MS, summer, and the ability to work

Texas summer is full-on upon me again. I had a lot of hope that finally getting on a disease-modifying drug for my MS would mean that I could get through the summer without reacting so badly to the heat.

But nope, it appears that it’s having the exact same effect on me as last year. I need naps nearly every day. My total number of usable hours in the day is down to six, maybe 8? If I get a nap, I can extend my usable hours to as much as 12, but they’re not exactly all productive.

I’m immensely frustrated, as both an ambitious person by nature and a perfectionist, to be so limited.

I know, the things I’ve been learning in the work I’ve done on myself tell me to go easier on myself. To just do whatever I can and to not feel guilty about what goes undone. But that’s easier said than done.

I had a lot of freelance work the past few months and it recently got to the point where it seems to be slowing down a bit. On the one hand, I feel like I should try harder to get more work. My husband now has a car payment and we have cancer bills to pay off.

But on the other hand, I’m also like, thank God the work is slowing down. All I want to do is sleep. Even when I’m awake, I don’t have the physical or mental energy to do anything I want to do. I’ve had the supplies to make a batch of soap I think even before my husband’s cancer diagnosis and still haven’t done it. I wanted to make some cupcakes yesterday but was too tired.

Before the summer weather hit, I could physically handle 3-4 hours of being out of the house, as long as I had breaks to sit down and was indoors. Today, I went to the grocery store and to drop off Father’s Day cards in the mail, and I spent about 10 minutes trying to clean up my bedroom. And that was IT. I was completely tapped out for the rest of the day.

I still sometimes think I should go to grad school. Or write at least one book. But any time I start thinking about pursuing my ambitions again, I’m reminded of my physical limitations. And I don’t actually know what my illness will let me do.

I know that once it gets to be late September or maybe October, I can go back to having more of a life again. Of not having to stick so close to home and limit my outings so much.

But how can I find something that makes me feel productive and useful during these summer months, when my capabilities are so diminished? I feel like such a slug to be doing so little and spend so much time napping.

I know I questioned a lot whether I really needed disability in the winter. But now I’m absolutely sure that I do and I’m grateful to have it.

Brené Brown and getting through cancer with gratitude

Even though I’m a big fan of Brené Brown and have read several of her books, I hadn’t gotten around to watching her recent Netflix special until last night.

I guess it’s part of that commitment to self-care that I wrote about last time: I did a couple hours of work, then let myself watch something for enjoyment.

She made a lot of great points that I’ll likely use as topics for other posts, but right now I want to focus on one: the concept of “foreboding joy” and how gratitude is the antidote.

Foreboding joy is the concept of being afraid to experience true joy because you fear that something could take it away. I know I have been guilty of this before–and something bad did indeed happen.

I was so excited but also scared about moving back to Texas by myself five years ago with the hopes of bringing my family down here. Someone who was a hater disguised as a friend said I was awful and horrible to pursue being happy and said I didn’t deserve it. (Brené Brown had a lot to say about haters in the special, too, but that’s for another time.)

From that point on, even as I was successful in my efforts to move my family down here, I was terrified that something bad would happen to someone in my family. I actually believed that the laws of the universe would make me pay for my great joy with a tragedy, like some sort of twisted karmic retribution.

And then three months after arriving here, my middle son got hit by a car and broke multiple bones. One of the best events of my life was followed shortly thereafter with one of the worst events of my life.

But somewhere in the years since then, I’ve embraced gratitude more fully as a way of life. From being grateful for the house I live in and being current on my bills to little daily things like forehead kisses from my husband and the way he calls me his “little bird”, I have trained myself to constantly think of things every day to be grateful for.

I think that’s one reason why I don’t let my multiple sclerosis get me down more than it does, even if I’m in pain a lot of the time and that limits my activities. I see a lot of people online who are very bitter about their MS and I can honestly say I don’t relate. I miss having the energy to do more and I really hate that I can’t pursue my grad school dreams, but that’s not the same as being miserable every day about my illness.

I’m grateful that I got disability and can sleep when I need to. Many people with MS are worse off than I am and don’t have that option.

Brené Brown also talks about how truly loving someone means being vulnerable. That opens you up to the fear that you could lose someone you love. Not everybody understands you when you’re expressing vulnerability and some will use it against you. Those aren’t the people you want in your life, but it can take a lot of strength to prioritize yourself enough to let them go .

Because I’m constantly working on both being more vulnerable and on feeling more gratitude, I think that’s why my husband’s cancer diagnosis is something I am handling okay so far. The vulnerability aspect means I’m aware that I could lose him.

But guess what? Whether I am more vulnerable or not doesn’t change the outcome of his cancer. If it’s his time to go (please God, no) I can’t change that by being more scared. And if it’s not his time to go, then being vulnerable and open just makes us closer with the time we do have.

However, because I’m also feeling more gratitude and that’s the antidote to the “foreboding joy” concept, I can honestly say I no longer feel afraid to feel joy. I don’t think bad things are lurking around the corner.

