For all the pain it’s a goodbye

I took today off from work and slept for 12 hours. That kind of gave me a good insight into the size of my sleep deficit, since sleeping in on just Saturday and Sunday wasn’t enough to catch up from last week.

Getting enough sleep also allowed me to think clearly for the first time in a month, since I started my FT job outside the home.

And what I realized with the help of that clearer thinking is that there’s no way this job is going to work out for me.

I used to be certain that there was no way I’d ever need a wheelchair, would never lose the ability to drive, would never need home health nurses to check on me and keep me safe. But after just a month of working full time, I could see those things as not only being possible but even probable.

Maybe even sooner rather than later, because yesterday I had my husband with me while I was getting groceries and several times I became completely disoriented and lost track of where I was and what I was looking for. It really scared me.

So I’ve decided that since I’ve only been at this job for a month and it has already taken such a toll on me, it’s better to cut my losses now. It will be disappointing for my employer as well, but I think it’s less bad for them if I jump ship early before they grow to depend on me more (or before my disease causes me to make serious mistakes.)

Now that I can recognize in no uncertain terms that this is the change I need to make, I can also admit that the adjustment has been hard for all of us. My husband and I have never gotten into a good routine since I started this job. I’ve felt more distant from him than I have in years. I also feel like I haven’t seen my kids enough. Even my new cat that I adopted in December has been really acting up since I started the job — and on days I’m home and in my office, he sleeps in his cat bed like he used to.

I may hate the financial instability and loneliness that are part of the freelance life, and I have to get way better about saving for my own taxes. But I also have to admit that the freelance life is what’s normal for us. It works for our family. The regular paycheck is literally the only positive thing I’ve gained from the full-time job.

So although I’m not excited to give up those regular paychecks, I am looking forward to going back home. Because for better or worse, it’s really the only thing my illness will allow. And it works better for my family, too.

Even if my illness has forced my hand because I never fully recovered from last year’s relapse, there really is a bright side to it all. And for all the times I’ve hated freelance writing, it really is what I do, what I’ve always done. It’s too late to try to significantly change courses now so I might as well look at the benefits.

When we see the early signs that daylight’s fading

…we leave just before it’s gone.

That’s an old Counting Crows lyric but it’s still oddly fitting.

You see, I realized that there’s no way my health is going to hold up with working full-time. Even though I have a short commute and even though I want to be working FT outside the home, those factors can’t counteract the damage it’s already doing to me.

Working full-time has made it really apparent that I am definitely in the secondary progressive stage of multiple sclerosis. I fit all the symptoms and honestly it makes it hard to work. I have to go to the bathroom twice an hour. My leg muscles are so tight that they hurt all the time, like a permanent charley horse. (Even my husband can tell when he touches my legs how tight the muscles are.)

In truth, despite all of my denial, it’s clear that I never fully recovered from my relapse last summer. My handwriting is terrible again and it’s physically painful for me to write. That’s particularly sad for me because I used to have beautiful handwriting and I don’t anymore.

My walking is still noticeably affected. I never regained all my strength in many parts of my body.

But working FT causes all of those effects to worsen and become more pronounced.

I think that’s due to the combination of stress, not getting enough sleep, and the string of really hot days, which makes my symptoms worse.

This is hard for me. I feel like people perceive me as a quitter, although I usually stay at a job on average for about two years. (Though I had the same freelance writing job as an editor for the natural food magazine for almost five years.)

I don’t want to quit. It feels like even more of a defeat because I finally achieved my lifelong goal of getting a FT writing job.

It seems almost tragic to have to give it up, especially after I waited so long to find it.

But my body and neurological system do not care about what I want to do. Right now, they’re sending me a very clear “fuck your plans” message and there’s nothing I can do about it.

My symptoms have reactivated so much since I started the job that it seems like just a matter of time until I end up in the hospital again. So this isn’t really a matter of choice. A month into the job, I am adapting worse now than in the beginning.

People try to say that diet will cure this (although there are remarkably few cases of people doing so) and I’m not giving up on that idea. But focusing on my wellness is key and it’s clear that it’s not really compatible with working FT.

