Are they MS symptoms? Or are they caused by your meds?

I did something some may consider radical last night, as I wrote about a bit: I decided that I was going to go more decisively in the direction of what my oldest calls my “woo” approach to alternative medicine.

I stopped taking every single one of my meds, cold turkey. I researched each of them to know about drug half-lives and if it was safe to quit them abruptly. The only one that wasn’t safe to quit abruptly was klonopin, because drugs in this class (called benzodiazepines, which also includes drugs like Xanax and Valium) can cause seizures and pretty terrible withdrawal if suddenly discontinued.

Taking them every day can cause dependency and requires slowly tapering off them with ever-smaller doses. Even though I’m only on a low 1 mg daily dose for a certain type of seizures in my legs and that’s not a very large dose at all, I have been taking it for more than two years and my body is likely dependent on it.

Even though I was already strongly leaning in this direction yesterday, I researched it further before making a final decision. And what I found is that every single medication I was taking was what they call an anticholinergic drug, including the tricyclic antidepressant I’d been taking for a couple months and the more powerful muscle relaxer I only take on weekends.

Anticholinergic drugs can cause confusion, dementia, and memory loss, especially in the elderly. But it occurred to me that if I was regularly taking up to six drugs a day that each had that effect, maybe the cumulative effect would explain my brain fog and forgetfulness.

Normal side effects of anticholinergic drugs include the following:

  • Dizziness
  • Drowsiness
  • Clumsiness
  • Confusion
  • Blurry vision
  • Memory problems

I’ve had every single one of those problems pretty much every day for the past three years. Not coincidentally, that’s also how long I’ve been taking at least some of these meds together, with me taking all of them in the past year when I got sickest.

The problem is that these symptoms are also very similar to normal MS symptoms, so I didn’t think they were medication side effects. I thought they were an indicator that my MS was getting worse.

Normal, healthy people can probably take one of these drugs at a time, whether it’s overactive bladder medicine or even Benadryl (which is also in the same category) and probably not be terribly affected.

But when you have someone who already has a known brain disease and have them taking up to six different anticholinergic drugs at once (seven when I’m on steroids), it can make them feel really bad.

I usually felt like I was at least 30 years older than my actual age. I needed so much sleep. I found it impossible to keep my balance while walking. I would frequently lose my train of thought mid-sentence. I really felt like an elderly person with dementia, in all seriousness. There was no way I could work in that state, which was why I filed for disability. I couldn’t even follow simple directions.

The hopeful part is that after just one day of cutting out all meds except the Klonopin, my husband said I already seemed to be improving a bit in terms of not losing my train of thought as often. My speech pattern didn’t sound as broken. And although I’ve had a horrendous headache all day, my head feels clearer already. I’m encouraged that this may continue to get better as the meds work their way out of my system.

However, I’m also being cautious about waiting to see what the state of my brain will be like as I adjust to not being on any meds.

Will I be healthy enough to work? I really hope I am, and I even hope I can work full-time.

But I do still have MS. And I still live in a place where it’s really hot for five months out of the year, which is a trigger for flare-ups of the disease. I can’t be certain that I’m going to be well enough to work.

And realistically, I probably can’t work a standard 8-5 shift plus commute, because that’s so contrary to my body clock and being on that schedule gives me so much anxiety that it causes insomnia at least one night a week. But that still allows for library schedules, which is what I really want, or second-shift or mid-shift hours somewhere. It limits my options in terms of the types of jobs I can get, but in truth I’ve never been well-suited to the typical corporate life anyway.

Yet I am really hopeful that I will be able to work again. That will give me more of a feeling of purpose in my life. Because even though I dearly love my husband and kids, they can’t be my entire reason for living. My kids will grow up and move out, as they should, so what will I do if they are my entire purpose for living? What if (God forbid) something happens to my husband?

I have to have more to my life. And while I still feel grateful that my husband takes his responsibility for providing for the family so seriously, the truth is that I am not happy just being at home.

If I get my brain back, I want to put it to good use. I want to feel like I have more control over taking care of myself. It was scary how vulnerable I felt before. I truly was afraid that I might lose the ability to drive within a couple years at the rate I was going before.

Honestly, all indications so far seem to suggest that getting off all my meds is going to take away my most bothersome symptoms. I don’t want to have to take any medications every day if I can help it.

