Saturday, August 24, 2013

Why I Walk My Wheelchair to Class: Finding the Balance in Chronic Illness

One of the hardest things to do when you are chronically ill is finding the balance between laying in bed and doing absolutely nothing on the bad days and doing absolutely everything on your good days, so you in turn have 2 weeks of nothing but bad days. It is such a vicious cycle. And I am here to tell you, that I am the biggest failure of it of them all.

I am here to tell you that not even yesterday was I sitting on my front yard crying to one of my friends talking about the constant exhaustion and not knowing how to balance things and just wanting to have something positive in my life. Her in return telling me to do things small (like just one good thing for a small amount of time). And me in turn spending 12 hours in the hot sun today. FAILURE! We are in this together friends. I don't write these blogs because I have all the answers, I write them because they are my struggles and I know as someone with chronic illness that you probably do too.

I was originally going to title this blog "Am I really that disabled?: Finding the Balance in Chronic Illness"...but the real reason I'm writing this blog is because I'm having some minor, unnecessary wheelchair self-conscious issues. See I just started using this thing big time this week for school purposes. If I carry my backpack into class, I don't make it to class. I have to sit down in the middle of the street, parking lot, hallway, whatever, and wait for someone I know to help me to class because the ridiculous distance I have to park away from my classes (even with a handicap tag) plus the weight of my book bag (even with Kindle edition textbooks) does me in fast. So I'm wheelchair bound.

Lucky me, I've got a great pretty one. And I look great in it.

Unlucky for me are several things. Here I will make you a list.

  • I get my own wheelchair out of my trunk, put it together, put my book bag on the back, and sit down and wheel off. I'm sure that looks weird. Like how many handicap people do that. 
  • Once I get to my class I don't really need to use my wheelchair anymore necessarily because I don't have the book bag weight (unless I'm going somewhere further away, like to eat) so I look like a weirdo wheeling in and then walking to like the bathroom and water fountain and office and feel the need to explain to everyone when they ask me about it, even though it's no ones business. 
  • My campus is not wheelchair friendly at all. The ramps are at a huge incline (for instance, the one in front of DISABILITY SERVICES was so steep, I took my wheelchair back to my car and packed it up and decided to walk because I could not get my chair up the front of disability services...not joking) so it's super hard to wheel up them. Half the time when I finally get up them, there isn't a button to push to open the doors for me so I have to hope some one walks by to open the door for me, the doors aren't really wide enough for me to fit through comfortably, and the sidewalks are in horrible repair so it's REALLY hard to make the wheelchair go anywhere at any rate of speed because with my book bag, plus the chair, plus my low musculature and the fact that most of my dislocations happen in my upper extremities from my EDS it's ridiculous to try to get that thing to move fast (heck at all). Luckily, people have been awesomely accepting and willing to push me if they have been available :)
  • The closest parking lot to my classes is a faculty lot. There are 3 handicap spaces in it, they are all filled by the time I get there (7:30 am) and rightly so, because there are at least 2 staff in the building my classes are in that are in wheelchairs and several other handicap people in other ways. Technically, as a handicap placard holder, I'm allowed to park in any handicap space, or any next closest space to my destination if a handicap space is not available. Technically, the next closest space that is available would be a faculty space that is not handicap in that lot. However, I've been going to a much further parking lot and parking in a handicap space there because it's a student lot and a handicap space and wheeling to class and praying someone will pick me up on the way, or I won't run out of energy because I don't want to send the faculty member I kick out of their space to the other side of campus to park. I feel like I'm not handicapped enough to make them forfeit their paid for parking space. However, my friend made me think about it last night. She asked me if it fatigues me more to go to the further away parking lot and go that far. I said yes, she told me that I should be parking in the faculty lot then, because I need that space. The faculty member can surely walk the extra feet, I surely need the extra energy to wheel across the bumpy sidewalks and down the hall to save that energy for my studies. Didn't think about it like that before. But that still makes me feel uneasy. So uneasy that....
  • I have been seen pushing my own wheelchair from the farther away parking spaces to conserve energy and then if I need to sit down I will sit in the chair, take a break and get up and keep pushing it and then when I get in the building where it's all smooth, wheel down to class. Asinine I tell you. And if I thought I was concerned about people thinking I looked weird getting my wheelchair out of my car myself, and walking around the building myself without it throughout the day, how am I not concerned about pushing it down the street and not sitting in it? (I am by the way).
So these are some of the reasons why I'm even wondering if I'm disabled enough. Or what makes us disabled enough. But then I have days where I don't balance well. Then I'm reminded that I'm disabled. Pretty severely infact. 

