I am just venting here but I think one of the single most frustrating parts of this disorder is the stress it is putting on my family esp my 7 year old son. Last night we were laying down watching tv & my legs started their wonderful twitching thing I do so much now. My little boy was so concerned asking "mommy are you ok? you sure are jumping a lot". He asks me if I am ok at least a couple of times a day. My husband gets frantic whenever I don't answer my phone because he is afraid I have had another dizzy spell or something has happened to me. My kids out of state are constantly checking on me & are so worried about me. I am used to be the part of the family that hold everything together. I can't stand not being able to make it better on those I love.
Hi Becky,
I am sorry you and your family are going through that. I can relate. My youngest will no longer sleep in his room. He feels more comfortable sleeping in my room, knowing he is close enough to hear me if I have one of my exploding headaches so he can "help". He hops up, gets me a cold water bottle and an ice pack and will bring them to me, rubbing my back until he thinks I have fallen back to sleep. It's a lot for a 6-year-old to handle :( It's really hard for me because I am a single parent and the kids rely on my to take care of them ... it shouldn't be the other way around.
:( I hate what this does to kids. With my twitching or jumping leg or whatever it is my daughter does the same thing. I feel for you and your family. It royally sucks
Hi....
That is what I find to be the hardest thing to deal with mentally....my girls...but ya know what I have come to figure out? Kids are resilient and if we give them an honest answer..they usually get it and appreciate it . Even at 7..your little one can tell when you are not well...but he cares that is why he asks.
But I know that the , what I call..."THE MOMMY GUILT" comes into our brain and when that thought comes in I really have to get it out of my head fast..I tend to let it snowball.."I am a bad mom, I am useless, bad wife, non productive.." All those bad feelings have taken its toll on me and my family as well...when I feel gulity over being ill my family picks up on it and at that point I am usually in a depressive state of mind..so I try to not let myself feel the guilt about being sick...We here did not choose to have this Chiari thing!!!
Sorry if I wrote too much and went on and on and on....
Hi Becky,
My daughter was 8 years old when I became sick and three years later I had Microvascular Decompression surgery a year later I had my CM Decompression, Crainectomy & Laminectomies C1-C6. Two years later I had a discectomy on C-5. In between I had a major spinal fluid leak and meningitis and sever motion sickness. My daughter is now almost 19 yrs old. I have an amazing NS. He has spent hours discussing things with Victoria so she would understand. She is very protective of me and can tell when something is going on that is different . I knew I had ruined her psychologically with everything I had put her through, but she is in her second year of college, with a gpa of 3.98. She has a full time job and so many friends I can't keep track of them all. I believe if we love our children with all our heart and explain to them age appropriatley when they have a question, they will adjust & thrive. All they want is love and reassurance. I know by talking to you that you are an amazing Mom !!!! Trust yourself.....I know we have all been through hell....but we are Mothers first and foremost....