Friday, 28 October 2022

the crap gap - real or fake?

Hold your horses! I know that for many people with MS who take disease modifying therapies, we can all feel like crap in the period immediately before our next dose. A reminder:

The Crap Gap: the period immediately in the lead up to another round of MS medications, particularly infusions, when the patient begins to feel particularly fatigued and "ready for it." Psychosomatic according to some neurologists, it nonetheless feels particularly real to the patient. 

When I was injecting myself with Rebif three times a week, I'd always felt like crap on my in-between days. I was taking Tecfidera so often that I didn't have time to feel bad but going to Tysabri infusions every four weeks I always felt I was ready for my next dose. 

The fact that this didn't alter when I changed to infusions every six weeks didn't really change my thinking. Neither did the fact that when I mentioned this to my neurologist and he told me categorically that it was all in my head. 


As I write this I'm currently having my first full dose of Ocrevus. I had my initial two half-doses in November of 2021. 

So in total, it has been an eleven months wait.

If the crap gap was real, I'm pretty sure I would've felt dreadful yesterday. 

Now the last year has been so uncertain. I've had no idea when or if I'd be getting my next dose of Ocrevus. So I could well have unwittingly programmed my body to power on through because of the uncertainty. If I didn't know when it would happen, how could I feel crap in advance? 

The only problem is, I've had this date in the calendar for the past five weeks

Please know that I fully understand that this is only my own personal experience. And when I've felt the crap gap in the past, I've known that it was real. 

But looking at my various DMT timetables over the years that doesn't make sense. 

I'm a firm believer in the placebo affect. And just because something isn't physically real, if it feels psychologically real then to all intents and purposes, it is real. 

I just think it might be a little less terrifying for anyone newly diagnosed or just starting a DMT to hear something like, "Some people start to feel like they're a little run down immediately before they go in for treatment. But it's nothing to worry about." 

As opposed to, "Oh god, I feel absolutely awful before I have my infusion." 

Similarly, the second part of that statement is, "But I feel amazing as soon as I've had it." 

What if before my first/second infusion I felt like crap, and then I didn't feel any better afterwards? What would that do for how I feel about my DMT and / or my future with MS? 

I suppose if the idea of the pre-infusion slump followed by the post-infusion boost makes you feel better, then by all means continue to do you, boo

But based on twelve years of research, for me personally, it doesn't exist. And I'm cool with that.

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