Chiari Online Support Group

Feel like giving up


#1

So sometimes I feel like giving up things have been getting worse and worse and worse I fell and broke my fingers tore every tendon ligament in my hand my migraines are getting worse I’ve had to call out of work nothing’s going right my kid’s birthday is coming up Christmas is coming up and I need to be at work I’m not looking for no pity party I don’t know I just want to give up sometimes and what sucks about all of this is when you cry your head hurts worse sorry guys


#2

Dear Ericabak,
So sorry to hear your struggles. Just know this… you don’t struggle alone! You have a pack of “Chiarians” who know. It is really hard having a CHRONIC illness like Chiari’s - one that just never lets up. Never gives you a break! I am fortunate enough to say that since my decompression surgery, I have three relatively pain-free, functional days - but every fourth day, ALL the Chiari symptoms return; the paralysis, the pain, the depression, the hyper-sensitivity, digestive collapse, eyes dry up and won’t focus, etc… Because these symptoms keep returning (And can return with any stress) I can no longer hold a job. I tried, and was told by my employer on day #2 that I wasn’t functional enough to do any job! So, after years and years, I’m on disability. So, I’ve lost my job. Because of the every-4th-day paralysis, I sill lose Thanksgiving, Christmas AND my Birthday! They all land on that “paralysis day.” I’ve lost Thanksgiving for the last 5 years - the paralysis is so regular. Because of that, all my friends are weary of helping me. They no longer bring me special plates of turkey and stuffing. They did at first - when they first got to know me. But, the problem with chronic illnesses is that the rest of the ‘normal’ world gets weary of us. I’ve already lost every member of my family years ago (2011). They just assumed my illness was ‘all in my head.’ I was making it up. They thought I was faking the pain just to get opiate painkillers! (at the time I was on them - but only for 9 months) There really, truly, is no one in my life who cares what happens to me, now! When I visit the Dr.s, and they ask me to put an emergency contact. I am unable to! It really is scary. I am trying to make friends with folks in rehab and nursing home facilities. They may/might be the only ones who can relate to me - and vice versa. But even then, many of them still have throngs of family who come visit. So, having chronic pain is awful, hopefully you can find some distraction with the celebrations and birthdays coming up. (I know this may not work for everyone, but when I get super lethargic in the brain and don’t have the gumption to face an activity, I drink a Pepsi or two. Pepsi seems to spunk my brain synapsis right up!) Hope things go better! BethR


#3

I feel for you both. I lost most of my family long ago because they think you are lazy and some think you are crazy. Knowing now that something is really wrong is half my battle. I knew I was sick but no one else did. I would cancel last minute plans with friends cause I was sick n they would get tired of it. I am worrying about me n my son and the few friends I have left. There was many times I thought of ending it all but you can’t. I just keep my faith n talk to God alot. I stay to my self. Right or wrong I just don’t have it in me any more to deal with drama. Good luck to you and God bless you!


#4

Dear Rumble… So true your family can think you are crazy! My mother actually had me committed to a psych ward back in 2008! I was coming off 9 months of managing pain with opiates (morphine, oxy, ritilin, percocet, norco, etc…) And opiates lower your pain threshold exponentially. When I came off the opiates - rather cold-turkeyish - I went rather burserk with pain. It was incredible. I was writhing on the floor, begging someone to just STOP THE PAIN! My mom took me to the ER - and they threw me in ‘the ward,’ thinking I was screaming about ending my life. I just wanted to end the pain!!! Needless to say, I came off the opiates, but the pain remained excruciating and debilitating until my decompression surgery in 2012. Pain really can make you crazy!


#5

How are you now that you had the surgery? My parents are both gone and I still have 3 sisters. I only speak to 1. She is in a nursing home. I just got word that my surgery is scheduled for Dec. 4th. I can’t wait. I don’t have any pain pills to take so I am dealing with this on tylenol. My right shoulder down into mmy finger tips is so painful. I am counting each and every day. I sure hope you are better now that you had the surgery. I am also sorry for what you went thru till you had your surgery.


