I am not my illness, but I could go there so easily...

“It would be so easy to sink into my illness and hide.”

When my Psychiatrist asked me how I knew when my depression level was high and asked me if I ever had thoughts of suicide and self-harm, that was my answer. I know what depression is. I’ve had bouts of it here and there, mostly in response to stressful situations. It shouldn’t have surprised me that for most MS patients, depression is a symptom. Not only is it depressing to have an incurable disease that many people don’t understand, but it is a disease that causes damage to the brain. Yet I was surprised how real it was. 

Sclerosis=scars; Multiple=many

In my Brain and Spinal Column

(Just take a moment to process what that means and could potentially mean over time. No, I can't just stop thinking about it and just get over it.)

I really don’t know how to be sick, to tell you the truth. I’m ambitious. I have goals. I’m a runner. I’m a business owner. I have political aspirations (you have NO idea how big…well some of you do, don't you? 😀). I want to be supermom. I want to play with my kids. I want to have a financially stable home.  (Yes I have my GoFundMe up because we're not out of the woods yet. I'll be shutting it down soon though.) I want a clean, organized house. I don’t want to rely on others to do it for me. I hate the fact that my working fewer hours at a job that is very physical has put financial stress on my family. I don’t like asking others to take care of me no matter how desperately I might need that. Asking people to do the things I used to do just sucks.

Having to remind people, having to ask multiple times…kills me by inches. It tells me that I am a burden to those around me. I’m sort of the brains of this operation, as in I keep the schedule, the books, and the duty roster. And I keep getting reminded that I’m not always equipped to do that, not when I’m responsible for keeping all the other plates spinning at this circus too. Not when I physically refuse to stop because my surroundings will be depressing otherwise, am under a tremendous amount of stress while I try to compensate, and I then begin to have cognitive issues as a result.

I’m in a hell of my own design.

and

Just because there’s a smile on my face doesn’t mean I’m not struggling.

I didn’t raise my younger kids to “pitch in” as much as I should have. And teaching them what is expected makes every task more exhausting in some ways. I want people to know that I have a very loving family who helps me whenever I ask. And we’re working together to find a system that will make all the above easier. It’s just that getting such a thing together takes time, planning and growing pains. Success doesn’t come without effort. And sometimes I feel like my energy is wasted on keeping track of all the plates even when someone offers to take over a couple of spins here and there.  Because the moment I take my eyes off them, plates start to fall and it's more work to get them started than if I’d just kept them going. Sometimes the loud crash as it happens sends me into a fit of giggles. Come on, the human condition is funny when it comes to how imperfect we are. 

The truth is, I feel like a failure.

For the most part, I can see the humor in it because my frustration with myself and the situation is greater than my frustration with anyone around me. However, humor takes energy too and sometimes the struggle threatens to overwhelm me. It really isn't about them, it's about me and what I was once capable of on my own compared to now. 

Let me be perfectly clear: No, I don't want to die. 

Life is hard but I do have a life worth living. However, if I said I didn't struggle with the temptation to give up on a daily basis, I'd be lying. Because it would be so easy to sink into my illness and hide. 

And here are the reasons why I don't. 

More than just a diagnosis

I get all mad at people who don’t use the resources at hand when it comes to taking care of their personal health. Why would someone not want to get better? Why would you deny a course of treatment that could make recovery faster? Did I mention that I'm a big ol' hypocrite?

It’s time to eat my own words. I’m guilty of this myself. I’m just now finishing up with a 3 day IV course of Solu-Medrol in response to an MS flare up. I’ve been diagnosed for a year, and this is not the first time I’ve been offered this option. I’ve taken and finally rejected other drugs that would mitigate symptoms, done PT, done my Copaxone injections and stuck with that until after a year I found that I couldn’t tolerate it so well. I’ll be switching that up as soon as it’s gone through the obstacle course that my health insurance company requires for coverage. I can’t say I totally blame them since they’ll be covering a $26K per year treatment program. I’ll be hitting my personal out of pocket maximum in short order, no doubt since Insurance doesn’t cover everything to do with my MS. But I’m not going to be so behind that I’m drowning this year thanks to the generosity of those who have supported me

But this last year has been a wake-up call. I’ve tried to live my life as if I didn’t have MS, even while clearly I was unable to do that. After three days of IV steroids, which isn’t altogether pleasant on its own, I actually feel better than I have for quite some time. And I’ve been asked twice today, by my husband and my bestie, “Why didn’t you do this sooner?”

