It has felt like I'm trying to climb an escalator that's going the other way. Like I'm working so hard and not making progress. Sometimes I make a step forward before it takes me down, but inevitably the escalator speeds up and I'm back in the same place. It doesn't feel like progress because I'm in around the same place all the time even with all this effort. Like to maintain stable takes all my effort more effort than I think others realize because I'm in the same place on the escalator.
Medically it is a lot. Right now I'm supposed to be connected to my feeding tube 24/7, taking 4 pills in the morning, 14 pills at night and my pain and nausea meds frequently throughout the day, plus ideally enzymes with my feeds. For my airways I should be doing my sinus medicine once a day, breathing treatment meaning 2 meds that take around 15 minutes to nebulize each and an antibiotic that takes around another 10 to do and I should be doing airway clearance through my vest, exercise, or Acapella ideally I'd be changing it up with each of the 3 breathing treatments I should be doing daily with my antibiotic. I have a whole container of nebulizer cups I should be cleaning and sterilizing. I should be doing my physical therapy exercises every day for half an hour. I should be calling and figuring out bills with insurance and the hospital and doctor offices. I should be seeing my psychologist with pain management once a week, my physical therapist with pain management every other week, I have my therapist each week, ordering a med or multiple meds each week (because they are all off schedule so there's always a medication due for refills), I have my CF team, GI doctor, pain management doctor, primary care doctor and because insurance changes I need to find a new urologist, ENT and dermatologist. Each of these clinicians change the to-do list when I see them. They have more to add and change up sometimes in line with what I need help with and sometimes added burden somewhere that feels irrelevant. Honestly, recently I have not been keeping up with it. It's kind of a combination of burning out, still feeling pretty dang sick and prioritizing what feels the most important for me. Staying nourished and managing pain and nausea are the top priorities. It is what gives me any shot of doing the rest. There's a lot that is falling by the wayside and that is okay. Even when I do all these shoulds perfectly I never make it to the top of the escalator. It just keeps going with the shoulds ever changing and my health hanging in the balance. It's exhausting and so much effort to show up in my life with the things that matter to me. There's so much behind the scenes that is going on for me to be present. I desperately need those moments of normalcy. Meeting with clients even with my very reduced schedule helps me feel more like myself and gives me some time during the day that I am focusing on something besides caring for my body. Hanging out and talking with family and friends helps me remember who I am underneath the patient role I'm constantly in. Those moments of normalcy are why I keep climbing the escalator. I know CF is progressive and so are some of my other conditions which means the escalator is going to continue to speed up over time. The effort needed to stay on the same stair is going to continue to increase and I will be going down the escalator with time. It won't be all at once and I know the escalator speed will change and with the changes my priorities get to shift. Hopefully at some point my pancreas calms down and I can say goodbye to carrying feeds and my pump with me constantly and get off the strong pain meds I'm on and be able to drive. It will likely be temporary because my pancreas is an angry little organ, but for a little bit I'll get some time to regroup and maybe even catch up on those things that don't feel like top priority with my health.