I actually am sure that there are currently unknown bad things lurking around the corner because that’s how life works. But there’s a lot of joy around the corner, too. It’s all about where I place my focus, and I want my focus to be on joy and gratitude and the intimacy that comes from being vulnerable.

In so many ways, I’m so much less afraid in general than I was even five years ago. And yet in that time, some admittedly terrible things have happened–my husband’s cancer diagnosis probably being the worst. Yes, there’s a lot to fear. But there’s also a lot to celebrate even now.

I choose to be grateful and vulnerable even if it means I could experience loss and pain. As Brené Brown says, when you close yourself off to being vulnerable, you also close yourself off to true joy and intimacy. It’s a trade that I make with my eyes wide open.

Balance and self-care

As we come to terms with my husband’s cancer, and to a lesser degree, my disability for my progressive illness, one thing has become painfully clear: my husband and I both suck at self-care. Our entire lifestyle was centered around poor self-care.

We each failed to find balance in our own ways, though we were both prone to overwork. One thing my middle child says often is that he learned from us what not to do, because neither my husband nor I have been really good at just sitting still and taking time for leisure. My son would rather have a low-paying job and more time for himself than pursue a high-pressure career.

On the one hand, his view of our lifestyle as a warning also means he is the least concerned with success out of his siblings. And while he’s really stepped up with helping the household and never missed a day of work when he had a seasonal job last fall, he probably has the weakest work ethic of all our kids. But he’s also the most relaxed.

It’s definitely one of those messages you don’t realize you’re sending until you see the results of it, but it’s now pretty clear to all of us. Working hard is important, absolutely. But failure to seek balance is also not only a bad thing, it might be actually detrimental to your health.

Does that mean I blame overwork and inadequate self-care for my MS or for my husband’s cancer? No, of course not. I’ve had MS symptoms for 18 years (even though I only got diagnosed 6 years ago) and my husband has a long family history of cancer.

At the same time, I think our lack of self-care and balance was so extreme that it was like tossing a match in a very dry forest.

It wasn’t that we had bad habits like smoking (which we did, but gave up years ago) or heavy drinking. No, our issue was the same that many people have: the glorification of being busy.

We’d stay up way too late, not prioritizing sleep. My husband used to frequently say, “I’ll sleep when I’m dead,” which now takes on a much more ominous tone. I’ve known very few people who push themselves quite as hard as he did. It was how he was raised and he took his responsibilities to me and the kids very seriously, so taking care of himself was way down on the priority list.

While my requirement for more sleep than I wanted to get was one of the most obvious symptoms of my MS, I still tried to push beyond it for years. I had bad habits (particularly of not getting enough sleep) that were harming me and I had to give them up. It hasn’t been easy.

I also had been that way for years. Even when I was 16, I had a full-time nanny job in the summer and worked part-time at a restaurant. I didn’t see anything wrong with that and my parents endorsed it, even though I was working 60-70 hours a week.

I still don’t know how I managed to get through even two months of a full-time job last year because I was constantly extremely sleep-deprived. I was still freelancing on the side, too, so I’d come home from work exhausted, take a nap, then write articles.

Right before my husband’s cancer diagnosis, I was still thinking I could be a full-time grad student and part-time freelance writer, despite not having anywhere near that many usable hours in a day anymore. I was still ignoring my limitations and thinking I could push myself harder.

And yet, even now, I still look at the people I know who claim they function great on four hours’ sleep a night with admiration and awe, rarely stopping to think that they might be full of shit. But it’s hard to break that decades-long habit of shortchanging myself.

Look at our culture, at how we are likely to brag about how little sleep we got, how much coffee we’re consuming, how few days we took off, how little we’re taking care of ourselves. It’s almost like a very twisted competition we voluntarily signed up for, in which rest means you lose.

When was the last time you heard a conversation where people were talking about how well they take care of themselves? I know that in my workplace experiences in recent years, people bragged about how little they slept, how much they worked, how much alcohol they drank.

Cancer has made rest a necessary part of our lives now. My husband’s in bed at a good time every night and naps whenever he needs it. I nap whenever I need it, too, though I still often resent needing to do it.

We’re learning to change our default habits. Now it’s about saying that getting enough sleep just isn’t optional anymore. For me, it’s that a very hot summer means I need more sleep to counteract the effects. It’s about saying no to that less healthy but more convenient dinner and opting for something with more vegetables. It’s about saying that sorry, two hours of shopping is our physical limit. It’s about making the kids pitch in with housework a bit more instead of doing it all by ourselves as a default.

Sometimes it’s even about just sitting and reading a book. Not because we’re taking a class or trying to study for some certification, but just because it’s okay to have a little bit of leisure time.

It’s a hard change to make and we’re nowhere near where we need to be yet. But finding some balance is no longer optional. I’m starting to think it might literally be a matter of life or death.

Anxiety, religion, and finding calm

I was reading through some of my old blog entries and noticed that it’s now been almost six months or so since I stopped forcing the issue of religion at all and accepted that it’s just not for me.

