Do you ever get tired of telling people what you have? I feel like when next at a team meeting, I should tell the team in general what it is that I have, so they don't constantly ask when they see that I'm wrapping my scarf around my face because of the pain, or that I'm trying to keep my face warm because the draft that come through the windows and doors make it painful.
Just wondered what everyone does in this situation.
For me it's enough to tell it's sever headache , no one can understand !
I’m no longer shy. If someone sees me acting unusual, I just say “I have a painful and debilitating nerve disease that causes me to act a little crazy sometimes.” Sometimes, they ask questions and I get to explain; hopefully, they just accept what I said and move on. It definitely gets old, but I’ve find that downplaying this -“oh, I just get bad headaches” or “yeah I’m ok, it’s personal” makes things worse. Because as tired as I am of explaining, I’m even more tired of rejecting offers of Tylenol and Aspirin.
I find that I need to explain but then people say 'I hope you feel better soon' and that's when I can't be bothered to explain properly anymore. I won't feel better soon as this won't go away. 75% of the time I can cope with it but the other 25% I want to rip my face off and just howl in a corner. People don't understand simply because it's so hard to comprehend but then it becomes irritating having to tell people.
Actually, I see fewer and fewer people as time goes on. If that's not you, be thankful people ask. I get tired of having to explain it to my immediate family. If I am grouchy or negative in any way, it would be nice if they kept it in mind that I am experiencing pain like they can't imagine. My own wife. My own kids. It gets old having to remind them. Then again, it is a reminder to me that I have to fight as hard as I can against letting the pain make a grouchy hermit out of me who maybe gets sympathy but little else out of life. It would be nice to know there was sympathy always present, factored in, but it is good for no one -- not for me or for my loved ones -- to wallow in self-pity. Maybe we just have to live our lives as if. It's hard, though.
BINGO!! Exactly what I feel like! People asking if I'm trying to be Muslim because I have a head scarf on???!! Not understanding the amount of pain and the stress it puts on on our marriage. People just say stupid thing is what I've decided and answer accordingly. At 7 years into this, not much happens that is new. Thanks for posting this. Let's me know I'm not alone!!
This is me!! I just get tired of it and give up! My older kids who haven't lived with me since this happened, and figure it will go away. Even my usually very patient and understanding husband. Hang in there. One day at a time, sometimes minute by minute, second by second.
thehoward said:
Actually, I see fewer and fewer people as time goes on. If that's not you, be thankful people ask. I get tired of having to explain it to my immediate family. If I am grouchy or negative in any way, it would be nice if they kept it in mind that I am experiencing pain like they can't imagine. My own wife. My own kids. It gets old having to remind them. Then again, it is a reminder to me that I have to fight as hard as I can against letting the pain make a grouchy hermit out of me who maybe gets sympathy but little else out of life. It would be nice to know there was sympathy always present, factored in, but it is good for no one -- not for me or for my loved ones -- to wallow in self-pity. Maybe we just have to live our lives as if. It's hard, though.
My father asked me yesterday if I could take advil. Advil. Sigh.
I have been dealing with this since I was 22 (I'm 30 now). My first flare up lasted 10 debilitating months with no relief. The shocks were coming every few minutes to seconds during that period. My family was aware of all of this. I have had periods of what I like to call dormancy and flare ups since then. My family has been right there with me on the phone as I cry in pain, or call from the ER, or deal with new medications. It is REALLY difficult for people to understand what they can't see or feel.
(Un)Fortunately I also suffer from chronic migraines, so some people I just tell them I am having my headache problems. That they can understand a little better. A little. Trust me, not much better. But, just as there are some people who don't even try to understand what we are going through, there is usually someone who does try, even if it is only one person. They may not succeed, but it is that effort that we should be appreciating.
Your right Leeters, I am lucky I have two that try their best to understand and love me anyway.I also have an uncle who is 75 yrs. young and he will take me anywhere I need or want if I wanted too.Oh! I called the drs. office they are closed today due to computer issues. Just great! I was sure they would help some.
I just got Botox injections for the headaches that started after I had MVD. It has only been two weeks and that is when I should start to see a difference. I should know at 6 weeks if it will do the trick. Having a headache every day for 14 months is no fun and then to have had mastoiditis/meningitis since the surgery only to have been diagnosed on top of it has mad me very angry. BUT -- my new team of doctors are on the right tract to giving my life back to me and for that I am thankful as I am sure my husband is. Check to see if you can get the Botox for the headaches -- at least that would be one less pain you would have to deal with. Best of luck.........
Leeters said:
My father asked me yesterday if I could take advil. Advil. Sigh.
I have been dealing with this since I was 22 (I'm 30 now). My first flare up lasted 10 debilitating months with no relief. The shocks were coming every few minutes to seconds during that period. My family was aware of all of this. I have had periods of what I like to call dormancy and flare ups since then. My family has been right there with me on the phone as I cry in pain, or call from the ER, or deal with new medications. It is REALLY difficult for people to understand what they can't see or feel.
(Un)Fortunately I also suffer from chronic migraines, so some people I just tell them I am having my headache problems. That they can understand a little better. A little. Trust me, not much better. But, just as there are some people who don't even try to understand what we are going through, there is usually someone who does try, even if it is only one person. They may not succeed, but it is that effort that we should be appreciating.
Can I rip my face off now???? It won't stop and I have to be mom tomorrow because my husband is in Daddy overload and is gone with our son tomorrow. I can't do this I am afraid!
How old is your child? What does being mom entail? What do you fear will happen?
I've had the same thing happen. Had people asking me if I'd changed religions all because I wear a scarf now. And the looks that I get is unbearable.
And people always give such good advice, ie telling me that I should go and see a dentist - erm I don't have any problems with my teeth. I get tired of all the help.
shepherdgirl said:
BINGO!! Exactly what I feel like! People asking if I'm trying to be Muslim because I have a head scarf on???!! Not understanding the amount of pain and the stress it puts on on our marriage. People just say stupid thing is what I've decided and answer accordingly. At 7 years into this, not much happens that is new. Thanks for posting this. Let's me know I'm not alone!!
How old are your children shepherdgirl? How did today go? I'm so sorry that your in so much pain.
shepherdgirl said:
Can I rip my face off now???? It won't stop and I have to be mom tomorrow because my husband is in Daddy overload and is gone with our son tomorrow. I can't do this I am afraid!