Chronically Ill in University: Crohn’s Disease Awareness

I’ve tried to write this post many times, but the words just don’t look right together. I’ve already missed crohn’s disease awereness day two years in a row, so that says something about my qualms about writing this. But I think I’ve figured out what I want to say, or at least some of it.

Right now, today, my disease should be under control. You can live a normal life with crohn’s disease, they say. I was relieved when I got the diagnosis, because it only put words to something my body had been going through for so many years, so much time spent searching. And yet now, today, I am about to fail two out of five exams this semester. I am in the likely best university in my country studying physics, in my first year. And since before corona started I have been so ill, in various shapes, but of course I couldn’t figure out what was going on because everything shut down because of corona. (I also wasn’t allowed to get an actual corona test.)

Yet, going through so many years with people telling me that my pain, my disease, wasn’t real – that’s what I fall back on. That’s what’s in my head, trying to shame me into pushing through even though I know that’s not true. I know that now, I knew that then. Yet crohn’s is an often invisible illness, I’ve often looked my “best” right before collapsing or having to be admitted to the hospital or spending months bedridden in pain. I was complimented on how I’d lost weight, even as it was harder and harder to keep up in taekwondo class because spinning made me feel like I would faint and as I laid down on my stomach on the floor after push-ups, huge symmetrical blue and purple bruises would blossom on my hips and I had no idea why. I’ve made so many coping tactics, some good, some maybe not so, but I hate it when people critic them as if they know where I’m coming from.

I’ve made so much progress. And it more often than not feels like I regress again, every time I get sick with something new, or my crohn’s gets worse, but that’s not the right words to use. I don’t regress, because I’m not in control of it. And yet, it’s me that have to pick myself up again every time I lose muscle, everytime I have spent a month nearly dying, everytime I watch my brother go through the same fucking illness as me. And up ’til this point, there’s been little help to get compared to the criticism I’ve had to fight through.

Maybe I didn’t manage to figure out what was wrong and fix it in time for these last two exams. I did manage to pull myself together and focus enough that I completed the first three. It’s been a hell of a couple months. The only reason I’m hurting about ‘failing’ right now is that I’ve been in more pain before and still pulled through, but I now realize that I shouldn’t have had to. And with that ounce of compassion for myself I’m going to let that shame go, and not see this as a sign that I will never be able to do this. I will pull myself up again alone, this time as well. Eventually.

Say fuck you to everyone who expects you to have a completely normal life with this disease. ‘You can live a normal life with crohn’s disease’ does not mean you have to live up to that, it’s to not exclude possibilities when you feel most hopeless. And I will fight in any way I can again anyone else feeling as hopeless as I’ve been made to feel about my chronic illnesses.

I made this embroidery staying up too many nights trying to keep sane before my painkillers set in and the stomach pain withdrew enough to let me sleep. Here’s to hoping for a better and more energic summer than spring.

Going to University with Chronical Illnesses | Planning #1

This is not a how-to post and I unfortunately don’t have much advice to give. I would actually love to hear some advice if you got it. But I still want to make a post during this start of university where I just discuss my worries surrounding starting this new, stressful-for-normal-people every day.

To say something about how I got here; I really fought for an education. I think a lot of people with chronic illnesses and other disabilities have to, to a degree, no matter where they come from. Even though I live in Norway with protected rights to education, there was so much working against me to get here. But that is its own story. The thing is; I got here. I’m surprised and relieved.

I love the people surrounding me and how smart they are. I love taking it all it and hanging out with people and barely grasping what is happening in math lectures. I’m on a roll, about to be caught up mostly in different aspects of my life. A balance is reachable! And then my body will shut down. It did this week, for multiple reasons. And while I’ve been able to take a break from thinking about illness until now, even though I’ve had a base-level of pain with me every day (some days worse than other), now I have to call doctors and switch one of the many medicines I’m on and keep this part of my life going with filling out forms and sending letters and … it’s a lot.

Some of my fellow physics students are the cliches of having their head so deep in a book that they forget about the world around them until someone brings them coffee/food/calls and asks them why the hell they’re not meeting them as planned. I can do that as well … for a couple hours. But if I was that person I would probably not survive long, or at minimum – in the short run – suffer greatly. I’m forced to have at least this part of my life, the medical, organized. And it’s something you never can plan for.

How to plan if you’re chronically ill:

  • Don’t. Or at least that’s what I’ve landed on after many years. I will have plans, and if other people are involved, sometimes you got to attach dates to those plans. But always have a way out, depending on how important that thing is for you. And for the less important things, keep the plan an idea as long as possible (this only works if you communicate well with those around you, and evaluate the possibilities of the individual situation). And depending on that week or day’s energy/pain level, set or change those plans. To sum up; no plans are set in stone.
  • Know that there will be x amount of days/weeks of school work lost due to illness, try not to be angry or stressed out at yourself when it happens, roll with the punches. It’s so difficult. I’m not doing great at it right now. You’re at least learning efficiency when you get back.
  • Try to get as much help as possible. To learn things, to get notes. From anyone. Like be honest and reach out and know that you have a good reason. Try to be that person to others when you have better periods and they got issues, if possible.
  • Always book those hospital/doctor appointments as soon as possible. It’s easier now that I’ve actually got free time sometime during the day, mostly, instead of in high school sneaking out of class and sitting on the bathroom floor of the handicap stall (one of many, I wasn’t in anyone’s way) for twenty minutes while waiting to get through on the phone. It’s still easy to avoid. But it doesn’t get better.