Once I’m not so dizzy anymore that it’s messing up my sense of balance, I want to focus more on exercise that’s more intense than just walking. Just four years ago, I could still use an elliptical machine and loved it, so I bought one when we moved in here. I’ve never been able to actually use it because being on it made me feel too unsteady and unsafe while I was taking the meds. I mean, it’s a challenging exercise when you’re out of shape until you adjust, but feeling like you’re going to fall as soon as you step up on it isn’t normal.

I didn’t realize just how difficult it was to do the right things to take care of myself while I was under the heavy influence of these powerful medications. If I can get a good enough sense of balance to use the elliptical again, that would be amazing.

I wonder if I’ll also gain the ability to run? I’ve always wanted to be a runner but my legs have been too heavy to lift them the past couple years. I don’t know if that’s part of the normal “foot drop” associated with MS or if it will go away now.

If this turns out to work the way I think it will, then that also resolves a lot of my health insurance dilemmas. Because while having terrible and expensive health insurance is undoubtedly a bad thing, it’s something you won’t have to worry about as much if you’re not regularly going to the doctor or taking a lot of medications.

So far, I’m not yet one of those people who endorses any particular diet or form of alternative medicine to treat MS. But I am already pretty convinced that being on a ton of drugs to manage symptoms is not the way I want to go.

I actually felt like I wouldn’t live that long based on the way I felt before. And now that some of the side effects I was experiencing are already lessening, I can actually envision a future again.

Maybe I won’t die in the next 5-10 years, after all. I’m hopeful that I’ll still get to have a job and maybe even do a little traveling. And really, I can’t tell you how amazing it is and how much it feels like I’ve gotten my life back, just to go from being pretty sure I’d die within a decade to believing I have no reason to assume that anymore.

It’s life-changing. Seriously. And if anyone else reading this is also on a lot of meds every day and is overall feeling pretty constantly unwell, check the side effects of your meds and look into possible interactions. I would tell you to do it with more of your doctor’s involvement than I did, since I’m kind of a renegade that way and I am willing to accept those risks (and also I do a ton of very in-depth medical research.) But I would never advise anyone else to go about it the way I did.

Then again, my doctor was the one who prescribed me all these medications and didn’t catch the fact that they were all anticholinergics. Unfortunately, at least with some doctors, you have to be able to research your own treatment, too, because they might miss stuff.

Just consider the possibility that maybe it’s not healthy to take a lot of medications. Doing so could actually make you feel a lot worse than necessary. I’m pretty hopeful that I’ll feel a lot better when I’m not on a ton of meds anymore.

The medication question pops up again

I went to see my old neurologist yesterday. I wasn’t super impressed with him before, but at least he would prescribe medications for symptom relief, which the new neurologist I saw last year would not. I liked that my old neuro never pushed any of the disease-modifying drugs on me before — in fact, he never even suggested them.

Yesterday was a whole different story, though. After reviewing the results of the tests done during my hospitalization last year, he’s now saying I should take meds.

I asked if he thought I was secondary progressive and he said “that’s hard to tell for sure, but you’re progressing quickly now so you need the meds to try to stop it if at all possible.”

He wants me to start with IVIg treatment because steroids never wipe out my relapses anymore. Honestly, I would love to get the IVIg. But I also have terrible insurance and money is so tight since I had to quit working. I’m sure that because I haven’t hit my deductible yet, the IVIg will be completely unattainable for me.

After that, he wants me to start on the Ocrevus, which I’ve mentioned I’m terrified of because it’s so new. Even if I were willing to take it, I’d have to get MRIs every four months because once Ocrevus is in your system, you can’t get it out for six months. Their practice standard is MRIs every four months to see if the deadly brain disease PML is beginning to develop.

I have to pay for MRIs 100 percent out of pocket because of my crappy insurance. I haven’t even been able to get one a year, let alone three.

I’m high positive for the JC virus which means I’m at higher risk of developing PML with many of the other drugs. He suggested maybe Tecfidera or Gilenya, even though those also carry a higher risk of PML. He agrees that Copaxone will not likely do anything to help me, but suggested Rebif. When I said I was concerned about that one because it’s linked with causing depression and I already have major depressive disorder, he shrugged and asked why I wasn’t taking an SSRI.

I said I had taken nearly every SSRI and had bad reactions to them, so he suggested taking a newer antidepressant. Which again, my crappy insurance won’t cover.

I’m frustrated because I’m back to square one again. I had already decided I wasn’t going to take the drugs. But my neurologist said I’m clearly worse than I was last time I saw him two years ago, which is true. The relapse I had last year was really bad. Two years ago, I was still able to work. He says I will keep getting worse if I don’t take them, but he can’t actually know that. People take meds and still get worse on them. Some people also take meds and credit the meds with not getting worse.

