Guilt After Three Years

[Bellesmom12]

Happy Mothers Day to all you mothers out there. I don’t post much but just wanted to share this. As I sit here I am feeling so guilty. It has been three years since I was diagnosed and still have leftover side effects. I am doing ok, working every day, taking care of myself pretty well. But I really have to watch as my anxiety level goes through the roof and I get very funky in my head, dizzy and numb extremities.

With that being said, my guilt comes from my mom wanting me to take her to church. She is 80 years old and wants this so bad. I really NEED to be quiet on my weekends and rest and stay away from social gatherings so that I can function during the work week. As the one who was always the fun one, I am expected to be that way. I just can’t. I need to be quiet sometimes. One of the major pitfalls of this illness is that you look ok, you must be ok.

I have accepted the fact that I will never be back to normal. Still makes me mad but I get it. But guilt is my main problem which causes more anxiety which causes more symptoms to flare. I try to explain to people and they seriously don’t get it which causes more stress.

Just want everyone else on here to know that if you are feeling stressed and guilty all the time, I am too! God bless us all and help us to be kind to ourselves.

[Cryptococcal_Ninja]

I would honestly explain the situation to her and how things affect you. I visit my mom fairly often and tell her to not be offended when I have to cut the visit short. Due to total hearing loss I also have permanent tinnitus that is a PITA daily. I don't venture away from home too long as it's unpredictable to say the least. When it flares up with weather changes, etc. it's like having your head on a blender with ice being shredded, that sort of thing. Also affects my balance at times as well. I have let everyone around me know what I have to deal with and it's not like I really had to as they saw the overnight struggle that came with the cryptococcal meningitis that was a violent rude awakening to say the least.

Everyday people have no clue and even look at me strangely when I say 'bear with me as I am totally deaf' as I don't look or sound like I should be deaf, etc. It's a life altering experience no doubt, but I simply do what works for my situation as I am the one having to live with the daily side effects.

[Christine86]

I feel quilty all the time. My life has been turned up side down for 7 years now. Now my main problem is fatigue and dizziness (vertigo). I can’t be up for more than 3 hours. This is so life debilitating that it effects my partners life so much too. I feel so quilty about turning his life upside down and waiting now for 7 years to get better (than this) I try lifing in the moment as much as I can but I think it is really normal you feel quilty twords your mom and people around you. But it won’t help you get better if you worry to much. You have tot take care of you and put your life on number one . People will understand

Good luck!!

[Bellesmom12 in reply to Christine86]

Bingo! It just kills me though that I look ok, but while I am talking to people I feel my eyes get all weird and I wonder if I look as crazy as I feel. I lose words a lot and it makes me sooooo mad. My granddaughter is 2 now and I want to play. Not even sure if I trust myself because of the dizziness and general weirdness.

[Christine86]

Ooh i totally know your feeling!!! And i recognize so many things. The eyes part too. Only my boyfriend really notices it and also loosing all the words. Then i know it time to rest. But resting all the time and knowing where your boundaries are is so difficult. Because every day is different and you are with people and don’t want to be rude or mostly you want to be part of things. You want to live life!

[Bellesmom12 in reply to Christine86]

OMGOSH! Exactly. Sometimes the more I try to fake it the worse I am. I am not sure how noticeable I am. I have asked close friends before but maybe I don’t want to know the truth! Like “Do these jeans make my butt look big?” 😄😄Anyway glad to hear from you. We have a lot in common!

[Christine86]

Hahahahahahahaahahahhaahah OMG Yes!!