Like today. My town has a block party every year. I always go all day because my mom works for a church that has a booth and my aunt and uncle's photo shop and portrait studio have a booth so I go to "help out" (hang out) with everyone. Well, we knew I was already having a rough-ish week. So I brought my wheelchair and did not get out of it much at all. The sidewalk was crowded though when mom and I went to go get lunch and the place we were going to get lunch from was literally 100 feet from where our booths were. So I parked my wheelchair and we walked. I almost passed out and had to sit down immediately in front of the grill at the food place. Then when we got back down to the booth (after eating) I had to sit down immediately again to keep from passing out. Both times were separated by at least 30 minutes if not longer. The only thing in common was walking 100 feet in heat. We should have brought my wheelchair. Oops. Or maybe I shouldn't have stayed the full day this year, knowing that I wasn't doing as well this year and I'd had a bad week already. 

I mean, it wasn't really a bad week (minus Thursday, that was bad) but it was the first week back to school and after 3 months of doctor's appointments and no other obligations or schedules. Having to be places at certain times, plus doctors appointments, plus homework, plus realizing that this stuff is serious and that the stuff you are learning if you learn it wrong could like kill people was exhausting. Plus, I have to be up at 6:45 and out at 7:15 every morning this past week. Eventually it will just be MWF and probably Thursdays for infusions (but I can sleep once I get to those). Lectures are 4 hours straight and that's hard for anyone, let alone someone with brain fog and chronic illnesses. 

I have to get back into the groove of things and remember to find the balance. I have to remember how to be good to myself and be good to the world. Another thing my friend said to me during our talk in my front yard yesterday was that she very rarely lets people see her for a full day because she wants people to see her when she is able to show them her good parts and her joy and I want to be like that too. Therefore, that means, I will probably only be able to see people during school hours for right now. But it's so true, when I'm tired I'm not a happy camper, and my mom gets a lot of that unfortunately. But pain and fatigue does nasty things to people.  But part of finding the balance is going to be making sure that I'm attempting to only show the good parts of myself to the world. That's the goal anyway. I told you...the word of the year is ambitious. 

So while I'm over here trying to find the balance of  living in the extremes of being too un-active and too active, wheelchair or no wheelchair, extrovert or introvert, joy or sorrow, etc. you work on that for yourself too and look at this picture of me today looking awesome in my wheelchair with my zebra t-shirt on embracing the fact that I can be ok being in a wheelchair in front of thousands of people. I guess. Some days I can be ok with needing help and knowing I need it. And that's the start to finding the balance. 


  1. Wow, wow and wow! Do I identify! May I make a suggestion? A nice walker/rollator with seat might be a better compromise for you? I had to 'graduate' from cane to walker this year. Now I can't say I was super thrilled! In fact it's pretty humbling and gets me down sometimes. By I can't deny the fact that without it? I can't really move anymore. My Dr suggested it and as I was crying she asked me why I was crying? A physical injury or illness is just that! If people want to judge ......pooh on them I guess!!
    Anyway, I too at times have to use a wheelchair, elec cart etc depending on where I'm at. But for many day to day things and around home I use my walker. Many are very lightweight and would be so much easier for you to put in/out of car. Mine has storage under the seat as well. It may be a better and more practical choice for you for school. Something to think about maybe?
    As for finding the balance.....I think we all with chronic pain/illness struggle with that for sure!!! Hang in there and thanks for sharing !

  2. Thanks for reading and responding. However, a walker would be completely impractical for my situation. I have a chronic illness called dysautonomia that prevents me from standing up for longer than 5-10 minutes without passing out (especially with the added weight of a book bag). Therefore, having a walker wouldn't be practical because I would have to be standing up the majority of the time, it would have a seat, but once I was sitting there wouldn't be anyway to move anywhere else because once I get feeling like I'm going to pass out I can't use any of my muscles well, especially my legs, so I wouldn't be able to move it anywhere. Also, there may be storage, but probably not storage for a 40 pound book bag that currently just pops on the back of my wheelchair. Plus, my wheelchair only weighs 18 pounds and fits very nicely in my little yellow sports car. :) Trust me, my docs and I talked long and hard about this. No 20 something year old wants to be in a wheelchair for the rest of her life. You just gotta make the best of it. But thanks for the suggestion! It was definitely on the list, but with standing up being the issue all the canes, walkers, rollators, etc. went out the window pretty quickly, unfortunately. :(

  3. This is a great post. I really relate to alot of your points. I have CFS and fibro and have been getting worse this year, due to trying to be 'normal' and working full time and doing all the things I like to do outside of work--in other words, no balance. Wheelchairs have been on my mind lately, and alot of your points really hit home. today I was at walmart, and told myself to get the scooter today, as I'm realy exhausted, but I chickened out and walked around. What a huge mistake! It's the idea of all the looks and glares while I walk to the wheelchair, walk out of the wheelchair and then walk to my car. I've got to learn to accept my limitations so that my life in general would be better.....balance..rather than so many hills and valleys. Thanks for this post. It's a great read. Janet