A day in the life of Maxi
Two posts in 3 days, wow - wait 4 days? Something like that.
I’ve been meaning to do this before and just flat out forgot to do so. A couple people have asked what it’s like for me. How do I cope, function, live or not. Obviously it isn’t easy but I do have to say that this blog entry isn’t for sympathy or a woe-is-me type thing. I also think that to get a full idea I’d have to have my day video taped start to finish and don’t think I haven’t thought of that. Maybe someday, but hopefully I won’t have to and I’ll get my life back. We’ll see. Also this is all going to be pretty general as each day is a monster in and of itself.
I wake up anywhere between 4am and 7am. Sometimes I’ll get up and load up on my meds and they wipe me out and I get back into bed and sleep a few more hours. Those are on better days, relatively speaking. Mornings are the worst. The Crohn’s isn’t a morning person apparently. It sits there inside my abdominal area like a pissed off radioactive pumpkin or something. It’s almost like the pain radiates out with an occasional spike that juts out stabbing me. It also feels like as I lay there “sleeping” it affects my spine somehow. My lower back just behind where my guts are gets so stiff and painful that literally I have trouble moving or getting out of bed. Paralyzed is a word that seems overly dramatic but I am in a sense. It hurts to move and hurts to not move. That’s about when the stress of the day begins.
After a few minutes of my morning swear-fest I’m able to move some what and I make my way down stairs. Yes, stairs. I know what you may be thinking but I’m ok with stairs. I get very little exercise as it is so I’ll take what I can get. When I get down its time to load up on the meds. Fire up the coffee machine and my day of holding the couch down so it doesn’t wander away begins.
There isn’t much to report here because I literally don’t do much but sit there, lay there, repeat. If the puppys need to go out I’ll go out with them. They are performance artists and love an audience when they poop. On a good day I’ll try to tinker in the shop. I have a little shop in the garage with parts of computers scattered all over. If I’m able I try and focus elsewhere from the pain and the feeling I have in my guts nut even on a good day I can only manage about an hour or so and then it’s back into the house and my good friend,….the couch. I find that I usually can’t focus. As I have always been a “thinker” and a “tinker” its not easy for me, and that tends to stress me out further. When I can’t focus I also feel even worse physically. Somehow or for some reason the inability to focus feels like it drags me down health wise, emotionally and kind of amplifies the “sickness” overall.
A&E crimes shows, the Science Channel, and a cheese ball movie on Chiller help me through the rest of the morning, that or the news. And the next cup of coffee. Before you post, the coffee is ok for me to drink withing reason. No Bailey’s added and under 3 cups a day is ok. Down from my usual 40 cups, so it’s all good. I try to stretch a little. Bend a bit….if I’m able. Usually I’m not able.
As I sit there it’s nice to have my “therapy dogs” with me. Funny how they know, huh? If I am having a REAL bad day they don’t leave my side. Vinny is on my lap at I type this entry. These guys really work wonders. I say if you are sick, get a pet! Well about now it’s time for the second dose of dope. My pain doc wanted me to switch up things a bit, how I take the pain meds. I’m taking pretty big doses 3 times a day now. It was hard to adjust to that at first. I’m so dependent on the medication. I used to say I’m hooked on the junk in a joking way but to express my serious concern. You see I never did any form of drugs growing up. What I take now is a meth heads dream, Im sure. I don’t joke about it much anymore after Dr. Maddux ( the pain doc ) brought up a very good point. As he put it I’m not selling the DVD to get more drugs, or turning tricks on Colfax to get a fix so I shouldn’t refer to my valid reasons for taking pain medication as an addiction. Even tho it is, its more of a justified dependancy. Usually the bastardizing of words that this society we live in does annoys the HELL out of me. But in this case I think it makes sense and, every bit of this pun is intended, makes it an easier pill to swallow. Sometimes the dogs relieve the stress a bit, or if there’s a good “bad” movie on.
