June 14, 2010 at 3:31 am

I wanted to write three thoughts, but life is so busy.
First and foremost–each of us has to make the best decisions we can with the information we have at any point in time and we do not know the future. Try very hard not to be guilty or angry at yourself about the H1N1 flu shot. You made the best decision you could at that time. I think of it like driving. Getting GBS is incredibly rare, but having a car accident is pretty common. Do we not drive or ride in a car because of that? Life would be really hard if we did not. Flu shots help us, but they also help others around us. the HINI flu is a potentially scarey one. Yes, it is not as bad as it was projected, but for some young people, it was fatal. It is also likely to be the basis for flus in the next few years–so immunization for this “different” flu will help in the future–this is why in part the young were so sensitive to it–because there has not been a flu like this for a long, long time and us old timers already had some immunity protection based on the old exposure.

Second, there is a lot of controversy about flu immunization after GBS. Each person needs to make their own peace, BUT realistically there dose not seem to be added risk of GBS for those who got GBS from other events. And yes there may be a couple to maybe really rare number of cases of second GBS after a flu shot when the first event was not a flu shot, but it is really rare. There ARE cases of GBS again after a flu shot if the first GBS was after a flu shot. The neurologist argue that the antigens for the flu are so different each year that this is a very, very unlikely event. Personally I am not sure of this, since it is not just antigens but also the background on which they are presented (HLA of the person). If it were me, I would be leary of flu vaccination for flu viruses like H1N1 in the future ONLY if I got GBS after the H1N1 flu vaccination.

Third, each of us has to make peace with how we live and what we do. I work in an area in which I need my brain as sharp as possible and I will not take narcotics and work (and I work a lot). I also chose not to let pain or medicines control my life. This does not mean that there is not pain. I had in the past lived with severe pain for about three years (for another reason). I could not eat solids for months, I walked on my tip-toes because walking caused severe pain, I took aleve and tylenol and often slept two and half hours and then waited in pain until I could take something else to be able to dull the pain enough to let me be able to sleep again. That is hard when it goes on for months and months. I understand the pain, I just chose not to allow it to rule my life. I chose to live as fully as I could and deal with the pain with other ways. This is not a statement that medicines are not good, it is just that it is important to remember that 1) there are lots of other ways to help with pain and 2)that the most important point of all is to live life. the reason that I say this is that in this day and age, lots of people think that medication is the only way to deal with anything wrong with the body. It isn’t.

I do not say this in any way to bother anyone or act like I am stronger than others because I am not. I just think that each of us has to find a way that works for us in order to keep living life. This is different for each person because each person and each situation is different. Medications are a great accomplishment and play a vital and necessary part in recovery–just they are not all of it and what each person needs must to be tailored to them. I think that the most important points that caused me to say this are 1) there are choices other than pain meds, 2) that living life is the most important, and 3) that for many people one of the things so very hard about this illness is the loss of control in life. I could not make myself walk normally (although I tried), but I could keep pain from being number one in my life. This did not make it go away, but it helps keep it from taking over and ruining what was important in my life and it has helped me to keep a positive attitude and to keep trying. It is easy for pain to do that, because when it is severe, it feels consuming and it feels like it will never improve. Each of us has to come to some peace about all the changes that happen and pain and fatigue. Don’t give up and don’t stop living life as fully as you can at each point in life. People do not have to choose to fight one aspect of this illness (as I did pain) and each person is different, but it probably DOES help to fight to live as fully as possible however each one has chosen to do it.
WithHope for a cure of these diseases