Summer Goals; chronic illness, training, travelling, change

I’ve briefly talked about having mixed feelings about this summer. I don’t know how interesting this post is really, because it’s kind of a mix of bookish goals, survival plans and the fact that I view summer as my new year with resolutions and all. Share any thoughts or questions you might have, I rarely get offended.

I’m the person you want to have with you in a crisis. Since I was a kid, I just act super rationally and deal with it. But what I’m scared of happening this summer is me 1) feeling stuck in a place or around people that I feel is harming (see escape plans) 2) being away from all support through friends and daily routine, making me less equipped to handle bad things 3) dissociating completely because of family/pain/past trauma 4) ending up in the hospital like last year unprepared and completely losing my shit at my unfortune. So this post is mostly for me just having something to refer to solutions if these things do come true.

About summer

I live for the summer. I love the ocean, as you might’ve guessed by the strange name of this blog, and I just feel at peace getting to spend my time like I want, which is mostly swimming, recovering and reading. I’m in and out of hospitals and constantly catching up on school during the rest of the year, but summer has always been my time to breathe. I should be excited about this summer, but the things that has kept me going these past months is in comparison routine, stability and friends. Of not looking too far into the future and the worries that lies ahead. I’m going to need goals to not let everything I’ve got going slip out of my hands.

My goals

Redesign graphics on this blog. I started it with clear ideas and just never had the time to make it as aesthetically pleasing as I wanted. Just make a cohesive thing, how hard can it be. And better quality, because look at the image of this post.

Get a routine to my writing. I’m not claiming I can finish the first draft of my somewhat resembling a novel, but I want to go from writing a lot in a couple weeks and then taking break over the next month to a more healthy routine. I’m very all or nothing kind of person, but I can’t continue writing if it’s going to occupy all my mind and become so obsessive over it at the most annoying times. A weekend of that is fine, two weeks is too draining in addition to school. How do people freaking write?!

Actually get a routine and structure to my day in general. I love being spontaneous, and my summer is based on that, with little plans. The problem is that I fall apart all of a sudden without some kind of base routine. It’s connected with having chronic pain, where with a base routine I know how much energy daily things take. Also I shouldn’t eat X hours before doing a really fun thing, or I’ll be in more pain.

Pack for vacation and then moving. This will be a thing in late june and then again in august. I’m very excited and terrified at once. I currently live in my late grandparents house and my grandma was a light hoarder, meanign we’ve been throwing out things for the past five years, but there’s still more things to get rid of before we’re renting it out. And then my stuff has to be sorted to “going to uni”, “going to loft” and “going on vacay” as well.

Start training. Have I said that summer is like my new years? But honestly, I need to start training in some sense to recover. I’ve been in bad shape since being so ill last summer and I’m just starting to regain muscle. I need training as a stress-releaser for the fall, and starting to build that foundation from scratch is going to require a lot of work. Here’s my prediction: I’ll start with yoga just because it’s softer on the body, grow so bored of it in max the 2nd week, start scouting for martial arts gyms which will all be closed and start swimming a lot instead. My lungs are still too fucked up for straight up running, I think.

Catch up with my reading: both physics science books, writing advice and others. I know I add a lot of books on my TBR every bi-weekly update. Please know that they will not be read in the near future. My TBR is currently 434 books! Another goal is definitely to shorten my TBR, which I have a few methods I want to try through blog posts, but if you have any advice throw it my way. I’ll post a summer TBR soon, because there’s some books I just have to get through.

Etc: spend time with friends (who’s understandably working a lot), spending as much time in the ocean as possible, start learning Python programming (how? I don’t know yet).

Where am I going?

Summer town on the coast of Norway: It’s the place I grew up and then decided to move from, with good reasons.

  • The positives: constantly surrounded by water, lots of places to go out with a boat, a family cabin and lots of bathing spots, a couple friends.
  • The problems: my family there, who have always refused to accept that I’m chronically ill in any way (even as I came out of surgery last year) and I feel the need to confront them all for the sake of my also chronically ill little brother. It’s something that is a big goal this summer, just because I’m 20 years old and it’s the first time I don’t rely on them anymore. I just feel like sometimes you got to make decisions and mark what the criteria for continuing a good relationship with people need to be. I learned that when I was 16 years old refusing to pick up the phone out of a, now looking back, scarily mature moral decision. It sparked a little change in treatment. It’s time for a bigger one.

