My therapist recently introduced me to the idea of mindfully feeling like shit. So often in our society we are told to think and be positive, and deep emotions that do not fall into that category are told to just go away. I am a very emotional person and cry a lot, yet I am also very good at pushing my emotions inside and not truly process them. This has hurt me so much!!!
Very recently I was diagnosed with Crohn’s disease, and it sucks. It makes me feel like shit, and things keep changing and I am amazed that I have survived so much already. My butt is broken (well, it still works but it now has extra holes that aren’t healing properly), I have rotating mouth sores that are always annoying and sometimes very painful, and now I developed severe joint pain and swelling. It was an ankle and a big toe, now it’s both ankles, that big toe, a pinky finger, an elbow, my right knee, my back, my neck, and my left hip. These are all symptoms associated with Crohn’s, and autoimmune disease that affects people differently depending on the location and severity of the inflammation in their digestive tract.
The pain is the worse part. I can’t seem to get it under control. Steroids helped, but then it made my fistulas worse (the broken butt part of me). They lowered my steroid dosage, but that also means I experience more pain and swelling. Even opioid pain medication is not making a big difference. I just got a cane to help me get around the house. It has helped so much! Sitting down and getting back up is the worst, but finding any position to be comfortable in is also really difficult. I used to do fairly well laying on my left side, but then the hip pain started. Sitting still causes me too much pain to do for too long.
Sleep has been incredibly difficult. Sometimes I can’t fall asleep because of a racing mind, and/or body pains. I tend to go to bed late since I know this will happen and hate the feeling. Trying to avoid the inevitable. Maybe if I’m a little more tired I could fall asleep better? Sometimes I wake up in the middle night and need to get up to take pain meds and let them start having an effect before going back to bed. Then, in the morning, I have trouble getting up. Either since I know the day is going to be a challenge with everything I am dealing with, or the pain is so unbearable I don’t want to try and move. I also have anemia so I have been extra tired and randomly take (sometimes unexpected) naps.
I am a fairly independent person. I hate relying on others for things. Even though I have been in a committed relationship the last seven years, watching my partner help take care of me and do chores I usually do has been tough. I started to ask for more help, since I need it, and my partner has been supportive and helpful, but I still hate it. I am the cook in the house, so not being able to provide nutritious homemade meals right now also really sucks. I am very limited on what I can eat right now as well. Food has become a huge frustration for me. It is rare that I have enjoyed it in the last few months.
Watching my body change and not having control over it has been incredibly worrisome and difficult. Being fat my whole life, I have also been incredibly mindful of my health and other people’s perception of it. I have always loved my muscles and strength. I have not been able to be very active for the last few months and I can see myself losing muscle mass. I feel a lot weaker and it sucks. I remind myself that I should heal once treatment begins and then can work on building up my strength again. There is just so much unknown, it is difficult. How long will treatment take until I start to heal? What side effects will it have on me? Will I get sick since I will be on immunosuppressant therapy? How much greater risk will I be now for covid?
Blah! Scream! Shit! This sucks! Autoimmune diseases are the worst! Fuck Crohn’s disease! Ugh! Fuck!
Okay, I let it spill out of me…
Things really do suck, a lot, right now. And although I do not think positivity is required, I do want to acknowledge some not negative things. Learning to reach out and ask for help from my community has surprised me in a wonderful way. People I haven’t even met volunteered to bring me food. Friends who I haven’t hung out with in years brought me food. Friends who have to travel a good distance volunteered to drive me to the hospital, multiple times. One friend even made me homemade soups based on what I can eat and brought them to me to freeze and heat as needed. Wow! One day I needed to pick up a medication for my rat that was desperately needed, but I couldn’t get to the vet office and was in so much pain. I contacted another rat-loving friend who also went to the same vet, and she picked up the medication for me and dropped it off. So many people are doing such amazing things for me and offering to help even more, if needed.
I also got to experiment more with food. I made the most amazing cauliflower and cashew based alfredo sauce! So creamy and it made so much sauce I was able to freeze some for my friend who made me all those soups. I also used a pumpkin curry soup that was a little too ginger spicy for me (which there could not be such a thing as too ginger spicy before my mouth sores) as a base to make a delicious sauce adding canned pumpkin and peanut butter to it. Fantastic!
Working has been a challenge! I took off a good amount of time when I was having surgeries for my fistulas in June, and some other times when I was having an extra bad day. Once the joint pain started, I wasn’t sure how much I was going to be able to work and needed to work less hours. Luckily I am working from home during all of this. I would not have been able to continue working if I still had to physically go into work. I’ve had special bathroom needs, had lots of medical appointments, food difficulty, and needed a lot of time flexibility. Also, I can’t sit, so I have been doing most of my work laying on the couch or in bed. My bosses and coworkers have been incredibly supportive and I even got some extra help from work that surprised me and blew me away. So appreciative!
I still have a long road ahead of me and am constantly trying to get through this new life of mine. I know I won’t be suffering like this forever. But sometimes it feels like I will. Reminders are important! Also, finding little things to be happy about. Such as my adorable rats, or playing Animal Crossing with my partner since there’s so much less for us to do together right now. Getting flowers for my balcony, and then watching hummingbirds come and visit the flowers. This hell won’t be forever. It will freeze over.