Chronicles of Life with Multiple Sclerosis
"Another myth that is firmly upheld is that disabled people are dependent and non-disabled people are independent. No one is actually independent. This is a myth perpetuated by disablism and driven by capitalism - we are all actually interdependent. Chances are, disabled or not, you don’t grow all of your food. Chances are, you didn’t build the car, bike, wheelchair, subway, shoes, or bus that transports you. Chances are you didn’t construct your home. Chances are you didn’t sew your clothing (or make the fabric and thread used to sew it). The difference between the needs that many disabled people have and the needs of people who are not labelled as disabled is that non-disabled people have had their dependencies normalized. The world has been built to accommodate certain needs and call the people who need those things independent, while other needs are considered exceptional. Each of us relies on others every day. We all rely on one another for support, resources, and to meet our needs. We are all interdependent. This interdependence is not weakness; rather, it is a part of our humanity."
"The world is set up for the healthy and able, a fact the ill and disabled usually do not question. Hence, they judge themselves and who and what they should be by yardsticks applied to the healthy and able."
Two of my best friends are home from school; one is home for the summer, the other is only home for a few weeks before she permanently moves away. My life has become social commitments and sleeping.
It’s terrible. I’ve had some sort of event everyday this week and I cannot remember anything that happened. Instead of enjoying all this time with my friends, I am simply trying to survive it.
I love them so much but they’re not used to me being this incapacitated. They keep telling me that I’ll be all better after my gastric bypass. I wish it were that easy.
My symptoms are going crazy with all this activity. I just woke up after sleeping for 11 hours last night and I can barely keep my eyes open. Sweet dreams, all.
that was, in a way, this weekend.. I enjoyed it in theory but god it hurt (physically) and still does.. and will for a while I’m sure. sweet dreams to you too.
that I’m hitting one of those rock bottom moments / depressed/ reached complete exhaustion
Awareness of yourself reaching that point isn’t as noticeable/ easily warded off, when you’re desperately working to maintain health care and/or find financial assistance, housing, survival tools, and all while processing the symptoms and diagnosis of a chronic illness…
When your full time job is working to understand and utilize a system designed to “help” you while judging if you deserve to be helped and what help entails and what your new goals should be, it is all consuming. In those moments of introspection you tell yourself “man if this comes through for me I swear everything is going to be ok”. You tell yourself, at those moments, that you will be able to make decisions about life that you have put off for a year as soon as you figure out how you’re going to buy food and get medication you need. You pat yourself on the back, rightfully so, reminding yourself that that its hard figure out where to go from here when you are so focused on survival things that you can’t even processing of the fact that you have a chronic illness/that your dreams have to change/etc.
When things finally start to come through, its pretty euphoric moment. I mean, when I found out I got SSI I cried tears of joy for a good 3 hours. The feeling of relief is so overwhelming and wonderful. I am still forever grateful that all of this came together. I know how lucky I am.
The thing is, when you finally have a hold of the metaphorical ledge, have that moment you told yourself would be when you “breathe and get your shit together”, actually doing anything other than collapsing on yourself seems really hard. And then? you look down. All those big picture decisions, life changes, feelings, that you’ve been channeling into paper work and what not, come into view like the canyon below the cliff you’re hanging from. All that relief turns into panic. like a bigger fight than what you just got through, and its overwhelming.
I feel like an asshole. Now that I’ve figured out these basic survival issues I want to get to the reassessment and moving forward point but I can’t seem to get myself beyond getting out of bed and getting coffee for the next day. Its ironic isn’t it. Its the same sort of trouble the disease itself brings on. Somehow, however, this feels different. I think about the decisions I have to make. What am I going to do about school? Do I go back? Is there any way thats feasible? If I don’t what am I gonna do with the rest of my life? Will I ever have the energy to work a normal job again? Can I afford (literally and figuratively) to try something new? I want to start dating again? How do I teach myself to date when I couldn’t even do that well when I “wasn’t sick”? How do you explain your physical condition to a date? Is it unfair to try and meet someone knowing that my future might end up being a huge burden on them?
I’m generally the type of person that tries to be proactive when faced with problems. I like to make a plan A, B, C, and start down that path. Doesn’t seem like the best method with these sorts of issues. Doesn’t feel like I have time to keept testing things to see how they go. I get mad at myself for taking so long to get to that point in my career that I knew what I was doing was the right thing. I think, if only I’d worked a little harder, focused more, done things faster, then I’d have been done before this all happened. Useless thoughts I know.
I know this is a lot of babbling. A lot of useless thinking. I can’t seem to get the energy together to fight the symptoms and deal with the aforementioned pile of bricks I feel has fallen on my head when the happiness wore off. That sounds extra dramatic and I don’t mean it that way its just the only way I can describe it. I am mad at myself for not being raring to go. Ready to face these things head on like I thought I would be.
But I guess I will say that this post, long and boring and dramatic, is a first step for me. Because I refuse to ever use MS as an excuse to not hold myself accountable. I need to be able to acknowledge and understand when I’m falling into a rut and at least try to stay above water. So saying it out loud, or putting it out into the universe, is my first step.
I’m sure you’ll be hearing more about these things from me sooner than later. (sorry ya’ll).