Get it together

I’m not sure if I’m getting worse because I’m really getting worse, or if it’s some other weird combination of causes.

Is it because of the meds I’m taking to address pain and muscle spasms? I wonder if they’re actually making me worse. I’ve been taking them daily for three years, but it’s only been in the past couple of months that I feel so bad.

Am I worse because I’m not exercising as often? I keep trying to push myself to walk more and generally move more, but my legs feel stiff and tight. When I go from sitting to standing, my legs don’t want to move, it hurts and it’s hard to keep my balance.

There’s also the considerable guilt factor and second-guessing myself now that I’ve filed disability. Am I really that sick? Could I actually work a full-time job somewhere?

I mean, yes, I would say that I am indeed actually that sick right now. No faking about it. And no, I don’t think I could work full-time right now.

But. There’s the part of me that thinks maybe I could undo this. If I stopped taking all of my meds and let them get out of my system, did some type of consistent dedicated exercise routine every day, found a way to practice intermittent fasting on a regular basis, maybe all this would go away.

It’s that little voice in the back of my head that says I’m just not trying hard enough and that’s why I’m not getting better.

Really, what freaked me out was reading a very long thread in one of the MS support groups on Facebook. The thread was about how many people were still able to work full-time. Easily, most of them still were. Granted, there was a sizable minority who said they were on disability, even if they had once had a full-time career and had to give it up.

It freaked me out a lot that I was in the category that couldn’t work full time. More than freaking me out, that was actually terrifying.

But at the same time, I’ve had symptoms for 17 years and just didn’t get diagnosed until 2013. I had periods then when I was working full time or in school full time. It wasn’t until last year that I lost enough function that it isn’t possible anymore. And I still thought I could work full time until I actually tried it a few months ago.

Those respondents include people who have relapsing-remitting MS and may go months or years between relapses. They may have a very mild illness like I did for many years. A significant number of people in the group haven’t even been diagnosed with any type of MS at all and just think they might have it. The fact that I’m now too sick to work full time doesn’t mean I always was — or that the people who are currently well enough to work will always be so.

But if I’m too sick to hold down a full-time job at 44, how do I know I won’t be one of the people with MS who’s in a nursing home at 54?

I know people 5 years older than me who are going back to college. I’m supposed to be in my prime earning years. And instead, I feel like I’m just giving up, saying “yeah sorry, I can’t work, can’t learn anything new, I’m out of the game.” That seems really damn final. And that’s depressing.

I don’t honestly know what my next steps should be. This disease is really unpredictable and treatment is largely a guessing game.

Should I get off all my meds and hope that my pain goes away once I adjust to not being on them anymore?

Should I push myself to exercise more intensely, no matter how much it hurts or how at risk of falling I feel? Should I go on a very restrictive diet? Maybe all of the above?

Or should I just wait until the weather cools down and my symptoms go away on their own? I’ve been in a similar cycle in August many times before. Most of the past six years actually. I feel like I’m going to need to be in a wheelchair soon (I was actually eyeing the canes at the store the other day and considering one) and I can’t think clearly enough to pursue new work.

But if the pattern holds, I’ll be mostly fine again by November. Able to walk easily, able to think clearly again.

I feel guilty that my husband had to get a second job, all because of me. I’m only 44; he should be able to count on me to earn more of an income.

Am I falling back into denial, thinking that I have more control over this illness than I really do?

Or am I giving up on myself (and possibly hastening my further decline) when I have a lot more in my power to make this better?

Do I believe my current reality? Or do I believe the documentaries and random anecdotes that say that a symptom-free life is possible if I just fight hard enough to adopt a more extreme lifestyle?

So many questions, no clear answers. I mean, I guess disability will be good because it will ensure that we can survive during the 3-4 months every year that my brain just goes kablooey. But there’s that nagging doubt that I could make my brain healthy again all year long if I just did the right things.

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