#6

WRumble, I actually had my decompression surgery 5 years ago - Feb. 2012. I’d say I made a 75% recovery from Chiari’s since then. I have a bizarre situation where I get 3 normal, pain-free, functional days… but then every 4th day (and every 12th week-the whole week) ALL my Chiari symptoms return. This has been going on for the last 5 years, without missing a day. On that 4th day, I lose most of my muscle control (I call it ‘paralysis’ for lack of a better description), I can’t comprehend any language, pain can return, my IBS returns, I lose my gag reflex and aspirate on food & drink, etc… Just like I was before the surgery 24/7. Depression descends like a black fog. This condition persists for 24 hours… and then goes away. I am very grateful that at least these re-occurring symptoms do go away!!! Then I get 3 normal days again… on an on. I don’t know whether to call these re-occurring Chiari symptoms “phantom pains” from my Central Nervous System - or what!?? Technically, I think I am all healed from the decompression surgery. Why the symptoms return every-4th-day is something my neurosurgeon doesn’t understand, either. I have actually been able to take a 2018-2019 calendar, and ‘map out’ every single day - every 4th-day- that I will have the re-occurring Chiari symptoms. Normal people really do think I’m making things up when I say, “Oh, I’m GOING TO BE SICK… on such and such a day…” But, I really can predict when the paralysis-“Crash” days will happen. (My theory is that the brain stem - which is in charge of your body’s cycles and has a timing mechanism in it - got permanent damage in my Chiari squishing.) I hope your surgery goes well. Everyone recovers differently from the decompression surgery. I hope you get a HIGH percentage of recovery! -BethR


#7

Thanks for the info Beth. I appreciate it. I have a little over a week to go till surgery n it feels like I won’t make it cause of my whole body n system going haywire. I stopped having headaches over a week ago n started having terrificpein in my right shoulder near bicept area going into hands. Now after a week that had lessened n the headaches n nausea is returning. If I am repeating myself I apologize but I do have a shunt in my head n the doc said it is only helping to remove about a 1/3 of the fluid right now. If they turn it down the headaches get severe so for now it has to stay where it is. I have suffered so long that I don’t remember what normal is like anymore. Thank you for well wishes. Sorry they casn’t help you to be 100%. I am being positive but it gets hards some days.


#8

Dear Wrumble,

By now, you have had your surgery! How is it going!??!?

Eight weeks ago, I met a gal who just had Chiari decompression surgery. She is just now starting to feel better and is getting SO EXCITED that agony that she has suffered with 24/7 is finally dissapating.:rofl:

It does take time to heal. My neuro-doc said that CNS (Central Nervous System) healing is not the same as muscle or bone healing. It’s not a gradual process. CNS heals like a roller coaster. You’ll feel bad, then swing up into one really good hour, then plummet back down into ‘ick.’ Then, a while later, you’ll swing back up and have TWO super good hours, then back down, etc… Hopefully, those good hours will gradually increase to 3,4, 5, until weeks, months, years later you will have good days, weeks.

Anyway, that is exactly how it worked for me. My CNS healed like a roller coaster. I don’t know if all Chiarians heal like that, though. Everyone is so different. You’ll have your own story, I’m sure! Now 5 years later, I still have three very good ‘normal’ days - and the 4th day still tanks into Chiari symptoms. I will probably never heal 100% (because I waited 10 years with severe compression before being diagnosed properly - and had the surgery. Therefore, permanent damage had already occurred). But, I am SO happy to get even 75% healing! :roll_eyes:

Also, my neuro-doc is very into pushing his patients into activity to promote recovery. I was booted out of the hospital 24 hours after surgery, and told to “get moving!! MAKE yourself move!!! Get those nerves talking to each other!!” Wow. That was so very hard. "Cuz I did not feel like it. Now, I don’t regret it one bit. But, at first, it is hard! Take courage.

Bethr


#9

Beth that is how I am healing, you just described it. Like a roller coaster. I have a few really bad hours usually in the morning. Then I finally feel better. First it was for an hour, then two hours. I had a bad day yesterday n this one is just as bad. My head feels like it is going to explode right now. No time for medicine in sight. So I suffer n go back to sleep.


#10

Dear Wrumble,

How did your surgery go Dec. 4th? I do hope and pray your good days get longer and longer. It seems like my bad times fell in 2-hour increments. Right after surgery, I’d wake up in the middle of the night and experience the old agonizing Chiari symptoms for 2-hours. Then, it would fade away for 2 hours. Then come back for 2 more hours. Even now, 5-years later, on my good days, I might have a single symptom (like my eyes tearing uncontrollably) will go on for 2 hours while I’m at work. Then… poof! Go away. But, at least MOST of the day (on a ‘good day’) I am symptom free! I love those good days. A good day was something that never occurred pre-Chiari surgery!