The part I realized that surprised me: I found the freedom from anxiety and peace that I was always seeking from religion–but I found it within myself.

Perhaps ironically, it was getting a very Catholic tattoo of the Miraculous Medal that was the turning point. It led to me finally giving up on the tortured struggle I’d been putting myself through for nine years.

When I gave myself permission to let go of trying so hard to believe something that I mostly didn’t that I shifted my focus to developing my own sense of inner peace. I do have a pretty strong sense of my true self and the reason for the years-long religious struggle was because I was fighting against what I really believed.

I don’t have anything against people who choose to believe. I think that it’s really childish to look down on people just because they’re Christian. But as much as I wish I could be a devout believer of an organized religion, I’m just not–that’s not the way I’m wired. I still have a few Catholic practices and sacramentals around my home because that’s a largely cultural thing that brings me some comfort.

But I had a really interesting revelation yesterday. I realized that even though I have moments when I’m scared of my husband’s cancer diagnosis, I am also calm about it.

That doesn’t mean that I never acknowledge the potential gravity of the situation. That doesn’t mean I never cry about it. I don’t even know that I can adequately explain the difference, other than to say that my reaction is free of the anxiety and panic it would have caused in me a year or two ago.

I don’t think it’s because of the medication I’m taking, although I’m sure that doesn’t hurt. In truth, my medication helps my depression. But I had to retrain my brain to fix my anxiety.

Somewhere along the way, I learned that my anxiety was almost always an over-reaction to things that hadn’t happened yet. I let my thoughts of “what if” run away from me, which kept me in an almost perpetual state of panic. Even if I wasn’t in panic mode, it took almost nothing to get me there.

My oldest, who also deals with anxiety and is seeing a therapist (about which I’m SO proud), often talked with me about our mutual tendencies toward what we called catastrophizing. We both had habits — which I’m sure he learned from me, in addition to sharing a genetic component — of assessing a situation and assuming the worst possible outcome, despite a lack of evidence.

We started to gently point it out to each other when the other was doing it. Like most cognitive distortions, I’ve learned that it’s often a habit that can be unlearned with some consistent effort. He has also made a lot of progress.

How you react to anxiety–whether your own or others’–either amplifies it or defuses it. If I overreacted to his anxiety (which I sometimes did in a misguided effort to validate him), I actually gave him more reason to believe that anxiety was a justified reaction.

Being mostly free of the anxiety that was once almost crippling is giving me the sense of peace within myself that I always wanted to find in religion.

But because I’ve also started to honor my true self, I’m no longer bothered by other people’s practice of religion. My husband finds Catholicism very helpful and comforting to him, especially as he’s going through chemo and cancer. I’m fully supportive of him doing what brings him peace. Sometimes I wish it also brought me the same peace, but I no longer beat myself up over the fact that it doesn’t.

I’m grateful that I started doing this work on myself. Really, it started more than a year ago, when I realized I was better off with a much smaller circle so I could focus on healing than to be around people who were actively discouraging it. I’ve read elsewhere that when you want to work on healing yourself, you won’t be able to bring everybody with you. But I at least hope that someday they too will do the same work.

The cool thing is that as you grow, your feeling of peace gets stronger. You discover that you are indeed strong enough to handle things like being permanently disabled with a progressive illness and a husband with cancer. Because your peace is inside you, it never leaves.

All those corny things you read about becoming your own best friend are true. It changes all your closest relationships, too: you just deeply appreciate all of them in a way you couldn’t before. You no longer feel desperate and needy but more like they complement you. If I’ve made this much progress in less than a year, I’m excited to see how things will change with more time. How I’ll react if true disasters do happen.

But so far, my husband’s cancer is the biggest test of my anxiety-management skills. And other than a few scary moments, I really do feel calm and at peace.

The year of choices being taken away

I have a feeling that I’m going to be different when I come through this year. Wiser but probably sadder. Because this is the year of choices being taken away, the year in which the old normal is blown to bits and we figure out how to create something new from its ashes.

Despite the fact that this may sound a bit melodramatic, it’s really not. I don’t feel sorry for myself, not really. Instead, it’s more like the largest tornado I ever saw was on a path toward my house. It’s not like you can stop it from coming or like it picked you in particular.

There’s no time to lament how things could have been different because the storm is already here either way. Now all I can do is hunker down, wait for the storm to blow through, and see how much damage it does. When it’s all over, I’ll start sifting through the rubble and see what’s left so I can rebuild.

It would be a lie to say I welcome this. I’d greatly prefer that my husband didn’t have cancer and that I didn’t have MS. But if it had to affect anyone, I suppose there’s no reason to think my husband and I should be exempt. He saw a young woman in her 20s with a toddler waiting at the oncologist yesterday, presumably there for a similar reason as he was. Now that’s sobering.

When you realize that this can happen to anyone–and in fact, does happen to people in arguably worse situations than yours–it’s harder to take it personally.

