I am so sick of having crappy days where I just want to lay down and not do anything at all! It is so hard to find energy to do things when I feel like this. Anybody else know what I am talking about here? I don't really hurt or anything (at least not out of the ordinary) but I just feel like crap. We went out to a cabin with our family and some friends for fishing opener (I love to fish) but I felt like laying around in the cabin all day and not doing anything. I just wanted to go home so I could sit and watch TV and do absolutely nothing. I had zero energy and just felt a lil depressed for no reason at all. Today it started to let up but I wish I knew why this happens to me. It then makes me feel guilty that I didn't have fun with everyone and was down in the dumps, but I really can't help it. Thanks for letting me vent. You guys are the only ones who understand.
Yes, I know exactly what you are talking about. Luckily, days like this are becoming less frequent for me. I hope they will for you also. Hang in there!
Diana
Mommy of two,
Having Chiari is exhausting even without all the stresses and demands of everyday life. It's true friends and family don't understand and it can make you feel alone and guilty and a whole lot worse. People that don't have Chiari don't understand that most days ordinary life feels like you're climbing a mountain everyday. The size of the mountain just varies. Somedays I feel like it's a steep hill others it's K2 and my sherpa left me. LOL We all know exactly how you feel and what you are going through. It really stinks. Just remember it's not your fault and be kind to yourself. Sending you a hug.......Wendy
Thank you ladies! Today has been better, I just wish I even knew when it would happen (like a Chiari forecast) so that when I plan something with my family I would know when would be a good time and when it is not a good time for me...I have a camping trip planned for next month with family but I am just not sure how I will feel when the time comes. I know that if I feel "bad" that day my family would understand that I would be spending the day in the camper, but I guess I disappoint myself more than anything when it happens, I don't like to miss out on fun family time because of this crap! Thanks again ladies for listening to me rant...
I too have this. Some days i just don't want to get out of bed. My family and friends for the most part don't understand. It even seems when I do force myself out of bed I pay for it later by being in pain. I am running out of Netflix shows to watch and I can't read due to vision issues. I can't say how glad I am to know I am not alone in these feelings. This has gotten alot worse recently but whenever I had previously mentioned it to my doctor she dismissed it as depression and gave me another pill.
I know just what your talking about, I've been having a lot of those days lately. Its making it hard to finish the school year... but your not alone, were always here to talk
Elsie, I had a really hard time with school this last semester...I would procrastinate everything and couldn't keep myself focused for anything. I still got good grades, but most of the time I was struggling just to finish my assignments in time.
Joy, that is exactly it. They try to convince you that you are just depressed and shove another pill in your mouth, that you really start to believe it yourself. I have quit telling them this because I am really a happy person and not depressed, it is finding the energy that is hard. And when I have a really hard time finding the energy it makes me feel bad but I snap out of it as soon as I start to feel better and get up more energy.
Since this last round of loss of energy and focus I have had headaches take it's place (they are not real bad headaches, but then again I am comparing them to pre-decompression headaches). It is just all very frustrating that I cannot share these feelings with doctors because they dismiss me and my family just doesn't understand what it is like for me.
I just want to thank you all again for being there and understanding : )
I know that feeling all too well. I have it now as a matter of fact! I also have 4 kids so getting to do anything for me is not really easy. I'm lucky if I get a shower....
My head has been hurting today. Right side... in one little spot... then the back top of my head. Maybe I didn't get enough sleep last night or Monday really kicking me in the butt but today is just a bad day.
I'm sorry your going through it too. I know what it's like. Even being depressed and you don't really know why. I wish I had the answers but I don't. I'm just as much in the loop as your are. Maybe even less. But glad there is a group on here that knows and actually feels your pain.
I'm so sorry you're going through this<3
I feel the same way most of the time. It's gotten to the point where I simply don't plan to do anything. I am just waiting for test results to come back and eventually surgery... but until then it's all been just hanging out at home playing video games or trying to make some music. I don't make plans with people because I know it's only going to hurt me but I have found that it is really important to my emotional health to be as social as possible. By that I mean hanging out with family at home or talking to friends on the phone or my new favorite - skype :)
I'd also like to add that I do take medications for my chronic depression and anxiety and without them I probably wouldn't even get out of bed. Even with them, the days are difficult - emotionally and physically - but thank God for them :) If you are finding your situation to be overwhelming then I would highly recommend seeing a psychiatrist---one that especially understands your specific situation because I'm sure a lot of them do not. Probably 99% do not but that doesn't mean that they can't help. They can prescribe you medications but there definitely has to be a solid level of trust going on. Like in the way that they "believe" your pain, or that when you try a med and it doesn't work- that they will work with you to find one that does. I take Adderall and Klonopin and am very pleased with that combination right now. It's hard because they are both taken on a sort of "as-needed" basis but I know the schedule pretty well by now.
