cidp fatigue

July 21, 2006 at 12:01 am

Brian, I know some of how you feel. I am a computer programmer and my life is in my ability to think programming through my hands. when I lose my hands, my productivity drops tremendously. however, through all of this, I have researched technology to help me through my days – especially my rough days. I have learned that aids-to-daily-living devices are tools for me to use that allow me to decide where to spend my energy. I know that using ADL devices seems like “giving in” to some folks but let me tell you they are completely wrong. When I lose my hands, I use Dragon Naturally Speaking. There is a legal version of this software that might be helpful to you. you may do dictation anyway, but if you have to prepare your own type written documents it could save you allot of time and energy.
At first, concerning work I had to set up an office here at home with a twin bed in it. I would work a few hours and sleep a few hours. Of course, that meant that I didn’t finish a full days work until later in the evening or night, but at least I didn’t have to push myself until I crashed and set myself back so that I required an entire weekend with only about four hours total of full consciousness and the rest sleeping. Been there and done that. pushing past the point of needing a break and short rest requires us to rest allot longer when we do rest – for me it’s about twice as long.
another HUGE asset I have obtained is a power wheelchair and the attitude that I don’t give a rip what people think when they see me in it one day and not in it the next. we don’t have to explain ourselves to anyone. we know what our bodies tell us. Mine has let me know – if you’re going to be standing around for a couple hours that might be fine. BUT, if you’re going to be walking about for a couple hours – especially when it’s hot and humid and some of that walking is going to be outside – my body tells me “sit that ass in the wheelchair and conserve energy!”
I put these suggestions out there because part of dealing well with people is being at your best. Being at your best means that you get enough rest. I’ve had CIDP for almost 9 years now and I can tell you that ADL devices, power wheelchair, handicap license plate, voice recognition, all of that stuff has been created for us by folks like us and using them pays off. It lets me decide where I’m going to spend the limited energy I have and it helps me get through those tough times when I have to pull an all-nighter for work and I have tools available that help me spend my energy more efficiently.
Shoot, at first, I even had a couch moved into my office and when I began to feel run down, I just shut my door and plopped down on the couch.
I know this doesn’t help for allot of folks and sounds really trite, but folks who don’t understand now – they’ll be understanding in the future, it’s a guarantee
I’m not sure this is helpful, but I just felt like somebody should encourage you to find ways to fight the battle of remaining employed full-time while having CIDP.
Good Luck!