What about now?

The last time I really fell head over heels with someone I didn’t feel tired. Me, the one who was always tired and didn’t even know why, found energy where there was none, found ways to continuously pick herself up because body and mind were so light. Does love cure all? No, I don’t think so. But maybe the rush of chemicals released into our bloodstream when we’re in love have protective and anti-inflammatory effects (this is totally unscientific, please don’t quote me) and somehow help mitigate symptoms.

But that was a long time ago. That was before I was diagnosed.

What about now?

A couple of weeks ago I saw my psychiatrist. I told her that I’m not taking any medication and told her about the hell that’s been these past months with hospitals, doctors, new hospitals, new doctors, more exams, etc.
She told me she perceived me all alone, fighting against all these issues on my own. I agreed I’m on my own. Even the people who say they’re going to help me end up being disappointing. I told her about my mom, who said a year ago that she was going to try and know if it was possible to request a new GP and hospital transfer. That was a year ago. I eventually took care of it on my own. And I told her about my dad, who decided to play hero after all these years and said he was going to to pay for the medication without even knowing how much it costs (not a chance, dad).
It only took my psychiatrist these two anecdotes. “I see, you’ve been on your own your entire life.” Pretty much. “You’d rather not even ask for help so as not to be disappointed. At least you know you can count on yourself.” Nailed it. All my life, disappointment has been the rule, not the exception.

Speaking of which, I told her about my ex. The relationship was so disappointing (not to say traumatic in some aspects) that I’d rather stay inside my shell for the time being, even if sometimes I wished it could be different.
I’m not afraid of having someone I like turn his back after I tell him about my health issues – that would hurt but it wouldn’t be the worst. I’m afraid that he pretends to accept and understand everything alright and then starts using it against me. That’s what my ex did. When we got to the point when we started talking about future. Future together.

So I guess there won’t be feeling any less tired for me in the near future. I’m down in the trenches.

In the space of a week, two friends told me that I seem fine. One of them added “despite.” I decide that this is just a way people found not to feel guilty about not caring at all. They’re saying it to themselves, not me. “She seems fine, so it’s not a big deal that I haven’t been around more. If I tell her, maybe she won’t have the heart to deny. Who the hell wants to hear they seem to be having a hard time and they look like crap?”  I understand. Sometimes I’m not such a good friend myself and I’m not around as much as I should. I just don’t tell people how they seem in order to make myself feel better. I usually ask them how they’ve been feeling and prepare myself to listen to their answer. Because appearances are just that. And maybe I’m just a really good faker.

Down in the trenches. I lost all faith in people. And it makes me tired.

I started taking a cocktail of vitamins because turns out some of my levels are low. But no cocktail is going to help me when my work keeps piling up. My MS is a lot like work colleagues of mine who are overzealous. I’m a copy editor, and I know many copy editors who want to do such a great job they end up correcting what’s right. That’s my immune system.
I worry I may be becoming one of them. I worry I already became one of them and I’m just fooling myself. The problem with my colleagues is they’re more like language technicians. They know all the grammar, all the rules, but good literature is about breaking the rules. There are a lot of books that play with words, with language, with nuances, with figures of speech, with form – and that happens for a reason. But they don’t get it. They want it all by the book (no pun intended). That worries me. Literature should be inventive, creative, playful even. I worry what happens when you take that away. I don’t want to be like that. Maybe I worry too much. I should get another job.

On Monday I will start a new treatment for MS after months and months waiting. It’s Tysabri, so it’s one of the big guns. I’m terrified, but I also have never felt so tired my entire life. My MS is weird. I don’t have many symptoms apart from this overwhelming and debilitating fatigue, but new lesions keep popping up on MRIs like mushrooms. Maybe I’m incredibly resilient (my therapist likes to call me that) and my brain has this amazing plasticity so the new lesions don’t translate into more disability. I really don’t know. I wish this could all be over so I could take a deep breath. It’s like I’ve been holding my breath for the past 3 years and a half. There’s only so much I can take. So let’s hope Tysabri will do something for me without giving me skin cancer or PML. Hope.

One thought on “What about now?

  1. I did free lance copy editing work up until a few years ago, and I completely relate to the analogy of fixing what is right just because you get so accustomed to looking for mistakes in everything you see. And I think you are smart in that application to health. We can get really sensitive about every little thing in the body because of an illness that when things are actually going well, we still pick at what could be made better.
    I’ll be thinking of you on Monday. That’s a really big deal! I hope there aren’t any big setbacks and you only see positives, but I know it’s nerve wracking with the intense MS drugs.
    Soft hugs.

    Liked by 1 person

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