After this past weekend, I realized something that I felt was pretty profound.
There have been a lot of decisions I have had to make over the years for the benefit of my health; decisions I fought against. They were hard choices I felt I had no option anymore but to make.
Then suddenly, after I made each decision, I realized how much it actually helped my situation.
While I don't regret taking so long to give in to certain aspects of these diseases, I am glad that I finally came to my senses. I wouldn't change anything, because if I had made the decisions any sooner than I did, that feeling of failure would have crept up a lot faster and would have permeated my thoughts.
Let's go back to when I was 14.
My Ulcerative Colitis had gotten so severe that my doctors wanted to remove my large intestine. I fought this so hard that even when they booked me an appointment to discuss ileostomy bags and paraphernalia for a stoma, I completely tuned out and refused to take in any information. I was so reluctant. Three years later, only when I had tried every possible medication and treatment available, and when my large intestine was very seriously killing me, did it finally happen through an emergency surgery.
Of course, I developed Crohn's and chronic inflammation in the J-Pouch they eventually created, and my time with the ileostomy was kind of awful at times, my inflamed intestines are better without my large colon.
Then let's go to the buckets, the Depends, and the camping toilet.
In high school, I didn't want to admit to anyone (not even myself) what I could and could not handle. The only reason I finally quit basketball is because of my chronically inflamed pancreas that could kill me if I got one bad jab. Then every activity I had to quit, I would add two more of a different kind. I was the definition of stubborn.
But who wants to buy something that is a full admission that something is a problem. If you buy Depends, that means you have admitted that it isn't a once-in-a-while random occurrence caused by a specific activity. No, buying Depends, putting buckets & toilet paper & hand sanitizer in every vehicle, and having a camping toilet in the main vehicle - this is the acceptance of something truly embarrassing. It took me a few years to finally give in to buying these items.
And yet, once I did, my life was so much easier!!! I wasn't racing to the nearest business or suffering exponentially if a business would not allow me to use their washroom. I had to throw out a lot less clothing. I could actually go on road trips. I felt much less 'stuck' at home with the comfort of my own washroom. I had less laundry to do and fewer blankets ruined. The mattress stayed cleaner and driving to school across the bridge wasn't as paralyzing.
When things like this happen, it's not like it's easy. It is humbling, embarrassing, numbing, and makes me feel even more ill. But at least using the tools I finally allowed myself to own made things easier.
Fast-forward to the Handicap Permit.
Again, for the longest time I did not want this distinction. I fought hard against it. I didn't feel I was ill enough.
When I ended up with a heart issue, I finally gave in to a temporary placard. By that point, if I could not find parking within about 100m from the front door of the University, I wouldn't be making it to class. Our parking situation was pretty good, but not if you consider serious illness. Most of us usually parked several blocks away.
Then my heart went kinda crazy and I couldn't do that anymore. So I applied for a handicap parking placard.
This saved me on SO many occasions! Not only did it help with my heart, but I could actually park near an entrance with a washroom directly inside. This permit, which I have renewed every 5 years, has made the difference between actually going somewhere or just going home because I can't actually walk across an entire parking lot on most days anymore.
Applying for a government program specifically for those with disabilities was one of the most difficult realities to face.
I needed to come to the realization that I needed help, and help that was too much for my family to provide.
This was one of the toughest decisions. I pushed away the idea of the label, the designation, because I didn't feel it. I was still attending school and working and playing sports and doing all sorts of things... but I needed a safety net. It was obvious that I wouldn't be able to keep up that kind of lifestyle with the diseases that I suffer from. It was inevitable that I would deteriorate, unless a miraculous cure was found, so I needed to ensure that if/when that happened, I would be ok.
So I applied.
Then, getting the good news of being immediately accepted was a bittersweet moment (I get a lot of those). It meant that I didn't have to appeal or re-apply, which could have been stressful, but it also meant that my situation was bad enough health-wise to be considered Severely Handicapped. That was a hard pill to swallow. But that designation has now made my life so much easier - and it has helped take the pressure off of family and friends. I HAVE help. I am entirely grateful for it and part of me wishes I had applied sooner. Of course now with my current situation with Rj, I am no longer in that program, but it was there when I desperately needed it. I could not have stayed in this city had I not been a part of it - I would have been back in the basement of my parents' house if not for these kinds of programs.
