So traditionally, the fall and winter times have been the hardest times of the year for me and my ulcerative colitis. I can’t really say that I remember a flare up coming on during the summer months. But…maybe there was one that I just don’t remember since 2008(when I got the UC diagnosis).
Either way, the winter time is coming really soon. Right now, I’m in the Czech Republic living once again and it gets dark at 4:30 pm, cold as the opposite of hell nearly all day, and barely any sunlight. No joke about the sunlight, until Friday, it was 13 days of overcast grey with zero direct sunlight. But, I know it is not just me. And unfortunately, there are alot of UC’ers who are also in the middle of active nasty flare ups right now. That is 100% beyond a shadow of a doubt zero fun, scary, not even close what you want to be dealing with during the holiday season (or any season for that matter), and hard to explain to some family and friends since nobody knows what a UC flare is like as well as a UC’er. So with that said, I can’t sit here and complain…yet.
My health has been as close to amazing as I can remember, and I’m going back well over a decade in review when I say that. Definitely I don’t remember feeling this good since my diagnosis. But although there are over 200 stories of mine on this website since (you can read those here if you wish), it might help to explain how I score “feeling good” and what types of metrics I use to evaluate that. Because I’m pretty sure we all have different metrics for deciding “how we are feeling”. And if you just are getting out of a nasty 10-20 times a day flare… getting down to 3-4 times a day in the toilet might seem like a major win…
So, here is how I score the “how are you feeling?”
- Sleep the past several weeks? (10 possible points)
- Sleeping through the night, and feeling rested in the morning (+10 points)
- OR… Not. maybe because instead of sleeping thru the night… waking up several times a night, difficulty falling asleep, not rested in the morning ( 0 points)
- Regular with the bowel movements the past few weeks?
- Yes, 1-2 day and similar times (+10 points)
- No, all over the place with timing, can’t depend on it (0 points)
- Stool Check the past several weeks on average
- Hard or darn near hard (+10 points)
- Nope, not hard, soft and scatter poops often, or some other variation but not hard or darn near… ( 0 points)
- Happiness when falling asleep (+20 points)
- 9 out 10 past nights fall asleep with happy thoughts in the head (+20 points)
- Too often falling asleep with other than happy thoughts (0 points)
So that would be a total of 50 possible points. Right now, I’m at the 50 out of 50. And I’m super happy about this, and I know it can change very quickly if I’m not careful. And unfortunately, I can be as careful as can be, and it can still go to hell in a matter of days. That’s the reality, but, even if it gets ugly and go sideways or backwards, it can also return to the happy state. That’s the nature of our disease, and that seems to be the nature of so much else, at least for me.
What’s also interesting, is we can all have our own unique measurements of what “feeling good” is. And no doctor, friend, parent, or anybody else can say you are wrong… Nope, you can decide that one. Always. When you are a UC’er and you are feeling good, that’s is a great day. Period.
Best to all of you, especially if you are in the northern hemisphere and have traditionally have a tuff time with these months and the season change, and especially if you are also dealing with covid related tuff times, and MOST especially if you are in a difficult flare up right now while you’re reading this post.
It is hard to think of too many things in the world that are worse than an ulcerative colitis flare up, but as someone who has suffered through several of some super whale killings in the toilet bowl flares, I can say for sure that they don’t last forever. And sooner than you think they will be overcome by you. And that will for sure make you feel good once you are out of that.
For the American’s celebrating Thanksgiving this coming week, enjoy yourself and perhaps your family and friends if they are near. I’m not going to be doing a traditional turkey bird night this year, but maybe a chicken bird at home (in frigid Prague). WIshing I could be on the other side of the Atlantic with the fam and friends, but it just don’t always work out. So enjoy if you got it.
Thanks for reading,
(if you are interested in some more stories and UC related conversations, you can join the iHaveUC newsletter here.)
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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