Welcome

Welcome! My health problems add craziness to my life. Here I post ideas I've tried, also questions I'm still asking. I have an electrolyte disorder. So I have crazy neuro stuff like complicated migraines, alkalosis, loosing my speech and paralysis. (including legs and hands) Little by little, foods had to go, they affected my brain and immune system. So I avoid like the plague: soy, dairy, gluten, nightshades, and try to avoid refined sugar. My body requires pink salt and electrolytes. I now use a speedy red wheelchair that I love. I've craved a simpler life, but how do you do that with crazy health stuff? I've already had a fire and flood, so I really don't value possessions. I value people and experiences. I am not compensated for any posts, just my opinions.

Monday, May 9, 2016

Wheelchair debate: yes, or no? Just today or every day?

Quickie QRi rigid frame, ultra light chair
(Coming soon: posts about adaptive things I've been learning )

How to decide the answer to such life altering questions?! Here are some of my inner battles I've fought for years, and how I came to be at peace with my decision this month.

I think it's essential to really think about what you need. Not to guilt yourself, but to really think about (prioritize) what you need for daily living...More than just wilderness survival, because who wants to live their whole life just barely surviving? I want to live a life full of adventures! Even more, I want to live my life full of non-medical adventures!!! And yes, there are many countries where people will never have all the things we think are necessary. There will also always be people with problems worse than ours. (Post soon on humanitarian ideas) I'm convinced these kinds of thoughts won't help us with solving our own problems. It isn't about deprivation, but rather about really living. Our problems feel real to us, so they should be addressed as best as we are capable. Our best should always be enough. (Easier said then done!) I've also been given advice to delete the word "should" from my vocabulary. I think it's best to just think of our own situation and ponder what we feel we truly need. Then make a list of things you really like. Things (and people) that makes you happy, or that makes life easier. This way you'll be prepared when life knocks you flat on your face. These lists also help us better know which battles are worth fighting that day, which ones you might want to fight another day, or things you might just want to let go of, for good. Start out by making sure that your essential needs list is all taken care of. (Example: quality sleep, clean water, nourishing food, safe shelter...) If you can't meet those needs yourself, ask for help. I'm still needing a lot of help with food prep. Then when you are out of emergency mode, think about some of the "wants or nice things", to help you really recover and heal. I was really touched when I heard about a cello player I know getting chemo treatments. Someone came to play cello for him during the treatment. He said there's healing for your body and there's healing for your soul. Having someone play cello for him then, healed his soul.

When something is episodic it's really hard to know when to fight and when to stop before you do more damage. Most the time, I think I guessed wrong, because I usually over-do things, trying to fit in as much as I can on a "good day", not knowing when the next "good day" will come along. I've fought needing a wheelchair for years. What about staying independent? What about all the inaccessible houses I'll never be able to get into, and no sidewalks? Adaptations to houses are so incredibly expensive! How will I fit my kids and a wheelchair in a car? Cello, current wheelchair and 3 kids do not currently all fit in my car at the same time. Since I had good days, as well as bad days, I tried to avoid the wheelchair, for when I got back to good days. But then when my muscles refused to work, doctors refused to let me use a wheelchair, saying my legs would atrophy, so I just had to learn to fight it. I asked them how I was going to get to a bathroom or make food for myself when my legs paralyzed for 12-72 hours (which is what my legs were doing then). I told doctors that my husband carrying me and catheters were not acceptable answers. They had no other ideas or answers but still would not let me have a wheelchair. I decided to do it my way. Meaning I bought an inexpensive wheelchair (Nov 2012) for the extra bad days, since my doctors and insurance refused to help me with a need that I considered essential. I also knew I needed to move too, to find a house with wider doorways and a one level house. That was extremely hard for me, but ended up being really good for me too. The days I used my wheelchair, I found I was able to do so much more with my life, than wear myself out fighting all day. I didn't hurt and I slept great through the whole night. Wheelchair days were great, because I felt nothing, literally. I could finally relax and recover. But I only used the wheelchair when I was severely paralyzed from the waist down, to show my doctors (and myself?) I was "fighting back". If I tried to stand up on those days, I'd crumple to the ground, so the choice for wheelchair was easy those days. As soon as I could feel my legs, I was up walking again. The days that my legs were "only really weak", I drug myself along, sometimes getting stuck and needing someone to go get my wheelchair to get me unstuck, basically feeling tired of being tired.

