I have not been feeling great lately. I've been more fatigued than usual and my cognitive dysfunction is really acting up. All of this is leading to many things being forgotten or left only partially complete. I do not feel like I am doing an adequate job in caring for my family – dinners are silly combinations of things like cereal and frozen vegetables and the house always looks a little more "lived in" than I like. I find myself apologizing quite a bit for this. I tell my husband that I am sorry that I can't keep up with the laundry or that the refrigerator is practically empty. I tell my daughters that I want to help them learn their sight words, but I have to do what I can to at least keep things running on a very basic level.
The funny thing is that I beat up on myself much more than anyone else blames me. My husband will gladly take care of any housework. My girls are thrilled when they get to eat Froot Loops for dinner and skip going through flash cards. When I am wallowing in the negative feelings around not being perfect, I am just making things worse. Lately, I have tried to get rid of the guilt – I ask my husband to fold socks and I giggle when my daughter tells me that a certain piece of cereal looks like a bunny.
Here are some of the things that I have been doing to try and get rid of my MS guilt:
Realize it's not your fault.
I'll say it again - MS progression is not anyone’s fault. I was angered beyond words to read in a book for people newly-diagnosed with MS that people should set a goal of having inactive MS (defined by that author of no relapses for five years, a term which I have never heard). This author said that “caring for yourself diligently” and “treating your MS actively” during your first year following diagnosis can help people achieve this objective.
Bah. Sure, the meds work for some. They don't work for others. We do the best we can. Some of us find relief in following complementary and alternative medicine approaches or adhering to certain diets. Some of us don't. Whether we try these things or not, everyone needs to understand that each person has to find their own way. There are a million factors involved in MS progression (many of which scientists still do not understand), and where we end up on the spectrum may have little to do with our behavior.
Regardless of how we proceed, our MS is not our fault. Assuming that anything that we do or don’t do can stop progression of MS sets some of us up to be failures in the business of living with MS.
Task: Try to go for one week without apologizing for something MS-related. If that is too hard, take it day by day.
I say this lots. I do this rarely.
I once heard that if you want someone to be your friend, ask them to do a favor for you. Try it. People like to be helpful. It makes them feel connected and needed. Think about the last time that you did something for someone and how good it made you feel. Let someone else have that joy. Besides, you probably would not ask unless you really needed the help.
This will help alleviate guilt by bringing you to the realization that we all need help from time to time.
Task: Ask one person for help this week. Start small – have a friend add a couple of items to her grocery list for you or ask your husband to prepare the salad for dinner.
Do something nice for yourself.
Again, you hear it all the time, but when was the last time you did it? I think many of us fall into a trap of thinking, "How do I justify going out for lunch with a friend if I can't even get the dishwasher unloaded?" or "It wouldn't be fair for me to buy that new outfit. I spent too much money on that MRI last month."
This tamps down my guilt by making me feel a little more like a whole person again, as if I deserve to have nice times and nice stuff, just like everyone else.
So, make some memories. Have some fun. Live life.
Task: Do one thing that is "unnecessary," but makes you feel good this week.
As a former "type A" personality, the desire to get the job done and do it right will probably always be with me. However, sometimes I just can't live up to my own standards. I would not be this demanding with another person that had the same symptoms (in fact, I would think it was mean). I am trying to be nicer to myself these days. I have a feeling that will make the world a better place for me and for those around me.