For those of you who remember when I last wrote, I was taking a vacation - a cruise to Alaska! It has been so long ago, some of you must be wondering if I tried swimming in the North Pacific, or got eaten by a Grizzly Bear. Sorry to disappoint, but neither of those things happened. It’s just that my vacation wore me out. I ran into a quote recently which I think makes a lot of sense: “The time to relax is when you don't have time for it.” Sydney J. Harris (1917-1986) Journalist. As many of you know, my spouse has been quite ill, but was feeling much better at the time of our planned trip. However, I managed to end up in the hospital just 6 weeks before our intended adventure with pneumonia. I have since been on oxygen 24/7. I have to tell you, arranging for, and then hauling an oxygen tank all over the cruise ship, and our inland trip as well did not add to the fun! However it was necessary. One of the reasons it was necessary was exactly the issue this quote speaks to.
All of us with these diseases know that stress, physical or emotional, just make our symptoms worse. I have also learned, but frequently ignore the lesson, that my body will pay me back if I don’t take care of it. While my spouse was getting better, I was slowly getting worse, but ignoring it. Even as my partner and friends expressed worry over me, I ignored them. In fact, as I wrote about in my last article, I was irritated by them and comments about my weight. What was happening was that I was retaining fluid, and was gaining weight. I kept saying “I’m fine, just a little more tired than usual, until one day I couldn’t breathe sitting in the car (on the way to a doctor’s appointment!) I ended up going to the hospital by ambulance. Part of the flare talked about in my last column was related to the pneumonia, and I am still on increased pain medication.
I thought I was making time to relax by taking this trip. It was wonderful, for both of us, totally exhausting, yet we would go again without having to give it a second thought. But my body showed me again, that I have to listen to it. I have to take care of it. I have to relax, even when I don’t have time for it. This is tough to do with a family illness, but necessary. My spouse is again on chemotherapy, and is sleeping a lot. This time I am allowing myself to stay in bed too, or to take naps in the afternoon. I am trying to let my body get what it needs around the things I must do as care giver. That’s one of the reasons it took me so long to get back to writing to you.
There is another lesson I learned on this trip. Since I had an oxygen tank with me, it was obvious I sometimes needed assistance with managing it, like in the buffet line. I was amazed at all the help that was offered, not only by the cruise staff, which is expected, but by others. I usually needed help with stairs, on and off the busses, and the help was there. When the ground was rough, one or two of our tour guides were there to support me. I fell a couple of times, and there were many volunteers to help me get up. People are kind when they know someone needs assistance. My need was a bit more obvious, although more of the hardship was due to the FM than to the oxygen, and the people around me responded with kindness and help. Don’t be afraid to ask for assistance if you need it. Both times I fell were because I was being independent instead of asking for help, or taking aid that was offered. Even when there is no visible sign of your needs, ask for help when you need it. You will occasionally be rebuffed, but that will be rare. Most of those around us are caring individuals who simply have to know that there is a need, and they will be more than willing to lend a hand. Since I am now a bit more willing to accept assistance, I have found this to be true at home as well. I expect the offers were there before, but I was too self-reliant (read that as stubborn) to accept them. Or perhaps the look on my face was enough to convince folks not to offer. In addition to the beauty and peace of the wilderness that is Alaska, the past few months have had other lessons for me. Things I knew, but have ignored to my own disadvantage. Take care of yourself. It is required. And let others take care of you. Most of the people around you are loving, compassionate individuals who will be happy to assist if they know the need. We have but to ask.
Take care and be well. Yours in health,
I welcome your comments and questions at: firstname.lastname@example.org. My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well. Eunice