Can anyone answer this question? I am unsure, I have people around me who told me they would be there and yet I'm fighting on alone. I'm crying all day every day and I feel I'm falling apart.
Onesmind I feel the same way you do. I have been diagnosed have all the symptoms but I dont see Neuro till Nov 19 th im scared to death. Im here if you want or need to talk. This group is wonderful. I have met an amazing group of people here. And Im right with you I cry all day everyday. And I feel very alone right now. Sometimes it just helps having people who understand what your going through to talk to. My husband and I are seperated at the moment. I have a couple of close friends and my son is 19. All I keep hearing is "youll be ok" They just dont seem to get it. My husband has joined this group to support me. But what I really need is for him to come home and just be here with me. To understand what Im feeling and what Im going through. I dont know maybe im just a big baby. But im here for you if you need me just say the word...You are in my prayers
I'm relatively new to all of this as well..and also feel alone..even though I have great support, I feel like no one gets it except people on the two forums I'm on. I want others to get it, to understand it..and they just don't. I'm not sure they can. It's just difficult. We have to stay positive. I'm in CO to visit Dr. Oro this week..and I am afraid I won't have a good visit and this will be a wasted trip and I'll feel even more alone. I cry daily as well..I think we all know we are facing a lifetime of issues..or in many cases, have already had symptoms forever. However..we will get through this with each other's support and faith in ourselves. This forum is such a blessing of support. You are not alone!
Beeba & Emmaline gave really great advice. I will add to that by telling you.....at the stage you are all at in your Chiari Journey it is very scary. You are having a hard time accepting your diagnosis, while you are having symptoms & trying to deal with well intentions of uneducated family & friends or the noticed disappearance of those close to you. You are all on Overload right now. We all understand & have been there. Make sure you are sleeping & eating as normal as possible. If you need people to comfort you or just spend time with you tell them, because they don't know what to do or say. If your family & friends don't understand tell them to join this discussion group. We have many Members that are Family & Friends of Chiarians. Make sure if you are in pain to discuss this with your Dr. for pain mgmt. You should also talk to them about your anxiety & depression. Do not suffer silently. I wish I could promise your feelings would change overnight. That will come with time. Your main concern should be about you right now. I know that is hard for many of us, but you have to take care of yourself. Please know we are always here for you even if you just want to vent. I am so sorry you are all going through this. I understand all too well.
Tracy Z.
Thank you all so much. Your kindness and support on here is amazing.And since ive become a part of this group I am in such a better place mentally.Now when I feel the need to just give up I come on here and read. I am lucky to have come across this group and again so thankful for having all of your support. God bless you all! Faith
I appreciate everyone for letting me vent the way I did. It's a bit overwhelming and I'm trying to find ways to cope.
I hate that you are feeling so down and alone. Please come here when you need support, questions answered, or just to vent. We have all been through the struggles and the frustration chiari causes so we all know how you are feeling. Sadly it's almost impossible for someone who hasn't personally experienced these setbacks to know how we feel.
Please know we totally understand. Come and start as many discussions that you need to or post or send any of us a private message. That is what is so special about this forum. We all volunteer to help others get through what we have already experienced. We are all different & have different Chiari experiences. Please let us be there for you. We are like a family of sorts.
Tracy Z.
I have been there…just this past Aug I FINALLY was diagnosed with chiari after spending 8+ years of pain and docs telling me that I was stressed,migraines,etc. I did ALOT of crying because it was bittersweet. I now know what’s wrong with me but the thought of brain surgery makes me nervous. Although I have awonderful husband,supportive family and great friends I still felt ALL ALONE…until I found this forum. Here i was able to tell people that I was in such pain,or having a bad day,couldn’t focus,and was nervous about surgery. We tell people we are in serious PAIN, but can’t describe it so no one but a fellow chiarian could understand. If there is ANYTHING you need…DAY OR NITE, feel free to reach out to me. I too am still crying and nervous because I have finally set my date for my decompression surgery…so I am right here with you
I remember being soooo depressed the 1st few months after diagnosis. I cry rarely (always from anger of all things) but god knows I wanted to. I lost my ability to draw (I was a graphic design student at the time) and started limping enough to need a cane to walk. I hated it. I was 24, walking on a cane, and I like hip hop music and style. All I heard were pimp jokes and snide comments from the other students and occasional teachers. They didn't get it. Couldn't even get those demons out of my head and on to paper anymore.
As I became more depressed I realized that it directly affected my symptoms. So I learned to roll with the chiari. After he 1st surgery I had a nifty new scar that people called "beautiful." I felt stronger for having had freakin brain surgery and coming out ok. I adjusted my wardrobe to go with the cane, and settled into my role as handicapped adult/ stay-at-home dad. It didn't change who I was at all - it brought out a stronger, more mature side of me.
