Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
So I have not really told many people about this, because it is just a touchy subject and hard to talk about, but I figured that since I know you are all very open and honest, I could finally get this out into the open...
In 2010, I got engaged...but remember, I was dealing with the worst of my PTC. I could barely even be around him because of the fact that I was hurting so bad that I just did not want my pain to effect my attitude towards him...
We were set to be married in June 2010. Then, because I could not deal with all of the pain, the wedding was pushed back to 2011.
Long story short...I would not allow him to visit me in the hospital after my brain surgery in 2010, or the second in 2011...or even my gallbladder removal surgery in 2011. I did not want him to see me that way. Eventually...his family lives in California and I live in Maryland, in November of 2011, I decided that I could not handle a relationship, let alone an engagement or even a marriage...and I suggested that maybe it was best to have him back with his family, where he would possibly be more comfortable. So in November of 2011, he flew back to California and we hardly speak now...not that we are not friends still, we just are not as close...though an engagement and almost-marriage can pretty much do that to anyone.
I just was thinking about this and I felt like this was a safe place to share. I feel like a terrible person for this. I just wanted to vent in a place I feel most comfortable venting at.
Does this really make me a terrible person? I did not want to marry someone that I could not open up to and show my weakest and most vulnerable side to.
I just don't even know what to think of myself right now!!! I feel terrible about it...I know it hurt him...and effected him a lot more than me...I just...I hope this does not mark me as an incredibly horrible person for the rest of my life...
I just could not be in a relationship with anyone until I knew I felt good about myself and about my health. So, I have recently started dating and I am very, very confident about it all now. But a part of me is scared about the future...does anyone have any advice???
Anything is very, very much appreciated...
Thank you so much...
Heather
In 2010, I got engaged...but remember, I was dealing with the worst of my PTC. I could barely even be around him because of the fact that I was hurting so bad that I just did not want my pain to effect my attitude towards him...
We were set to be married in June 2010. Then, because I could not deal with all of the pain, the wedding was pushed back to 2011.
Long story short...I would not allow him to visit me in the hospital after my brain surgery in 2010, or the second in 2011...or even my gallbladder removal surgery in 2011. I did not want him to see me that way. Eventually...his family lives in California and I live in Maryland, in November of 2011, I decided that I could not handle a relationship, let alone an engagement or even a marriage...and I suggested that maybe it was best to have him back with his family, where he would possibly be more comfortable. So in November of 2011, he flew back to California and we hardly speak now...not that we are not friends still, we just are not as close...though an engagement and almost-marriage can pretty much do that to anyone.
I just was thinking about this and I felt like this was a safe place to share. I feel like a terrible person for this. I just wanted to vent in a place I feel most comfortable venting at.
Does this really make me a terrible person? I did not want to marry someone that I could not open up to and show my weakest and most vulnerable side to.
I just don't even know what to think of myself right now!!! I feel terrible about it...I know it hurt him...and effected him a lot more than me...I just...I hope this does not mark me as an incredibly horrible person for the rest of my life...
I just could not be in a relationship with anyone until I knew I felt good about myself and about my health. So, I have recently started dating and I am very, very confident about it all now. But a part of me is scared about the future...does anyone have any advice???
Anything is very, very much appreciated...
Thank you so much...
Heather
My ex-fiance was supportive, I just was in so much pain that if I was to be around people, I would have snapped so easily...I couldn't deal with it.
The new relationship, it is fantastic. They are really supportive and understanding because I made it known BEFORE we got into a relationship that I had health issues...so very much support here!
I am so sorry about your husband. I will be here for you. I promise. You can always speak to me. :)
Hugsss.
Feeling good about who you are is important - and that means the good with the bad in life (cause life is never a bowl of cherries!) I knew my guy was for me when early on in our dating life we went camping and I had no shower, hair was a mess, had my thick glasses on (couldn't deal with contacts in the woods) and no makeup. He looks at me with a warm smile and says "you are beautiful!" If your guy sees you the same way, keep him!
As for you, you weren't ready, and there really isn't much left to give anyone when you are dealing with this. And the fact that you didnt want to, or felt like you couldn't share that part of your life with him means that he probably wasn't the right man for you at that time in your life. You can't beat yourself up about that. And btw, you are too young anyway ;) I am glad this new relationship is going well for you. Don't do anything that will compromise your health or recovery to make someone else happy. :) You can talk here anytime! I hope you also feel like you can talk to your new boyfriend as well. It is important when you are dealing with something as big as this.
Big hugs!
Amy
Looking at it from the guy's viewpoint, I can see he might say you wouldn't let him love you. You couldn't trust him that he really did love you unconditionally as he said he did. Part of being pair-bonded for a lifetime is being willing to support each other through thick and thin. That doesn't come automatically to anyone; you have to build it over time out of many smaller experiences that prove this is the person to trust with all of you.
There is a reason your subconscious just couldn't let go and let him support you all the way. There is a reason he didn't push back to prove to you that he would be there unconditionally. Nobody's fault. You just got lucky that the one who *seemed* like your perfect match was eliminated from the picture without calamity and before it got to the point where it couldn't be easily undone.
Trust your feelings, Heather. Sometimes they are trying to tell you something your conscious mind may not want to hear. Bad person? Quite the opposite! You saved the both of you a lot of pain. When it is absolutely right, you will know it and you won't have those bagging fears that if he sees you in a vulnerable state, nothing will ever be the same.
Heather
Please don't feel bad. Actually, I think it was a very mature move that you made. Marriage is a huge commitment and it takes a lot of nurturing. Being ill is no easy feat and trying to build a relationship and handling a major illness takes time and a lot of TLC. I've been married for 22 years and IIH has been very tough on me and my family. They hate seeing me in constant pain and unable to things that brought me joy, let alone the simple things that I can no longer do and that's hard.
When someone suffers a major illness or disability/disease, I truly believe we go through a roller coaster of a process. It's almost like you're grieving for yourself....things you can no longer do, trying to adjust to the new daily pain and bodily limitations etc., it can wreak havoc on the mind. It takes time to adjust and it may not have been the right time for you, and that's perfectly ok. Heather you are young, smart and strong and I'm so glad to hear that you've decided to date again. I truly believe we all have a soul mate...someone out there who is tailored to fight like a glove with our likes, dislikes, disabilities and personalities along with a million other things. Your Mr. Right is probably right around the corner and he will be truly blessed to find you!
Disclaimer: Mind fog is at a max today, I hope what I've said here makes sense... ;D
We are civil friends, he understood that I could not handle both the illness and such a serious relationship. He lives in California now (as I believe I stated), so any talking we do, it is online now...I am not a huge fan of the phone. But we have not talked in months! That last time we spoke, it was a few months ago...
I am dating again, but I am still afraid! I have not really been up to anything the last week and a half or so, due to the most recent issues. I just am not even sure this will work. I just do not know what to do! I feel like I am such a mess when it comes to relationship. (I had a state psychiatrist who had to do an evaluation for Disability Determination and he said that he believes the reason I have such an issue with relationships and them lasting is because of how I was sexually assaulted more than once when I was younger that now I just cannot fully open up to someone...it makes sense)
I just, I do not know if I am fully, 100% ready for someone yet. I do not know what to do. :(