I’m hopeful that I can go back to the earlier level of functioning I had before starting the job. I do acknowledge that I was perhaps downplaying a lot of my symptoms before. But I also know for sure that I felt a lot better.

I felt better, my relationship with my husband was better, I had more time with my kids, even my cat behaved better.

It’s true that working is making me less depressed, which is the difficult Catch-22 here. Being less depressed counts for a lot. But being sick is worse. And I’m no longer as cocky that I’ll be able to avoid a walker or wheelchair, which is terrifying. (I think my odds of avoiding that are better if I’m not working FT though.)

The good news, I guess, is that my freelance career was just finally starting to get to the point where I always wanted it to be. I had clients coming to me with work — and then I let it go so I could work FT instead. I still have clients coming to me offering me work, even now. So it should be pretty easy to pick it back up. I’ll just have to start filing quarterly taxes, which sucks.

With MS, you can’t really have it all, at least once you progress to a certain point in the disease. And since a couple doctors told me I was already secondary progressive by the time I was diagnosed, there’s not a whole lot that can be done to help me. Seeing as how I had what I now recognize as symptoms as early as 2002, getting a secondary-progressive diagnosis in 2013 and again in 2018 is plausible.

Instead of feeling like this is an unfair choice foisted upon me, I can be grateful that I have a skill I can do at home to earn money. I worked hard to establish myself and was finally starting to get freelancing right.

Although I don’t know how or when I’ll extricate myself from my job — or when I’ll stop feeling like a personal failure that my health wouldn’t let me do it — it has to be done. I have to pursue balance and do the things that will make me as healthy as possible. And unfortunately working FT just isn’t it.

You said that I was naive and I thought that I was strong

The lesson I have to keep learning and relearning is that I don’t always have to do something about it when I’m unhappy with a situation.

Take jobs, for example. Before you start and in the first week or two, it’s like I’m seeing the job through rose-colored glasses. And that’s not just a one-sided misperception; it’s one that I think employers actively promote. Especially around here, there are so many places looking for workers that they try to sell you in the beginning on why they’re so much better than other companies and on all the perks they offer.

But the reality is that jobs are jobs and if they didn’t pay you to be there, few people would show up. They’re not supposed to be fun; that’s why they call it work.

Yet I also think there’s this myth in our culture that the ideal exists and we can find it if we look hard enough. Whether it’s a job or a partner, we’re sold this idea that we can find the perfect one. The “dream job” is out there and so is the dream partner. I fell into this trap for a long time regarding jobs and I thought that if I just found a full-time writing job, that would be my “dream job.”

The truth is that now that I found a full-time writing job, one that combines many of my biggest interests (medical research in particular), it still falls short of being my dream job in many ways. Now that the shiny luster of the new company and new working relationships have worn off, things look a little different. In some ways, they look a lot different.

There’s bureaucracy and incompetence and people with less than a tenth of my writing experience telling me outright that they know more than I do. There are some mean personalities and people on the team I like more than others. Particularly with my health being what it is, there are a lot of days when I just don’t feel like I can go in but I have to anyway.

And from the other side, I’m sure they’re disappointed that I’m quieter and more introverted in reality than I seemed during the interview process. I’m sometimes impatient and I don’t like being held back from doing work that I’m certain I’m perfectly capable of doing, just because I haven’t had time to prove myself yet.

On some level, I thought that because I liked the general work I’d have to do (which I do) and I wanted to work outside the home that it meant I wouldn’t have these other frustrations to deal with, too. But unfortunately that isn’t the case.

I thought I found my “dream job,” but I’m learning that there is no such thing. People who feel that their job is a ‘dream job’ which doesn’t feel like work are a statistically tiny minority. That’s why marketers like Ramit Sethi and the multi-level marketing companies from Beachbody to Plexus to Lularoe (which I think is now defunct) are able to succeed. Everybody wants to be rich and to not have to deal with ineffective bosses and obnoxious coworkers.

Everybody wants to wake up every day feeling excited to go into work. The best of those marketers try to convince us that finding a truly fulfilling job is not only possible, it’s our birthright. But if we all operated on that principle, who would do the work that our society truly needs?

