Wednesday, August 19, 2015

I have no idea....

Sometimes I upload photos into various draft posts, give the post a title, and save them so I can write later. I often do batches like that, as my computer time is really limited. Apparently I titled this one "Uneven" I have no idea where I was going with this.

I am guessing it has to do with Toe's and my moods and health this summer. As he recovered and was ready to enjoy the summer, I became sick.

For those of you who don't know, I suffer from depression (and anxiety). I have had a major episode every three to five years since I was twelve. I have taken medication for it for more than ten years and consider myself a "lifer." I work to lower my dosage when things are ok and have to increase my dosage during my depressive episodes. Often the episodes have different symptoms, so it is difficult for me to tell how poorly I am doing until I completely fall apart. It often takes me months (sometimes years) to recover. Sometimes these episodes are triggered by an event - those are actually easier for me to handle because I seem to be gentler on myself when I know the cause of the depression. More often, they come after a long period of stress. I handle the stressful events as they come and fall apart afterwards. I feel guilty that I am not able to take care of myself well enough to avoid the roller coaster and that I am not able to recuperate faster. I know I take everything too seriously.
The last school year was hard. J and I rehearsed and performed in a play, which was amazing, but took time and energy. We did cub scouts. Toe got head lice. Twice. We went to the hospital for Christmas. Toe was sick on and off all spring. The thing I learned about being sick and having head lice is that they are both very isolating. We were stuck in the house without being able to invite friends over or get together with people for support. Our friends and family tried to support us the best they could as I kept saying, "I don't know how much more of this I can take." We had so many times this spring where I had to cancel plans due to illness, I lost count. Toe missed the last two months of school. Every day we thought he'd be able to go back in a couple more days, but illness followed illness. J and I were physically sick too. We all caught the flu and Toe and I ended up with ear infections that needed antibiotics (I went for weeks with temporary hearing loss). And then Toe ended up in the hospital and J had to work, so Toe and I went together.  I missed time at work and had to make it up (I caregive for my my brother, who needs attention as well). More more more....

We had a busy July 4 weekend, followed by my working an overnight respite. I woke up on my birthday, exhausted and empty. I stopped answering the phone and spent most of the day sleeping on the couch while Toe entertained himself with video games and movies. We spent most of the week like that. J has been incredibly busy this summer and we see him for a few minutes in the evenings, but are on our own the rest of the time. And I was DONE. Just done. Done with planned events, done with school and sickness and housework and pretty much everything. All of the energy I  had went into meeting Toe's needs - meals and meds. Some days I can muster more - a trip to my mom's, a trip to the grocery store, a small adventure; others, Toe has to play around me. He has been very understanding and supportive.

I wish I had Sylvia Plath's eloquence to describe how I feel during these times, how it clouds the mind, how there is always a physical component for me as well, how disrupting it is, especially trying to appear normal. But often the first thing to go is my voice. I become so overwhelmed by LIFE, I am unable to even let those around me know how poorly I am doing, let alone write about what I am experiencing. I navigate the days with a voice inside my head dismissing most of my messages to the outside world as "Too much energy to share." Having issues and/or worries? It takes too much energy to voice them. Need help? It takes too much energy to even think about what I need let alone ask for anything. I find all I can say is "I'm sick," and "I'm broken," over and over.

My depressions have been fewer since Toe was born, but they still come. I feel like a sub-human that I can not keep them in check. Now when I am depressed, I drag myself out of bed to take care of Toe and it's probably good for me. I can't completely crumple the way I used to. I have to keep up the appearance of being ok at least sometimes for him (at least I have been able to this thus far). But it's like any emotional process: if you are keeping it in check, it takes longer to process. I was barely recovered (maybe a year? two?)  from my last depression when this one began.

I know they come and go, and that I will recover. I like to think that maybe I am a phoenix on a fast track, born to crash and burn and then rise (even better) from the ashes (not once every thousand, but once every five years). I sure hope so. The idea that I am born to ride this horrible cycle again and again is too depressing and scary.

I have an amazing support network. Family and friends are checking in on me, asking what I  need, and helping me navigate this. I have the most amazing husband and son I could imagine. I will be alright. It seems that I usually fall apart when things are going well, not when they are going badly. I do feel guilty that with all of this support, I can't get it together quickly. I keep thinking that I  will be alright and then I am not. This looks to be a long recovery.

A dear friend came by yesterday and has taken Toe for two evenings in a row. I have forced myself to take a walk and feel so much better having done so. It is so hard when I feel this way to take care of myself the way I know helps me in the long run. It is easier to eat bad-for-me foods and sleep and read my book and that's it.