I was re-reading an older e-mail of yours and read how at times it’s just you crying out to God - when everyone else fades away into the horizon. How I can relate! God has been the only One there for me countless times. It seems the longer you have chronic symptoms, the more your friends will walk away. They will walk away because they can. We can’t. God won’t. So, He becomes your BFF while all your other BFFs disappear,

But, I’m finding that God will use your pain to help others. I have a friend with MS who is going to have the Deep Brain Stimulation surgery in a week. All her friends - even family - have walked away from her as well. All her normal friends and family who are inconvenienced by her chronic condition got involved in their own fun and gave up helping. I am the only one left for her. I have committed myself to helping my MS friend get her brain surgery done because I’ve been there! :wink:

Bethr


#11

I am only 10 days out of surgery n it seems things are changing in the recovery process. It seems like things are all over the board right now. I get a good few hours n then a day n a half bad. It just keeps changing. I get a few hours now n then where my head feels like it is going to explode. I guess it’s too early to tell. I hope your friend does well in her sugery too. Please don’t hesitate to contact me n let me know how she makes out. I have to admit I am a little forgetful in remembering too do things. I sure hope that goes away too. Godspeed n God Bless you both.


#12

Thank you it’s just been one thing after another you know we had a snow storm here and we lost a lot of power and then a tree fell on our house and then was our power came back on there was an old fuse box filled up in the closet of my bedroom and it caught fire burning up all of my clothes have the Christmas presents my whole room caught fire we finally got it out but we had to keep the power off until we’ve got somebody to come out and fix it cuz we don’t want to call insurance companies because the house is it up to code anymore and we’re afraid that they’ll take the house away something so it’s just been one thing after another after another and after another after another I just don’t know what to do anymore


#13

Dear WRUMBLE,

Wow. By now, you are a little over 2 weeks post-surgery. Don’t be surprised if your nervous system is still ‘all over the map!’ Although I was able to feel a good hour now and then post-surgery, these hours did not last until 3 months after the surgery. So, don’t be surprised if It takes a while to see healing. Another acquaintance of mine just had her Chiari surgery in Oct. and now in Dec. she is JUST NOW starting to feel moments of ‘normal.’ :roll_eyes:

So… yeah. Don’t fret if it takes a while.

My neurosurgeon told me that when my nerves were beginning to heal, I would start to feel pin-pricks. He was so right! Except, for me, it wasn’t like pin-pricks. It was like fire-ant stings! Of course, prior to my Chiari surgery, I went totally numb all over my skin. Under my skin - deep inside - I was in excruciating pain. But, my skin had lost all sensation of touch.
But then when each touch nerve ending began to wake up, it did so by giving me the sensation of a super-sharp fire-ant bite. For months, I was frantically checking myself all over for crawling, biting, stinging ants! (There were none.) I don’t know if you went numb as a Chiari symptom prior to surgery. But, recovering nerves can form all sorts of odd-ball sensations when they are waking up! (I guess we are to take this as a good sign?!?!) Hope to hear more good recovery signs as 2018 comes on!!

-BethR


#14

Hi Erica,

I’m fairly new to ModSupport so you won’t recognise my name, but I’ve been reading all the posts here for some time.

Just wanted to say that I hope you’re okay. That is just the most dreadful thing to happen, especially at this time of year. How are things now?

Wishing you strength to get through this very difficult time. I bet your kids will understand if Christmas isn’t quite as expected - they’ve got you, that’s the main thing.

All the best to you,

Christina from Moderator Support


#15

Dear Ericabak,

Whoa. I just re-read your post. Your miseries have nothing to do with Chiaris - they are pure miseries!!! I’m so sorry! Nothing makes pain worse than stress - and it sounds like you’ve gotten a busload of stress! Insurance is notoriously slow, and this time of year probably even more so. I hope you have friends or family around who can help - how are you able to recuperate from surgery without some help?!?! Again - I am so sorry for you - I just want to cry for you.

BethR.


#16

BethR I did not go totally numb in my arms legs hands n feet but it was close. Right now the top of my right hand has a slight burn feeling o n top of the skin and my hand will ache. I thought maybe this ties into the nerve pain I have in my right shoulder n along my bicept.I get played out real easy. I am always tired. I will be anxious to see how this all plays out. The noise in my ears has not dissipated at all.


#17

I’ve been better thanks for asking. I have a killer headache and I’m working now through new years without a day off but I’m here and your right that is the main thing. Hope your doing ok as well…
Thank you Erica