Following that was the decision to go on Short-Term Disability.
Wow was this one ever hard.
It wasn't even my idea.
I knew that things had gotten bad, I knew that I was suddenly calling in sick and I was leaving early on certain days and I was spending 3 out of my 6 hours of work per day in the washroom. I was still productive, but not enough. Rather than crashing every three months, I was completely crashing every month. I was in the ER almost monthly, and I could never fully recuperate. I became more of a burden.
My boss - my manager - who was amazing really, she suggested I go on Short-Term. At first I tried to convince her that I didn't need it... but eventually relented when I realized it wasn't exactly just a suggestion. I was to go home that day, try and recover, and then come back.
This felt like a completely failure. It took me probably a year to get over that feeling for the most part, although the guilt still gets to me. Short-Term slid into Long-Term, and I have never been capable of going back. My health got worse. I deteriorated in several areas, got diagnosed with new severe illnesses, and I have a hard time with everything.
Being off of work is exactly what I needed though. The reduction in stress alone has helped me spend less time in the hospital. I can be on all of the medications I require without worrying if it will affect my ability to work with numbers. I can focus on my health instead of working.
It was one of the best decisions that I didn't make.
It is exactly what I needed, and although I was fighting against being on disability at age 26, it was the right choice.
After that was the cane... followed by the walker.
Again, I didn't want it. I didn't want to admit that I needed it.
So I looked online for the cutest canes I could find, ordered one with bling, and started using it. Although I still get stares (mostly out of curiosity), it helps. Without it I couldn't do simple things like get a few groceries or go out for dinner once in a while. It got me out of the house. It got me out of my little box when I was living alone - it helps me get more involved.
The walker too - when my shoulders can't handle the pressure from the cane, the walker is my best option. Once I finally decided to use it, my god did my days get easier. I didn't have to fight to find a bench or a seat if I was somewhere busy. I could sit whenever I needed to! I didn't have to carry my purse the whole time. I could take my time, lean as much as I required, and had the autonomy. That was huge! I was SO reluctant and it took me so long to come to the conclusion of using one, but it has saved my energy in so many situations. It was so worth it!
And now we come to this past weekend.
The wheelchair.
This one I think was the most impactful.
I finally got to ENJOY where I was instead of being distracted by the excruciating pain of trying to walk everywhere. I wasn't thinking as much about the pain in my hips, and shoulder blades, and back, and neck. I wasn't so worried about falling over, losing my balance, getting dizzy, or having to move at the slowest pace imaginable.
I could simply enjoy my day - without making my illnesses worse.
What a novel idea!
Not only that, but when I DID want to get up and participate in something, I just took my cane out. So one or two midway games were fun instead of increasing my pain beyond comprehension. I could actually focus on what I was doing. I was less exhausted, less distracted, I didn't feel like I was about to fall over because I had pushed too hard.
And now, with how amazing that made me feel... with how much more I could participate... we are now looking into purchasing a used wheelchair. I could actually go to a concert or a game now and then if I had a wheelchair. I could enjoy a football game, or a home and garden show. I could go to the big Christmas markets. I could go to the MALL!! Places I could not fathom walking around... a wheelchair would help me do that.
A wheelchair would actually give me a little more freedom.
That concept never even crossed my mind. A wheelchair = freedom. The reason that is possible is also because I am not bound to it. I realize that my situation is far different from someone who requires one 24/7 and I am aware of my privilege. I am just thrilled that I finally see these tools for the benefits they offer.
Once I finally let it all go, once my pride was broken down by years and years of illness and pain and fatigue, once all of that was put into perspective, I could utilize these tools.
Once I saw them for items that would actually HELP me have a better life, that was when I finally saw them as positive instead of a negative; as giving up. Instead of seeing my need for it as a failure or deterioration, I view it as an opportunity to do a little bit more. I am not giving up, I am simply giving my body a break from my relentless stubbornness to do everything that I shouldn't.
These decisions were all really difficult, but each one ended up making my life easier & better, and giving me more freedom.
Who knew?
