Chiari Online Support Group

Feeling hopeless

Hi.

I can't even start this post. Don't know what to write. Just want to cry.

The past 3-4 months I feel like being a viewer of my own life. As if there is asolutely nothing I can do. Just watch, no participating. Like a leaf in a stream- being taken somewhere, not even having the option to grab by something to pull myself out of the water.

Taking a shower + going to the store(2 min walk from my home) + taking my little stister home from school(less than 10 min walk from home) + preparing easy and quick dinner = like climbing a mauntain. I know I can do it, but it's so hard! It takses so much energy! I feel so tired as it is, haven't yet done anything, except for having breakfast.

I'm only 25 and the thought of staying like this or even getting worse is frightening.

I have gone to doctors in these months, I'm improving the quality of my sleep. That is good, but it's not improving my mental or physical capabilities. I've been seeing a psychiatrist, was on antidepressants, but my doctor didn't see the antidepressants improving anything, so she said, my symptoms probably are mostly Chiari. I also was taking nootropics, but they made me worse. I felt more energy, but it was like my body couldn't take it- I started having panick attacks or something, and my doctor thought I shouldn't take them anymore. I'll see a neurologist sometime next year, when I get insurance.

While I was taking the antidepressant, I had a hope some symptoms would be due to a depression, and they would cure me. But now I'm left only with the Chiari that has no real treatments. I'm sceptical about surgery, because I haven't heard the surgery being done because of lack of energy, and not bein able to concentrate. I have other symptoms, but they are not that bad, I think.

I feel like my mind is getting weaker and weaker. This is terrible. I still hope I have something that can be treated.

Thanks for reading!

1 Like

Oh, Fugu. I am sorry to hear you are in this difficult place. It seems to me perhaps you may still be grieving. It can take some time to come to terms with accepting a chronic illness. And you are very young which I believe makes bearing diagnosis of illness that much more difficult. Chronic illness affects us in the same way as other losses. Depression is quite different than grief as you are coping with a loss. When diagnosed with chronic illness, we can go through the stages of grief. After a good several years worth of fighting with myself and many difficult emotions that left me depressed and frustrated, I knew it wasn’t working and made a decision to move forward. It was a conscious decision to get unstuck and rethink my illness as something to live alongside of instead of something to fight. I don’t mean to say we shouldn’t take strides to seek out medical care nor push for improvements constantly, but instead that these things work best with balance in mind, always aiming at living the best life we can now through acceptance. I have found mindfulness and relaxation techniques to really be a wonderful help in finding this acceptance within myself. I know you’ve recommended meditation to others here as well. :slight_smile: It is also good you are here talking through your feelings with others who may be in a similar place. Hopefully those others here will share their experiences as well.

I also wanted to share a few links to some great blogs. I hope you find them helpful in your journey.



http://myheartsisters.org/2010/10/29/dr-aletta-five-tips-depression/

https://www.psychologytoday.com/blog/turning-straw-gold/201403/the-…



Hugs,

Laurie

Thank you! Your words are comforting. :)

I read the articles you recommended. And I think you're right about me being in a griefing period. The way I feel about my symptoms really feels like a huge loss. Thanks for your thoughts! I hadn't thought about it in this way(which makes a lot of sense).

I feel you completely i was diagnosed with graves disease which is a thyroid condition and had to have I131 radiation this was back in 2009. I had all the same symptoms as i do now. In about 2012 I heard one of the hundreds of drs I had seen mention after having a catscan a possible chiari malformation, but they never followed up. And being that I has no knowledge of it and the effects of it I did nothing as well. Here we are in 2015 same symptoms pain fatigue extreme fatigue. Weak legs arm ect really bad headaches and pain in neck and shoulders. And just recently had a catscan because of abdominal pains went to er was diagnosed with kidney infection. My crappy primary failed to mention to me the possible chari 1. So when going to the rheumatologist she did a paper trail to catch up with all Dr records and noticed that I had the possible chiari 1, asked me if I knew. I tol her that i had heard about it a couple of years ago, but no one followed up. She immediately sent me for a MRI I then found out it was finally confirmed that I have chiari 1 malformation. I am now scheduled for am appointment with the Neurosurgeon to discuss surgery. I am scared but praying that this will be kinda like a cure all. At least some relief. I know its hard with all these feelings its really an emotional thing. To not be able to perform as well as we are used to. Consider the surgery. Who knows what will come of it. But could it be worse then what we are going through now? Maybe. But I an willing to try anything. I am 36 with 4 children who need a functioning mom. I really hope you figure out what it is that is causing this. I to am in your position, and still trying to figure out what is the underlying problem. And can I be some what back to the way I was with the help of my team of specialist. It’s a long journey sweety but your young and still have a long life ahead of you. Don’t give up fight to get better .lots of love and prayer

Thank you, Marisa, for sharing! It means a lot.

I can't imagine ever having children while being like this. How would I ever take care of someone else if can't take care of myself? My sister is 7. I try to spend as much time with her as I can. She usually wants me to play with her, but I mostly have to decline her invite to play a ball, run around and to do other things. At one moment she started asking me to play like " umm, maybe, sometime ... , um, when you don't have a headache, maybe we could ...?" It's terribly painful when a child talks to you like that. With fear of rejection and hope at the same time. Once she said: "If you're feeling bad you can talk to me." :) She was 5 or 6 at that time.

Thanks, I don't think I could ever giveup. I have too much of a fighter inside. :)

My best wishes go out to you.

I get it Fugu, cm type 2 happened to me when my little brother was nine. All you can do is be honest, try your best, and communicate. Perspective helps me deal with the hopeless/futureless aspects of chronic illness. Eight billion+ humans live on this planet each with problems and dreams. The simple fact is most people in so called first world countries have a higher standard of living then any other time in history. I myself as a disabled american live a life that was only available to aristocrats and royalty until very very recent history. Seriously think about that 3300 BCE to 1950ish AD chronically ill had almost no shot at any form of life unless they were from a wealthy family or a Catholic charity stepped in etc etc. Some simply do not get the love of their lifetime, children, a rewarding career. Step back a second and consider simply mathematically Eight billion people how could they all get their fairy tale happy ending?