I have said over and over again that I am extremely fortunate to have such a wonderful, caring husband who is very supportive of me and what I have to go through daily with all of my illnesses and health problems. I realize that he signed up for a lifetime of my illnesses running our lives much of the time and how hard all of this has to be for him.
Even with all of the support, I still feel so alone most of the time. There isn’t one person in my family and social circle who understands what it is like to feel like crap all of the time or that understands what it is like to have to plan my days around naps and making sure I get enough rest. I don’t blame anyone for not totally understanding because how can they? It’s impossible for someone to get it totally when they haven’t walked a mile in my shoes.
I feel as though I never fit in anywhere, that I’m a social outcast, and that I my illnesses and how they make me feel sends the wrong message to others. There have been several instances where, due to a ME/CFS flare and Fibromyalgia flare, I have been socially unable to deal with groups of people, the noise of small children, etc. without having to leave the room or I will have to go to bed. I know for a fact that this has left people feeling as though they are not welcome in my home or that I am snubbing people, but that is not the case. Even when I try to explain how I feel, it is impossible for others to get it.
Here lately my health has really taken a turn for the worse and I believe a lot of it is due to all of the pain in my leg. The fatigue I have been experiencing is different than the fatigue I usually suffer from with CFS. I find that I am sleeping, or trying to sleep, every chance I get. Even though I know I can’t help what my body is doing, I feel bad for my son. He doesn’t have much of a mom and it has to be hard on him also.
Hopefully living with a chronically ill parent will teach him compassionf or others when he grows up. I don’t want him missing out on anything now. Life is too short to miss out on all of the great experiences and it seems as though I’m missing out on everything lately.