kpc458,

Its comforting to find those with similar lifestyles dealing with this craziness.

So nauseas all the time...
sitting here today at home with 3yo..
head pressure, plugged ears, right temple throb and around head off and on.

Don't want to eat...but know how important it is to...so I choose soups.

Overly irritable these days...loud noises from kids playing (and arguing) send me over the edge!
Son wants more oatmeal...why does that frustrate me...it shouldn't! UGH...

I don't like this girl I am right now....
Being a good mother is huge for me..but I am seriously failing these days...and feel very disconnected from my kiddos.

Putting on my kiddos coats today...I slowed down...slowly went through the process...and tried to be present...knowing there will be a time when they don't need me to zip their coats and put their mittens on. *tear

There is a great FB group...and I love everyone there. And easier to converse.
are you apart of it? Are you on FB?
I can send you an invite to you and anyone else :-)

feel free to email me as well.

Maine Mamarazzi

Mark,

I live in Litchfield, quiet town but centrally located to Augusta and surrounding areas. Not bad drives at all.

I am not way up in potato picking country ;-)

I know where Litchfield is. I have a friend who lived in Livermore Falls. My dad grew up at the head waters of the Androscogin in NH. Great country. In '92, I took my family back to your country and toured from Burlington VT to Mt Washington NH east all the way to Bangor then down the Maine coast.

Have you tried using ear plugs to take the edge off? They will also remind your kids of your sensitivity to sound.

Have you had any vestibular diagnostics done?

I know what you mean about wanting to cherish your time with your kids while they are young. Do they understand your struggles? There is no reason to not sit with them individually and explain things and tell them how much you struggle to be the mother you and they want you to be.

I am starting it all over again. My daughter who lives 15 minutes away had a little girl Sept 17. I love 'Papa' time. She gets a laser focus on my voice and smile. We'll have her for 2 to 3 hours next Friday. Good times.

btw, I am right in the middle of potato and sugar beet pickin' country. Plus seed and feed corn and lots of dairy farms. I miss the hardwood forests of New England.

My best to you.

I understand that you want to be the same kind of mom that you were before, but right now you are not and that is hard to digest. I had to ask my kids for a little more help and make them aware that when they are super loud it hurts mommy.

I am also a member of that group I hope to talk to you soon!

Oh my, does all this sound so similar. I am glad you found this resource, too. I wish I had found it earlier in my PCS journey, but very thankful I have this resource now.

I thought I was a nutt job, lazy, crazy, etc., and kept trying to stubbornly push through until my anxiety level was so high that when i finally realized I had to do something (over 1 year after accident), some of the doctors just thought I was hormonal and anxiety-ridden woman. Took months to get into neurologist. Had many tests done finally--MRIs, CAT scans, EEG. ENG, myelogram. Nothing "alarming" showed on brain MRIs but ENG did show damage to ear/brain area, and mris/myelogram showed damage to C-5/C-6 area of spinal cord and nerve compression. Neurosurgeon I was sent to wouldn't do surgery, but basically gave no other explanations or advice. Same from neurologist. My doctor didn't like that answer so awaiting an appointment with a different neurosurgeon. Comprehension testing just showed some little level of impairment--I must have been brilliant before the accident then (grin) as the impairment is much greater than tests showed. If they would have tested me later that same day, I probably would have forgotten or been so confused I would have failed miserably!!! I hope you have a decent psychiatrist. Mine seems to be the only doctor who actually has kept me going.

Anyhow, just keep reinforcing that how you feel is real and important--your family may sympathize, but they cannot understand. I feel like using my cane again as people are more understanding and nicer when they can see the disability, and we cannot parade our brains around. I have been really glad that my children are teenagers and older. You remember that YOU are the most important thing for your children to have--not a clean house or perfect mother.

Delegate the lawyer stuff to someone else if possible--husband, parent, etc. Dealing with doctors is exhausting enough.
Insist to the VA hospital you need help and see if you can get help at home.
Contact your local veteran clubs-American Legion, VFW, etc., and see if they can get you a volunteer to help you in your home or shopping or with children or something.

We know how hard it is to ask for help. Also hard to live with a disability, temporary or not, when you used to be active and energetic and have others depending on you. Just remember you need to be helped so you can get better and adjust your life to assist you in getting rest. Your children need your love the most, and I am sure they have that in abundance, so try to get some help with them so you can concentrate on healing their mom!

I have sent you some messages I don't know if you get them,I just wanted to say good morning and hope all is well with you

Good morning,
I hope everything is ok with you,I'm doing ok just trying to get all the decorating done for the holidays

Dear Maine,

Hello and welcome my love. You really are suffering aren't you!
I hear a lot about lethargy, tiredness.

You are coping with so much. Just the law suit alone is stressful let alone everything else you are dealing with. The trouble is I have a feeling you may crash and burn. I want you to use some tips on how to survive.

Tiredness is a symptom. You must sit down and talk to another adult about your whole experience. Tell them you do not want answers you need to talk and they must listen. When we tell a story it makes everything that is spinning around become logical. It also physically lets it out. You must do this. It may take a few coffees but it must be done, this is how women work.

You have written us a typical day in your life. Please sit down with your husband and write out 1 weeks schedule together. Within that schedule must be Mummies time. It may be just 2 hrs. But your brain will then know that those 2hrs every week are yours. Take a bath, go for a coffee with a friend, go for a stroll round the shops, whatever relaxes you the most.

You say you are not hungry. Our brains switch off from hunger when the body has no fuel to burn the nutrients. You know this but your brain has gone into starvation mode. It will tell you to bulk up on sugary high calorie foods to stop you dying! Please spend 3 days eating one 1/4 plate of carbs, one 1/4 plate of salad or veg and a 1/2 plate of protein. 3 times/day.
This will kick your system back into the need to eat, also by some enzymes from a health food store that encourage hunger.

For now that's it.

Much love to you, keep in touch.

Welcome to Neuro Talk. You will find some good souls here who can understand what happened to you. I hope that you get a definative DX from your doctor. I don't have PCS, but I know many here who do. Please enlist the help of friends as much as you can to give you a break, and rest is really important. Maybe even a church could step in for the few hours a day to help you to relax and rest. We all care here Sabrina, no matter what our health conditions are. We are kind of like an extended family. Glad you found us. don't give up, just keep trying to get the help you need to get better. PCS does get better in time. Your youth is a big plus. Go easy during the holidays, and enlist others for the extras. I will keep you in my thoughts and prayers. Glad your children are OK. ginnie