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.

Friday, January 30, 2015

When life feels loud, do you have a quiet corner to decompress in? Indoors and outdoors?

Sometimes things get really loud literally, and sometimes they just feel really loud, because I get sensory overload. When I don't feel well, I've always craved a quiet little corner to recover in. Where no electronics can get to me, for a little while. Then after my little break, I feel more ready to get back to my responsibilities again.

When I was little, my parents used to find me with my bed sheets draped like a tent and I held a flashlight reading mysteries. In Japan it rained a lot, but I liked to be outside. So I often carried multiple umbrellas to build forts, including to read under my little umbrella fort.

I have two new favorite places at my new house. I still read on my bed when it's a bad day, because then I'm still able to have adventures instead of thinking about feeling sick. (No electronics in my room). An indoor corner is good for me in case of bad weather or bad limitations day. But getting outside is so much better. So I've always tried to find a corner indoors and outdoors. This picture taken from my back door is the first corner I set up. In the summer it's very shady. In the winter it's very sunny, and it has a peaceful view. My deck has potted herbs along the wall, so even if I'm not very mobile, I can still have a little taste of quiet and the outdoors to decompress some. The deck overlooks a hill and small creek. If I cross the little bridge over the creek, there is my favorite place (2nd place) for if I have a good walking day. It's under a big, low growing tree, surrounded on two sides by a thicket. I can sit in that corner, on a blanket, real still, and see tons of birds and squirrels running across the branches in front of me and overhead. Sometimes butterflies flutter around and bunnies hop by too.

I love efficiency! I even love my laptop. It may seem sitting still and taking breaks from electronics is inefficient, but I truly believe everyone needs unplugged time to recover. It depends on your day, demands, etc how much down time we each need. Most people feel the crunch more in December or at final exams. I find spending quiet time in a little corner of nature helps me work and think more efficiently. If I don't take the time, I'm just going to waste the time fighting migraines and everything else that comes from not resting enough. Looking at birds and trees is much more pleasant! Have you found a quiet corner outdoors for you yet?

Tuesday, January 6, 2015

Instead of New Year's Resolutions, how about making a lits of your needs?

picture I took of strawberries I picked at farm
One good thing crazy health does, is it causes you to really think about what's truly important and what your needs actually are. When I have a day that everything seems to spin out of control, I try to stop, and just take care of my needs. Whatever is scheduled, I call people and apologize to explain that I have to have a "shut down day to recover." Often that means no electronics for the rest of the day, minimal lights, nourishing food, drinking lots of water, a good book to loose myself in, and a good night rest. It helps me recover much quicker. By the next day I can try again.Yes I do have children and have done this since they were little. They stayed close by and helped me keep everything a little quieter and a little darker during the migraines until my husband could get home. They really understood.

Unfortunately my bad days are happening more often and get more severe. So what to do next? Other friends have asked me the same questions. The next thing I did was make sure I didn't schedule more than one thing per day. So if I had to cancel, I never had to make more than one phone call. Also, now each person is aware of my health, and that it is unpredictable, so I feel less guilty canceling last minute. I'm also always looking for ways to simplify things!

Another thing I've been doing for awhile is reading autobiographies of people with MS, polio, and wheelchair users (especially paraplegics), trying to see how they adapted to their new life changes. Unfortunately most the stuff I really want to know it seems they learned in rehabilitation centers and with occupational therapists from an injury. So I'll just have to keep learning it hand's on I guess. But it does help to know I feel the way so many others feel. I read one book this month I especially liked. About MS and feelings. There's books about the clinical, medical part, but not the emotions of how to deal with a chronic disease. This book amazingly does that. I'm in no way associated with the author or publisher. I just found it helpful and really well done. If interested, here it is on Amazon: MS & Your Feelings by: Allison Shadday 

to help me in kitchen
Instead of looking for new things to do for the New Year, I'm thinking about what we really truly need, actually making a list of it, then addressing them the best that we can. Just the basics are hard enough for me some days! When you have bad handicap days, you think even more literal and simple. Like: I need food (that I'm not allergic to), sleep, and to go to the bathroom. (And shower or bath as soon as I'm strong enough, usually the next day.) Walking across the room is nice and independent, but isn't necessarily essential. If the bathroom is across the room, getting across the room is then a need. But if your legs don't work, then you start to think creatively. What obstacles prevent you from getting across the room? How much does it cost to remove those obstacles? If you had a wheelchair could you get through the door to food? How far to food? Same floor or does a flight of stairs impede you? One obstacle I've had with food is that my hands and feet aren't working so well. So I keep dropping everything. If I want to make a salad, that's a lot of things to get out and the potential to drop a lot of things (including a knife and cutting board). I found my solution by this little cart from Ikea. http://www.ikea.com/us/en/catalog/products/30216536/  So now I load everything I need into this cart & push it to my dining room table to work. It's light weight. I can either push it walking in my braces, or push it in my wheelchair. It's safer, efficient, no tripping over what I drop, and much less frustrating!

Maybe your needs aren't literally trying to walk. Maybe you want to go for daily walks for exercise. Maybe your need is to have a good night sleep regularly. Or to have more time with family. Or to eat healthier, less take out in your car. Or to commute less. Or to be in a different house that meets your health needs better, or a house that you can afford better. Or to walk into a roomful of people and not feel anxiety. Some things may seem like wants, but if they affect you physically and emotionally, and if they affect you daily, I think it's safe to say you may want to re-examine that as a need. If we make sure especially on our bad days, all the needs are being addressed, that will make 2015 a much better year for us!
Happy New Year!