I’ve started to think that maybe when we make it through this year, I’m going to have a hell of a story to tell. Maybe that will be my book, about how we got through the year when my husband was diagnosed with stage 3 cancer and I was declared officially disabled with multiple sclerosis.

It’s not necessarily the story I ever wanted to write. But maybe it’s what I’m supposed to write. I think I will find hope and meaning in all this, mixed in with the fear and pain.

On a somewhat related note, I had a sobering realization yesterday. I decided to put grad school on hold for another year, figuring I wouldn’t be able to devote attention to it while caring for my husband and household while he fights cancer.

But then the thought occurred to me: can I really go back to grad school at all, ever? Is that even realistic?

I know, I’ve expressed similar thoughts here before. But given my determination to get through grad school because it was something I really wanted to do, I don’t think I ever believed that simply not being capable was even a possibility that crossed my mind.

At one point, I do believe I was at least quasi-intelligent. I always had hideous math skills so I was hardly the next Stephen Hawking, but I do think I used to have a pretty sharp mind. I was pretty good at learning and making analytical connections.

In some ways, I still have a sharp mind. The neuropsychologist’s exam proved that I still have amazing verbal skills. But I don’t have the follow-through or memory anymore like I once did. I don’t have the physical or mental stamina to sustain use of my verbal skills for any great length of time.

I’m only now really starting to come to terms with what it means that I got approved for disability. I didn’t even have to go to court to prove it. I am legitimately sick. Like, for real–my attorney told me that it’s actually not that easy to get disability in my district, statistically speaking, and that I should prepare for a long fight.

The fact that I didn’t have a long fight only seems to confirm what I already read in my neurologist’s notes and radiologist’s reports. Of course, my failed attempt to work last year was likely also on my side. Apparently my brain is (as one might say) actually pretty fucked up.

I knew I was in denial–to be honest, I’ve been fighting that since my initial diagnosis six years ago. But I don’t think I understood the extent of my denial.

My whole grad school plan was more of that denial. I thought that because the disease-modifying drugs were making my brain a little clearer, I could go back to being the hard-driven, academically achieving self I used to be.

I’m just now getting a glimpse that those days are really gone, no matter how much I don’t want them to be. I know I can get into grad school, but I also feel pretty sure that it would only be a matter of time until I crashed and burned. I mean, I only made it two months at a full-time job last year. Wanting to be capable does not mean I actually am.

It’s an understatement to say that I don’t like that. I’ve made a ton of progress in overcoming my control-freak tendencies over the years, but I still bristle strongly at the idea that there’s anything I can’t do. Those are fighting words for me. Tell me I can’t and I’ll do it just to prove you wrong.

Yesterday was the first time it really occurred to me, for real, that my future may be out of my hands. I may want to be the most inspirational, odds-beatingest disabled person ever, one who achieves more than most non-disabled person do. But just because that’s who I want to be doesn’t mean it’s who I can be.

That’s super hard for me. I’ve worked so hard to stop feeling sorry for myself in general. I’ve stopped blaming others and feel like I alone have control over my fate.

But multiple sclerosis is no respecter of what you want. Neither is colon cancer. It wouldn’t be called “fate” if you could control it.

That in itself is complicated. A lot of people have this whole “triumph of the human spirit” concept in which they expect people to overcome tremendous odds stacked against them. I wanted that to be me. Anything that tried to get in my way would just be an excuse I’d defeat.

But just like you can’t run a marathon with a broken leg, you can’t make your brain work right when you have multiple sclerosis. You can’t get rid of cancer if you just concentrate really hard.

Whether you believe in fate or God’s plan or that both of the above are bullshit, it remains a fact that no one can control life. We all work with what we have within the circumstances we’re given. Some people have much harder circumstances with bigger obstacles to overcome than we do.

Who am I to say how much we should be able to accomplish given our circumstances? Maybe being alive, getting up another day to fight again, is the best we can do. We’re getting into big-time “meaning of life” questions now. Maybe there is no meaning of life. Or maybe it’s just to find a sliver of happiness in whatever circumstances we face.

I never thought these would be my circumstances. I’m still honestly in shock about and trying to process the fact that my husband has cancer, let alone the fact that I am officially really disabled.

All I can do is sit through this, try to take things as they come, find some peace and joy in the present moment. Because I’m learning that control over the future is an illusion.

If you’re lucky, nothing bad ever happens to you. But it might. Then you get to level up to the challenge round of life and you have whole new battles to fight. Maybe leveling up is a sign that you can handle it and will become stronger. Or maybe all that’s bullshit, too. I guess we’ll find out.

Tales of the MRI

I had the MRI of my brain today. It was the first time I got kinda panicky with an MRI. I was already on the table in position, with earplugs in and headphones over that, when the tech couldn’t find my veins to start an IV for the contrast.

The tech poked me twice and missed my vein both times. She called in a colleague and he put it in my hand. I really hate that. I can get tattoos no problem but veins I am just not okay with.

