Living a life with multiple chronic illnesses, both physical and emotional, is a challenge to say the least! From the outside looking most people don’t realize to the extent which our illnesses effect our lives. It’s not just popping meds, canceling appointments, and being sick.
So what is it then? I could never describe it in a way that a healthy person would understand, you just won’t get it till you live it.
For me though, it looks a little like this…
Yes, I take my meds, 4-6 times a day. Some meds I have to eat with, some cannot be taken with others, some cannot be taken with certain foods and some cannot be taken within an hour of any food. So scheduling my medications is challenging, then another gets added and the entire routine needs re-examined! Then of course they don’t run out at the same time so a close eye needs to watch for refills due. Okay that’s all for med talk!
With multiple illnesses comes multiple triggers, but I feel the biggest trigger for each illness is the other illness being triggered. For example, a weather change can’t trigger the Myofascial pain and Fibromyalgia, the pain from those two will trigger the Depression and Anxiety, the emotions and pain together will trigger low Cortisol (the Addisons) and the POTS seems to be way worse. So boom- there is a flare! These types of flares cannot be avoided, yes medication and increasing fluids and salt will help, but won’t prevent a flare.
Planning an activity/event. My family and I are taking a trip to Oregon to see our oldest son and dautghter in law (to be.) The amount of planning for just a few days is mind numbing.
We have all of the regular planning and packing; buy flights, reserve rooms and car, arrange for pet sitter~ all of that.
The rental car preferred is an SUV for easier getting in and out. I need disability accomadtions with the airline. Those calls and computer work are exhausting so the rest will wait.
Back to medications, original bottles need to go, but so do the med planners, so condense and arrange those in the smallest possible bag (which is still bigger than my purse.) Double check, make sure i have enough for the trip plus some just in case. No refills needed? Double check that emergency medications are loaded in multiple areas! Also bring doctor notes for medications if needed. I’m bringing my emergency health binder, which is now incorporated with my Holistic day planner.
Next… Clothing. It is a 5.5 hour drive to the airport from my house, then a 4 hour flight, then drive 2.5 more hours to our destination so dressing comfortably is a must, easy on and off shoes to ease mobility at the airport. And going from 70+ degree weather to single digit temps is presenting its own obstacles. Dress appropriately in layers and bring a blanket. The temperature change alone will probably induce a flare. Getting super hydrated before and staying hydrated during the trip is very important- electrolyte supplements are packed. Rest as much as possible in the days before the trip.
Arrival- I haven’t been home in years, the family is planning events and adventures, trying to explain to them my limitations is proving challenging. There are so many “I can’t do’s” like I can’t do super crowed places, I can’t do activities that require being in the cold or lots of walking, that list goes on and on. It puts a lot of pressure on them and me. The visiting alone is going to be exhausting, and if the temperature change has provoked a flare Things will be even harder. Oh this is all very overwhelming.
But to look at this list I see so many triggers
- The temperature change😱
- The stress of do I have everything😨
- Is everything in order😨
- The travel itself😴
- The visiting😰
- The risks of being around anyone unhealthy that are toughing it out to come see me (if they are contagious- I will surely catch it. 😷
- Change in diet 🤕
- Change in activity 🤒
- Regular family stressors 😕
- The triggers unknown by events unknown.
I am trying really hard to plan for and work with any triggers! It’s what we do, we look for triggers in every situation and we try to avoid them.
Having so many illnesses present their own unique triggers, but like I said earlier, their biggest triggers are each other.
I am so excited for this trip, I’ve missed my parents, son, other family and friends so much! I pray my health cooperates and lets me enjoy the few days I have with them.
*I have fallen asleep twice trying to post this. Hopefully it’s complete now.