If there’s one thing everyone here reading this, anyone who has ever met me, and myself all have in common is a shared hope for improvement in the future.

And by no means is that hope bad – it’s what keeps me going each and everyday – but too much and the wrong kind of hope, have negative implications.

Since April, I’ve relentlessly pushed myself. I’ve opened up my mind to new possibilities and have encountered so much good.

I’ve had a rough two week stretch of having more severe, and much more consistent pain that I had for the bulk of June, but my frame of mind hasn’t been negatively impacted.

Six months ago, I would have felt fully defeated and ready to give up as I had many times before. However, I’ve been incredibly successful in beginning the altering my thoughts and replacing them.

In no means am I perfect with this, but the changes I have made have a huge impact.

I sat in my doctors office earlier this week. The office was running late, the waiting room was jam packed, and then a young gentleman sat down beside me doused in cologne and suffering from severe shaky leg syndrome. In the past, all of this would have sent me into a frenzy of thoughts. Questioning if I’d be okay to drive home the longer I had to sit and wait. Questioning of the cologne would render me useless and make my pain skyrocket. Allowing the shaking leg to make my heart begin to race, and anxiety kick in. But, I glanced back down at my book, took some deeper breathes and everything was fine.

Yesterday I was severely incapacitated. I managed to make some yummy eggs for lunch, but by dinner time I knew standing and preparing food wasn’t going to be an option. Silly me hasn’t quite figured out the cooking/prep and having easy things ready for my consumption on days like this. Even my bread was in the freezer and wouldn’t thaw in time for dinner. So, I had to go against my budget and order food. Even though it was not my first choice, I had to allow myself to remember that eating was most important, my budget could be figured out, and it would serve as a moment to learn from so I don’t end up in the situation again.

In additional to mental progress, I’ve made physical progress as well.

My severe, incapacitating pain has dropped a lot in frequency. However, over July my mildly incapacitating pain has almost doubled.

I consider this my plateau.

Two fairly consistent months in a row with “high pain” and varying medium pain, coupled with a bunch of less than lovely side effects. The changes I’ve implemented have done one very great thing for me, they’ve given me a new “normal” and a new baseline to compare with.

However, I’m left with a whole lot of everyone else having way too much hope.

My disability review is in December, if I were to pretend it started tomorrow I can tell you one thing: I am no more or less disabled than I was when I was approved in the first place. The ONLY real difference is how my mindset has changed.

The only real difference is how my mindset has changed.

I am not able to go back to work tomorrow. I am not able to sit through a week of training or onboarding. I am not able to register for classes starting in the fall.

I am not able to take on commitments that may cost me money and negatively impact my health.

Have I made googly eyes at the upcoming Jason Aldean concert? Hell yeah. Have I gone back and forth for weeks now on buying a plane ticket to be up in Chicago for the Packers vs. Bears opener of football season? Most definitely. Have I optimistically considered other games I could fly up to? Of course.

But, as much as so many of you may hate to hear it – I can’t.

People take an issue with the idea of can’t. So not only can’t I do those things, I won’t.

This lifestyle program has really been great for me, and has contributed to huge strides that may have taken a bit longer for me to get to on my own.

But my expectations for the program haven’t been the same as everyone else’s. My goal has been the same goal echoed by the program, and that is: to create a lifestyle that is best suited for the needs of my brain and body. It isn’t a cure, because the largest hope could be only that of remission.

But that goal has been lost on some. Which is odd, because I am absolutely creating a lifestyle that is best suited for me, but the promise of that lifestyle meaning disability goes away can’t be a certainty.

There is too much hope being thrown at me, that it is becoming detrimental.

Whether it comes from friends, family, coaches, or some random astrology account on twitter, it seems that what’s next is going to be the big change I’ve been working towards.

That all the work I’ve been putting in is going to come to fruition next. It’s the next thing. And not a single week goes by where I don’t continue to put in work, challenge myself and my beliefs, while making changes that will best serve me.

But it’s always happening next.

And being told something is happening next when next becomes an apartment full of cigarette smoke, a tight budget because disability payments come on the fourth Wednesday and that leaves 5 weeks instead of 4 to make the money stretch… those next’s are just piling up into disappointment.

Next isn’t going to be defined by anyone else.

I get to define what is next, and freeing myself of “disability” isn’t something that is close.

Next is not rescheduling plans the first time.

Next is understanding portion sizes and how long the food I cook realistically will last.

Next is having some food item always prepared and ready to go.

Next is finding the balance where I’m not grocery shopping, meal planning/prepping, cooking, and cleaning in the same day – hell same two days.

Next is rededicating myself to my writing – whether it’s migraine focused pieces, life focused pieces, or simply continuing the work on my book.

Next is allowing myself to be open to creating art and learning what works best for me in terms of marketing and selling it.

Next is making the perfect birthday present for my best friend.

And maybe, when I get through that list I can expand a bit and maybe find more comfort sitting in a quiet coffee shop or going out to a restaurant.

Maybe then, I’ll have created another new baseline and maybe THAT baseline will hold the considerations of working and participating in substantially gainful activity that allows me to support myself without hindering my health.

But that’s then, not now and not next.

A lifestyle isn’t created overnight. Heck, it isn’t created in six months. It is created every single day, by making the decision to keep creating it and fine tuning it, and there is no date as to when it ends.

People project the hope they have for people, even as unrealistic as it is. And when the person doesn’t reciprocate the same hope and timeline it’s met with the idea that we enjoy being in the space we’re in. We’re comfortable with our pain and you think we just allow life to happen to us.

I promise you, no one is comfortable with this pain.

I am not comfortable with this pain.

But I am comfortable deciding my pace, even if the slower pace isn’t comfortable for me.

A.

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