But anyway. When she stuck me the second time, I started hyperventilating and asked her to take off the headphones because I couldn’t breathe well. First time I’ve ever freaked out like that. But I know lots of people get claustrophobic in MRI machines, so that’s ultimately no big deal.

It’s not freaky at all to have that cage over your head and be slid into a tube where you’ll hear super loud noises for a half-hour, no not at all…

So when I was done with the MRI, the tech knocked on the door of the locker room where I was putting all my jewelry back on. She asked if I was having symptoms now and looked very concerned.

I told her I felt like I’d been in one long relapse since June and she asked what my specific symptoms were. I said they were mostly cognitive: frequent panic and disorientation, short-term memory loss and nearly no working memory.

She asked when I was seeing the neurologist again and I said not until April. She said I might need to get in sooner.

Yeah, that rattled me a lot. No MRI technician has ever reacted that way before. Maybe she was new and just hadn’t seen an MRI like mine before — her trouble with the IV points to that theory.

The radiologist won’t finish his interpretations until next Monday. He’ll send a copy to my neurologist but I can (and will) go pick up a copy of the same report he sends to the neurologist for myself.

But they gave me a disc of the images today and just comparing it to my last MRI in August 2015, it’s much worse. My last MRI was about 18 months ago, when I was hospitalized with my worst relapse ever.

That MRI looked virtually unchanged from my first one that diagnosed me with MS in 2013. I honestly expected the same this time.

I’ve studied MRIs enough that while I definitely don’t know as much as a trained person who works in radiology, I know far more than the average layperson.

Hell, even my husband could tell the difference. I had a disc from a 2015 MRI here and contrasted it to the one today and the differences were super obvious that I was much worse now.

It didn’t look anything like my old MRIs at all, almost like not even the same brain. All the MRIs between 2013-2017 looked similar. Not this one.

The parts of my brain that appear to be damaged also have to do with left-right confusion and spatial awareness. That correlates with what the neuropsych found the other day during my exam, too. One of the tests he did in had me blindfolded and required me to put blocks of various shapes into corresponding openings. I had to identify the shapes and feel on the board for one that matched. It was really hard for me.

I did it first with my dominant right hand, then with my left, then I could use both hands. My right hand was slower than my left, which is the opposite of what they expect. And I actually did worse and slower when I could use both hands, which is also the opposite of what they normally see.

I don’t know if any of this will help my disability case at all. But it’s definitely vindicating to have both an 8-hour neuropsych evaluation and an MRI say roughly the same thing.

I knew I had gotten a lot worse. I knew it was weird and unusual that I just couldn’t seem to recover. And now I have lots of proof that it wasn’t all in my imagination.

That doesn’t make me any less depressed, but at least it’s sort of an answer and that helps a bit.

Mind keeps on slipping

I’m kind of riffing on an old Steve Miller Band song I didn’t particularly like, that says something like “time keeps on slipping into the future.”

Only it’s my mind that’s slipping, and what it’s doing is actually terrifying. I really wish I wasn’t without medical insurance because I should be getting myself into a neurologist and seeing if they can find out what’s happening to me. Of course, there are other variables included, like whether I could afford the recommended treatments, which I couldn’t even when I did have insurance. This is not a good disease to have with crappy insurance and limited income.

I’ve noticed that ever since I had my short-lived full-time job earlier this year, my brain doesn’t quickly bounce back anymore. I’ve had to cut jobs, responsibilities, even people completely out of my life because they overwhelmed what my brain could process. But I fear that it’s getting worse.

Lately, I’ve been trying to watch a lot of anime TV shows with my husband, shows that he and my sons like and want me to like. And what I’ve noticed is that so far, with three out of three that he’s introduced me to, I can’t follow them at all. By the end of an episode, I can only tell you a couple details about what happened.

On the one hand, there are a couple factors at play that aren’t necessarily a sign that my brain is getting worse. One is that the shows are fairly complicated; they often jump in at the middle and then reveal more about the story or characters through flashbacks. But during that time, I’m wondering who these people are and I can’t keep track of many of them.

Another is that all of them have extensive rapid fighting or combat sequences. For one thing, that’s a genre I’ve never really gotten into or enjoyed. I’ve long had the unforgivably uncool trait of not being that interested in Star Wars because so much of the movies are prolonged battle sequences. I’ve never had an easy time following battles or frankly being interested enough in them. When my brain was at 100 percent, I still found battle scenes pretty uninteresting to watch.

But I can’t blame it all on genre, how the characters are introduced, or the order in which the story is told. To be completely honest, the first time I remember feeling totally lost and unable to follow a show was when my husband was watching Game of Thrones in its first seasons. I was incredibly overwhelmed by the number of characters in that show and couldn’t keep them straight.

That would have been back in about 2011, two years before I was diagnosed with MS. At the time, I thought it was just a complicated and confusing show. But now I’m wondering if my extensive confusion in relation to that show was actually a sign that my brain was already having trouble.

