I don’t tell anyone I have a headache unless it’s a REALLY bad one because I feel like it will make them worry or that they are sick of hearing it.
I am so tired of being tired. (I’ll spare you the swear words that came to mind as I typed that lol). As tired as I am, I have trouble falling asleep and can’t sleep more than 4 hours at a time.
I cannot write a sentence in cursive without missing at least one letter in a few words. It’s not misspelling, it’s like my brain and hand aren’t on the same page. This happens even when writing my own name. I always have to go back and add the missing letters in, which looks stupid when I am signing a birthday card and have to squeeze the ‘n’ in the middle of my name. I usually do better with printing. I dont think i have ever admitted this to anyone lol.
Can anyone relate? Feel free to add to the list with your own frustrations. *not necessarily Chiari related, just whatever comes to mind
yes, yes and kind of yes (my typing has gone haywire, as my fine motor skills are not what they should be).
i dont announce the level of head pain anymore, and when i asked by most people i know how im doing, i say im doing alright and leave it to them to judge as im fed up of trying to explain how i feel. home life with my wife is hard, some times my head is as bad as times when ive been admitted.when in hospital she would barely let me go to the loo, but now ive been home like this so long, and its become the norm, i get asked to do jobs, and if im feeling rough i cant help but wince grunt and groan as i attempt to do them, but i still feel i have to fight through what i can as i can see her getting annoyed at doing everything while i sit looking miserable.
This is all to familiar!! I know exactly how you feel. It really sucks when you feel bad and also become a bother to your family. Just makes me feel even worse.
I really get the not talking about the headaches or other symptoms unless its really bad, I almost get tired of people asking how I am, I dont say anything though bc I know they just care and are worried, but there is really nothing new to tell, I have my good days and bad days and that is all there is to it, yes I have appts and going to see yet another dr this week, but other than that....
I also get the insomnia, I have had pretty extreme insomnia most of my life, as in with out 3 heavy medications at times I will be up for a week long, lack of sleep really does mess with you physically and mentally. If you ever need to vent feel free to PM me.
I dont get the missing letters thing much, just from time to time, but nothing I think would be out of the ordinary.
Totally! Yes, yes and yes. I have all these. And coming from the "other half" I am very guilt-ridden that I can't deal with my four children (3 with special needs) and that my husband has had to pick up most of the household duties and chores. I am angry that I can't function without drugs. I have my good days and my bad days and the bad far out number the good. I never talk about how I feel to anyone because I don't want the "well, you look good" when my head feels like its going to burst and my ears are ringing and my arms are burning and aching and my feet hurt so bad I can't stand on them. If I try to act normal or do things that I know I should or want to do, it puts me in pain. I am exhausted by 4 pm but I can't sleep. But yet I'm not going to let this thing beat me. I will still get up every day and at least try!
I made a cake for my family today and dropped it on the floor before I could frost it. So I made another one.
Totally understand. After awhile you just say fine or about the same. The ones who really know you can tell and dont have to ask anyway. But I just dont tell ppl I have Chiari's to begin with. It makes it easier for me when I put ppl on a need to know bases and most ppl in my daily life dont need to know about my life.
Oh my gosh, the writing thing... I am forever swapping a's and g's in a word. Like "garage" usually comes out "agrage" and "gas" comes out "ags." I have no idea why that happens, and it's only when I'm hand writing things.
Lol Brandi! I hate the word mess up thing. What sucks is that I’m aware that the wrong word is coming out and can’t stop it. It’s not a matter of forgetfulness, it’s like a short circuit.
This discussion made me laugh! Seriously, I hate signing in at my doctors! I feel like such an idiot, at 35 I can't spell my own name right. The heck with cursive, I've resorted to printing and still mess it up. Before surgery it was so bad that my NL's office let me initial instead. Lol.
I can laugh at it now, but it is really disturbing. I stopped talking when I would go places because I just felt so stupid. I always mixed words up or made up my own. I still have these issues but not as bad as before surgery. And everyone is right..it is our brains not communicating with the rest of our body.