That’s a really good question, one that’s not simple to answer. And by the time I’d been asked the second time, I had my drive into the hospital to find my answers. It all boils down to stubbornness. Yes, Tom and Krissy, you’re right. I am stubborn. But I was so with the best of intentions. I year ago I had my diagnosis and I was prepared to move forward from that point.

It took me about a year to figure out that it wasn’t just a diagnosis. This is my life. And I thought that the best way to deal with it was to muscle through. Push past it. I am not my MS. I could overcome it. I would get through it and defy the odds. My life would be as it always was. I would not succumb to this disease and I would be okay. I needed to push forward, and not give myself time to process it beyond the superficial. I thought that if I dwelled on it, it would catch up with me. I was running away from it, and the first time I was forced to stop, I realized I was terrified.

So by allowing  physical therapy, and language pathology, chiropractic care, and the Copaxone, (apart from my visits with a psychologist which I’ve never claimed not to need at various points in my life) I thought I was being proactive. I thought I was doing what I was supposed to do. And by about November I was falling apart with the pace I’d been living my life. Bills were piling up and not wanting to be burden to my family I felt an obligation to keep up that momentum even though I was sacrificing the rest of myself in order to do it.

So why did I feel like I had to do everything the hard way? Because I don’t like to need help doing anything. And admitting I have MS means that I definitely can’t move forward without help.  And that scared the hell out of me. Because it’s more than just a diagnosis. It’s my life. But as it is also my husband and kids’ lives too, I took another step forward, and took the help that I’d been offered. And I’m better for it today.

When Falling Apart is a Luxury

You don’t learn how deeply broken our health care system is until you really need to use it. It is one of the places that points a glaring finger at income disparity in this country. I should know because I can’t afford my own healthcare. The cost of insurance alone that comes out of my husband’s paycheck severely limits our budget. And I get that it covers a lot. It’s better than not having it. But not really when we still can’t afford to live regardless of how much we “save” by having it.

I realized sometime over the winter that we were in an untenable spot because I’m trapped by my health and trapped by my income. My job certainly has a high earning potential. But I’m not in any condition to build my business beyond what it is though I was trying to do just that so that I could compensate for the medical expenses that kept piling up. But that meant having scheduling flexibility of someone who couldn’t afford to lose any business within a given month. But the results are that I’m not able to focus energy on my family the way I’d like to. And I’m not in a position for allowing the proper self-care I need to maintain my quality of life. So, when I had no choice but to ease up a little bit without warning, there were some frightening financial ramifications.

BAM! MS is real. And I can’t work 40 hours per week. I have no choice but to heed my body’s warnings. Because if something were to happen to me and I had to stop working for any period, we have no way of financially weathering it. Being Gen-X I’ve worked since I was 15, as much as I could and have never, ever considered slowing down or stopping for any reason up to this point. I’ve spent the past couple of months feeling like a complete failure. But I couldn’t NOT recognize that we needed help. And since I’ve done my damnedest to cover up the fact that I needed help, I melted down on my bestie over a barrage of texts last week that might very well have seemed like it had come out of left field. “I don’t have the luxury of falling apart.”

She “listened,” like good friends do, to me go on about how people raise money for sick people and their medical bills all the time. But since no one really knew I needed the help at all because I refused to admit that I did, the thought of starting one of those crowd-funding things for myself seemed pretty damn tacky. She offered to do it for me because she knows how stubborn I am. And in the end, I realized that this would be a good lesson learned about being humble. Because I desperately needed to buy myself and my family some time to regain our footing.

I typed up my story, and sat with my finger on the button of the GoFundMe page to make it go live, I hesitated. When I realized that this affected more than just me and that my husband and children were going through this crisis with me, I sucked it up and put it out there, asking for only what I absolutely felt we needed. And when within the first 48 hours we’d hit nearly 30% of our goal, I was overcome with gratitude for those who not only donated so generously but those who supported me with kind words and prayers as well as those who boosted the signal for me by sharing. I wanted to thank all of you for giving me the luxury of falling apart, just for a little while because you were there to catch me.