My health stuff has been a lot worse than usual the last two months, giving me plenty of time to rethink the things I need. Being able to walk is a really big deal to most people. I've reached the point where I'm pretty done with it, physically and emotionally. A quick run in the store with leg braces and canes exhausts me and make my joints hurt for the rest of the day, and sometimes the next day as well. Walking incorrectly for years, dragging my legs and leg braces at the hips to move, I now have permanent damage to my body. I now regularly fight multiple herniated disks and have other vertebrae degenerating. Multiple treatments caused weight gain, and...I found I just hated all this, often thinking how a wheelchair would be so much easier, wondering why the idea was so horrible but still didn't feel ready yet. I started feeling it was now doing more harm than good. I started wondering if I stayed in a wheelchair, could I maybe save the rest of my spine and my arms and hands? I don't even walk in my dreams any more. Instead in my dreams, I am either stranded, stuck on the ground trying to figure out how to get home without being able to walk or drive; or I'm speedy fast in a shiny red wheelchair, not in pain, with everything adapted to the right height for me, daily living adaptations already figured out.  (If you can't tell, I'm an all or nothing kind of person, with irrational expectations for myself, even in my sleep.)

Me visiting an art museum on bad leg day 1 Mar 2013
I started getting less and less warning time for severe paralysis. The last few months, less than 5 minutes, or sometimes just a few seconds warning. The episodes also kept lengthening in how many days it lasted. After years of not getting enough electrolytes into the muscles, they can become irreparably damaged. My first round of leg braces about 9 years ago, the guy was concerned I already had permanent damage in my thighs and was compensating how I walked. I often feel a pulsating, rhythmic contraction, (either muscle contractions or nerve impulses) when episodes start or stop. The feeling stayed pretty constant for several weeks in my abdomen and thighs, which first convinced me it was permanent not episodic there now. I had a really bad flu in March that made me extremely ill for 3 weeks. Since then my legs just quit, they made the decision for me. Honestly, I feel so relieved I can now medically be justified to just stay seated!!! Yes, honestly it's hard to readjust, but not nearly as hard as what I was doing. I just feel relieved and glad the decision is over, so I can focus on other things, like keeping my hands working, and working on my adaptive way to play violin.

My new(er) doctor saw me last week and discussed wheelchair living with me. My doctor had safety concerns I hadn't even thought about like I'm high risk for falls whenever I get out of my chair. He thought I needed a motorized wheelchair for bad hand days, but I didn't even want to think about the cost involved with that and the challenges of transporting it out into public. Fighting the need for a wheelchair for so long made me become more dependent on others to bail me out. Using a wheelchair helps me feel less stuck, safer, more independent and I feel that I have more freedoms.  I currently have a simple transport chair like you see in hospitals and airports. This Quickie QRi chair pictured in this post is being custom built for me right now, hooray!  So my re-evaluated needs are: I need to be in less pain, be safer (preventing falls), and have increased mobility. I'm extremely grateful and fortunate (feeling blessed) that my family supports me and helps me with my decision to stay in a wheelchair. I'm actually enjoying figuring out how to live a better life by being a wheelchair user.

A puzzle I recently did with my husband
I believe that everyone needs to feel loved. Everyone needs joy and contentment. We need good friends. We need to be able to bust out laughing. We need family support and need to give support. Not saying these are easy things when life feels overwhelming. But it's good goals to work towards. Then when we are out of crisis mode, we can add the nice things we love. My list has things like: picnics in a beautiful place, chocolate, puzzles, listening to beautiful classical music, sitting by trees and watching birds play, playing my violin, Skyping my friends, sitting at the table for dinner as a family, sewing, going for a walk (or roll) with my family, reading well written historical fiction adventures, ...and more chocolate...all things that can be done sitting just fine...and I can see so many "good days" in my future now!

1 comment:

  1. Julie: You are truly amazing and an inspiration to all of us. Keep up the good work and that beautiful smile. I look forward to reading more of your posts.

    ReplyDelete