And so the afternoon comes. Because it hurts to sit, stand, lay, walk, be still, juggle kittens, and breath sometimes its not easy for me but I try to sit in front of the computer a bit and desperately try to keep up on technology and my chops up. I live for the day that I can WORK in the sense that I was doing before getting sick. Back then, hell I’d do a 15 - 16 hour day and
not break a sweat. I’m a professional creative geek so what I do isn’t work to me. Being able to do what I love is the best. So the fact that sitting can keep me from what I love is frustrating. But I do what I can and when I’ve had enough I’ve learned not to push it. I’ve paid for that in the past. And once again, back to the couch or to bed. I think the amount of pain meds Im on now wipes me out so I head upstairs to bed. I haven’t mentioned the CPAP yet because mostly that’s a bed time thing but if I nap I also wear that thing and use the Oxygen as well. Usually thats only 2 hours, on a good day it’s 4 hours.
When I get up from the nap, I might have some dinner. Overall I’ve been trying to eliminate corn as you may have read before here, and just generally I try to eat as healthy as I can. I’ve had the Crohn’s since late 2003/early 2004 or so - so now I have a basic understanding of what I can and can not eat. I can eat most things but after reading how food ingredients can affect your health I’ve been seriously watching everything that I pump in my body. Depending on how I feel I may try and play World of Warcraft which is a nice escape for me. I have some pretty good friends there online and at least my character in game can run, walk, and when he feels like hell I just patch him up and he’s good as new. Lucky Bastard!
So around 9pm or 10pm it may be dope time again. Taking the pills late in the evening seems to relax me which is a welcomed change. After feeling stressed out or being unfocused all day along with the pain, cramps, stiffness and so on - its all pretty exhaustive and for whatever reason the evening medication take the edge off. If there a break thru with the pain meds I will usually seize that chance and head to bed. I fire up the R2D2 Oxygen unit and wake up the whole house because it beeps loudly when it starts up. Then start up the CPAP and strap it on. During the night I run the risk of vomiting in my sleep or the latest and most alarming event…my “other” hip - the un-operated on one - ya know, the last of the real hips of Maxi locks up. I don’t know what I do prior for it to lock up but the pain of that is off the scale. I’m not sure if I can go thru this whole hip surgery thing again. I don’t want to, hell I’d rather end up in a chair than to go thru the rest of my life with two artificial hips. It is not that I don’t trust the surgery, the technology and having done this already I know what to expect. But I feel that because after my hip surgery I got sick and didn’t heal well. I’ve recently discovered that I can not run. At all. That’s alarming to me. Anyway, I digress - I wake in a panic because of my hip. It’s a struggle to get back to a position that doesn’t hurt. It doesn’t pop back into place or anything, so I don’t think its popping out of course, but that level of pain tells me that something isn’t good, AT ALL. Takes me a while to get back to sleep but I do. I may take a melatonin pill or something to get back to sleep. It’s not for long as the whole process will start over again at 4am or so.
That my friends is my day. Sort of. I left out a lot. Like how many times I run to the head, even tho I believe the Crohn’s is in a semi - remission state I still go,…a fair amount. Even if it isn’t full blown Crohn’s it’s vicious as all get out. That is a basic day of sorts, since every day is literally so different from the next it’s hard to say. The pain levels change, the naps happen sometimes,…or not. Hell if I have a good day, it’s almost like I’m not sick at all. I can go out in the shop and put a computer together, or go play with the dogs, even go for a walk with them. While those good days don’t happen a lot - while they happen I LOVE them but part of me HATES those kind of days because I know, without a doubt, that it won’t last and literally within an hour or so I can be even worse than I was the day before. Frustrating doesn’t even scratch the surface of this situation. Sure I question how I got here, I get mad and bitter, or I laugh at my - literal - shitty luck, my emotions run the coarse to be expected. I’m often told that I have a great attitude about this, and if I do - it’s only because I still refuse to be beaten by all this. That certainly doesn’t mean that it doesn’t take its toll on me, and my wife and the rest of the family.
Anyway, that’s a day or something like a day in my life with all my kooky problems and issues. Give me a month and this could all be completely different as the next batch of drugs, the next series of test, and the next twist and turns in my health could possibly change all this. That’s ok, I’ll post about that as well. Sorry if this post sounded more dismal than most of my blog entries, it’s one of the few times I’ve posted when I feel like total ass. I’m feeling like ass now.
Thank you that is all, for now. Over.
-maxi