Today’s been a lousy day 😥 And I also had a scare.

Migraine attack slowly started during the night, and trying to sleep it away didn’t work this time. It has eased up, but head feels nasty and like it would start again at any moment. I’m also sweating, sort of out of breath and feeling like I’ve been wrung inside out. Really fun because I had to go grocery shopping and the pharmacist today. It’s weird that several times now when I’m having a migraine attack, my body seems to go weird: feeling hot and sweaty, feeling out of breath and breathing a little heavily/panting lightly. And often my it seems to my bowels activate and I have to go to the toilet several times. I can’t tell if that last one is actually because of Crohn’s Disease – it could very well be! But I’ve read that migraine is a whole systemic thing, so maybe it can trigger bowels to go often too, I don’t know. Either way, it’s bothersome.

Rambling about the scare bodily functions caused me today and the toll daily taking of pills cause. And how the body seems to go out of whack only at inconvenient times. All behind the cut.

My pee has also been an unusually bright yellow today, like it was back in 2008 three weeks before all this sickliness started. That quite scared me today. When I had the liver and other problems in 2014 and was hospitalized for a week, I can’t remember if my pee was yellow (I think it was) then but my poo sure was, and although the liver problems were able to be resolved at the time, there’s a danger of them renewing so I’ve been told to keep an eye on poo and call in if poo goes yellow again, in addition to having to take bloodwork every three months to check on the liver. But I can’t remember if I’m supposed to keep an eye on pee too! Other than to make sure I drink enough. Some of those liver bloodwork numbers have been a little elevated (but “tolerated”), except at the end of February they had switched around – AFOS is usually normal but now it was elevated, and ALAT which is usually elevated was now normal. The Doctor couldn’t say why, but that we need to keep an eye on it and it continues, do some MRI I think it was. And now today the yellow pee thing. I’ve also had to poop four times today which is within my normal range, and I checked the color and so far it hasn’t been yellow but also within my normal range. Which is a relief. But it’s a scare and a source of stress because now I have to keep checking how this develops and try to decide if/when to contact my hospital.

Also, it’s Easter starting tomorrow and until Tuesday so a bad time as far as healthcare goes. And the nurses have been on strike since April 1 – that ends today at midnight, but the strike will continue again next week if employer and employees can’t come to an agreement. I’m all for the nurses on strike – their paychecks are bad, working conditions poor and they’re always understaffed – but at the same time for me as a patient is a really bad time to have to go the hospital if that becomes necessary for me. I’m mad at the employers for making the strike necessary. Fingers crossed pee/poo doesn’t develop into anything and I won’t have to go to the hospital. My next bloodwork should be in middle-to-late May but so far I haven’t gotten the letter. Usually I get it right after the previous one, but now there’s the strike and COVID-19’s been fucking hospitals up so everything’s delayed, I understand that and there’s no hurry because the lab visit is at least a month away still. But still!

Why is it that every damn time my body decides to go out of whack it’s always on early morning before busses run, or on the weekend, or during some holiday or a strike?? Why can’t you do it on a nice working Monday, body? Outside of holiday season and when there isn’t anything out of the ordinary going on?? Must you be so inconvenient?

I’m so tired of having a nice, steady little stretch of time where my symptoms are steady and managed and I only have to think about them a little – and then suddenly having a scare because some lab work is alarming, or symptoms freak out. I know it’s all part and parcel of having Crohn’s and other chronic illnesses, and actually everything’s been pretty steady for about a year. Except that I’ve been exhausted (but that’s nothing odd – I’ve been exhausted for a decade now), and then getting to try out Ajovy and given an iron infusion – both of which are good things, but not exactly restful because with all new drugs you take you have to keep an eye on any side effects they might cause and that might require action, and what, if any, good effects they have on my health problems. So there’s always something going on, you can never just rest and go about without care.

People who don’t have to take pills every day, often don’t realize how much mental effort and energy just that takes. You have to remember to take the correct pills at correct times: I have to take pills three times a day, every day at certain times. Then there is also the medicinal fiber supplement I have to take at a certain time each evening. Then there are also the optional, additional pills that I take only as needed when my symptoms indicate it – so I have to realize in time that pooing is going towards diarrhea, and I need to take Lopex to prevent that from happening. And that yes, this headache is actually worsening into a migraine, instead of my normal background headache, so that I may the migraine pills early enough for them to do what little good they do. So I have learn my symptoms, how they develop, how long it’ll take for a said medication to take effect so I can time it correctly. I do all this every day, almost instinctually now and as long as symptoms are steady, I don’t actively think about it much, it’s just in the back of my mind because if it isn’t, I’ll find myself on the toilet for hours or in the middle of an horrible migraine attack. Getting to this state took several years of trial and error, and paying very close attention to my body and it’s behaviour. And even though it’s easier now because of all the work me and my doctors have done to get my symptoms under control as well as possible, a lot of my energy goes into maintaining that. There’s also the guilt of needing to take so many pills for my migraine – Crohn’s and migraine are very bad things to have in the same person, because Crohn’s makes it so that the bowels don’t like NSAIDs or a lot of other medications, and chronic migraine means taking a lot of pills. I’m allowed NSAIDs by my gastro doctors because triptans and other migraine attacks meds don’t do anything for me, so it’s NSAIDs or nothing for me and when I try to cope without NSAIDs, the migraine attacks don’t go away at all even with preventives I’m on. So all the various medications I use takes a lot of energy and worry and balancing things.

That got more rambly than I meant to be. Guess I had things to say, usually it helps to write and post them out to get them off my mind. I’ll stop now!