I just read the thread on guilt in the chronic pain forum on this site. It is several months old, but all of the feelings are the same. Sometimes the guilt almost overwhelms me, as does the reality of what this means. For me, there is no treatment, only certain progression. I do not know what giving up a career is like, I have been a stay at home, homeschooling mother of 5 for 31 years. I still have three sons at home, the youngest 15.

For most of that time I made our clothes, quilts, sweaters, mittens, curtains, pillows, slip covers, decorations, baked and cooked everything from scratch, and made quilts and crafts to sell. Our three eldest completed enough AP credits at home to enter college as sophomores. Our eldest son has autism spectrum disorder, our two youngest have learning disabilities, the youngest severe, with physical issues as well. I was on top of all this with the help of my husband.

Now I can scarcely get out of bed in the morning without help, it is an effort to stumble from room to room, and I budget trips up or down the stairs carefully.
I can still food shop with help, but I haven't shopped in a regular store or the mall in ages. I cook about 1 meal per day, but plan carefully how to spend as little time at the stove as possible.

We have no extended family, my mother when alive thought only of herself and it was frustrating, she was 30 years older than me before her life was similarly limited. The children understand for the most part- my two biological sons inherited CMT so they understand too well and are frightened at the progression in me. My daughter, the eldest, is used to mommy and daddy fixing everything and comes home all the time with two babies, overwhelming me and expecting us to give her a break. She doesn't get it at all, or rather intellectually she does but her needs are greater than her self discipline.

My youngest is a natural empath and is constantly offering to help. He gets it and I feel guilty because he has so many problems of his own and I am not half the mom for him I was for the others. The second youngest only thinks of himself, but is pretty self-sufficient so makes few demands. He does make a lot of stress which I could do without.

Empathy and understanding are rare qualities and this is a difficult disease to explain. People get bored long before they have achieved any level of comprehension. I have no small nerve fibers in my feet and legs, and the axons in the large fibers are going. When that happens the muscles die back. Like muscular dystrophy, but atrophy. It's hereditary. Even the doctors who know what those test results really mean have been dismissive. "At least it's not ALS." I know that that is true, this isn't life threatening, but the combination of inactivity and pain medication is certainly life-shortening.

My husband is the only person I can really complain to and this has already made such a huge burden for him. We had a clear division of labor- he made money and I did everything else. Now I contribute little, we need a cleaning woman, and there are a lot more convenience foods. My medical bills are not huge, they won't test me for anything anymore because I have a diagnosis, but they are not small either. I have to see the PCP every month for my medication. Sometimes the stress really gets to my husband-he has a very high pressure job as the keeper of all knowledge in a large company where every question lands on his desk. It was my job to keep family things from overwhelming him. Now I am another of those problems rather than the solution. I do not see the future in a positive light.