Family Matters
 

For your entertainment, I thought I'd share some PN related comments from a family in denial despite repeated attempts to educate them.

"You're STILL not feeling well?"
"You seemed fine last week"
"Would some soup help?"
"You look great, not sick at all!"
"Maybe if you got some exercise"

And my personal favorite...

Family member: "I guess there's a new laser for nerves. Maybe you should try it."
Me: I don't have that kind of neuropathy. I have PN all over my body.
Family member: "Well. We tried."

Two years after my diagnosis, my closest sibling sent me a text: "I heard you still don't feel good".

Unbelievable.

It seems no one understands besides other PN sufferers. If you had cancer, everyone would know what that meant but most people don't know what PN is and they don't get that it's a complex disorder, one that obviously doesn't get enough research or media attention.

I find it frustrating when loved ones fail to educate themselves about PN. We have the internet now, there is no excuse. If you don't know what it is, look it up.

It is frustrating as you are correct in that the only people who get it are those who have PN. It is a lonely journey. Marriage becomes a rather depressing endeavor when dealing with PN as well. I love my wife and am very grateful to her. I will never be able to repay her for all she has done for me. I fear her repayment in life will be to witness and care for an increasingly debilitated spouse. That's been very hard for me.

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.

Thank you for sharing this Susanne. Some of us have more support than others but even with it, there is a lonely and isolating component of NP.

I posted this thread to give others a laugh, maybe show them how fortunate they are if they have support and to vent my own frustrations with my own family members who throw their hands up and dismiss it because there is no fix. You cannot simply pop two aspirin and go about your life. Many of us are doing everything we can, exploring every option to improve however we are still stuck and support and compassion from others is extremely beneficial, if you can get it.

Yes you do
 

You do know what it is like to give up a career, or at least have to make compromises. I could tell that you were June Cleaver to the 10th power. I am sure that ALL your family thinks so even if some of them have overriding agendas. I also have one or two that are way too entitled. That comes with the territory when you love and protect to the degree that you do. I remember your posts to me when I was about as freaked out as a person could be and I thank you. It sounds like your career has changed, and all change is hard. You might not be the Tazmanian Devil you used to be but you are still in there using your brain to cope with diminished abilities. Surely over the years you have built up some brownie points and a few get out of jail cards. Guilt should be tempered with the fact that you are still trying so hard!!!!! I apologise for so much dime store psycology but encouragement is all I have to give. Fight the good fight, I salute you,Ken in Texas