Here’s to Hoping 2

A while back I wrote a post about hope (Here’s to Hoping). I had just started to take Gutron in small quantities, and the results seemed promising … hence, the hoping. So I thought that now it was about time to evaluate.

For 14 days the effects of just taking 1/4 pill (1.25 mg) three times a day was amazing. I  felt like my old healthy self for at bit, which was amazing. Then from one day to the next the effects wore off, and all I was left with was side-effect. So I increased the dose to 1/2 pill 3 times a day. Increasing the dose went well, and some of the benefits didreturned; although it was far from the exiting feeling the first few weeks. I tried taking a larger dose, but that still made me very sick, so it was clear that I had to move forward gradually.

After three weeks on that dose the effect started to disappear once again (and mind you, when the effect disappears it is in no way a gradual process, from one day to the next they just stop working, resulting in a major physical crash). Once again I increased the dose, now to 3/4 pill three times a day. This time I was very sick for two days with only side-effects before the medication’s benefits finally kicked in. But thankfully they did.

I know that the first 14 days of bliss will not return. By now I know my body well enough to know that it can act surprisingly well if it is challenged but that it never lasts very long. But of course I still hope … who wouldn’t. For a short time, it was like getting my old life back from before I got sick. And no matter how much I tell myself that the return of the sickness fits a pattern I already know, it will still be a disappointment.

But I have to face it. Gutron does not cure me (not that I thought it would). And the side-effects are numeral: stomach ache, the feeling of burning skin, limbs falling to sleep again and again (they even sleep when I run!!! Feels so weird), distortion of my sense of taste and smell, sleepiness … just to name the most irritating. So should I stop taking them?

Well, the mind is a funny thing. If I should just evaluate the experience from how I feel, I would say ‘dang no, this is bad.’ But lucky for me, I have learned not to trust my intuition. Yes, the side-effects are numeral and the effect is not as big as I hoped. But looking back at the experience with only my own feelings as guide it gets too colored by my disappointment that it did not cure me. And the reason I can say this is that I keep a symptoms journal. Or in my case I use Symple’s app to record my symptoms every day, and it brilliantly provides nifty graphs for my symptoms to give a clearer picture of how I feel. I know I cannot  estimate how I feel, because I feel like crap all the time. So when I need to know, I look at the Symple stats. Trust the numbers not the feelings! And in this case they show clearly that Gutron decrease almost all my symptoms. They do not disappear, but overall they are all half as bad. I have headaches half the time as before. I have attacks half the time as before. Etc. Etc.

Reading what I just wrote I realize that what I am trying to tell myself is: sometimes I get too caught up in finding the thing that cures me completely that I don’t realize the benefit in what I got. And that is not something I should beat myself up about because that is just how it is being really sick and desperate. But thankfully I have an aid like Symple (I must emphasize that this is not a commercial for that specific product, there are many similar apps out there, that works just as fine), which makes it easier to remove the sickness’ mist from my eyes and make me see my situation clearly. Yes, the situation is not good … yet. But Gutron makes my situation better.

So maybe I feel like my skin is on fire and my stomach is about to implode, but I am better overall! I have more energy! Which means I have more time! But I lost track of that in my own feelings of disappointment. I’m used to feeling like a living corpse all the time, so what if I need to feel like a living corpse on fire just to get some more out of the precious time I got?  And who knows, maybe the doctors can help me battle the side-effects.

It’s now been three weeks since my last increase in dose, so I am a bit worried that I have to increase once again soon. But I gain nothing out of worry. Instead, I will just look at my symptoms stats and be happy that at least I can see some improvement. Being a little better is after all better than nothing … even if stats have to show it to you. And well basically I’m just back to hoping again … but that’s how it is being a Spoonie 😉

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