I’m lucky in that I finally got really close in the ballpark of what I wanted; many people never do. Writing full time about healthcare topics is still way more interesting and better suited to my particular skill set than working in collections would be, for example.

Just like you can find someone really attractive and not have to act on it, you can be frustrated with aspects of your job and not have to quit. I know that’s probably pathetic in its obviousness and likely speaks to some immaturity on my part as well.

I’m just realizing that looking for that one thing, whether it’s a job or a partner, that makes you 100 percent happy 100 percent of the time isn’t realistic. Note that that’s not saying you should settle for something that’s not what you want at all or that even has more bad than good. But chasing perfection can be pretty empty and it just leaves you alone and continually starting over from ground zero.

Sooner or later, you have to stop burning everything to the ground because you’re never going to be able to build something that meets all your criteria. Sometimes it just takes looking around with your eyes open and realizing that what you have is pretty close. Good enough. That the ideal dream job isn’t going to be out there.

It’s up to me how much I want to suffer as a result of the things I don’t like. But it just seems like it’s smarter not to take on problems I don’t need.

I don’t even know if I believe

I almost went to mass today. But as when I’ve considered similar things before, what stopped me was the way I was dressed. I was in denim shorts and a t-shirt for The Handmaid’s Tale show that said “I intend to survive.”

If God is real, I don’t think he cares about what I wear. But the other people there sure do and right now I’m using all the fight I have left in me just to survive.

I can’t say what the pull was that made me consider going to mass, after more than 9 months since attending any church. I didn’t even go on Christmas or Easter. Frankly I’ve been pretty angry about the whole damn subject (and have enjoyed reading my ex-evangelical FB group.)

Maybe what made mass sound appealing was the fact that my illness makes me feel really helpless right now. I thought the familiarity and the rituals might be of some comfort. I thought it was a place where I could go and just cry and nobody would stare at me weirdly.

Maybe it was from watching The Handmaid’s Tale and seeing that the evangelicals in that dystopian future have killed the Catholics (and a nun was still fighting for social justice in the resistance effort.) That always was the part of Catholicism I liked, the social justice and the resistance and the attitude that we’re supposed to try to love everybody and leave the judgment up to God. Catholics often stand apart from the rest of Christianity in really good ways.

I still don’t know what I believe. I can’t think of the Bible as more than allegorical. At this point, the stories of Jesus’ life seem like parables at best. The rules you have to follow to be a Catholic “in good standing” still seem like control mechanisms designed by fallible men. And some aspects of Catholicism are worse than other Christian religions.

But ideas like the message in the above picture that scare me away from most churches, especially any kind of evangelical church. I don’t even know if I believe in God, let alone that I value him more than everything else in my life.

Yet there’s still something there, some tiny grain of something appealing that makes me think if I ever pursue religion again, it would be Catholicism. Or maybe Episcopalian since they are basically Catholic with a more overt focus on equality. (And I believe they also still sing the original, prettier Gloria that the Catholic Church took away shortly after I converted. That song was one of my favorite things about the Catholic Church, even to the point that I got some angel statue that had the words on it — and I am most definitely NOT an angel statue kind of person.)

But I’m getting off track here. If you would have asked me two months ago, I would have said I never wanted to step foot in any church ever again. And I don’t know why I’ve softened my stance on that a little bit or if it will even continue. It could just be something I think about more kindly when I feel like I need peace the world can’t give me.

Yet I also know that going to church doesn’t often give me the peace I’m seeking either. Maybe peace will be something that will always elude me to some extent. I’m not sure if calling myself the “conflict girl” is self-fulfilling or simply accurately knowing myself.

I’ve let a lot of people convince me of what I can and can’t believe when it comes to faith. Conservative Catholics are every bit as bad as conservative evangelicals, and the conservative Catholics would call me a “cafeteria Catholic” for trying to pick and choose which rules to follow. They say that you have to submit to the authority of the church to guide what you should believe. And that’s just never going to be me.

I have no interest in the apologetics or the people who have proofs and arguments for why every single Catholic doctrine is correct. I want to still read tarot or horoscopes if I feel like it, neither taking them particularly seriously nor feeling like doing so opens me up to the risk of demonic possession. I want to believe in chakras and self-healing and that there are tons of mysteries we can’t possibly understand.

