Okay, so it hasn't gotten that bad yet, but some days I am close!
One of the worst parts have having Dysautonomia is the fact that you pretty much have to spend your days alone. While everyone else goes off to their jobs, to school, to the gym, or where ever it is healthy people go, you begin to forget where that is, you are the lucky one who gets to stay home. And not just home but more than likely unless it is a very good day, you get to stay in bed or in the recliner so that your blood pressure stays where it belongs.
Sounds like fun huh??? NOT! To all those people who say, "You are so lucky that you don't have to work anymore." I say, well I probably shouldn't put down on a this blog what I would like to say, so I just roll my eyes and smile. Believe me you hear it all when you have had this for awhile. There is another blog that I follow regularly called Just Mildly Medicated and she has talked about all the stupid things people say to you when you have a chronic illness. Here's the link if you need a good laugh: http://justmildlymedicated.com/5-things-to-think-about-before-saying-to-someone-with-a-chronic-illness-especially-if-you-are-an-ass/.
Well then what is a person to do? I am pretty good when it comes to amusing myself, at least on most days. If you follow me on my Facebook page you know that I have those wonderful self pity days when I just don't want to do anything. I try my best to keep the "Oh woe is me attitude" at bay most days.
Anyone who deals with a chronic illness will attest to having these days. They aren't fun and you can't give into them, but some days you just want to. I know that, at least for me, those days were a lot more frequent in the beginning of my illness.
Anyone who deals with a chronic illness will attest to having these days. They aren't fun and you can't give into them, but some days you just want to. I know that, at least for me, those days were a lot more frequent in the beginning of my illness.
What do I do to pass the time between 5am when Wil leaves for work and 5pm when he gets home? Well lots, on good days I get laundry done or the dishwasher unloaded. On really good days I get a few household chores done and cook dinner. On very good days, which are fewer and farther in-between recently, I get out of the house. I am still crazy enough to drive very short distances. No more freeway driving, I haven't done that for a couple of years now and only two or three miles from home, but on very good days I can still run away from home. On those days you will probably find me at Opportunity House, our local thrift store, wheeling my way through the isles in search of wonderful treasures. Up until last month when my health took a huge dump I use to run an online toy store called Island of Misfit Toys. I got most of my inventory from Opportunity House so they know me there, they know about my Dysautonomia, they know what to do if I crap out on them in the store so it is a safe, friendly and comfortable place for me to go. However when you have Dysautonomia your trips are usually limited to no more than 15 to 30 minutes, as are household chores and that doesn't take up a lot of time when you have 12 hours to burn. So what's a girl to do????
Well, I write. I love to write. Am I good at it? I don't know, I did have a publisher interested in one of my books, so I guess I am okay. Do I enjoy it? Absolutely and when you have something like this you have to find things that you love to do and do them regularly so that you can stay somewhat sane. So I write, I write on Facebook, I write my blog, I have a couple of books that I have been working on forever that will probably never go anywhere but hey it gives me something to do to pass the time. I use to be a reader. I loved to read but then I found the ever addicting art of writing and I haven't looked back.
Of course when you are alone twelve hours a day, five days a week even writing can get monotonous. That is when I find myself very thankful for having a chronic illness in the computer age. I would be lost without my computer. If I didn't live in the computer age I would still be able to write, I believe there's still a funny thing called pen and paper available out there, but otherwise I would be lost. To say that I dislike daytime television would be an understatement. Yeah I want to sit around all day long and watch commercials designed just for those of us who can't work. There's the "Injury hotline" commercials, the "Hey we can retrain you for a job" commercials ( I don't need retraining my autonomic nervous system does. How come there isn't a commercial for that?), there are the ever famous "We can get you social security now!" commercials and then there are my all time favorites, the prescription medicine commercials. Yes, I want to sit at home and listen to all the side effects of medication to solve your menopausal vaginal dryness (sorry folks that one really just doesn't belong on TV!) Who wants to take medication that may make you lightheaded and dizzy, may cause mood swings, could lower blood pressure or better yet may cause an erection lasting four hours!!! I know I don't because except for the erection I already have all those symptoms. Okay I will get off my rant now, but really does anyone want to listen to those? So I have sworn off daytime and most of night time television as well. Watch the video below and you just may swear it off too! No really watch it, it is hilarious!
I need my computer, I love my computer, my computer is my life twelve hours a day. It's a diary (this blog), my social life (facebook), my way to vist friends and family when I can't get to them (skype) and my entertainment (video games, movies, newspaper, magazine and even a good book if I ever get back to reading). If I didn't live in the computer age it would be hard to keep up socially, since most of my friends and family still work and can't be here to entertain me during the day. If I didn't have my computer I would never have time to visit my grandchildren (Alaska is awful far away for a day trip and with my health even traveling there is getting difficult.) and if I didn't have my computer I wouldn't be able to play my hidden object and word games. Without the computer age I would be stuck in my house alone playing solitaire, okay maybe not by firelight....but that is just not my idea of fun!
I guess the point I am trying to make is if you find yourself in a situation like this, whether it be short term or long term, try your best to keep yourself busy. Find things that interest you, find things that give you enjoyment. It will be hard at first, there will probably be a lot more "Oh woe is me." days than "Yes I can do this!" days and that is okay. Eventually the "Yes I can!" days will win out and when you are dealing with a chronic illness every little bit of enjoyment that you can find, no matter what it is can help.....even if it is watching those irritating prescription commercials.
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