So why share? To help Toe face his cystic fibrosis, I tell him that we are all suffer from something - diabetes, depression, not enough food to eat, poor vision, depression, something. We all face challenges, sometimes many. Life is messy and painful and hard (and wonderful and amazing). I just finished Glennon Doyle Melton's book Carry On Warrior. She calls life "brutiful." I am inclined to agree. This is who I am and it colors every aspect of my life in the same way that CF colors every aspect of Toe's. We are not our illnesses, but they are there and sometimes you just have to acknowledge the ugly clown standing in the corner. I want to be this amazingly free, wild woman who embraces life. Instead, I am a flawed human being whose anxiety drags her down and closes her off far too much. I am sick. I have been much more sick this summer. When I told my friend this last night, he said, "Just be you." So here I am.

Here are some photos from my walk last night.




Poor Timing/ No! Bad Virus!

In the ER - pre-Motrin
Let me start by saying the visit to the Emergency Room was only because Toe's regular doctor was booked, it was a Friday, and we had plane tickets to fly to Texas on Monday. If it had been a regular week, I would have let it ride. We suspected he had a virus, but just wanted to check in. Because Dr Ram's schedule was full, they sent us to the Emergency Room and Toe went through a variety of tests to rule out viral meningitis, something CF related, or a bacterial infection.

We hadn't given him any ibuprofen because we wanted them to see how he was pre-pain meds. The ER doctor told us that wasn't necessary, he would have trusted us...and then gave him Motrin. We waited until it worked and the doctor had spoken to one of our CF team. He sent us home with a note so we could cancel our flight if we needed to, which turned out to be a good thing because Toe was sick for a full week.
Post-Motrin
Not a fun virus - high fever for a full week, vomiting, swollen lymph nodes. The kid felt so terrible he did not eat anything but a few crackers a day. He lost quite a bit of weight.
The next day...
On Thursday and Friday of the next week, J and I were unsure whether to cancel the plane flight again (set for the next Monday) or not. We decided to wait. Saturday, Toe perked up and did not need meds every minute of the day. Sunday we decided to go ahead and travel. Monday, Toe and I got on the plane for Texas, and although his lymph nodes were still swollen, he seemed fine the entire trip. Thank goodness! We were in Texas for a full week and have just returned. Keeping our fingers crossed that he stays healthy for a while.....

Summer Days

Want to know how the kid has been spending his summer? Here are some adventures..... (he's making banana bread above).


We opted for simple kid stuff this summer. It's the speed we can handle.

Row, row, row....

Mom and I took Toe on out in an inflatable boat on the river the other day. He still needs some work on paddling, but he had a great time.

Mom did too - don't you think?

I think Toe's favorite part was dragging his fingers through the water. I am constantly reminded that I need to slow down and allow Toe to have these simple pleasures (ones that I remember having and enjoying so much as a child).

Sunday, August 2, 2015

Recap

I received a hand-me-down (but still very new) iPad for Christmas, right before Toe was admitted to the hospital. I just got around to connecting it to my computer for the first time last week. Needless to say, it was a real overview of our last eight months.
First time admitted to the hospital for Toe's CF. J and I both stayed with him in the hospital for two weeks. We celebrated Christmas in the hospital. We played cards and cards and cards.
Once we got back into the swing of school, J's folks came to visit from Texas to help Toe celebrate his seventh birthday. He and his Grandma Gus made an EPIC cake.
Toe had a couple of successful check-ups at his CF clinic..
We had some beautiful spring days where we could get outside.
J shaved his head to support of a friend going through chemotherapy. He then asked Toe to draw on his scalp in permanent marker. Yep. Surprisingly, permanent marker is not permanent on Toe's scalp.
Uncle Awesome was there, providing support and laughs, especially as spring wore on and Toe was home sick for an extended period of time (Toe pretty much missed the last two months of school and then had another hospital stay).
Kind of a bumpy spring... but many good moments as well.

Brush with the Past

A few weeks ago, we had to drive out of town and on our way home, I drove to my my mom's old school to show Toe. Mom taught there more than twenty-five years and for a long time, the place felt like home to me - I'd just stop by to visit her as I could... I spent hundreds of hours helping prep her classroom, reading with kids, and generally working with first/second graders and/ or the associated art, writing, and math projects. I even slept under the table in the back of her classroom some afternoons.

As we drove up to the school, I realized I was only a year and a half older than Toe when she started working there. I remember playing on this playground the first day I came to her school.