Keeping track of a lot of complicated storylines or being introduced to multiple characters at once requires short-term or working memory, both of which I’ve been diagnosed as having problems with. If I only see one character for five minutes and then not again until several episodes later, I may not remember them. Or the details I do recall might be really vague.

Another possibility my husband mentioned is that the anime shows could be producing seizure-type reactions in my brain. I know there was a highly publicized thing with Pokémon producing that reaction in some Japanese viewers a few years ago so it was never shown in the U.S.

Seizures aren’t necessarily common in MS; I’ve looked it up. But they can happen and my neurologist has diagnosed me with a type of seizures called myoclonic. These myoclonic seizures are just spontaneous muscle jerks, usually affecting my legs or my arms. These types of seizures are not necessarily associated with epilepsy. However, people who have myoclonic seizures are more likely to have other additional types of seizures as well.

From what I’ve researched, though, I could be having complex partial seizures. Apparently, situations of high anxiety can precede complex partial seizures. Interestingly, neck pain is associated with complex partial seizures as well, and I frequently deal with that too. I thought it was just because I have degenerated discs in my neck, but what if all along I was also having undiagnosed seizures?

Obviously, I’d need to see a neurologist to see if that diagnosis fits and get on anticonvulsant medication. (I’m already taking a medication to stop the myoclonic seizures in my legs, but it’s a sub therapeutic dose for more serious seizures.)

Because I know I have extensive white matter loss, that also puts me at high risk of having strokes. I don’t know if the reactions are mini strokes or if my brain is having something like an absence seizure. When my friend would upset me, I would have very extreme shaking all over my entire body, which seemed almost like a typical seizure.

But when I’m watching a show that’s too hard to follow — especially if it has flashing lights or really fast combat motions — my brain shuts down. I can’t follow anything at all and it’s almost like I’m not even there. My brain just checks out for a bit. But because I can tell that it’s happening and I don’t know why, it also causes a very panicked reaction. I feel very disoriented and even scared. My heart starts to beat faster and it takes several minutes for my brain and body to return to normal.

All of this is why I’m scared about my brain in general, because it doesn’t fit with anything else I’ve read about MS. I know MS is a very weird disease and I’ve read in many places that no two cases of MS are exactly the same.

I do have the very typical MS symptoms of getting extremely tired easily, having leg spasms, being in pain all over, occasional blurred vision, poor balance, vertigo. In the past couple months, I have started getting some new symptoms that scare me a lot like having difficulty eating certain foods and inhaling or choking on some things (such as corn kernels or ice.) I probably seriously need medical help, including physical and occupational therapy, so I can minimize the choking and aspiration risks.

But the brain thing is weird. And it has seemed to come on so suddenly in the past several months that it really scares me. Doctors aren’t totally sure about my diagnosis; they call it MS because I have both lesions on my brain and the telltale signs in my spinal fluid.

Yet the MRI of my brain does not look like any MRI of a person with MS that I’ve ever seen. It’s either some other brain disease that they can’t diagnose or extremely advanced MS. Both of the last two neurologists I saw here went with the latter, describing me as having “aggressive MS.”

But that too is confusing and unclear: the sign of stable MS is no new lesions, and I haven’t had any new lesions since my first MRI that diagnosed me in 2013. It doesn’t seem like it can be called aggressive MS when, on the MRI, it’s barely changing at all.

Still, even though my MRI looks nearly unchanged, my symptoms continue to get worse. And nobody knows what to do about that (except possibly the experimental IVIG treatment I couldn’t afford to get.) Since the disease-modifying drugs are deemed successful if your MRI doesn’t show new lesions, I’m already good by that definition.

And yet, I’m actually not good, no matter what the MRI says.

Granted, I haven’t had an MRI since I was hospitalized about 16 months ago. If I had decent health insurance and didn’t have to pay for an MRI out of pocket, I probably need one now to find out what’s happening to me.

I have no insurance as of Monday, so unless I go into the ER over the weekend and am given one, I’ll have no way of knowing what’s happening to my brain for at least several more months. That feels like a recklessly kamikaze approach considering what I’m dealing with.

But since I can’t afford the recommended treatments anyway, I am not sure it’s too useful to even know what’s happening.

Still, I feel like I’m getting worse so fast. What if it’s a brain tumor or something similarly fatal?

On the other hand, what if it’s just normal short-term memory loss associated with both MS and depression, and I just can’t handle complicated shows or people who stress me out? Maybe what I’m experiencing is completely normal given my conditions and I just need to accept them and adapt. Cognitive changes are a normal thing in MS, but this feels extreme. I need relatively simple things, un-busy places, quiet, few distractions. Any more than that and I get quickly overloaded.

I just wish I could stop feeling so afraid of the unknown and how quickly it feels like I’m getting worse.

Denied

I got my decision back on my disability claim and I was denied. I don’t know why yet because I haven’t gotten the letter; I just found the info on the social security website.

