Oh. Oh dear..

I was feeling extremely positive optimistic at my GI clinic appointment last week, believing that my ‘good feeling’ would last into August and beyond; that this combination of therapies was working its magic after months of just trucking through the crappy pain filled days.

Sadly, it stopped abruptly on Sunday, 6 days post-Infliximab, not 24 hours after my usual Saturday dose of Methotrexate (MXT).

It started with not feeling particularly hungry; as it always does.

Then I felt rather nauseous; which 9/10 can be contributed to not eating or drinking enough – especially as I’m finding it most difficult to do this whilst at home, on the weekends, with a house full of people milling about / around – but I still wasn’t really keen on anything we had. Maybe I’d perk up when we went out?

Off we went to a Charity Football match; to yet no avail feeling at all hungry. I should have been starving; I hadn’t eaten since dinner the following night! We were sat outside with all the drinkers and smokers; low and behold a headache was brewing. Again, could be from lack of fluids, food, hormones; could be anything at this point, right?

That quickly developed into a thumping and throbbing headache that two paracetamol couldn’t help. We finally came home, I drank lots of water and had a bath. Nothing. Got into bed and watched a film whilst dozing on and off – with the boyfriend beside me, trying to be helpful but just annoying me with his cheeriness – that didn’t help either. That headache lasted into Monday morning, making work particularly unbearable – full office of lots of people talking and complaining, typical – coupled with so many bathroom trips.. I was quickly loosing it.

I admitted defeat. Doesn’t seem like me, does it, to give in so quickly? But I was exhausted. And most of all, disappointed.

Because the week prior, I missed two doses of my folic acid. The third and final one, I was very late taking. I’ve missed folic acid doses before, without any repercussions. But I feel so awful and guilty about not being a better patient and following my strict drug regiment.  I know that this was a contributing factor as to why I was feeling rubbish. Not that I let on to anyone at home. That, combined with Infliximab at the start of the week – even though they lower my dose because I’d lost so much weight recently (being, the last 3 months, since my last ‘weight check’ was done) – I was bound to feel rubbish. Shit, even.

And we all know how easily things can spiral out of out control and how easy it is to ignore something so simple and basic. But we need to remember we are not like those who aren’t chronically ill; we have to take care of those smaller parts of life;  like not eating, not feeling hungry, not feeling strong enough to cook, to want to drink, to want to go outside.

It has been a struggle to get myself to work the last two days. I’ve felt okay to drive but I’m concerned that I might loose focus and forget something – like not brake, or miss a set of red lights – which probably won’t happen. But I don’t dare admit that to anyone out-loud. I find my eyes going blurry at work, and I have to really force myself to concentrate on the screen. I don’t know if any of these are ‘normal’ or not.

So to avoid feeling rubbish next week – already preparing, always ahead! – I’ve moved my folic acid reminder and time of my dose to evening. So 1) I don’t forget. 2) I can take it with food AKA dinner and 3) I can just plod off to bed afterward, or whenever. Let’s see if that has any effect.

Being unable to stick to this very simple and very easy – ‘simple’ being that its one tablet, three times a week and ‘easy’ being that its such a small tablet too – fills me with annoyance. You can’t be bothered to take three teeny, tiny tablets, three days out of seven? Really? It is what protects you from being more unwell, you moron! If I can’t do this, how am I expected to do anything more ‘hardcore’? Am I really not down with my routine yet, it’s only been three months I’ve been doing this!? I just feel a fool.

I know, I am being hard on myself. And it isn’t too much of a big deal, but to me, it is. I should be a better patient. I’m good everywhere else, why is this so ‘difficult’ to do, manage, maintain? Is it because I’m not being motivated to take it? Do I seek others approval for being ‘good’ at being sick? That’s just utterly twisted.