This week has been a trying week!
On Sunday my period started two days early which – okay, good at least it’s not late which is used to be a common occurrence so I rather they start early than come late. But means that I have steady stomach pain for however many days I bleed and that’s felt like an extra cruel punishment on top of everything else ever since I got sick in 2008. Then on Tuesday Crohn’s Disease decided to join in on the fun and cramp really well! I was SO much pain for two hours before the pain meds kicked in – cold sweat, white face, weakness and feeling like I’ll faint, I got it all 🙁 Then after the pain meds kicked in, pain gone but felt still weak and weird and because it happened in the evening, a little of the weird feeling continued the next day too. This happens sometimes during my period since I got the Crohn’s diagnosis, so luckily I knew that the meds would help and I just had to wait for them to kick in so I didn’t really worry about whether I should go to the hospital or anything like that like the first time it happened.
Then on yesterday (Thursday) a migraine and lower back pain, and last night again a mild migraine and today Friday also the same lower back pain. I don’t get why the back pain all of a sudden – I used to have bad lower back pain in my 20s when I had too heavy periods and even in between, but when we got me bleeding less the back pain got better too and I’ve only gotten a little bit of a back pain during my bleeding days for almost two decades now. But yesterday and today it was bad again like it was before, although it has eased up the more I have moved. I don’t think I’ve pulled anything, but maybe I’ve slept in a bad position or something? I don’t feel it when I lie down but when I get up in the morning, I feel shooting and nasty twinges at first and then it starts to ease up but doesn’t go completely away as I move about. I hope this back pain doesn’t become a feature outside my period – I don’t want to have to deal with anything more – at least, not any more pain! Fingers crossed.
Other health related things… after I had the iron infusion in March, I noticed that my eyes focus better and don’t get what the optician and my doctor told me was “age sight”: that eyes get tired faster and it’s hard to focus them when you get older. I used have many times a week trouble focusing my eyes even first thing in the morning even though I had slept through the night. This went on a couple of years and nothing helped, not even getting new glasses. But after the iron infusion, it stopped happening until it started happening again now in September. My hand joints also stopped hurting after the infusion, and haven’t restarted yet. I don’t know what my ferritin is currently – in May it was 80, and in March before the infusion it was 20. At least ferritin of 100 is recommended for IBD patients in literature here, but that directive isn’t followed at all. I’d been trying to raise ferritin by taking oral iron supplement for years but it didn’t help. I didn’t think the infusion helped with the exhaustion, but maybe it did a little bit – because the last couple of weeks I’ve been terribly exhausted again, like I hadn’t been for a little while but I can’t swear the last time was before the infusion. It also could just be the legal stuff I’ve been dealing with (re: the adoption which I’ve written in another post) the last two months, and my Mom’s health stuff as well. It’s been mentally hard since the start of August so that could a major reason for my exhaustion too. Because I’m a spoonie and don’t have enough energy even for normal days, anything extra, whether it’s physical or mental, can hit me hard and mostly it seems to show as exhaustion and tiredness.
Sometimes I feel bad about always posting bad things when I do these health updates, but the truth is that I don’t have good weeks. My weeks are “okay” usually, and “bad” more often than I’d like. When days and weeks are “okay”, there’s nothing to write about. They’re just full of just routine and usual typical things which in my case, are either neutral (like going to grocery shopping, paying bills etc. etc.) or some kind of negative (the adoption thing, or when I have to deal with bureaucracy of being sick and/or unemployed etc.) or major or minor pain (I have pain every day, just the intensity and location varies)… things that don’t stand out of the rest. I’m so limited in what I can do due to pain and exhaustion that I don’t do things like go to concerts or movies or see my friends weekly that’d be positive to make updates about. I’m mostly limited to just being home on my own.
Good days happens sometimes but often I realize it actually was a good day only the next day (because if a day has been good but then I get a migraine in the late evening, well that doesn’t feel much like a good day anymore then because you mostly just remember the throbbing head pain) when I see that I had no notable headache the day before. And good day doesn’t mean I did something out of the ordinary – it just means I had notably less pain than most days. A truly good day is when I have no notable pain *and* I see my best friend or Mom, and these days are so rare – maybe only once or twice a year now. So “okay” is my reality the vast majority of time but it does make for boring updates. But actually I’m grateful for “okay” because back when I didn’t have Crohn’s Disease diagnosis yet and my headache/migraine was much worse than it is now, “bad” was 100% of the time for many, many years. So I’m okay with “okay”. Although I hope for more good days!