Trying to hang on without giving up

Today I finally finished and submitted the lengthy disability questionnaires for social security about how my health has affected both my working ability and overall quality of life.

I have to say it was probably one of the bleakest things I have ever done.

Compared to the last time I applied two years ago (which I canceled before a ruling could be made because I believed I was still well enough to work), both the function and quality of life report this time were so much worse.

That in itself is scary, that I’m so much worse than I was just two years ago. I want to say I’m a fighter, that I won’t let this take me down, but what if I don’t have a choice? People say I’ll be “cured” if I try this strict diet or that other (completely opposite) strict diet and honestly, survival alone is hard enough already. Those kinds of changes seem overwhelming to make even if I could decide which one was right.

I am adamant that I don’t want my illness to define me or become my identity. I would never enumerate my list of various health conditions on all my social media profiles; I think that’s seeking attention and pity more than “raising awareness.”

What good does raising awareness do, anyway? Is there anyone who saw something like “RA sufferer” on someone’s profile and a list of surgeries they’d had and suddenly felt inclined to raise money for a cure? I’m not going to hide my illnesses either because I’m not ashamed. It just doesn’t seem like the most important thing I want people to know about me. I don’t want to be defined by my suffering.

I also absolutely cannot be around other people who frequently complain about their health and encourage me to do the same because it’s too contagious, too bleak. If my health is already like a slowly rising pool of poison water around my ankles, complaining about it whips that pool into a tidal wave that will drown me.

At the same time, filling out those disability forms made me realize in black and white just how limited my world has become. I’m not sure if that’s more due to depression than the MS itself because depression and MS are so strongly linked. My life is mostly just sleeping, doing small things for the kids and whatever housework I’m able, and then trying to distract myself until it’s time to sleep again.

But the ironic thing is that the friendship-ending blowout with my friend actually came about because I canceled plans she created to try to cheer me up.

When you’re depressed, just getting out of bed takes enormous effort some days. The last thing I need is to be yelled at for misunderstanding plans or not being up to them. (Considering that my MS also makes me misunderstand or forget a lot of stuff, the odds that I’m going to forget details or mess up are high, which I also put on my disability forms. Imagine trying to learn a new job when you now have about 10% of a normal person’s capacity to make and recall memories!)

It also makes me just want to hide from everyone when I’m called boring because of my interests. Because of both my illness and my depression, I’m usually sleeping in the morning and it’s hard when people make me feel bad about that. I already feel like enough of a freak for not being into pop culture or current movies or celebrities or anything popular; I’m a nerd and always have been. The last thing I need from a supposed friend is to be told my nerdiness is too boring or uninteresting.

Depression has erased huge parts of my memory and I never really had a youth of going to a lot of concerts or being into pop culture back then either, so I can’t even engage in talk about nostalgia for the past. I feel like I am too weird and out of touch with normal people to even carry on small talk.

The only people who really feel safe to me right now are those in my family I live with, and a few other calm friends I’ve had for years who understand depression but don’t see often. Being depressed means I find it exhausting just to exist sometimes, let alone be around someone who’s always “on” and theatrical and loud.

Nothing wrong with those traits in general. They’re just a lot for me to handle on a good day because I’m introverted and quiet and easily prone to sensory overload. They’re completely overwhelming when I’m depressed, which makes them sound like they’re being broadcast through amplifiers at a rock show.

And though I’ve battled depression off and on for all of my life and it has limited me in countless ways, filing for disability feels like the Big Boss of the fight (to use video game terminology.) It’s so much larger and more powerful than I ever could have imagined. I don’t even know how to defeat it.

I do know that I need gentle, supportive people around me, ones who will take me as I am and love me through this. I can’t take the risk of being attacked when I’m already so vulnerable.

I probably need people who will reach out to me and keep reaching out to me even though I may push them away. But between everyone having busy lives of their own and the fact that I’ve pushed many people away as a result of my depression, I can’t realistically expect anyone to have the time or inclination to let me know I’m worth the effort.

And I get it that not everyone has enough empathy or extra energy to even want to try to handle this, let alone try different ways or more than once. The things that cheer me up aren’t the same things that cheer up most people. I’m probably being a little selfish right now, but this really is the best I can do at the moment.

Things aren’t so bleak that I think my husband and kids are the only ones who love me. But I would rather be limited to just the people who feel safe than go through being attacked again. And I know that ultimately it’s my job to fix myself.

But the depression that came along with filing for disability was massive and unexpected. I try to believe that there’s going to be a better day coming, but right now I have nothing to look forward to. I had so many things I wanted to do with my life that now just aren’t ever going to happen. I once had a pretty formidable intellect and now I can’t remember instructions with more than a couple steps.

I’m just putting one foot in front of the other until hopefully, I’ll reach a point where this hopelessness has passed.

What am I going to do with my life? Will I find enough joy in a spiritual practice and maybe be able to get a part-time job at a library once the kids are grown and don’t need transportation? I guess that’s the hope that I’m clinging to, but that’s still realistically a couple years in the future.

How will I hang on if things continue being this bleak until then? My husband has to work a second job because of me just so we can scrape by, which both leaves me lonelier and puts an unfair burden on him. This is not what I want at all.

What if I’m one of those people who take years to get approved for disability? I feel so useless. There’s nothing much going on in my life. I have very little in the future that excites me. Until I get disability, I will have even less.

But the disability filing and seeing exactly how small and limited my world has gotten just feels like I ran into the biggest roadblock of my life. I barely had enough energy to get through regular life before this. Now trying to go around the roadblock feels so insurmountable that all I can do is sit down and wait to come up with a new strategy to get past it.

Until then, I really feel stuck and useless and pathetic. I feel like my life as I knew it just ended and I can’t seem to come to terms with that yet.

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