Denmark: the first escape plan (also will be there at least a week in july).

  • The positives: extremely nice aunt who lives there, extremely good food, quiet enough for lots of reading, baking and recovering. I’m going to buy a year’s worth of tea.
  • The negatives: the countryside, so no people around. Can’t spend the whole summer there, or I’ll permanently become a hermit, which is only bad because I won’t be able to go back into regularly society for a while and that clashes with plans to go to uni.

Amsterdam? My second escape plan. My third escape plan is tenting at the beach. I know where I’ll get the equipment already. It might seem like I’ve put too much thought into this, but at the same time it’s been very necessary before.

Relate to any of this? Are you doing something special this summer? (I have more free time than most, I know)

Long Summer Days & Chronic Illness Trying to Ruin Them

I’ve just spent almost two weeks in a cabin on an island, without internet for the most part. Here’s what I learned: I miss the internet only when it’s cloudy and I am bored and need to occupy myself. Which was like two days, because it was thirthy degrees celcius outside and I am not used to this heat. There was only blue sky and blue calm water, nothing I had to remember or worry about. Lots of bathing, catching and then releasing butterflies with my cousin, seeing family I hadn’t in a long time and nostalgia of being reunited with my older brothers. They also lured me up on some mountain in just slippers before they also managed to get lost, but that gave me nostalgia too so I can’t really complain much.

A couple days ago I also got my head back enough for the first time in over a month to start reading Oatbringer by Brandon Sanderson. When I read a hundred pages in one sitting the first time, at 2 am, I was ecstatic.  I’m sure it sounds obvious, but I didn’t realize just how much morphine pain killers fucks with my head until I stopped them. I almost forgot baking lemon cake, fishing, driving boats at high speed and relaxing. It was a dream.

Here’s the recipe to the best glutenfree lemon cake I have ever made, before this post takes a darker turn. 

I hope this all sounds as lovely as it was, but then there’s the part where I just spent almost two weeks in a cabin on an island because one night three days into my stay I could not breathe. *brief pause as I notice a spider on my leg and kill it with my hands, I want credit for that* Anyway, I woke up and noticed something was wrong, an hour later I could not breathe, the tightness in my chest didn’t stop. I was just hospitalized for a lung infection and gallbladder surgery, not to forget I had misplaced my glasses, so I took a weird choice – woke up no one and wandered out of the cabin to get some fresh air. With the phone camera in front of me I then saw the shrubs move and a badger walk out, a distance away from me. I’ve met these badgers before, they are very cute and will also bite your leg until it hears a crack, so I ran for my life. Which looks more like walking slowly, hunched over, when you already can’t breathe.

So the day after I spent eight hours in emergency rooms and then three awful days in the third hospital of the month. The first hospital visit had been a ten days stay on the other side of the country, where I live, the second one for my minor gallbladder surgery I had just days before. This third hospital I had been to before, but I was nowhere near prepared for how awful it would be. I was in less pain than before. The people I shared room with however were very sick, and looking back there’s no way they got enough pain treatment.

One old lady barely stopped crying the twentyfour hours I was with her, both in pain and because she didn’t know where she was. She kept asking me to help her, confusing me with a nurse because of my young age and I couldn’t get up from my bed. That was the first time I lost it completely and broke down crying. Another lady was just bones, she got worse until the final morning she was swatting the nurses hands away, begging and yelling for them to let her just die, why couldn’t they let her just die. The nurses were nice to me, but acted like this was okay. Maybe it was normal to them, but in no way was that okay. Having been stuck unmoving in another hospital bed weeks earlier, waking up crying from pain that lasted hours, even with morphine, something in me could relate too much. I felt so bad for them, and there was nothing I could do. And also at this point, my situation wasn’t getting better either. So I broke down for a second time. I did not stop crying for hours until I had gotten out of that hospital, feeling mentally much worse than when I arrived. They hopefully got rid of my infection though. Don’t think it was worth it.

I also had to go back for a colonoscopy  (google it), where you have to take laxatives which was a minor nightmare as they didn’t work properly. No inflammation in my intestines this time, which means my ulcerative colitis isn’t flaring on top of everything else so that’s some good luck.

I don’t know if one should focus on the good or the bad. On the fact that I still barely can’t walk some evenings because the hospitals never had time or resources to figure out why my joints are swelling, or that I cannot laugh without wheezing in pain. At least I notice very much how often I have laughed these days. But last week I could finally be in the ocean without my body hurting, two days later I could submerge myself in water completely without lungs burning, a day later I could swim! It sucks to be in pain, to so much need a break from illness and having to fight to only halfway get there. This last year, I could probably sit down and count the times I’ve cried. Until now, because I don’t seem to be done no matter how many lovely days I fight to put between me and those hospital stays.

I’ll be back with book reviews soon, I’m so excited to be reading again.

Also I can’t leave my books at my dad’s house, they won’t survive long without rain damage –