I have such a hard time making plans for even the silly things in life..that requires me to leave my comfort zone of home..like going with my daughter to the mall to buy a dress for yet another dance..LOL
See, the mall is about 45 minutes from here and I don't drive the Thru-Way b/c of visual issues. Anyway, my sister said, last week , that she would take us.
Yesterday and the day before were very bad for me..pain wise...yesterday was the worst..left eye and facial pain that was unbearable...
As we Chiarians know..we never know when all hell will break loose with our bodies..thus, I get all anxious about making plans, of any kind..not knowing how I am going to feel on the event day.
So, somehow I must muster up the energy to shower and get ready..the pain, thank God , has lessened but is still there ..and I am weak and shakey.
When I made plans to travel to DC and Myrtle Beach mths back...when the time drew close to going , thankfully, I had been feeling somewhat decent...but that feeling of anxiety was still there.
sorry about the length of this..I guess I want to know if any of you guys deal with this fear of making plans and how you handle it overall..do you go ahead and make plans and if you are ill..just cancel..or do you just not make any plans....this is not a great way to live.
If it were not for my girl, I certainly would not be going to the big city shopping, I can tell ya that much.
I feel like I have gone a few rounds with a boxer right now....thanks for letting me rant and any and all input would be SO HELPFUL..I kinda feel alone right now, not understood by the folks around me.
I know exactly how you feel! I’ve been really struggling with this also. More often than not, I have to cancel any plans I’ve made. I still try to make plans though. Yesterday, I had to cancel plans with a friend for the 5th time in 2 weeks! She was VERY understanding, but I still feel bad. I told her yesterday that we’re going to have to play it by year…I don’t want to keep cancelling on her:( I can also relate to your anxiety comment. I’m anxious every time I make plans and the anxiety increases as the date approaches. I don’t have a solution for this, except I try to forwarn people as much as possible. I miss being the dependable person I use to be. I know this isn’t much help, but I wanted you to know you’re definitely not alone with this. I hope you continue to have a better day and have fun shopping with your daughter:) You will be in my thoughts and prayers:)
I too feel this way many times. I have even lost a number of what I thought were good friends due to not being able to make plans or be available to assist them on short notice. As we know CM effects and affects all of in so many different ways but in so many the same way, like you described.
Fortunately for me, living in a rural area, many things are close usually under 1/2 hour but when I have to travel to doctors or even events that I used to attend for years (like family reunions [which they still do not understand why I do not go], wedding, baptisms, birthday parties). Sometimes my wife drives but with her in her state of pregnancy it is hard and others times I'll just admit she makes me very nervous when she drives (this doesn't help either).
I also understand very well that if it was not for my girls, I would probably end up being a reclusive hermit type person.
I hope and pray that your days continue to improve and one day we will conquer this life changes. All I know is that today is a beautiful day in my life filled with a beautiful family here and beautiful family here with you being very important and special to me for all the things you do.
I have some issues with this as well. My young daughter is the one with CM, and so i have even less ability to know if there are good or bad times on the horizon. She can only tell me so much, being all of four years old. Dates with my husband have been canceled at the last minute because she had a horrible headache and there is no way Mommy will leave her when she needs me. Doctors appointments for my other children have been reschedualed so many times, just because my husband was working and Alanna just couldn't handle it. For our situation, I do continue to make plans. We just planned her fourth birthday party and invited a whole bunch of people. I do worry about her not being able to handle going, but I have to shove it in the back of my mind and say "Oh well, the people that really love and care for her and us will understand and be more concerned for her health than a birthday party cancelled." or a trip to grandma's coming up this summer... or whatever. My thought is, and I might be wrong seeing as I am the caregiver rather than the one suffering, if you let yourself get anxious, doesn't kinda become a self-fulfilling prophecy? You worry so much about getting sick, that you make yourself sick? try to let go, plan your life anyway, and if things don't work out, oh well maybe next time, otherwise the Chiari's wins.
AHHHHH.....the comforts of home. I know exactly where you are coming from. The anxiety can ruin it all, but only if you let it. Make your plans and try your best to stick with them. The anxiety is simply mind over matter and does take lots of practice to overcome it. I had a long road in the beginning with anxiety and panic attacks it took lots of work within my own mind to take control. I realized that the anxiety made me stress out and that in turn made me tense which we all know is not good for our aches and pains. Make plans and take your life back, Chiari is just a part of life now, but not all of it :)
I know what your going through. I have dizzy spells that make it hard for me to make any kind of plans. My head aches I can pretty much handle with coffee and Motrin. But nothing takes the dizziness away. Tomorrow is my birthday. We have planed to take the kids to the zoo! The zoo is a big deal for us as a family! Today is a dizzy day. I can hardly stand up. Then I feel sick from being so dizzy.
stop it your scareing me with 2 daughters already and we hopefully find out this friday on what the new one is going to be. Shopping is not my favorite activity anyhow, and you add this..
Congrats on the new addition....when is your wife due??? How old are your girls??? Guess what??? I am off the THE OTHER MALL TODAY!!!!!!!!!!!!!!!!!!! 45 minutes away in the other direction!!! Jesus , pls help me!!! ANd I am serious in that prayer...
But this mall, I can drive myself ..the back roads....I will have to play Custer today.....CHARGE...............Girls are not cheap when going to the mall!!!!!LOL
Pray I make it without a major h/a coming on...this is why I fear making any kind of plans. Hubby does not seem to understand this..he thinks I am going off to have FUN!!!!!!!!!!!!!!!!! after all these years, he still doesn't get it!!!!
Girls are never cheap !!!! They always need something.... : )
lori said:
Hi Mike.....