Do I still hate it? Absolutely. But I wouldn't be the person I am now if I hadn't gone through the depression, the struggle for understanding, and all the pain. You will deal with all of this and come out stronger than you were before. You'll even find new hobbies and passions.There is a certain satisfaction that comes from knowing that when faced with what had to be the scariest crap in my life, though I did occasionally bend, I could not be broken. This will not break you either.
Geez, I’m reading this thread just bawling. I’m so grateful to have stumbled across such good people. Beeba, I’ve been reading your posts all over this site and you are one special lady. Hope I get to know you better, because you seem like a really great person to have cheering you on through the rough spots. God bless you & yours. Dylan, I really appreciate you giving your perspective, not just as a guy, but as a younger person. I was diagnosed at 28, and reading your post brought up so many raw feelings I guess I mostly repress…getting through today is usually challenging enough, so I’ve had to let a lot of past emotional pain go, for the greater good. I imagine you all understand that too. but somehow, hearing you, a younger guy give himself permission to feel, AND talk about it, helped me give myself permission to feel the ache of loss for a minute…career, roller coaster rides, bright lights and loud places…Vegas. And thank God, Dylan, Beeba you snapped me back to reality at the end & reminded me not to wallow…new chapters, talents, skills, experiences, and who knows what?
I have seen post on a facebook site about Dr. Oro and the post have all been positive about Dr. Oro :) Hope all goes well for you!!
mmrobinson said:
I'm relatively new to all of this as well..and also feel alone..even though I have great support, I feel like no one gets it except people on the two forums I'm on. I want others to get it, to understand it..and they just don't. I'm not sure they can. It's just difficult. We have to stay positive. I'm in CO to visit Dr. Oro this week..and I am afraid I won't have a good visit and this will be a wasted trip and I'll feel even more alone. I cry daily as well..I think we all know we are facing a lifetime of issues..or in many cases, have already had symptoms forever. However..we will get through this with each other's support and faith in ourselves. This forum is such a blessing of support. You are not alone!
Just knowing that I can turn on my computer and read what everyone here has to say has been a big help to me. I am in New Jersey we had no power for 4 days but thankfully my house did not suffer the damage that people 5 minutes from me did. Loss of life loosing their homes etc. My son is 19 and has no clue why his mother cries everyday and why she feels so alone. My symptoms are getting worse as the days pass. My husband and I are seperated and the majority of my family is in Mass. I feel very alone at this time in my life. And scared to death. my appt with Neuro is just around the bend on the 19th.That makes me happy but frightened as well. I'll be glad to be officially diagnosed but frightened about impending surgery.Knowing that I have a couple of options help.I will go for another opinion after my Nov 19th visit. Just so my diagnosis is validated. Then I will have to decide what I will do. As Ive said I am so greatful to everyone here. all of you help ease the panic and the tears and after I come here and read, it makes me feel less alone. Ive been thru worse alone. I can do this alone. I will do this alone. Sending lots of love and prayers to everyone here and Thank you for being you and helping me mentally deal with this.
Beeba said:
Then you need to let it out. How can we help? Would you like tips or tricks? Or would just knowing we understand and let you know we are here help? Please ask for what you need that the people here could provide. Sometimes it is a matter of just asking for help. This is truly not a rhetorical question - how can the people here help you get through this?
Beeba, here I am again, crying my eyes out too. Please share any tips and tricks to calm myself and gain perspective. I’m so exhausted with radiating head neck and shoulder pain. Couldn’t sleep last night, just want to sleep the rest of my life to escape the pain. What do you do when u feel this way? If I try to sleep all day to get away from it,I’ll just be up all night crying.
I think this is one of the real challenges…I agree with letting it out if you need to, but the mechanics of getting emotional/crying just makes my head throb all the more. Because sleeping is so challenging in general due to headache, a missed nights sleep means the next day’s pain is compounded, but I have to push through in order to try to get sleep the next night. You’d think sleep wouldn’t be a challenge, but the pain level is so high, it is. I just feel so worn down from 12 years of this. My eyes were so swollen & painful first thing today…before the crying started. This too shall pass, right?
You are so kind & generous! It is validating to hear I’m doing a lot on your suggestion list now…magnesium, Epsom salts,arnica cream, rx’s, just got back from a walk, emailing my neuro. I haven’t had surgery. I totally hear you regarding sadness because I’m in pain. I think overwhelmed is definitely how I have been feeling and pain does that for sure. Hope is definitely what I should focus on, its just really challenging when the pain is so great so I really appreciate the reminder. I’m trying to focus on funny tv now as a distraction. Laughter, even if you have to do it silently because it makes your head throb, really is good medicine. Again, thanks for taking time out to respond. You obviously ‘get’ what its like and, I hate to admit it, but that’s a comfort. Go have a great time with your family at Disney. I have made it this far, I’ll make it through this day too. There are good days yet to be had & I have hope. I really appreciate your thoughtful support and hope this thread helps somebody else too.