I think you will agree that once CFS strikes your family you may find yourself rethinking the idea of vacations. If your family were avid hikers in the wilderness before CFS, then this will probably not be your ideal vacation now. But this does not mean that you have to give up taking a break once in a while. Flexibility and Mindset are two of the words you need to take to heart in your planning.
Fatigue refers to a sensation of exhaustion during or after usual daily activities, or a lack of energy to begin these activities. Most people have fatigue at one time or another in their lives. Fatigue may result from exertion, lack of sleep, or illnesses such as colds. Fatigue is not extreme or persistent. Instead, it generally goes away after getting more rest or recovering from a cold. Chronic fatigue, however, occurs when symptoms of exhaustion or lack of energy last over 6 months.
While flowers are just beginning to bloom, and summer vacations are on our minds, why would we want to devote our energy to next year’s school issues now? I mean September is over 3 months away. Right? You may be asking yourself, “Why waste my energy now thinking about what might be next year? My child may be much improved by September.”
I often find myself talking to other parents of children with CFS about plans they have put into place for their child’s education. Usually it is the case that I am making suggestions of modifications and accommodations that we have tried or heard of to assist the parent in enhancing their child’s educational plan. But sometimes I have parents share ideas with me that leave me feeling that this is an excellent idea and I need to pass this one on.
As I was reading Dr. Bell’s article this month on the blood volume studies my mind went back to 3 years ago this month and the role my son played in this path that our research has taken. My then 13-year-old son was in the 7th grade and had been very ill with CFS for over 3 years. We had tried so many treatments but he just seemed to continue to go downhill.
From watching our children, and working closely with Dr. David Bell, we have learned many things about coping and living with this illness when it invades your family. There are probably as many ways to deal with this issue as there are families dealing with CFIDS. If our experiences offer any ideas for parenting your children, then I am happy to have shared our journey.
Once you have tackled the medical issues of CFS and have begun to deal with the educational issues, your thoughts may turn to what your child is missing in the way of normal social development. You see other children you know becoming involved in the school band, chorus, or maybe going out for the latest sport’s team.
CFS is hard on anyone, but for a teenager it’s incredibly difficult to deal with. I know I just celebrated my 20th birthday and I’ve been sick for 11 years. I went through a little bit of the “normal” teenage rebellion, drinking, smoking, etc., but the majority of my rebellion was done in ways only an ill teenager could rebel. I would argue for hours with my mother over taking medicine, even pain killers.
As a parent with CFS you have several choices on how to deal with this illness with your children. One mom, due partly to the lack of a diagnosis, chose to hide it from her family. “To this day my children do not recall that I was ill, and when questioned they say that there has been nothing different about their life because of CFS in our family.
As parents, CFS has been one of the hardest things that my husband and I have had to come to terms with in raising our children. I am sure I speak for all of you out there, when I say it is heartwrenching to watch your child suffer and to have no idea what you can do to help. At first the terrible road to a diagnosis, and then living with the daily trials of pain, and sleepless nights, the fatigue, the isolation…