I hope this helps and that you find some peace and balance in your life soon<3much love
-Bill
I just want to say thank you all for your concerns but at one really bad point in my life I actually was considered clinically depressed (when they told me at 17 that I probably would never have children), I do not feel that way at all anymore. I have been seen and taken the tests and I am no longer considered clinically depressed. I do have generalized anxiety disorder but I am on on meds that do help with it. I am also on a nerve blocker for some suspected nerve damage which I have found this happens to decrese the anxiety as well (also working great for the pains). I really do feel perky all the time and I am generally a happy person except on the days here and there when I can't get up my energy. It is just frustrating that I just cannot be normal. I guess it just happens when I do too much preparing for things, then when the important day comes up I am too wore out to even enjoy it. My son's birthday party is on Sunday and I do not want to feel like that, so I have been making sure that I get stuff done while I have time to space it out so I don't tire myself out. Here's hoping for a great party that I can actually enjoy on Sunday : ) Thanks again everyone! All comments and concerns are greatly appreciated...
Crystal
No, I didn't take it that way at all. I am just explaning the situation : ) Thanks again!
I completely understand. I too blame myself from time to time even though I know I am not the cause. My kids did a mothers day project at church on Sunday and gave them to me at lunch. It was a drawing of each of them with me and a little thing about what moms are. My daughter who is 7 said mommy I marked out my mommy is full of energy because you are tired all the time and don’t have energy. Out of the mouths of babes…she is right I don’t have energy and it is hard especially because kids are full of it. Hang in there, it has to get better (that’s what I tell myself anyway)
Christina, my son just turned 7. My daughter is 8 and when she was in kindergarten, she did a mother's day card that asked her questions all about her mom. It said stuff like my mom's favorite thing to do is...and she responded sleep. It broke my heart and since then I have fought sleeping at all during the day. I was decompressed and I only slept when they were both in school. If they are home, I am awake. It is just something really hard to hear, you hope that they are not affected by any of this, but they are and things like this show it.
I really hope that isn't what my kids remember about me when they grow. And thank you so much for the comforting words, it really does help!
I know what you mean now... yes, the crap days! they suck, but at least once you're medicated to your satisfaction they are much less frequent :) I wanna say though that I remember when I was taking Concerta instead of Adderall .. man my crap days were like the worst... like feeling completely hopeless and that just doesn't happen anymore. Maybe because I've grown up a lot since then but maybe it was just the meds. Another important thing about all this is Balance... If you can find a decently-happy-daily balance, try and stick with it. I know it's easier said than done to be so regular but I'm pretty sure it makes all the difference.
The last thing I wanna bring up is that - with the Chiari clogging up the normal flow of CSF, your brain can't communicate with itself properly. Apparently different parts of the brain communicate chemically by way of CSF flow. So I'm guessing that's another reason we are all so different in our symptom lists... because our anatomical clogs are different. So this paragraph is half fact and half me blabbing, sorry :)
hi
i know how much you have been through and are still dealing with
you are a great mom/ do not beat yourself up
i am a fine one to give you that advice/ ha ha ha
because there are days when i worry about the kids too
Thanks everyone, I try to stick to a personal schedule on how I run things, but with kids it just isn't that easy. But on the plus side, with the new meds that I am on...my anxiety is down enough to where I finally started driving again! Yay!!!!
yayyy!
I absolutely hate driving! My anxiety kicks in as soon as I think of driving, but the meds have helped and I am doing it even though I do not like it. I took the advice of one wonderful person on here who told me to just drive a couple of blocks at a time. I am now back on the highway but it still makes me a nervous wreck. If I drive too far it makes my back and shoulders ache all that night so I keep it to a minimum. We live in a very small town and everything is in the next town but it is only about 5 minutes away. I also get really anxious being alone (I start to think too much when I am not busy) so I don't like to go anywhere alone. It has been really hard for me to drive and get stuff done outside of the house.