On the one hand, I’ve been prepared all along for a long fight, since that’s the result in the vast majority of cases. On the other hand, I thought that the findings of the doctor they sent me to would carry a lot of weight, since she felt I was a clear-cut candidate for disability and it was her job to weed out the fakers.

I’m sure that once again, my previous doctors failed to submit my results. For one thing, they did that last time I applied a couple years ago (an application I cancelled because back then I still really thought I could work.) And this time, I requested a copy of my records for myself from the same neurologist and never got them, so I doubt they sent them to social security either.

I also requested to have my records from my doctor in Michigan sent to my current primary doctor, and my Michigan doctor did not respond to the faxed request. I doubt they would have sent them to social security either. I don’t know why I have so much trouble getting copies of my own medical records, but it’s really troubling to me.

I looked up some stuff online after finding out about the denial. One advocacy group that represents people pursuing disability had a questionnaire asking questions about my particular case, and based on the results, it said they wouldn’t represent me.

Their reasoning was because I had not seen enough specialists recently enough. Since depression is one of the things I claimed, I also should have been seeing psychiatrists and therapists on a regular basis. But how do you do that when your insurance is terrible and you don’t have a couple hundred extra dollars every month to spend on seeing doctors?

There’s also the fact that I don’t see what good it will do to see more doctors if the ones I do see won’t even release my records. I have definitive advanced MS, confirmed by both multiple MRIs and a spinal tap. I’m obviously not making it up. Every neurologist I’ve ever seen has said that based on my MRI, they don’t know how I’m still walking. But I guess if they never send those records to social security, it doesn’t matter if I have proof or not.

It really feels like I’m completely screwed either way. I can’t get medical care without better insurance and more income. But I can’t get better insurance and more income unless I first get the medical care. It’s like a circle. Maybe if I could afford a couple years of good therapy, I might be able to overcome the depression (since it doesn’t respond well to medications.) But as usual, I’m limited at the starting gate by lack of money and access to good medical care.

I used another attorney finder specific to disabilities and entered the details of my case and that also said they didn’t have any attorneys who would work with me.

I did find another disability attorney separately, so I guess I’ll contact them and see what happens. But what if they also say they won’t represent me?

I have to admit that all of this is sending me back into denial again. We need income, period. We have a significant shortfall on just my husband’s income alone. Yet I can’t do the freelance work I used to. I try and my mind just won’t focus. I can’t put words together in the order that I used to. In truth, even the amount of freelance work I have is still significantly less than what I’d get from disability, and I can’t even do that.

I feel like such a loser. The doctor social security sent me to said that my depression and cognitive issues would clearly make me unable to work. But nobody else agrees. And I can’t figure out why working full-time took such a toll on my health that I’m still not recovered from it. Am I making it up just so I can say I can’t work?

Then I start asking myself if I’m really that sick anyway. Maybe if I had some other full-time job that wasn’t like the one I had earlier this summer, it wouldn’t affect my health so much. Maybe I could do customer service work at home instead.

I start to wonder: am I really sick or am I just depressed? And if it’s just depression, why can’t I kick my own ass hard enough to do what needs to be done? If my husband died and I was without his income, would I still have the luxury of not working?

After all, isn’t it a privilege not to work? I want to be working and I feel completely useless because I’m not. I have deeply internalized views of people like my sister, who say that many people on disability are just scamming the system. When I saw her last month, she asked if I really needed disability, since I had almost always worked at home anyway and that was easier. Maybe she’s right.

Actually, what I really want is to go back to grad school. Become a full-time librarian or counselor or even a hospital social worker. I don’t want to work at home anymore; I want to have some place to go. I’m quite depressed about the fact that I don’t, but my desire to regularly leave the house isn’t enough to overcome my depression, either. I feel like I’m circling the drain, like it’s just going to get worse from here, whether I get disability or not. And I don’t know if my brain health is such that I could go back to school or have a full-time job.

When you look back through my earnings history over my working career, I’ve rarely earned much. Certainly not the amount of money you would expect from someone with a bachelors degree. And is that because I’ve had really severe depression since childhood? Or is it just because I’m lazy and on some level don’t want to work?

If I could just motivate myself more, maybe I could work full-time. Plenty of people with MS and depression still work because they don’t have the option not to. I am giving myself the out. Maybe my work ethic just sucks.

In truth, I can do fine with part-time work where I don’t have to be on my feet and can get bathroom breaks whenever I need them. But for the next couple years, I have to be available to drive the kids from school, so most part-time schedules are out until then anyway. And part-time work won’t provide the income we need.

And in the meantime, social security thinks I can work full-time. Maybe I actually can. It’s not a clear enough case for them to give me the benefits. So that is pushing me back really hard into the denial camp. My illness isn’t affecting me that much compared to people in wheelchairs. I don’t have to catheterize myself like many MS patients do.