My life is sadder when I deny that there are any mysteries. But I am also absolutely miserable when I try to conform myself to be something I’m not or believe things I don’t.

Maybe there’s a place in the patchwork of what I believe that has room for some Catholic icons. Imagery is a very powerful factor in the human psyche, after all. Maybe I don’t have to be “all in” or totally convinced that everything the Catholic Church teaches is complete and correct. I may not have to go to mass every week to get something out of it once in a while. If I don’t follow the rules and there actually is a place called hell, I guess I would have ended up there either way, so I should just do what brings me occasional comfort.

But I also think that we’re supposed to glean what’s useful from religion and use it to help us cope and to make the world better. I don’t think it matters so much which religion you follow. Is your faith helping you be a better person and to get through the hard parts of life? If it’s not, what’s the point of having it? And I mean that on many levels.

If no faith helps you, feel free to disregard all of it. I actually don’t think there’s much objective truth and I certainly don’t agree with the way religion is used to try to control people. But I’m coming around to think that maybe a little bit of faith doesn’t have to be so toxic. I might be able to find a way to shoehorn it into my jumbled mess of a belief system.

All I know I for sure is that right now I feel like I can’t cope with my life or my illness and it seems like I need to be open to finding comfort wherever I can find it.

Isn’t it ironic, don’t you think?

Oh irony, you cruel bastard. For years, I’ve wanted a full-time writing job. When I moved down here from Michigan, getting such a job was my original goal.

Now that I’ve finally achieved that goal four years later, I’m actually not sure my health will let me do it.

My health is apparently considerably worse than it was when I last worked full time four years ago. So far I’ve had one night a week of severe insomnia during each of the three weeks since I started my job and end up with only two or three hours of sleep on those nights.

I always had insomnia about once a week when I worked full-time before, but my body was better able to bounce back from it. This time, I’m not bouncing back. Each time this happens, I get worse.

Up until now, I’ve been really determined that I would never need disability. That it was completely within my control whether I needed disability and when. And now I’m not so sure anymore.

I did a Google search on working with multiple sclerosis and this pretty mainstream Everyday Health article says an indicator of when you need to consider going on disability is when your job uses up all your energy, leaving you none for your family or interests. And…yeah, I’m already there. I hate to admit that in that regard, freelancing worked better for my health. It just wasn’t enough income. My family needed more from me.

It’s possible that my body just needs to adjust. I wasn’t on anything resembling a normal first-shift schedule before so maybe my body needs to get used to it. It’s also extremely hot right now, which is itself a risk factor for MS relapses.

I can feel that the heat is affecting me much more than it has in previous years. I think that’s because I’m having to get into a very hot car after work and wait for it to cool down — which doesn’t really happen for at least 20 minutes, at which point my body temp has already increased. My body temp doesn’t usually come back down for at least 6-8 hours.

My foot drop is now noticeable and pronounced; you can hear me coming down the hall. I run into walls and stagger like I’m drunk. My eyes have that glassy stare of someone who’s clearly ill.

But I don’t think my coworkers think I’m ill yet; I just think they find me weird. I don’t think they’ve noticed my health yet. And I’m already more than 10 years older than they are and can’t participate in things like team happy hours because I have to come home and sleep, not go out and drink. In that regard, I’m not fitting in with my coworkers again, just like at my last FT job.

So there are some independent factors that need to be tweaked and it may get better. But for the first time, I’m actually considering the fact that it may not. Even when I applied for disability before, I still didn’t know for sure if I could handle full-time work — especially if I got the right job.

Now I did get the right job with a short commute and my brain and body are saying nope nope nope. I literally cannot do anything other than work when I have a full-time job.

My husband seems to think that the right sleep hygiene will fix all of this, and I don’t know how to explain why I don’t think it will. It’s so much more than just sleep issues.

I don’t want to be this sick. And I don’t want these to be my choices. I get way too lonely when I work at home. I feel way too vulnerable being responsible for paying my own taxes. I hate the instability of freelance work.