Due to the nature of the disease, no one — not even the doctors — can know if the meds are working. There’s no correlation to the appearance of your brain on MRI and your symptoms. My MRI has not changed at all in five years, yet my symptoms still get worse. I haven’t been on any disease-modifying drugs in that time. Is that why my symptoms got worse or would they have gotten worse anyway?

Most doctors measure the success of an MS drug by whether or not you have new lesions on MRI. Since I haven’t had any new ones since being diagnosed, what is the intended outcome of taking them? How would you define success of a treatment?

Who do I believe? Do I take a chance, even though the drugs are really scary to me?

If no antidepressants have helped me so far, why do I think the MS drugs would? There’s certainly an element of confirmation bias, in that you get an outcome similar to what you’re expecting.

But there’s also the undeniable fact that money and insurance are major factors, whether or not I want them to be. I would be much more likely to take the chance on the medication route if it wouldn’t be so cost-prohibitive. I know there are assistance programs for the disease-modifying drugs, for example, and I’ve heard that you can get assistance for an annual MRI from the MS Society. But will they cover three MRIs in a year?

There are still all the other costs with having MS that make pursuing treatment a financial hardship. At a hundred dollars for a specialist visit (aka the neurologist), that adds to the budget. I didn’t expect that my share of the cost for the JC virus blood test would also be $100 (since my blood work is usually free) and there was certainly no assistance for that.

Part of me thinks there must be something wrong with me that I don’t have the money for these extra $100 things here and there. But at the same time, MS is just plain an expensive disease to have.

And now I’m back at where I started, having gone through this several times before. After getting the hard sell from another neurologist, am I sure that I don’t want to try the drugs? I know for sure that I actually do want to take the IVIg treatment but probably won’t be able to.

But really, unless the neurologist himself is offering to pay for any of my treatment and associated testing and office visits, I may have to continue opting out but saying it’s intentional. I’m not going to bankrupt my family over treatments that I’m not even sure will work and might actually harm me.

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.

Push it real good

I have to come to realize that I am super bad at self-care. For a long time, I didn’t even know what it was. Now I know I’m just actively resisting it.

I thought “self-care” was some kind of Oprah phrase for affluent white women, a concept that conjured up images of fancy tea and bubble baths and fluffy $100 robes. I also thought maybe that idiotic “she shed” commercial was even attempting to explain self-care very badly: eating crappy processed snacks as you hide out in an ugly floral room. (And in reference to that commercial, which is possibly the most irritating thing I’ve seen in many years, who the hell thinks Fiber One bars are a luxurious treat, anyway? And who came up with that annoying AF phrase “she shed”?)

But I am figuring out the hard way that for me, self-care is pretty close to imposing a hospital-type stay on myself. I recently suggested to my husband that I should try to recreate the experience; I called it a hospital day at home. That would entail basically just reading and watching TV and staying in my pajamas in bed all day, having meals and fresh water refills served to me, being free to take naps as needed. Not leaving the house. Not doing any work, paid or otherwise.

He has been all for the idea ever since I suggested it and keeps bringing it up. He would definitely help me do it. And the thing is that I have a million excuses for why not to do so. I just can’t seem to do it. I would be too aware of what was not getting done during my day off. It seems like the re-entry day would be twice as bad, so I’m better off just not taking that kind of lazy day in the first place. (And yes, I think of a rest day as “lazy.”)

I mean, even when I was actually in the hospital, I couldn’t stop working. Once I was admitted and had to stay, I asked my husband to bring me my laptop so I could still get my work done. You know, in between the MRIs and heart tests to see if I was having a stroke or an MS relapse. “Fortunately”, it was the latter. But even in the hospital, I couldn’t totally let myself relax. I still stayed up too late and worked too much. But it’s telling that I still got much more relaxation time there than I normally allow myself.

I even worked while I sat with Cammy in the last hours as he was dying. Part of that was to distract myself, and part of it was because I needed the money and freelancing meant I had to work even during one of the most traumatic experiences of my life. (No days off, even when my greatly beloved cat is dying? It’s no wonder the FT freelance life was total garbage to me. I deserve days off, especially for illness or family traumas.)

When I was younger, I said I wanted to avoid the treadmill kind of life. And yet here I am anyway. Being your own boss doesn’t eliminate the treadmill. If you do it wrong (as I have) being self-employed gives you less freedom.

