Tools/equipment That Help You Day To Day

[Becia]

Is there some special thing you have or use that helps you with your day to day life with dysautonmia? For example, my iPad goes with me everywhere, because i use it to organize my thoughts, to relax with music when I'm feeling triggered or stressed, and to talk when I can't seem to form the words right. I can't raise my hands above my head without syncope, so I use an extender/grabber tool to turn on the oven (I can reach the oven from my chair, but the knob to set the temp and timer are on top).

The past week since I've been recovering from the hospital stay, I've been trying to find things and change things that could benefit me somehow, to regain some independence, and just attempt to see if it works. I'm going to school for medical transcription, but I have a desktop computer corner desk. Some days I'm okay sitting there for a few hours to a transcribe or listen to vocabulary files, but most of my book work, I'm having to do somewhere where I can put my feet up, mostly in bed. Yesterday I sold my desktop, and purchased a laptop...hardest thing I've had to do in a long time. I loved my desktop, but physically, it just harder on my body with my feet down for the pedal and such. With my laptop, I can operate the pedal with my hand. I also installed a voice recognition program to help with my typing, because I've had so many problems with my hands, strength, and coordination. I haven't blogged on my blog in a long time...last night io transcribed the entire thing, and it was so awesome. It made me feel like I've made a move in the right place.

I also ordered a system for my bed that will allow the head of it to incline like a hospital bed. When I was in, I slept at an angle kinda up, but in a ball, in case I needed throw up, I didn't aspirate, and if I needed to get to the bathroom, my body didn't have to go through the long process of trying to sit up, passing out, sitting up more, passing out again. It was kinda halfway there, so the getting into my chair was easier. I know some elevate the bed heads, but doing this had me feel like I was sleeping standing up, and was horrible feeling. This system just raises the head, I can deflate it if desired or change the angle, and doesn't require a special mattress. It's supposed to be here today, I'm really super excited.

What are things you use? Strange things, simple things? If it gives me any sense of being able to do something, such as reach a cookie sheet in the pantry, I'm all for more suggestions.

[Becia]

I think my biggest change area had to be in the kitchen. I love to cook and experiment, being a baker by hobby, and love kneading bread. For me to have a work surface I can reach without having my hands above my heart for too long, I have a table top board that I found at Home Depot, just a simple wooden cut out, that fits perfectly on top of one of the kitchen stools, to make a work surface for me. I roll out doughs there, I use it to hold stuff while I'm cooking or cutting veggies, as well as use a kitchenaid mixer to now help with mixing and kneading. Still isn't the same as getting in there with knuckles, but it's better than nothing, and sometimes the smell of homemade bread can perk your smile up.

[pink1975]

I have a laptop since when I am home I am often sitting in my bed. I also have a kindle that goes with me everywhere to keep my mind occupied and keep me sane, lol. I have a MomAgenda planner for organizing everything in my personal life, it has spaces for myself and my kids and since I can't remember things like I used to, everything gets written down. I have another bound book at work that I write all of my work tasks in each day. It is bound because I tend to lose papers that are loose. I also keep my ipod/headphones with me all the time since somedays excess noises, even just simple everyday office noises bother me so then I put on my favorite music so I can concentrate/relax. I also have a space heater by my desk since I am freezing most of the time even in the summer. I wear fingerless gloves almost all the time to warm up my constantly icy hands. I also always have blankets/shawls, etc stashed everywhere, car, home, office to keep warm. I also wear multiple layers every single day, knee high socks, leggings or tights, pants and a tank top, tee shirt and sweater layered together.

[srb]

I also use fingerless gloves a lot, even at work. Have several kinds of hand warmers as well for when I'm freezing/Raynaud's flares. I have space heaters in several rooms at home. When I swing to the too warm side, it's harder to manage but that usually occurs in very brief spurts or in the middle of the night.

Sounds like pink1975 has the organizational things down a lot better than I do though! This is where I need to improve for the sake of my job and my children. We use shared Google calendars to keep track of all the scheduling stuff. I'd be sunk without that tool.

Recently found an awesome brand of performance toe socks that I wear all the time at home now and at work if I'm wearing dress boots. They are like gloves for your feet and really help me with my temperature issues.

[Chaos]

My Fitbit allows you to set silent alarms on it. Since you wear it on your wrist, it's been helpful for using to remind me when to take my meds. I was using my phone to do that but the noise was jarring, I'd frequently have it turned off or it would go off and I'd then forget to take them anyway. Somehow the combination of having this on my wrist as a visual reminder as well as the alarm function helps.

I've also found several apps for my phone that are helpful. One I'm using helps sort out food sensitivities/allergies that might be related to your symptoms. Another allows you to track pain along with many other symptoms and then prepares summary reports you can print out for your physician. Another one tracks HR/BP/Pulse/pulse pressure etc. These are much neater than all my paper notes I kept trying to keep to sort things out on my own.

[Becia]

I've been wondering about a fitbit, if I could utilize that somehow since I'm wheelchair bound. I'm wishing I could go back on weight watchers, I liked how I felt when I ate better, but the need of so much sodium, it almost seems wrong, lol.

I just now invested in a blood pressure machine. It's a wrist one, so it's small, and portable for when I'm out and feel some problems coming on. I carry a backback because I always have so much with me to help me tolerate stuff, such as temperature changes, my meds, snacks for emergencies, fluids, etc.

[Becia]

I also normally have a notebook with me, as well as one of my Nooks to read. I use the calendar feature on my phone as well as my iPad to keep things together.