If I were to get disability, it would not be enough to live on – and with Trump in office, I fear my social security would be garnished for my student loans.

But these might be my only options if I can’t adjust. This is already way too hard on my body and I can feel that I’m headed for a collapse before the summer is up, especially since it’s supposed to continue with the record heat.

I really don’t know what my next steps are if I don’t get better. I really thought I would sail right through this adjustment and just be super pumped about finally having a job that I liked. I thought that based on my past history, it was more likely that I’d get sick of the job at some point. That I would want to leave before I’d feel forced out.

But I’m not sick of my job. I really like it and want it to work out. And instead I’m finding that my body and brain have completely betrayed me and I don’t know what to do about it. Literally the only thing I have energy for is work and adding anything else on top of it makes me sicker.

I might have to figure out a Plan B. Hopefully I can get my taxes paid off and get a new mattress first if I end up being unable to do the job.

I’m determined and badass but I may have met my match.

It’s real as far as I can see

Coming head-to-head with my old friend denial once again. Whenever I think I’ve got a grasp on my MS, I have another realization a few weeks or months later that lets me know I’m still not dealing with it.

And I suppose that makes sense, as I’ve read that other people with chronic incurable illnesses go through similar stages of denial, bargaining, anger.

I read an interesting statistic the other day that only 30 percent of people with multiple sclerosis are working. That number seems so shockingly low that I’m not even sure it’s accurate and I want to make time to try to verify it. (Update: I verified it and the 30 percent figure seems to be for people with progressive forms of the disease, and I’m already secondary progressive. It can be as low as 15 percent depending on the type and stage of MS. For all people with all forms of MS, about 55 percent are working.)

But at the same time, my transition to full-time work has revealed something quite clearly that I hadn’t been admitting to myself before: I am getting worse.

Multiple sclerosis uses this scale to measure degree of disability called the Expanded Disability Status Scale (or EDSS for short.) It goes from 1-10 with .5 intervals to measure the specific functions in which you may be impaired and to what degree.

Five years ago, my EDSS score was a 1.5.

Today, after the relapse I had last year, I’m between a 3.5 and a 4. What’s particularly scary about that is an EDSS score of 4 is the point at which your specific symptoms are considered permanent. If I’m not there yet, I’m just on the verge of it.

It seems like the two camps of treatment (pharmaceutical disease-modifying drugs or the natural approach combining a very strict low-fat diet plus lots of exercise) seem to encourage denial. Neither is a cure. “Success” with either form of treatment means that your disease doesn’t get any worse, but none of them actually makes you better.

Both sides say that if you just stick with them, you won’t get worse. But you might still get worse anyway – many people do – and then you have to find out why you’re getting worse. If you’re taking the drugs, it must just mean the drug has stopped working for you. But given the irregular nature of the progression of the disease, how can you ever know that it was truly the drug itself that kept you from getting worse for a while? You might not have gotten worse without the drugs, either.

If you’re taking the natural approach and you get worse, it’s always your fault. You weren’t strict enough with your diet. You didn’t manage your stress well enough. You didn’t get enough exercise or the right kind. There’s no real science backing up that these things really help, but there’s always a handful of true believers whose disease has been at bay for a long time, which they attribute to their lifestyle choices.

Both require a lot of faith in what you’ve chosen and I do believe that the mental factor and self-talk are major influences on this disease. But the truth of the matter is that no matter how much faith you have in your chosen treatment, whether or not you get worse and at what rate is still largely a crap shoot.

Sure, you can definitely do things that make you get worse more quickly, like smoking or having a high-stress job. But you can do all the “right” things and still get worse.

I’ve read that a lot of people with MS are or were control freaks, which makes it ironically fitting that the disease itself is defined by your lack of ability to control it.

It’s also a lonely disease, at least for me. The support groups are largely full of people who are continuing to get worse and are therefore understandably scared and negative. But those views are contagious and I need to avoid them. And although the natural health groups are more empowering, there’s still a not-subtle undercurrent of victim-blaming if you’re not getting better.

I don’t actually know what’s going to happen with me. Working is better because I feel more useful and don’t have as much time to sit around inactive and lonely. But although I’m not having trouble waking up early, the realities of full-time work are a lot harder on my mind and body than I expected.

