Everyone rallied around me when I had my first MS attack and subsequent diagnosis. There were cards, flowers, food, phone calls and visits. Best of all, I got better. I did my physical therapy, occupational therapy and managed to almost get back to the way I was before I went into the hospital. It was a rough time, but now I knew what was wrong with me and I had the tools to keep things under control, or so I thought.
Over time, I learned what relapsing-remitting MS meant. It could come back whenever and however it wanted. Also, even with medication it's still gotten progressively worse. Having a chronic disease like MS is not like a typical illness or injury; it is not just one incident, but an ongoing problem. For me, there have been times when it has been really bad, but even when I have had an exacerbation and recovered somewhat, it's never as good as it was before I had the attack. This is extremely difficult for me, but it is also hard on my friends and family.
People are willing and able to help out for a set amount of time, but an ongoing commitment is another story. For example when I've been very sick, people have brought food to the house for me and my husband, but no one brings anything ordinarily. Even when things are "normal" around here, Doug needs to do all the cooking and cleaning in addition to caring for me and on top of working full time. Our situation is very isolating at times. It is inevitable as a couple ages that one spouse will become the caregiver for the other, but not when they are still in their forties.
So, I am left with a dilemma. On the one hand, I want to be known and remembered for more than my disease but I also want people to stay in touch and check in every once in a while to see how I'm doing. As I said recently to a longtime friend of mine "the novelty of my illness ended long ago." Although my reality has been permanently altered, the majority of my friends, family and acquaintances have moved on to other things. After all, I will be living with MS for a long time to come.
