I am learning more and more about this cursed disease with each passing day.
On one hand, I hate infusion day because there’s nothing quite so good at reminding you that you have a chronic disease than being put in a room early in the morning with a bunch of other people with the same chronic disease hooked up to IV’s, sitting under the insanely bright lights in a room that tries very hard not to be totally depressing and somehow fails. On the other hand, it’s the day I learn new things that make me a better person with MS.
So now with infusion number 4 I’m starting to notice some things about the treatment cycle. Since my doctor told me not to expect much for the first six months of treatment, I had this idea in my head that the drug had to somehow build up in my system until I reached the level where it could stop the shit and make my life more normal. In my head, I was being filled up little by little and I needed to wait until I reached maybe my ears and then i would be full of Tysabri and things would kick in and I’d just need to get topped off every month. Easy peasy!
Guess what? It totally doesn’t work like that!
It’s more like getting gas in your car. Sort of. But here’s how it seems to work (emphasis on “seems” because it’s not the same for everyone…more learning)…On infusion day, you get filled up with the drug. It makes you feel like shit for that day and maybe a day or two after. You feel super run down. My legs, for example, feel like lead and I feel a bit like a zombie today. I got home this morning and promptly went back to bed. I felt like I could sleep for the rest of the week.
But in a few days, the juice kicks in and I start to feel a little better. Now that hasn’t really kicked in so much for me yet (only on Infusion number 4, and it’s too soon for me to feel much better or so I’m told) but that’s how it’s supposed to work. You get a boost. You feel less fatigued. Your pain gets better and your legs work a bit better. Then it starts to wear off as you make your way to the next infusion day. So I’m gonna say around day 23, you start to feel like you’re running out of gas again. Your engine starts to sputter. You fee like you can’t move and like you can’t get enough sleep. You may not feel much like leaving the house in these days. Then on day 28, it’s infusion day again! Hooray! And the whole cycle starts over again.
I think. I’m not entirely sure. I guess I will learn how to live my life around these cycles. Days 5-17 might be the sweet spot! Days 26-28? Not so much. This is manageable! I can do this….I can do this right?
One of my fellow Infusees, another newbie, told me that infusion number 4 was the magic one for her. Her first three months she felt like shit and threatened her doctor that if she kept feeling so bad she wasn’t coming back. But after infusion number 4, things seemed to kick in and she felt much better. Like noticeably better. I haven’t felt noticeably better so much yet. So I listened to her talk and I felt hope rising in my heart and I thought, “Please universe, make number 4 the magic one for me too! I have a job! I have work to do. I need to feel like a real girl again!” In fact, you could say I am desperate to feel like a real girl for more than a few days at a time. Life, as it turns out, doesn’t wait for you to feel better. It just keeps happening.
Hope is a hard thing for me. I’ve admitted this before, I think. I appear to be a very optimistic bright-side kind of person but I am totally not. I’ve lived for a good portion of my life feeling cursed. Call it the young widow’s curse. I’m sure I’m not the only one who’s experienced this phenomena but that doesn’t make it any less balls out crazy.
Believe me, I know how obnoxious it is. Admitting it is super embarrassing to me. I should feel blessed! And grateful etc etc etc. for all the many gifts I have that other people don’t. I am blessed in so many many ways. But when it comes to big, life-y kinds of things…I have believed in my heart of hearts that I am cursed. It’s insane, I know. I’m in therapy. Give me a break. But the curse rears it’s ugly head every time I start to let myself hope anything REALLY good will happen. It reared it’s ugly head today as my fellow Infusee was telling me she was SURE I would be amazed after infusion number 4. It was gonna be awesome. I would feel like a real girl again. At least for 23 or 24 days.
Then everyone chimed in, “You have to be positive. You have to believe it’s going to get better and it will! You have to remember it could always be worse! Cancer! Other shit! Sickness and tragedy is everywhere it can always be worse! Kids are dying! Babies are being killed! Horrible awful things are all around you!!!” (they didn’t say these exact things…but in my head, those are the words I heard). And I know they are right. And I know I need to get my head right.
I promise I will get my head right.
Learning how to hope is a big goal for me. Good things will happen. But right now? I’m going back to bed.