One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes. I’ve shared that frustration before, but I keep coming back to it because it’s such a constant struggle. Adapting to it not only means being prepared for the unexpected and flexible but also being prepared to accept disappointments and let go of the planning and any sense of control.
This week has been that way. We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book Rising Tide. This contest accepts thousands of entries throughout the year, and he submitted Rising Tide in five categories. He was a finalist in the category of adventure. Though his book is usually found in the “fantasy” section, his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work since his MS has progressed to the stage where he can no longer do anything physical. He has a friend who comes in weekly to type for him, and during the week, he uses his slow, hunt, and peck typing style to market his book to book clubs. So, the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot. The rest of the week he has felt tired and generally bad from the Rebif. Each morning, he has the hope that today will be a good day, but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day, and his strength, stamina, and outlook steadily go downhill.
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles have made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa). We got up at 7 (we have to have three hours at least to prepare for the day), so he would be ready by 10. By 9, he had to call and cancel. For the third Saturday in a room, he just didn’t have the energy to supervise a construction project.
From Lynn’s perspective, he’s getting sick and tired of being sick and tired. It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time… then there’s the possibility he won’t adjust, and it will always make him feel this way. From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment. For example, I just came back from the library, where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually read anything). In order to go to the library and back–a fifteen-minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door. Walking back into the house, I yell, “I’m back,” of course, I hear, “Come here when you can.” He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something…
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver. He looked at me and said, “Why does she call herself a caregiver? She doesn’t do half of what you do every day for me.” I explained that each disease has its unique caregiver needs, and often, the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bathe, clothe, entertain, etc.
I understand where he was coming from, however. There are certainly degrees of caregiving, just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly looked at articles to see what might be helpful. I know each person’s situation is very challenging, and it’s very difficult to be a long-distance caregiver to manage situations for a parent or relative in another city or to live with someone who is physically functional but mentally dysfunctional. But caring for an MS patient is uniquely challenging, I think. For most other conditions, you can get into a routine, know from day to day what needs to be done, and plan ahead. For MS, that’s not true. MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything, and whatever that effect may be will impact their bodies either in how they feel or how they function. Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc., you can’t effectively plan an hour to hour, sometimes much less day-to-day. For me, that is perhaps the most challenging.
Next week will be our first virtual support group conference call. If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us. Contact me through Skype. My ID is MScaregiverdonna. Send me your contact information, and I’ll add you to the conference call group. I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week…
Donna