The good news is that I’m determined not to give up, no matter how hard things get.

Thinking fight, fight, fight at all costs

There’s no time to sit on the fence anymore. In truth, that hasn’t been a luxury we could afford for many years, but it’s especially true now (in part because so many of us, myself included, thought we could opt out.) And I’m especially ashamed of my own cowardice and failure to take a stand while I was involved with church.

I started watching “The Handmaid’s Tale” tonight, since I finally got Hulu and set aside dedicated time to watch it. I knew I would like it, since I loved the book it was based on and the author Margaret Atwood is probably my single-most favorite writer.

Even though both my liberal friends and my friends in the ex-evangelical Facebook group to which I belong have been raving about this show and I was sure I’d like it, I wasn’t prepared for how scary it really is. I think it’s actually much scarier than the book.

I wasn’t prepared for the wake-up call it would give me or the shame I’d feel about having hidden my true self for so long.

The phase of me being fake and trying to suppress my true views peaked when I was in the secretly Baptist “non-denominational” church. I just wanted to have friends, so I hid the many things about my thoughts and views that didn’t fit in.

I kept my mouth shut when friends from church shared pro-Trump views. I kept quiet when people would equate gun rights with Jesus. I said nothing when the pastor said he had “no problems with immigrants as long as they came here legally.” I still said nothing when he talked about being gay as “against God’s plan.”

The show reminded me of why I can’t stay silent. Even people who seem nice on the surface can’t always be trusted, especially when evangelicals are in high positions of power. The evangelicals who have so much political influence right now are twisting scripture to justify discrimination, which is increasingly guiding our country’s actions (particularly toward immigrants.)

If you actually know the scriptures and call them out for subverting and distorting them, you’re an enemy even if you call yourself a Christian. But these people are the reason that I cannot and do not currently call myself a Christian. And the show is a pretty chilling reminder of the consequences of staying silent when you see people abusing power in the name of religion.

Watching this show is the latest step in taking me back to the roots of who I’ve always been. I always said I would fight injustice. I always cared about women’s rights, much more so when I was younger. Supporting LGBT rights has also been important to me for at least 25 years.

And yet I let the evangelical power structure control the narrative and convince me that my views were the wrong ones, something to hide. After all, I didn’t want to offend someone — never mind how fucked up it is that people can be offended by sticking up for other people’s rights.

So I’m going back to being more aware and will follow the news more closely, even though doing so increases my anxiety. I’m glad I finally went back to work outside the home and earn a decent salary, because although I highly value my husband’s help and am glad I don’t have to do things alone, I do not want to be dependent. I never again want to be as helpless as I felt when I was staying home and had an irregular freelance income.

I’m still personally conflicted about the birth control pill, as I distrust a lot of medications and that one in particular has a lot of side effects I was unable to tolerate. And I’m somewhat conflicted about the abortion issue, although much less so than I used to be. But this is an issue for which I have to stop saying I can opt out of caring about it because I no longer personally have to worry about these issues.

In my late teens, I was a counter-protester at the women’s health clinic in my hometown, because I felt very strongly about the fact that women deserved a right to make decisions about their own bodies.

I’m finally returning to that viewpoint again. I want to donate to Planned Parenthood and NPR and the ACLU. I may be ashamed of my silence and attempt to stay neutral for so long — but I can do things differently now.

I can’t afford to be silent anymore and am willing to face whatever consequences there may be for being open about my views. Whether that’s just losing friends (even though most of my church friends have already ditched me) or being silenced someday by a government out of control, I can’t stay in the middle. That’s just not who I am.

I do what it takes

I have multiple sclerosis, which some people call a “terrifying” disease. I try not to dwell on the fear, but I know that for some people, it definitely fits that definition. At times, it has even had scary moments for me as well, such as symptoms that were nearly impossible to distinguish from a stroke even for my doctors. Sometimes I temporarily lose my vision.

Yet if you want to help people like me, please don’t donate to the National MS Society.

