I am not new to being sick. It has been eighteen years of ups and downs. What I am new to is the idea of a diagnosis. In the past, I have always pushed until I could hardly function, believing that without an explanation, I had no right to rest.
With the hope of getting my diagnosis on paper right around the corner, and the fact that I simply am so sick that I rarely can push at all, I guess I have been a little more gentle with myself.
I said no to a friend during a very bad spell a couple of months ago and now we are not friends. I just don't understand this and it is painful. Mostly, I feel sad for my wife, who got the "break up" email last night. She is such a trooper, supportive and loving, always giving her most. She works with medically fragile children and comes home to a sick husband every day. Although we have had to give up most of the activities that we enjoyed doing together, I have never heard her complain about her life. She simply finds some new thing - even if it is just watching TV or reading beside me when I'm ill.
I simply don't understand not giving people the benefit of the doubt, even more so when they are sick. I do what I can and that is the best I can do. I know I am an adult and should be able to handle it but it feels like my fault. In a way, it shows me my friend's true side but, sometimes I wish I could pretend like other people do.
What do other members do to feel better when these things happen?
I hate to hear you've lost a friend. It's a sad fact that some people are just not there for you when the going gets rough. I guess it's best to weed those people out early but it still hurts. I would try to seek out those who are truly there for you and keep them close. Try to invite friends to participate in the activities you can do, even if that is just watching a tv show together. I guess I'm lucky in a weird way, my best friend has spina bifida and has been ill her whole life so when she's feeling good we do things and when she isn't we just talk on the phone or watch tv together. Now that I've had to slow down due to illness she is totally understanding.
Yo man, I know how it feels to get down on yourself! I'm 32 and have been dealing with pain/symptoms since I was 12! I've been through 2 back surgeries and just recently had a surgery for Chiari Malformation 2. So that was number 3 under the knife. I've been in the depths of it all, but I am lucky to have the support of my wife, without her I don't know if I could have handled it all! When I was diagnosed with Chiari I just about lost it!!! I lived everyday with the thought of death on my shoulders. It was horrible, but my wife told me, "Snap the hell out of it, because if you think you're going to die, well than get the hell up and enjoy this last day with me!" It was tuff to hear but it struck a nerve, she was right! Well here I am 2 years after and have been living every day as it were my last. Get out and enjoy nature, listen to good music, eat well, and enjoy your wife because like the saying goes," You don't know what you have until it's gone!" Trust me bro, you don't want to lose your backbone. Stand strong with her and thank her for being there through all that she has had to endure with you. Try meditation, it takes practice but it is so rewarding! Me and my wife have started a meditation group...people come to our home once a week and we all share a moment in silent meditation and than talk afterwards about anything and everything that comes to mind. Just a thought, You will be better!
I'm sorry you lost a friend. Have you ever heard of "The Spoon Theory". It is a great way of trying to explain chronic /invisible illness to people who do not seem to understand.
Thanks all for your responses. You are right, someone who loves us should want to learn about it! I am so used to feeling like I have to suck it up so that everybody else can feel okay about it that I guess I don't always feel like I deserve the benefit of the doubt on days that I can't.
It sucked that it was my wife who took the brunt of it. She works so hard and gives up so much to back me up all the time. Just seems like a friend could understand that. I would give someone the benefit of the doubt even if they weren't sick but I guess it doesn't make sense to expect the same from other people.
I built her a fire to come home to and told her how sorry I am this happened and how much I appreciate her.
It really helped me through the day to see that other people are confronting this as well. It is too easy to take it on ourselves.
Good for you! You just gave me goose bumps! You will make it through...nothing like a great bonfire with the loved one. I love it!
AsaN said:
Thanks all for your responses. You are right, someone who loves us should want to learn about it! I am so used to feeling like I have to suck it up so that everybody else can feel okay about it that I guess I don't always feel like I deserve the benefit of the doubt on days that I can't.
It sucked that it was my wife who took the brunt of it. She works so hard and gives up so much to back me up all the time. Just seems like a friend could understand that. I would give someone the benefit of the doubt even if they weren't sick but I guess it doesn't make sense to expect the same from other people.
I built her a fire to come home to and told her how sorry I am this happened and how much I appreciate her.
It really helped me through the day to see that other people are confronting this as well. It is too easy to take it on ourselves.