Part of my resistance to a hospital-day-at-home is that my bed is really uncomfortable because it’s way too squishy, so it would cause me considerable MS-related pain to stay in bed all day. And realistically, with two kids starting to drive in the next six months, I probably won’t have the money to get a new mattress for a while (unless I keep freelancing while working to save for one, which is tempting.)

But even if a magical fairy just poofed a perfectly supportive new mattress into my bedroom tomorrow, I would still resist taking care of myself. It’s the same reason I find it so hard to stop freelancing even when I also have a full-time job. I always feel like I have to push myself a little bit harder — or a lot harder.

In truth, I know what self-care means for me. It means turning down lucrative freelance projects that I know are going to tax my brain almost to the point of meltdown. It’s eating way more vegetables and virtually no processed food. It’s forcing myself to drink a ton of water all day long, instead of avoiding it because I’m afraid of having to use the bathroom while I’m picking up the kids.

It’s finding a way to incorporate moments of self-care into every day, instead of making it the last priority I only allow myself once I’m nearly at breakdown point.

It’s getting enough exercise. It’s avoiding situations and people that make me feel threatened or stressed out. It’s keeping up with a regular meditation habit.

It’s admitting to myself that I really do have multiple sclerosis and that does require making some major changes. And that there’s a link between how much I hurt and how much I do (or don’t do) the “right” things for self-care.

In short, self-care is all about finding the balance between saying no to the things that are bad for me and saying yes to the things that are good for me.

But that sounds so much simpler than it is. It’s actually painfully difficult for me.

I have serious problems with saying no, especially when it comes to people I care about or opportunities to make more money. I will drop everything to help a friend, even putting myself out there when my help isn’t asked for. I have a hard time even feeling justified in telling my husband there’s a change of plans because I suddenly feel unwell. I just have terrible boundaries in general.

Unfortunately, I’m also pretty indiscriminate when it comes to freelance work. No matter how unpleasant the work sounds, no matter how much I know it will be too much for me to handle, as long as it pays enough, the extra money is nearly always too hard for me to resist.

These poor boundaries and constantly accepting more work are the exact opposite of self-care. In some ways, pursuing a FT job outside the home is a step in the right direction, adding some predictability to my life and income, and paying attention to my own inner truth that I am too social to be happy at home. But I know from experience that just having a FT job doesn’t eliminate my tendency to push myself and deny taking care of myself, either.

I’ve always had this perception that self-care means only doing the things that feel good as you’re doing them. Going to the spa! Getting new bedding! Going shopping with the girls like in a movie montage! That self-care should be “fun” and pampering and luxurious. Like it’s a brief vacation from life that you only deserve if you work hard enough…and I never feel like I work hard enough, because “enough” for me is based solely on income. And I’m never at that point of comfort.

And actually, I think for me self-care is doing the opposite of what sounds appealing. What sounds appealing is eating salty junk food and drinking tons of coffee and burning the candle at both ends (and in the middle as well.) Staying up way too late. Competing with friends about who took off fewer days from work last year.

Going to bed early? Eating mostly vegetables? Meditating? Exercising and doing yoga? Boring. Oh god, sooo boring.

Maybe that’s a sign that I still haven’t grown up yet at 44 years old. Maybe it’s just that I’m a product of our modern 24/7 culture. I don’t honestly know why I have this deep, innate belief that whatever I’ve done still isn’t enough and I should be doing more.

I have read before that many people with MS are similarly hard on themselves. It’s hard because I’m trying to resist blaming myself for my illness, especially since many people have similar traits and don’t have MS. It’s not my fault I have MS and I can’t control it. But I do know I’m apparently capable of making it worse.

But staying well may depend on my ability to overcome my tendencies. To not feel like I’m a complete failure as a person if I don’t work every day. I have to get over my intense lifelong FOMO. When I was a kid, I resented my way-too-early bedtime because I was just sure something exciting was going on without me and that’s why they wanted to get rid of me so early. But for how long will I let my childhood rule me? It’s over.

I may not be able to do everything because of the MS, which also ramps up the FOMO. I know for sure that I can’t keep up with the over-scheduled life that is so valued nowadays. I may have to have some weekends (or even just one whole day, ever) when I’m not going anywhere, not trying to work, not feeling the stress of “you should be doing more” hanging over me.

I just don’t know how to get to that point. That will probably require something good for me that involves self-discipline that I don’t want to do, like meditation. Because being good to myself is really hard, but my health depends on it.