But it’s not working right now. I just want my life back, you know? My biggest side effects is lightheadedness and migraines that make it so I can’t see sometimes. I want to be able to go to college football games with my friends and to concerts but I can’t do any of it anymore. I guess my question is how do you stay positive every day? Does it ever get easier or better? I’ve only been dealing with it about a year and I’m already exhausted. I’m usually a positive person and try really hard to stay that way and keep a sense of humor about everything but sometimes it’s hard. I’m hoping to learn what things keep you going when you have to miss out on great things. Thanks
Put on some music that you love, the types that gives you goose bumps. Cry it out! Sometimes you just have to. I feel for you trust me. I know how the pain can be! Take a walk, a nice hot shower, put on some comedy on you-tube lol, just a couple ideas...you will have those ruff days, we all do! Just know there are better ones ahead. Try meditation, it works wonders for me. Stay positive! DC from Chicago.
So sorry to hear you are having such a bad day. DC has a bunch of great ideas!! Please remember you are not alone we are all hear to listen and help. Where are you in the treatment process? have you seen a Neuro Surgeon?
The fact is, in some moments you don't feel positive. I find it really important to let myself feel that. It sounds like there are many losses right now and admitting that it huts is an important part of the grieving process. Then, let yourself do something you can still do and really enjoy that moment. If you have a friend who gets it, maybe they can listen. Imagine any other loss. This isn't any different. Can't swing over it, gotta go through. Just know there is something on the other side and you're not alone. And, yes, meditate. Good stuff!
i understand how you feel it is frustrating. but you have to stay positive or this disease will get you down and depressed. I suffer with bad headaches and back pain everyday sometimes it gets me down in bed a couple of days and I have learned that I will beat this it wont get me down its hard but I feel like that is what I have to do now. its been almost two years since my surgery and I still have trouble and I have accepted it. I hope you get to feeling better.
This is something we all struggle with. Please know you’re not alone. Everyone must learn how to stare adversity in the face and smile. I myself know exactly how you feel. But for me (from the peanut gallery) this is MY life! I choose the mood I’m in, I know when I’m wallowing in self pitty and when I’m actually working with my body with in the new peramiters I have to adapt to. It’s healthy to “cry it out” like DC from Chicago said.
For me,I find that helpin others is my life elixir. Simply by sharing my smile with others, sharing little notes to people I meet out and about that tells them they are beautiful, opening a door or saying a kind word to quell the anxiety of a waitress who is over worked, under paid and stressed.
I know right now you see no light at the end of the tunnel, but there is. You might need a little soul searching to find, what really makes Ellie happy.
You will find your positivity again. It never left you, it’s just been watching in the wings while you find yours.
Ellie, I’m so sorry, it’s an absolute wretched thing to cope with. Even the most positive person will deal with the, well, grief. I liked what i read about just going “through” it cause you can’t go over it. Allow your feelings, you are right to be upset. As I go through this I find it gets tiny bits better, barring no more bad news or new symptoms. I try to keep a balance with the bad and what I’m grateful for. I’m glad you posted this because your not the only one feeling this way, it’s good for you to vent and everyone who can relate.
I just went to your page to refresh my awful memory! I could not remember your story.
Tell me if I am correct..you were diagnosed..8mm CM had CINE...CINE did not show blockage..so NS said no to surgery..is that correct??
If so...This is just my own opinion and experience here...The way my NS explained the CINE to me is something like this...The CINE is a tool...but not an absolute...he told me that there are places in the brain in which the CINE may not show a 'sluggish or diminished flow'..If I remember correctly, I think it was the Cisterna Magna...one of the 3 main openings in the subarachnoid space.
My NS took all things into consideration before suggesting decompression for me..MRI findings..symptoms..ect..
Just my thoughts...what about a consult with another NS??
As far as staying positive...you got wonderful input! I think just you sharing here is a positive move! Keep letting people here know what is going on..how you are feeling..emotionally, physically..I find that it helps me when I reach out to the group..
here for you!
Bless your heart, Ellie. You're trying to be superwoman! I don't think it's possible or even healthy to stay positive all the time with this. I agree 100% with those who say to cry it out and walk through the pain; you can't jump over it. Grieving is healthy, and denial is part of the grieving process: we all first try to jump over the pain as if it weren't there. You'll find yourself at times in denial, bargaining, depressed, and finally accepting the illness. It does NOT have to permanently steal your joy in life. Just know you'll have those days... I like to count my blessings by considering those worse off than I am, by focusing on what I CAN still do rather than what I can't do, and realizing that there are thousands of others in this boat. I know you want your life back where it was. I do too. I personally believe in miracles, so I'm never giving up my hope for a full recovery (even though my family thinks I'm crazy). Hang in there. You'll have better days. I'm certain of that.
My 18yr old son has a 12mm Chiari he was almost bedridden with 24/7 headaches, muscle aches, brain fog, memory loss,stomach issues, vision problems and hearing loss. He was A/B honor roll student and had to homeschool and was a world champion jet ski racer. Now he is a 100% percent better with no decompression surgery! We did a complete lifestyle change and detoxed everyday in a sauna for 6 months. Everything we are surrounded with is toxic and our food is awful. Toxicity causes inflammation and the inflammation causes 90% percent of the problems. Once we started to detox and eat nothing but organic/grass feed he started feeling better. I clean with only chemical free products. We use no perfumes and I don't use scented candles. I juice only organic vegetables every day and now my son is on top of the world again racing cars now! Lol His website is 11racing.com Alec Hohnadell:))
To everyone here: Your resilience astounds me!
“The oak fought the wind and was broken, the willow bent when it must and survived.” -Robert Jordan (The Fires of Heaven)
Never be a victim of life; be it's conqueror.” -Mike Norton
I just wanted to add to what Lori has posted if her research is correct that you have a 8mm herniation that might be enough to cause the symptoms you’re suffering. I can tell you from many years of begging for help and getting nothing,I had A very insignificant herniation but was very sick,research chiari0.You will find that some of the specialists are looking at no herniation without any flow blockage,my fluid flow was blocked at the brain stem itself by the tonsil it was not seen on the MRI.The trouble with diagnosing chiari in our medical communities are that they put to much importance on herniation.I know because of what I’ve been through 29yrs.I finally found a specialist that believed that the symptoms described by his patients was what to go by.He did the right tests to find the conclusions not herniation but tilt table,special mris,and his years of expertise, he is a pioneer in this field so this is not new to him.The chiari 0 is one thing that most NLs or NSs don’t even consider,it’s why so many suffer today without finding the right specialist I would still be hurting.Dr. Rosner in HendersonvilleN.C.is one who has been in this field for many years and is one of the best.
So well said put, Ellie. I think you have started to show you are committed to being positive by being honest with those that can understand. It is tough and it impacts our lives & our loved ones lives (my husband to be started smoking again!). It helps to share - well done!