I'm dealing with the stress, pain, and anxiety at the onset of my nerve issue increasing in symptoms. There are things I can't do, and things I should not do. My life is in need of some drastic changes to try and heal or at least get over this flair. I'm back in the process of seeing doctors again, tests are scheduled.

How do I tell my girls? What has been your experience? What worked best for you?
How do I tell them I'm not working, when I'm struggling myself wondering if I will ever be able to hold down a steady job. (I was recently fired due to my unreliability, because I ended up not being able to use my hands, which movement has since improved, but I have pain if I do any action repeatedly.)

My girls are 13 & 16, so they want to know everything, and then get really worried, and stressed themselves when they hear bad news. I could be honest and tell them what I do know, but right now that's not a lot of anything definitive.

Please share your experience.

I have four kids and I find that he truth is always best. If you don't tell them they actually think things are alot worse. I try and take a team approach. I am single and was in bed for almost 4 months with only teenagers to take care of everything. I found the more the new the better it is for everyone and as a family you can work things out. All of my kids have decided to take jobs to help ease the financial burden. The one time having 4 kids can really be helpful.

Best of luck, I know it is an ongoing struggle.

I'm not an expert but I agree with NormaW. My kids are 14 and 17 and it's best they understand what is happening so that they don't think I have cancer or am going to drop over dead on them. When they can see I am in pain and having difficulty getting around it's better not to leave them with their imagination running wild on what is happening.

LillyLee

I agree with the above posters, the more info the better, as kids have a tendency to imagine it is worse than it it and you do not want them to be afraid. Also, you will need their help. Mine 14-29, 5 of them, the 3 youngest at home still. I am pretty disabled so they have to help, although their father helps a lot.

I have not been following your symptoms, Abby, any chance of yours being a hereditary neuropathy? I passed this on to my eldest son, 28, and he has trouble walking and extreme ankle weakness. The possibility of passing this on to a beloved child kicks this whole issue up in intensity. I m very thankful our two youngest are adopted.

I was sick with several problems the whole time my son grew up. He is 33 now. He was helpful from age 2! Just getting me something to drink, etc. He has grown to be a very sweet person that is very helpful to his family, and new family, inlaws etc. Loves animals also, that is another thing I wanted him to grow up to have, love of pets. He did just fine. Life has ups and downs and they can learn that helping and loving each other is important.

Tell your teens the truth, calmly and truthfully. They know most of it already. It is best coming from you, so they can respond. My children were 5 and 6 years old when I got an auto immune disease. They were told the truth as much as they could understand. Best thing I ever did, as I wound up leaving home to receive treatment. Saw them on the weekends. If they didn't know the truth, how would they have felt about what I had to do??? It worked out very well and drew us closer together. I wish you all the best. ginnie

Those were really hard times but I tried to hold it together best I could at home. Cannot explain to a 5 year old about PN so I just blamed all my crappy days on my bad back. He totally understood that. He is 14 this year, and still doesn't know about my PN. The worst part Of my PN was the first few years 8 years on I am use to the mild dysfunction, pain, muscle spasms, ect.

So I still just blame crappy days on my bad back.

I too have been telling my kids (7&9) that it's basically a bad back, with some additional pain in my feet, legs, etc. I do actually try to talk to them about why I am now working from home mostly and have tough days, but honestly they don't actually seem too worked up about it. They are amazingly resilient, happy, self centered creatures, how hard should I try to explain this? I worry that perhaps its bothering them more than they let on...but on other hand, don't want to worry them more than necessary by pushing it on them

I was diagnosed by my primary care doc with idiopathic peripheral neuropathy of the large intestine. (though there have not been any tests done that confirm this, so I'm not confident) I struggled with pain, negative tests of all kinds, situational depression and anxiety, exploratory surgeries, and a whole slew of doctors that didn't care to listen to me. Finally, when my primary put me on Cymbalta I found some relief. I changed my diet to a vegetarian one and have been able to manage my flairs without meds for two years... Until new stuff popped up. I nev had the tingling or numbness so many on the board mentioned, until now. I took my youngest to see Wicked - the musical. It was wonderful, but the seat was tight. I had my legs crossed and arms resting on the arm rest. My legs started to fall asleep, so I had to keep changing positions. Then my arms started tingling from the arm rests. It became quite uncomfortable to sit through the show. The tingling became intermittent throughout the rest of the weekend, and when I went to work Monday it became painful. I use tweezers in a repetitive motion for detail work. I called out of work to let my hands rest. I only use the tweezers in my right hand, but both were tingling and painful to use. After a few days the tingling lessoned, but then my thumbs lost all function in both hands. I couldn't use them. I called and scheduled an appt with the neurologist. I have a nerve conduction survey & EMG scheduled to provide more answers. The use came back in my thumbs, I was fired, and now I'm just trying to keep my hands rested to not destroy the nerves any more than I have.
The girls know I don't go to work anymore, and they know I am having issues with my hands. (I will often have them wrapped in ace bandages, as the compression seems to help when the pain is bad.) I haven't given them any more info, as right now I just don't have it myself. On another thread someone mentioned that my newest symptoms sound like HNPP, I checked the info on that, and almost describes my new symptoms to a T. So, I will wait on the tests before I tell the girls anything else, or even get worried about them. HNPP is hereditary, and I am uncertain on my feelings of testing them if this is my diagnosis. Right now, I'm taking one day at a time. Concerned about any future employment prospects if my hands aren't reliable. Also, therer's the concern of pushing myself too far and doing permanent damage if I can try to gain employment again. I'm concerned the tests the neurologist is about to do will show negative, and I'll have no reason, or explanation for my issues, as has been my past history.
I'm sorry I didn't have an easy answer to your question, I'm just not that far along in the process with this new symptom. I assume that's also why I asked this question of this forum. Without a clear diagnosis yet, I am simply a jumble of symptoms, and fear. I don't want to transfer fear inadvertently to the girls in trying to explain something I just don't have the answers for.

Thank you all for your support and help. The girls do know a bit, as I do have to ask them to step up more than usual. They help with dinner, open my jars, drinks, and anything else that requires the slightest effort of the wrists/thumbs. They cut me slack, and are understanding if I need to take a nap, I think they might even enjoy the unsupervised time that allows.
We just haven't had a "real" talk about it. I'm afraid of not being able to answer their questions, and scaring them more by not having the answers.

The overwhelming advice is to be honest about it. I agree. I just don't know "how" right now... So any advice on the how part?

Thank you to everyone! You all are so wonderfully supportive.