A few thoughts
This is a really important question–how to deal with all the anger and sadness and trauma of this sudden and dramatic change in life associated with illness. I do not think that there is a best “answer” as to what to do, because each person is so different in how they approach life, in their support systems, and in what they have experienced. It does seem to me that it is important to address somehow the anger and sadness so that one feels it, acknowledges the changes in life, and finds some way to move forward. In my own journey in this, I realize that I am so very angry to not be as I was and to be able to do what I used to do, that it also in some areas of life “rules me” too. But more importantly, it seems, I was/am stuck in the past because the only way to move forward is to accept that life as it was will not be any more and I have to make a new and different path in life. It takes time to come to accept this much change in life. “Talk” therapies, body therapies, counseling or talking with accepting friends all have as one part of them first acknowledging and “feeling” what has changed. Journaling or doing something like gardening or knitting (that is active but limited in time) seems to be a good way to have a dedicated time to think about and acknowledge a problem, but not have it take over your life. Because gardening has an output, it feels productive and it is not focusing on the problem–it just is a time that some energy can be put into a problem as you do something else. To me this makes a difference–because it helps keep emotions from feeling overwhelming and also helps to keep people from feeling so stuck in anger. I hope this makes sense. The anger to me almost feels like it is under so much pressure as to be in a pressure cooker and at risk of exploding rather than venting. Doing something like journaling or gardening or knitting can be a defined time to take out and look at and feel and think about what is in that pressure cooker without it taking over one’s life so that some of that terrible pressure of anger and disappointment is vented. I love to garden but have not been able to do it, but it is healing and I hope to do more this year as I am stronger. It feels healing to do what was “normal” before and one can release a lot of anger in moving dirt around!!! Plus, one gets to see beauty despite a lot of dirt, mud, and manure!!!
Second thought. It takes a huge amount of energy to act “normal” when one is not–not only in physical energy, but also in emotional energy. It has seemed to me in this journey that the exhaustion of trying so hard every day is linked to the feeling of depression. There is a definition of depression as anger turned inward, but it also seems in living this that there is a true physical basis for depression–that the exhaustion is through all of life–in body and spirit. As the fatigue gets better, the weighing down of the spirit does too.
Third thought. It is important that nothing negative should “rule you”–should take over your life. If it feels like this illness rules one’s life, he/she needs to turn and look at that and find a way that this is not so–that what is defining the significance of your life is a positive thing–be it family or work or church or friends or whatever is important to you in a positive and life-fulfilling way. There are many ways to get the focus back on living forward and off living backward in the past in anger and sadness. One just has to find one that works for you and that allows the venting and acknowleding needed as well as the focus on how to live life from now forward–with these new constraints.
Just my thoughts through this journey. WithHope
A few thoughts
One of the other pieces of good advice I have heard here a lot is that rest, when possible, should be horizonal. Since you feel like your feet are swelling and worse with walking, this might help you. Can you put your feet up when your husband is driving? I also found that an hour of lying down or reclining was worth several hours of sitting. Sitting, itself seems so lazy, but lying just relaxes the muscles more and helps fluid come back from the feet. Often with GBS, the autonomic nerves are affected and so the body is not quite as good about bringing all the fluid back up from the feet. Other little suggestions might be tight hose/long socks, if you can tolerate these. get one pair of really comfortable shoes–it helped my balance to get shoes that were a little wider since I have really narrow feet. It also helped me when I started using a rolling backpack to take my papers to and from work–just a little less work for my body to do in carrying things. I now use the rollator with a seat as a transport for papers and lunch, etc.
One final suggestion is that physical therapy “exercises” to build core strength –strength in the center of your body are supposed to help balance and walking a lot. At the recent Neuropathy Association support group we had a Yoga demonstration. It was a tiny bit discouraging how much I could not do of the Yoga–even with almost all the exercises modified for people with neuropathy, but the breathing and range of motion seemed to help. The neurologist there is a strong advocate of sitting on one of those exercise balls to help strengthen balance. She said to sit on one when watching TV or talking. I can’t say I have done this either, but I am pretty good at finding a way to get my legs level periodically in the day.
(I am like you in having a mild case and in continuing to work full-time despite the challenges. I have learned to work a little smarter and use less physical effort).
WithHope for a cure of these diseases