Congrats on the new addition....when is your wife due??? How old are your girls??? Guess what??? I am off the THE OTHER MALL TODAY!!!!!!!!!!!!!!!!!!! 45 minutes away in the other direction!!! Jesus , pls help me!!! ANd I am serious in that prayer...
But this mall, I can drive myself ..the back roads....I will have to play Custer today.....CHARGE...............Girls are not cheap when going to the mall!!!!!LOL
Pray I make it without a major h/a coming on...this is why I fear making any kind of plans. Hubby does not seem to understand this..he thinks I am going off to have FUN!!!!!!!!!!!!!!!!! after all these years, he still doesn't get it!!!!
I know exactly how you feel. I worry sometimes for a week especially before doctor's apointments.They are stressful anyway then dealing with pain level that day, energy level if I slept the night before ect... It's a vicious cycle. I have kids too and it's so heartbreaking having their lives dictated by my health problems. We all have learned to cope and plan our lives around my good days and bad days. I have so much guilt. Shopping is like climbing a mountain. If it weren't for the internet and my husband we would be naked barefoot and hungry. Being able to just run out of the house and run an errend is something that people just take for granted. For us it takes so much effort and planning. My legs feel like I'm walking in wet cement if I'm on my feet for a long time. Then there is always the possibility that I will fall. I fall a few times a year if I'm out. I fell at Christmas looking for a tree. My poor kids one minute I'm upright the next they are trying to help me get up off the ground. I joke about it and laugh it off but they are always worried I will fall. No one truely knows what we go through but each other. I feel like I have a mountain to climb everyday. Sometimes I only think about climbing it other days I get all my equipment on and then go back to the tent!! : )
I have trouble with plans too. Right now I'm stressing because I am supposed to go to a concert in less than two weeks with my husband and some friends. It's a two day, all day event and I just worry I won't be up to it. We got tickets before I found out my diagnosis and I thought that maybe I'd be better by the time the concert rolled around. Definitely not! The car kills my neck and shoulder and it's a 5 hour drive, then two days of standing around for 12 hours. Not to mention that I have celiac disease so if I accidentally eat something with gluten I will be so sick! Which can happen while traveling because you never know what restaurant to trust! So yes...I've made plans and now I'm stressing pretty badly about it.
I can COMPLETELY relate. I am now 11 weeks post op and still terrified to leave the house. After so many bad experiences before surgery, I have panic attacks at the thought of them happening again. There were so many times I got lost and couldn't get myself home. Or like you said, I too have difficulty driving in specific conditions. My vision is much better now, but I still have flashes. Does anyone else have these, its is sort of where you look from one place to another, but your eyes are slower than your brain. Sort of like a jerking sensation. Anyway, I am supposed to go back to work within the next week or so and I am trying not to panic. It is so nice to be able to relate!
Sorry it tok me a while to get back to you. Hope shopping recovery is in full effect. but CHrissy is due on October 5th , but she has never carried to full term. I thin the longest she carried is 35 weeks, but hey happy and healthy, I don't care how long they bake in the oven, err I mean womb. The girls, Katrina is the oldest at 8 soon to be 9 in June and Emma is going to be 4 in November. I need to get some new pic in my gallery for everyone.
One good thing though is that fortunately both of them are beautiful like their mother.......I always tell people that if they looked like me that no guy would ever go out with them.
lori said:
Hi Mike.....
Congrats on the new addition....when is your wife due??? How old are your girls??? Guess what??? I am off the THE OTHER MALL TODAY!!!!!!!!!!!!!!!!!!! 45 minutes away in the other direction!!! Jesus , pls help me!!! ANd I am serious in that prayer...
But this mall, I can drive myself ..the back roads....I will have to play Custer today.....CHARGE...............Girls are not cheap when going to the mall!!!!!LOL
Pray I make it without a major h/a coming on...this is why I fear making any kind of plans. Hubby does not seem to understand this..he thinks I am going off to have FUN!!!!!!!!!!!!!!!!! after all these years, he still doesn't get it!!!!
many women would be thrilled to go out with you if you weren\t already taken
your family is lucky to have a guy like you/ trust me
yes pls post more pictures
as for me recovering from my shopping trips/yeah i guess i have recovered in a way
but i ended up in so much pain sunday night i had a mini breakdown
once i started to cry i could not stop/ i think i was crying over everything/ ya know
feeling increased pain/ frustration over not being able to sleep/ all the losses in my life over the past 5 mths/
with mothers day coming up and all over the malls were mothers day stuff
my own mom died in my arms this past december and i miss her so/ even though she got under my skin at times as i got under hers
she was always the one person who in her later years told me exactly what she thought of me
mike/ what she said to me shocked the hell out of me/she told me how proud she was of my sincere heart and compassion towards others/she went on to tell me many times that it did not matter that i never finished nursing school/i have always felt as though i am less than because i never finished college
so sunday when i was tired and in a lot of pain she popped into my head as she often does and i miss her all the more
then this cancer with my brother/he is actually my bro in law/ but he is a brother to me
2 mths after my mom passed my brother was diagnosed with stage 4 colon cancer and he and my sister are going through hell as i try and be supportive but cannot fix it.
I had received a residual report form my doctor for insurance purposes. When reading it I was suprised/relieved (idk) to see what was written as one of his answers. It asked if anxiety/depression had anything to do with the my condition. He wrote....yes, always does. My point is, I think most of us deal with anxiety at some point. How can we not! Just know that you are not alone. I have friends that don't keep in touch too much anymore because I can't follow through with plans. I have accepted it for the most part, but it is still frustrating at times. Sometimes I don't even bother making plans or I lie and say that I am busy. I hate lying, but sometimes it just makes it easier. Hope you are feeling better today!