Sunday, May 3, 2015

Vasculitis: The Life, The Legacy, And So Much Netflix Watching I Could Barf

Seriously, I think Patrick is on to something here.....

So, today is day three of Vasculitis Awareness Month and I wanted to maybe let you in on how the typical day for me goes. 

For starters, I wake up. Most people do this activity, so, so far so good! Not much different from a normal person. It always takes me anywhere from a few minutes to a half hour to actually make it to the "getting out of bed" stage of my day. I know a lot of people are this way, but not all, so I'm going to count this as another tick in the "still normal" box.

Now here's where things get a little iffy. Some days I am super stiff so getting dressed poses some issues. I know a lot of people with vasculitis that take these days to stay in their pajamas but not me. Oh no. I'm too stubborn for that; besides, I might need to go outside and nobody wants to see me in my pajamas. Nobody.

Stiff days means that I gravitate towards shoes that I can simply slide on so I don't have to do as much bending. It also means that I tend towards wearing whatever clothes are in easy reach. This has lead to some interesting wardrobe choices on my part.

Before I can face the day, I have some pills to take and inhalers to puff. I try to remember to take a pain pill (even though they don't do much but soften the pain a little bit) because if I don't the constant pain will trundle up higher and higher until I can no longer ignore it.

When I finally struggle out of my bedroom I have to take a rest for a minute so that I can get up and feed my dogs. Fatigue is one of my biggest problems, so sometimes tasks that should be easy can take me forever.

What they don't tell you about fatigue is, it's more than just being physically tired. It also encompasses mental and emotional tiredness as well. Just know that my klutz factor has been ramped up to 800. I'm not joking. In the last two days I've managed to shut my arm in a sliding glass door (the whole thing, not just a little pinch of the skin). If I had been in a horror movie that door would have chopped through my forearm and I would be typing this to you one handed. Then, I smacked the same arm, in about the same part, on the door knob of a restaurant bathroom and now I have a lump.

I trip a lot, and sometimes when I'm having a conversation with someone my mind just stops.The words just run out and I can no longer brain. Much of my communication has devolved into grunts, stutters, and pointing at "the thing". I also heavily rely on whomever it is that I'm talking with to have superior detective skills.

Most of the day this isn't a problem because everyone else in my house works and I'm the only one home. Makes communication easy, but there are other struggles that arise because no one else is around to check out what I'm doing.

Many a soup can has been lost because I read the word Tomato. Double checked and could swear it still said Tomato; but then upon opening the can discovered that it was, in fact, Chicken Noodle. By this time the label has already changed back to say Chicken Noodle because labels are tricksy things and they don't always say what you thought they did. There are also many cases where I put something in the microwave leave the kitchen and then have a freak out because I left a metal fork or something on the plate (thankfully, so far none of these freak outs have been for an actual reason as the fork is smart enough to not be on the plate when I open the door). There was also that time I put my pizza rolls in the microwave for ten minutes because I swear that's what the directions said and ended up with tiny little pizza briquets. It was a sad day indeed.

When the weather's nice enough I like to sit outside with my pups for at least 20 minutes. This only happens if I can find shade to sit in. No shade = no sit. I burn just like my poor dead pizza rolls of not so long ago.

I try to read on the days I'm braining enough to understand what it is telling me on the pages. Sometimes I like to play those new fangled computer games.  My life seems so much better when I can create a family in The Sims and become their sometimes generous sometimes terrible god.

I have also attempted to take up many different types of crafts but the only one that seems to have stuck is making scarves with a loom. Crocheting and I chose to see other people. I also like to talk with other people that have vasculitis online because the internet is amazing and it's always nice to talk to people that get it!

For those days that I just can't make it out of my chair, though, I have Netflix. Or maybe I should say that Netflix has me. I  have seen so many things there, some of them great, some of them good, many of them leave me wanting for those precious moments of my life back.

Lately, I have taken it upon myself to start going for a walk around my block at least once a day. I don't like being stationary and long to be able to go out to work, but for now a short jaunt will have to suffice. Eventually I'm hoping to extend these walks further, but for now it's good.

On the days that I'm feeling particularly brave I will head out to a store to walk around. Unfortunately, I may get followed by loss prevention because I dress like a hobo.

Many of my fellow vascies take naps during the day, but I try not to so I can sleep better at night.

Written out like this it seems like I do hardly anything. I'm sure I've missed a lot. This is a very brief summary. It also doesn't include the days of doctor's and clinic appointments which are an entirely different species of animal.

I also don't think I've done a very good job of showing what the fatigue and brain fog is like, but hopefully you get the idea.

No comments:

Post a Comment