Weird, not well understood diagnosis

I have not posted often, however, read the current posts daily.

Tonight, I'm a bit.... I really do not know how to describe it.... maybe a bit blue.

Chiari Malformation, and it's sweet sister ad ons. is a lonely journey.

The stories I read here, and the experiences that people are willing to share, are so important to me, when it comes to coping with this part of my personal journey.

When it really comes down to it, I am the person that turns this event to the course in life that I would want to take.

You want to be there for your family and friends, yet you do not have the energy to do just that which would accomplish that.

As much as your loved ones want to understand, and accept that you are just not the person you use to be, they just cannot quite get to that point. You know that, and you deal with it.

There is so much, that changes daily for me. Normally, I do not dwell on the abstract, but, I am human,and sometimes, dammit, I just do not rise to the occasion of being something that I am not; something that I used to be.

This problem, just seems to want to suck the life out of me.

I am enjoying my pity party tonight, because I rarely even tell myself the truth about how I feel.

So, thank you, whoever is reading this, and know that maybe like you, sometimes you just need ten minutes of blue, to turn to two weeks of sunshine.


"Pity parties" don't last forever and you have to allow yourself that luxury sometime. As my mom always says, "You have to feel your feelings". She also says that when you're feeling depressed or upset about something, that saying it out loud, or in this case typing it, helps it to lose its power over you. So I hope you feel better.

where there is down, there follows this direction>UP... having lost friends, hobbies, career, and assorted others to the apathy monster... I know how you feel. a FB friend put it this way. we all have lifes "luggage". the journey includes the choice of dragging it with us, or letting go, and moving on... that said, i try daily to find joy in small things and share it with others. only a select few know my high pain days( red flag>silence online) be what you are NOW, forget about the past you . others want that person back... guess what, not gonna happen. invisible illness/disability is not a crutch, ITS A FACT. those persons are in the state of denial...unwilling unsupportive, and blind to the truth...

yes, there are times i want to be Very negative...but i found it too much of an energy drain. side note. if you have stuff from your "old " lifestyle, they are a boobytrap of emotions. consider getting rid of it. start a diary/ventbook. consider trying new things-like accupuncture, reiki etc. i enjoy people watching...

Rami: I think your mom is right, but sometimes, it is tough for me to face my feelings. It is absolutely true for me that as soon as I write down my feelings, the "power" does start to lose it's grip. I am feeling better today, in fact, felt much better after typing the words to my original post. Thank you for your kind thoughts!

lillianb: True that there is nowhere but up to go if a person is feeling a little down. I too have lost a few friends during this particular part of my life's journey. I mourned, then let go. I am where you are at in terms of finding joy in my daily routine.

I still do a few things from my "old lifestyle", but they are killers. That is my denial. That said, it is only a couple of things I am more than ready to give them up. It is quite the process, the one of letting go. I do journal, walk slowly, and love acupuncture. I do miss some of my old physical activities, but have found my new normal when it comes to exercise. The results/benefits are the same. Thank you for your uplifting words.

these days my hands are too full. my husband is suffering from multiple problems and various doctors have not pinned it down. the fight with the VA( some of it has lasted a decade or more.) i truly believe they are waiting for him to drop dead. we want to do the bariatric program,but Doctors refuse to touch either of us, because of "issues". still plugging onward, believing that things will improve soon.

sidebar.. my daughter called earleir to tell me that her 18 month was standing IN the toilet with all his clothes on. AH youth...

Thank you for sharing your feelings. I get down about all this too. More than I'd like. I don't know if it's because I'm newly diagnosed and still trying to find the right doctor or what. I am starting to get that this is a loss of an old life/self. It's like I'm still waiting for it all to pass and to feel "normal" again. Have you had surgery? Do most people have surgery?

Anyway, I don't know your particular symptoms, but it's helped me to work on trusting all feelings and thoughts will pass, being kind to yourself, and that trusting we aren't alone in our suffering.

Hi Wolfgirl,

It's funny, while you were posting to my thread, I think I was posting to your thread. My big problem is that I am great at denial, so it has taken me a few years to face up to my new life. Hopefully, you will not follow in my footsteps with that issue. Like Rami's mother says "you have to feel your feelings" other words, don't deny them. Like Emmaline stated, it is something that is completely normal. The thing is I waited a long time to mourn, thus delaying my progress. Don't get me wrong, I have made progress, just not as much as I would like in that area. I'm getting there!

I have answered your questions about surgery in your thread.

Thank you for your kind words.

Thank you also Emmaline.

Lillianb, I laughed until I cried about your daughter's 18 mo. standing in the toilet. Maybe I should try that one myself. Well perhaps only a foot in the toilet