If I took the only disease-modifying drug the neurologists think might work for me, maybe I could work full-time. Of course, I’d have to be able to afford multiple specialist visits and multiple MRIs each year, which I currently cannot. But maybe the meds would improve my condition so much that I could earn much better money than I ever have and cost wouldn’t be an issue. That’s not how the drugs say they work, but I can’t honestly say I’ve tried everything yet. Maybe disability is giving up too soon.

Maybe I only feel sick because I don’t exercise enough. Maybe both my MS and depression symptoms would be completely manageable if I followed some nutrition and exercise program. The fact that I find both difficult to stick to is just because I don’t have enough willpower, which should be something I can overcome.

I feel like I just need to try harder to pull myself up by my bootstraps, dammit. Then everything would be okay. But I feel like I’ve been pulling myself up by my bootstraps my whole life and those bootstraps are getting weak. I’m just so tired of fighting.

The disability exam

Today was my long-awaited exam by the Social Security examiner. It revealed some things I had never really put together but which now make perfect sense.

Interestingly, it was a mental status evaluation, not a physical one. It was very in-depth and took about an hour and a half (although 20 minutes of that was how long it took me to fill out three pages of answers to their questions because my handwriting has gotten so difficult.)

I was honestly afraid that my problems wouldn’t be apparent enough because I can often appear pretty normal until a person spends enough time with me to get a fuller picture. But the examiner really looked at all aspects of my history.

She determined that I have persistent depressive disorder (which is classified as more constant than major depressive disorder) and generalized anxiety disorder. I already knew I was depressed since I have been since kindergarten and I knew I had generalized anxiety disorder, too.

She also did some tests like saying a series of numbers and asking me to repeat them back in reverse, or telling me three objects and asking how many I could remember 5 minutes later. Based on the results of this, she said I had significant problems with short-term memory.

This doesn’t surprise me at all, since at most of my recent jobs, I’ve annoyed my coworkers by asking them for constant reminders of how we’re supposed to do something.

She said she definitely thought I should be approved for disability and even said that I was “the kind of person the program was made for.” The fact that she thinks I qualify doesn’t guarantee that I will be approved on this round, but it does improve my chances significantly and it means that I will definitely appeal if I’m denied at first.

She did tell me some really interesting things, though. One is that she could tell that I had a baseline of being highly intelligent and that I probably used to be great at the kind of memory questions she was asking (very true.)

She also said that it’s likely that I managed to muddle along with work for all those years despite my severe depression and anxiety because I had coping mechanisms to keep me somewhat functional. When I got sick with MS and the memory loss set in, it just was too much for my compensating mechanisms to be effective anymore.

I think that was the most surprising part, because it recast the narrative I’ve always told myself. I’ve bought the viewpoints of people who said I could achieve more if I just pulled on my bootstraps a little harder. I always blamed myself for not trying hard enough. I called myself a slacker. I thought that the fact that I completed college with honors was proof that my major was just easy and that anyone could do it, but also proof that I was capable of maintaining that level of achievement indefinitely. I always thought it was just an issue of attitude and I’d be more successful if only I could become more positive.

The way the doctor reframed it is that it was really admirable that I was able to manage as well as I did before I got sick, considering my level of impairment even then. She said that my mechanisms to compensate for the mental aspects of my illness had to have been really well-developed so I didn’t completely fall apart.

And suddenly I saw myself a little differently, maybe even a little brave. Instead of beating myself up for what I haven’t been able to do or accusing myself of just making excuses, I can finally admit that I’ve been struggling for a very long time. My whole life, actually. From that perspective, the amount of things I’ve been able to accomplish are really pretty remarkable. It’s like I’ve been trying to climb a mountain with a heavy backpack and I was actually doing somewhat okay, but the cognitive impairment from the MS was the final load that made it too heavy.

I am so lucky that my husband is understanding and patient. He has come a long way in our marriage in grasping what commitment is really about, as have I. But I know that a lot of people with either MS or any kind of recurring mental illness are not as lucky as I am.

After the exam, there is no question anymore. I can’t beat myself up for not trying hard enough (which isn’t to say that I’ll immediately be able to stop, haha.) I can’t say that I’m just lazy. Like my husband said after I told him about it, even if they deny me disability and I have to appeal, this examination proves that I am disabled, with or without the benefit payments.

That’s a hard thing to wrap my head around. I have to figure out what my next steps are now. I have to decide how I will define myself without work. Luckily I’m not very money-oriented, so I’m not too sad that I’ll probably never make a lot of money.

At the same time, I’m going to fight hard not to become one of those “poor me” people who’s solely focused on being disabled. That would be a bleak life and life is hard enough already.

What’s next for me if I’m not always going to have to focus on what my career will be or how I’ll make money? Maybe I will finally be able to rest, to let go of some of my stress. Maybe I’ll just set plan some regular activities for self-discipline and spend the rest of the time enjoying my life and trying to serve others.

I honestly couldn’t have asked for a better outcome from the social security exam, but it definitely surprised me. It completely legitimized my struggles. Maybe now I can legitimize them, too.

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.