OMG! Yes, Yes, and YES!!!!!!!!! Not too many people in my world know what is going on with me. I haven't told too many people yet. My Dad however does know...and every morning he texts me and asks me how I'm feeling. Which I know he just cares and wants to be there, but he truly does not understand how this oversized brain makes me feel. One time I did tell him truly how I was feeling and he asked me if I were getting a cold! Seriously Dad!!! Ugh...
And the words and writing...good thing I'm sort of an outgoing cookie character to begin with. I mis pronounce words, forget words, almost stutter like, and mis spell like nobody's business. And yes, even my own name. Very frustrating, but usually if I say a word wrong it just makes people laugh because they think I did it on purpose to be funny. :-)
However, as ive had symptoms for so long, my workmates hardly ever ask how im doing, i get the impression they're sick of hearing it.
I try not to mention the headaches, unless i get a bad one, and even if i didnt say anything the look on my face says it all, and i go really pale, like transparent!
When I started my job, the headaches were severe, and everyone thought i was exagerating the severity. It was a relief to get diagnosed with CM, although it hasnt made much difference at work.
as for the other symptoms, i cant remember ever not feeling tired!
and my hand/eye co-ordination is dreadful!
Im really forgetful and repeat myself quite alot! Its frustrating to say the least!
its wonderful to be able to 'talk' to people who understand.
Wow!! I'm so glad that I found this discussion! I signed up for this group back in November of 2012 and never really got on. I had my surgery super fast on Dec 4th and about a week and half ago got cleared by my doctor to go back to a normal life! It was scary to think that I could, but I was off of all my meds and just taking IB on occasion for any pain. BUT now, I'm starting to gain my symptoms back and I totally relate to what y'all are talking about!! I'm a college student that lives with roommates and two of them are my best friends. It has gotten to the point when someone ask me about my scar, that my best friends just walk away from the convo because they don't want to hear about it anymore! It's made me pretty sad at times but I understand where they are coming from. It always feels like I'm trying to steal the attention, which I am not.
I was diagnosed with Intercranial Hypertension back in 2009, and went from 20/20 vision all my life to be blind for a few weeks. I am now at about 25/30 with some blind spots. I still take meds for it, which help relieve the pressure in my head. So that is a plus! :)
But I totally agree, I'm so tired of being sick and tired, and I am also having trouble falling asleep, just like Brandi23 said, I wake up hunched over at times too! I feel bad, I'm actually a really positive person but I just felt the need to vent a little bit!! I'm glad that I can come here and people can TRULY understand where I am coming from!
On a sidenote, can anybody give me any tips, helpful advice, or heads up on going through getting Disability??
I recently noticed that my cursive writing was inconsistent...good to know that I am not alone!
Regarding the 'how are you doing'...for awhile, I avoided talking about my pain because I didn't want to sound like a complainer. Around 6 months after my surgery, I finally realized that I did needed to communicate how I was doing with my husband. If I was having a bad day, I needed to let him know so that he could better plan his day and taking care of the kids and the house, along with his job (luckily he is a realtor and has a flexible schedule).
I returned to full time work 3.5 months ago. It has definitely been a learning experience in regards to what I can and cannot handle. I am working out more, so that I can strengthen my neck. I highly recommend Barre 3 for any of you that have access to one, if not, you can sign up for online classes. It combines pilates, yoga and ballet. The program does a great job of balancing the strengthening and stretching of muscles. I am also trying to get as much rest as I can so that I don't let colds or the flu make my symptoms worse. I have had to go home early and use PTO for time off when I don't feel well. My boss didn't understand why I was always sick, and I finally had to realize that this is still a part of my life. I discussed the situation with him, letting him know that I was trying to do what I could to be healthy, but I would most likely use most of my PTO for my 'bad days'. The key is communication and being proactive, which is different from complaining.