living with chronic illness- any experience?

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so... my stomach pain turned out to not be cancer.
but it looks like it's either chronic pancreatitis or a largely defunct, painful leftover of an organ from an attack of untreated acute pancreatitis.
do I need to mention that I rarely drink, and if so, relatively small quantities of erxpensive whisky- whereas these are conditions one usually gets from alcoholism?

the doctors I went to initially diagnosed me with lactose intolerance and were proud of themselves, a year of trying to figure out what I can and can't eat later I still feel horrible, and am now taking enzymes not only to replace lactase, but also all the others. And painkillers. I'm losing about a kilo a month [currently 79kg at 1,89m (174lbs at 6'2")- which is in the "normal" range of the BMI, but the BMI is brutal for tall people. I look skinny] and am showing signs of malnutrition, like fatigue and vertigo and stuff like that. The enzyme replacement is alleviating this, to some extent.
so, I'm in treatment and everything, but while I sucked at lifeskills before, I now feel... overwhelmed.

Can anyone tell me a story of how they learned to deal with things like that?

I am still in a long term recovery from a car accident after 8 years. The keyword in the first years was pain and a lot of it. Getting a more accurate diagnosis of specific problems is a good thing. Once you really understand the problems and can take correct steps to minimalize or improve the situation you should in fact see improvement. But it can be a very slow trajectory. In my case years. But at some point you hit a tipping point, where suddenly more is good then bad and things seem more worthwhile again, and it can even get better from there.

So lots of patience and thinking long term. Dropping meds or changing to less strong ones can also make you feel better in time, so that should be a goal. Especially if any have any fog, or mind effecting side effects. However don't drop things just to drop them if you still in fact need them.

I've had Ulcerative Colitis since I was 8. Well I got diagnosed at 8, but I was sick since 7. Over time, it becomes a new normal. Frequent Dr visits and blood tests become routine. My mom had to shove my first pill down my throat, a few years later I could take 6 in one gulp w/ a bathroom cup. I still don't deal w/ certain aspects well. Part of this is due to trauma when I got diagnosed. (See my sigline about ptsd.)

Having a good Dr is critical. Don't be afraid to dump a bad doctor. Obviously, sometimes that isn't possible due to location or insurance, but if you can, you should. Your health is more important than their ego.

Having a support system is helpful, though not all of us have that. Some people find comfort in religion or spirituality, though others lose their faith after a chronic diagnosis. Mediation at least is a good idea. I like to just stand outside, look at the landscape and feel the breeze on my face sometimes. I'm lucky to have a good view from my door, if you don't, maybe you can find a special place or a picture that you can use to visualize.

Learn to forgive yourself and not put too much pressure on yourself. If you don't have the spoons, you don't have the spoons. If you need help doing things, it's ok. Pushing yourself too hard will just make you sicker. I've done that too many times.

I hope you feel better. Good luck.

hmm. I understand that perseverance is the only way - was there anything that helped you, specifically. I mean, I understand that one can get used to everything, over time, but what is it that allowed you to keep or regain hope in the face of struggling just with everyday life, and the prospect of finding a job you don't hate and having a life you don't hate, while it all just seems... hard enough already.

Special Interests. When pretty much limited to bed, I got all the Tolkien books on CD and listened to them over and over. Once I got semi mobile I indulged in my interest in toy soldiers and focused on my Lord of the Rings collection, and then making conversions and sculpting some originals. Then after a year or two I moved outside to try and start up doing yard work and landscaping again. It was pretty pathetic at first and I had to weather many set-backs, but time brought relief and I would go at it again. Later when I regained ability to sit I found a computer game I liked and tried forums etc. I think by year four I saw a distinct improvement. You don't see it sometimes day by day, but taking a longer view you realize how far you have come. Now I can dig, cut down small trees, build walls, etc.

I know those are not going to be your interests but hopefully you have your own, or can look at adding some. These are things that tend to take you to your 'happy place' to use the silly but not totally inaccurate term.

thanks, I do have my own. Making animated films. But I'm finding it hard to financially sustain myself in the meantime, as I sort of opted for a stupid, insanely time-consuming special interest... Currently I'm about to get fired, as I'm a bit distracted from my day-job, which is also boring me to death and threatens to ...destroy... my interest in my special interest.