoon for every single task: showering, getting dressed with painful joints, standing on a train. Skipping lunch would cost a spoon, too. When the spoons were gone, it meant there was barely energy to do anything else.

This idea of quantifying energy as spoons, and the idea that people with chronic disease only get a handful of spoons each day, hit home with readers far and wide. “Spoon theory” is now part of the lingo of autoimmune disease. Legions of people call themselves “spoonies,” connect on social media as #spoonies, use spoon theory to explain their chronic disease limitations, and plan their days around the number of spoons they have when they wake up.
People without chronic illness get unlimited spoons, or at least more than enough than what they need

Selflessly kind in the middle of the woods

"The energy you put out to the universe is the energy you get back."

"Whatever you look for and expect to see in the world you will find, look for kindness and you will find it."

These are two of my favorite quotes. Always have been. And I firmly believe them. I truly believe that a big reason I have lived such an amazing and blessed life is because I follow them. And I am constantly reminded of them and my belief is consistently validated in my daily existence.

This time it came in the form of generosity and true selflessness. I love the phrase 'thoughtlessly kind' and this truly was that as when I pointed out to this person how amazing what she did for me was she responded with a truly baffled "what did I do?"

This weekend was the amazing girl scout camp weekend. Those of you who know me personally know that Girl Scouts is extremely important to me and my daughter and that I value and strongly believe in that wonderful organization. This weekend was a very special mother/daughter weekend and that, as well as being a troop leader, meant I was not missing it under any circumstances.
To put this super active weekend in small perspective: I was told several times last year "I'm healthy and this weekend is overwhelming and utterly exhausting for me". And I was asked more than once while there "how are you doing this? I can't believe you're here".
So that gives you an idea of the difficulty (and fun!) of this 42 hour jam packed event.
In true GS fashion we moms are each required to volunteer for a 2-3 hr shift at camp. My job this year was in the craft shell from 10-12 Sat.
Now, background- last year I was unable to make it to the campfire /talent show at the end of the big day because my body was just too exhausted from so much hiking, walking and just DOING. My thoughtful 7 yr old at the time decided to go back to the cabin with me because "she didn't want to go to the campfire" which I later learned actually meant "I felt bad for you and wanted to spend time with my momma". Yeah❤️
So this year I was worried about this. My little girl said she really really wanted me to go but it doesn't even start until like 830 or 9 pm. After a day of major activity all over the woods.
Now that you have all of the pertinent history...
As my troop mom's and I were standing watching our girls do archery (in the 90 degree heat at 930am!) one asked me what my "official" diagnosis was. This led to a discussion of symptoms and spoons. As these two mom's listened to me describe the spoon theory and mention how I wish I had let them know ahead of time that I couldn't volunteer (I HAD let them know certain limitations I had and what I needed from them in order for me to be able to go, but shirking my volunteer responsibility wasn't something I was ok with at that point) because I was already running low and wanted to spend my spoons hanging out with my kid, not volunteering without her for two hours. I really wasn't complaining or whining, it was just a fact. You can guess what happens next.
Without hesitation:
Mom #1 "do you want us to do your volunteer shift?"
Mom#2 "yeah we can just split it"
Me(of course) "no no I'll be fine"
Mom#1 "don't be silly you should save your energy"
Me "this is not why I told you guys this!"
Mom #2 "oh my gosh we know. The fact that you volunteer to be a girl scout troop leader tells us that and says a lot"
Mom #1 "the girls want to do crafts at some point anyway. We'll take them now so we can volunteer and do crafts with our girls. Not a big deal"
Me "but.... I don't know. Are you sure?"
Mom#1 "yes. We want you to make it to the rest of the day. Its silly to use energy for this. Go lay down until lunch and don't think about it again".

I made it to the campfire that night because of those ladies. I told them many times how much it meant to me and how huge a deal it was for me, but I don't think they can ever know what that meant to me and my daughter. To them it seemed simple and easy. To me it was huge.

Small acts of kindness can change big things.
Thank you again ladies.

                      

Stanford you have been forgiven

I have to say my first experience with Stanford specialists left a lot to be desired. M and I walked out of the building shell shocked, flabbergasted and disillusioned.
Today they have redeemed themselves.
I spent 5 solid hours of my day in the Autonomic Clinic of the Neuroscience specialty of the neurological department at Stanford hospital. Not to name drop or anything. Sounds fancy doesn't it?
This is one of the top clinics for Autonomic nervous system disorders in the world. These specialists are few and spread out internationally.
I'm extremely lucky to live 20 mins from this clinic and to have Drs who referred me to see them.
The testing was mildly brutal I must say, but the technician and I became friends over my two and a half straight hours in his lab so it ended up being enjoyable getting to know and chatting with someone new. Which is one of my favorite things of course.
He was thorough and apologetic when his tests were dizzying, nauseating and difficult but we got through them all.
He mentioned probably five times over the course of hours what a positive person I am in the face of a gazillion issues and what a great attitude I have and he even said thank you for that! It was lovely. It made me feel bad for him a bit dealing with unhappy people all the time? so I asked him:
"Do you get a lot of people who come in here just miserable and grumpy and complaining?"
"Oh yes we do, and I understand that as well. They are dealing with horrible stuff. But you remind me it's all about perspective in life. You change your perspective just a little bit and it changes everything. So thank you for reminding me of that." Deep thoughts in the Stanford Autonomic testing lab. And I must say that's one of the biggest compliments I have ever received! I really appreciated his candor.

When I left my new friend, after convincing him to go to Hawaii on vacation and take his parents to help with their new 6 month old girl, I was off to the Dr to interpret the findings. (And I could finally get coffee after fasting for sooooo long!)
This time this Dr, same one as before,  was more personable, provided relevant information and explained things thoroughly. I left there feeling good knowing that I had been thoroughly tested, poked, prodded and examined and confident in the information I now had. And reminding myself I should know better than to judge by just one visit.

The news isn't great. I didn't leave happy with the actual information, but from the perspective of a chronically ill person answers are awesome, good or bad really. It's a twisted world we live in.

So for those of you who are paying attention to/interested in the technical  medicals side of things he is very confident that the lupus diagnosis is correct because the problems he found are only caused by a handful of things- one of which is Lupus. (The others were instantly ruled out actually). So what it is boiling down to is systemic Lupus with cardiovascular Autonomic neuropathy and orthostatic hypotension.
Quite the mouthful huh?
Basically it's:
Lupus- attacks the connective tissue and
It effects all body systems -systemic
With
Cardiovascular- the heart and blood vessels
Autonomic- the part of the nervous system that controls automatic functions; in this case mainly heart rate, heart filling and emptying and blood pressure
Neuropathy- nerves gone wrong (diseased, malfunctioning, dying, etc in my case malfunctioning because they are being attacked by my immune system)

So because my immune system turned bad and is attacking me (the Lupus) the nerve that controls my heart isn't working, so it doesn't tell my heart to fill and empty when it's supposed to, to pump the blood out when and how it's supposed to or not to beat so fast when it doesn't need to. And the nerve to my blood vessels isn't telling them to constrict and relax regularly and when they need to (so my BP is inconsistent- orthostatic hypotension means my BP drops when I stand up). So my blood isn't going anywhere it needs to be when it needs to be there if you think about it.... Lol.
This explains why I stutter and can't think straight so often. There's no blood in my brain! I wonder if I'll be smart again if I hang upside down.... Hmm food for thought.

So that was my day. Wasn't a bad day at all. The sun was shining, they gave me a coffee and lunch break so I walked to Starbucks. I met some nice people, learned some cool stuff about the nervous system and got some answers. All in all a pretty good day.