This all came about because I saw an Instagram post earlier that a musician I like is raising money for MS because his aunt has it. I was really touched by that (although also scared that I have the kind of disease that would inspire people to have charity walks.) But then I saw that the money he was raising would go to the National MS Society. I don’t fault him because he’s trying to help, as most people involved with the National MS Society are.

But here’s why that’s the kind of help I don’t need: the National MS Society is all about compliance with the disease-modifying drugs (DMDs) like Ocrevus and Copaxone. None of those drugs are cures, though for how expensive they are, they should be.

I know there are exceptions to the rule, but I see scary outcomes still occurring even in most people who take those meds. It seems that the meds make people worse and more quickly. I was reading earlier today about a woman who was diagnosed with MS, took the drugs they recommended for her, and within five years she was unable to work anymore and had to take disability.

I may not be able to control the course of my illness, but I am doing my damnedest to avoid outcomes like total disability through sheer stubbornness and positive self-talk. I am telling myself that I just won’t ever become disabled.

I have a link to a study somewhere that I can’t find just now that says that mental attitude plays a major role in MS and disability. Specifically, they found that people who were more optimistic had a slower and less severe progression of the disease.

I don’t think anyone who knows me would describe me as having a positive attitude at all, but I am certainly trying to turn it around. And I honestly believe that my self-talk and my reassurances to myself that I’ll be okay are going to keep me well in the end.

If you read mainstream stuff about MS, of course it sounds terrifying. It sounds like you’re doomed. Add to that the substantial side effects of many of the disease-modifying drugs and it’s really no wonder that people end up filing for disability within just a couple years. I actually did file for it a couple years ago but cancelled my application before they could make a decision.

Fear and stress make MS pain much worse. And if you’re constantly surrounded by people talking about how bad their MS is (as is the case in most online support groups) it’s just going to ramp up that fear and stress.

Much like watching the news all day convinces you that the world is dangerous and you come to adopt that view, the same seems to be true with immersing yourself in the world of MS.

I know very few people who are active participants in MS communities, regularly seeing their neurologist and taking the recommended drugs, who are actually doing the same or better after five years. Most are doing much, much worse.

I supposedly have a very severe case of MS based on my MRIs and the number of bands in my spinal fluid. And it’s true that I’m marginally worse than I was five years ago. But I don’t have the side effects of any of the DMDs on top of it. When I feel like I’m getting worse, I just take naps and try to reduce my stress levels, eat better, and spend less time standing on my feet.

No, it’s possible that nothing will ever make me able to go back to walking around for five hours again. But at the same time, I’m convinced that my symptoms are manageable without the drugs. I do also believe that as I continue trying to get more exercise and improving my diet, I will likely see a reduction in the symptoms I do occasionally have.

I once read a quote from someone with MS who, like me, had opted not to take the DMDs. He said his advice for newly diagnosed people was to forget their diagnosis and focus on trying to clean up their lifestyle in every way. And that’s what I’m trying to do, too, even if my changes are gradual.

I’m convinced there’s a way to beat this, or at least to manage it, and I’m going to write about that on yet another blog site. I just don’t believe the drugs work — but I’m also not resigning myself to my illness, either. I’ve been diagnosed for five years and had symptoms for 16 years. For how bad my MRI supposedly looks, I’m actually doing pretty damn well. I try not to let it stop me.

There are so many things I’ve found in my research that suggest MS is most common in people (particularly women) who have historically poor eating habits and difficulty managing stress. There’s also a hormonal component, which seems to be linked to why women are more likely than men to have the disease. I think of this as a puzzle to be solved, a mystery to be unlocked.

I’m determined to find a way to manage this because I am not a quitter. I am making incremental improvements in both diet and exercise. (I actually tripled my daily step count when I went to work in an office, which is supposed to be so sedentary–it just shows how much more sedentary I was at home and how much better I am doing to be working outside the home!)

I believe I can stay well, even if it’s more challenging. I kind of think I’m like the canary in the coal mine, warning everybody about what can happen if you live a typical high-stress lifestyle with a poor American diet.

I’m determined to beat this on sheer stubbornness alone (plus a hefty dose of help from my geeky research skills.)

