Take Care of Myself?
While I know people are well meaning, when they remind me to “take care of yourself,” I honestly want to ask them, “Now, how do you suppose I do that?” People who have never been full time caregivers while jointly being a full time employee and at the same time being responsible for the food, shelter, transportation, maintenance, solving problems, researching issues, managing medical care, providing entertainment, comfort, and encouragement….have no idea what they are talking about.
I was sharing this week with a colleague how overwhelmed I was over Christmas with my father-in-law dying, helping my mother-in-law find hospice and companion care for him, helping her maneuver through insurance changes, keeping a watchful eye over my Mom who has chemo every three weeks and was admitted to the hospital for fainting spells, doing Christmas activities (mainly as a respite from medical issues) and helping Lynn who was depressed over his step-dad’s impending death and who was bummed out because he could not help me with it all. Now, don’t you think that list of “to do’s” is a little overwhelming? Well, at the same time, one of my four employees who handled a unique function for my team resigned, I had to start recruiting for her position, a consultant was coming in to our department who needed information, and various other challenges were being thrown my way that were work related. That’s a lot of stuff to juggle in 24-hours. My usual amount of sleep was 4-5 hours a night; so I was running on empty and admittedly using caffeine pills just to keep going. …and she tells me to “take care of yourself.” …Really?? What is she expecting—for me to eat healthy, exercise regularly and get plenty of sleep?
I wonder what people think sometimes when I tell them about my life. Do they think that I can just call up the local “help” agency and have a fully trained, caring individual come help me out so I can take a nap? Do they think I can just say, “Lynn, see you in a few hours. I’m off to the gym,” or that I can choose to go to bed earlier and sleep later because all that stuff I’m doing is not essential? I guess, they think I can just say, “No.” However, “no,” is not an option. Have you seen that commercial where the Mom or Dad is feeling lousy with a cold and comes into the baby’s room to say, “I’m feeling sick. I won’t be in tomorrow.”? That commercial gets attention because any parent knows you can’t just tell your child you’re taking the next day off and leave them to their own devices. Well, that’s true too for caregivers. The only difference is that when you’re a full time caregiver, there is never a “next day” when the illness has passed and life goes back to normal because our normal is high demand, adjusting to constant change, and often feeling exhausted and achy all the time due to lack of sleep and muscle strain.
Though I hate to exercise, I would like to be able to walk the neighborhood for exercise if for no other reason than to get fresh air, but I can’t…at least I don’t feel like I can. To be able to go out for a walk would mean putting in an indwelling catheter just in case Lynn had to pee before I made it back. Apart from the cost of putting in an indwelling catheter for an hour every couple of days is the fact that every time I insert him, his urinary track gets irritated and I know that eventually he would get an infection. The last urinary tract infection he got, he was in the hospital a month. So how else might I get that exercise? I have a treadmill but when I’m in the house, it’s hard to pull away from all that needs doing. The other factor is that I would not want to set aside time during my workday. If I exercised I would ant to do it after I got off work at night but our night routine is already 5 hours long and if I added in an hour of exercise that would mean going to bed even later, getting even less sleep and being more exhausted than I already am.
I know the importance of taking care of myself. I know that if I don’t it’s likely my own health will suffer. However, when you have so many essential duties and someone counting on you for his/her every need, how do you just walk away to “take care of yourself?” I haven’t found a way so I keep snacking to keep up my energy, take five minute naps during the day to keep going, and occasional make an extra trip up and down the hallway for more exercise. I indulge in listening to audiobooks while I work for entertainment and cherish each break when I get it and whenever I get it, because this isn’t going away and I have to keep going.
Have you ever experienced any of the following financial struggles due to your MS?