Well, you know, you better free your mind instead

I’ve learned so much about myself over the past year or two, good and important things that I nonetheless could only learn at a great cost and often through suffering.

I finally left church and I am immensely relieved at having done so, although I still have a lot of residual self-blame and guilt over the fact that my husband left the church last fall as well.

I got really, really sick with my MS and realized that I had to stop fucking around and pretending I didn’t have it.

I finally admitted to myself that I hated staying at home and hated freelancing and that I would be much happier in an office job.

I finally stopped living a lie and suddenly things seem so much better.

Getting away from Christian religions I never really believed in felt like I was coming back to my true self.

Finally accepting the fact that I have MS means that I have to take better care of myself or else I will get sick and suffer more. I don’t always like to do the right things to care for myself and I don’t always do it well. But at least now I’m trying and I know what’s going on.

And now I have at last gone back to work and found a pretty much ideal job for me. My only complaint is that it might be too easy–but that will also help keep my stress low enough to reduce that risk factor for my illness.

(Who knew that the above symptom – called sensory overload – is part of MS? When I can avoid that overstimulation, it significantly reduces my pain and numbness and confusion.)

So through all of these sometimes difficult changes, along with the really tough changes our marriage went through a couple years ago, I’m starting to see the rewards.

Life is much more manageable. Even with MS, I have some control over how much pain I experience. (I’m just still not good enough at respecting my body’s limits and setting boundaries with people to protect my health yet.) The communication in my marriage is massively improved. And now I have a full-time job outside the home where I really believe things are going to be okay, even good.

So now I’m trying to look forward to the future and see what I’m going to do with this knowledge. I feel like maybe I have a book or two to write, somewhere inside me. My life has been pretty interesting, even in the ups and downs, and I think maybe I’ve learned some lessons and gained some wisdom that might be worth sharing.

But even if I never write a book, I’m just so relieved to finally feel okay with myself. It may have taken me a really long time (I mean, I’m 44 years old!) but I can look at my struggles and most painful memories and see good in them. I can see lessons I was supposed to learn from hard times. I have been shaped by pain.

And it’s good, just really good. I know myself better. I’m learning to like myself better. I’m making peace with people who have hurt me, especially my parents.

Things just seem like they’re falling into place. I had to go through the painful parts first and I think they were a necessary part of the process, but so far it really seems to have been worth it. I turned a corner and now everything seems like it’s getting better — and so much of that depended on my willingness to face the hard stuff. If you keep running away from difficulty, it never really goes away.

Give yourself a try

So I’m coming out on the other side. It’s amazing how getting almost enough sleep helps. It helps that it’s Friday, that sweet, magical land of the workweek. And this is when I will reap the rewards of getting a FT job and stopping freelancing: having an actual weekend, two days off when I don’t have to do any work or feel guilty about not working.

Honestly I was doing pretty great on Wednesday and thought I was rounding the bend — I didn’t even need a nap that day. But caffeine too late in the day was so drastically bad that it fucked up that night and all of yesterday and made me feel like I wouldn’t ever be able to do my job. (There’s also the PMS/PMDD factor which snuck up on me…great timing, no?)

But I now believe that I’m going to be able to do this after all. I just have to not ever ever ever have caffeine after work because it takes me 24 hours to recover from that tragedy.

I have realized that my MS makes me much more of a delicate hothouse flower than I want to be. I want to be a badass who can thrive in the harshest conditions. I want to be a cactus, who stores up the bare minimum of what I need so that I can survive when I don’t get anything.

But that’s not me. At all. In truth, I am a very fragile type of flower, which pisses me off. If you don’t give me the conditions I need to survive, I quite literally start to die. I think my health is proof of how little care I have historically given my body and how disastrous the results have been for me. I didn’t cause my MS but I made every one of my risk factors worse.

So this is my new start to try again to take better care of myself. I’ll have to create some new routines to help myself stay well. But I actually think I’m going to be able to manage this new life. I needed to be able to work outside the home and have regular interactions with other people. I needed to decrease my anxiety by having regular income. I recognized the things I needed to get better and I’m starting to do them.

This is all good. It’s going to be okay. I just have to make the transition and do some brainstorming on how to make my new reality better balanced.