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Who Gets It?

How much support do you all get form people? I find the most of the people I know forget that I have had cervical spine surgery, and had bone fusion, I have Fribro and I also have stenosis. I'm only 50 years old and sometimes feel like 80. I try SO very hard to be ok and have energy. I try to laugh and have fun, I try to not be a victim, I try to not complain. Maybe that's why I joined this site and this group. Maybe I can truly be honest and be myself, along with the pain I live with each day. My arms and hand are on fire. My face and neck are killing me. My brian is in a constant fog and all I am told is "OMG you forget everything! what's wrong with you?" This from people who know me and know what I've been through and my diagnosis. I wonder if some are right? Is this in my mind? It can't be that bad? My head has not stop hurting today. I woke up at 6am with a sever headache and still went to work and got things done. I drove an hour back home from work and now at almost 9pm my head is pounding even more All day like this? Who can manage this? I have, and still no understanding from those that say they love me. Does anyone ever feel this way? Will it ever get better? Does it?
enblanco enblanco 46-50, F 3 Responses Aug 1, 2012

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it seems like when you are first dx: people understand for wahile but as time goes on they forget the constant pain we live in. I get tierd of hearing "yur always sick" or "yur always in bed". The one I hate the most is "u have to push through the pain", I feel like saying I push through the pain everyday. I feel like this has robbed me from a happy life, and it sucks when u feel as if no one understnads or I feel if some feel I do this for attention or because I am just lazy. I feel yur pain my friend.

WOW...so sad for you . I'm so sorry you are feeling so alone. I too feel that way at times, but I have found that at times if I keep my mind very busy I seem to forget about the pain for a while. I wonder...do by chance have any hobbies? Do you like anything at all? painting, music, photography? I now this might sound strange but I found that when I become involved in something I truly love or enjoy it seems to help. Weird I know but sometimes we that suffer from pain are worse of when we put more of our energy in wondering and trying to figure out how to feel better. I love to write and also began running. Strange huh? but somehow it worked. I did feel pain after running but for some reason knowing that it was "good" pain, the bad pain was somehow not worth my attention anymore. You don't have to run, maybe walk for a little while. Having great music during my run also helped pump me up. I felt I was in control of the pain and not the pain in control of me. Also... I am learning to educate people. Yes, I live in pain.... and I don't want pity, I want understanding. I am not a victim... but by me telling people what I go through it makes me feel that I am being one. NO I am not a victim dammit, I am just trying to tell you what I have, I say. Listen to me! Don't ignore my need for your empathy. This is what I have told those that say they love me. I am here if you need to vent. I am here !!! Truly!

I know exactly how you feel. I try so hard to go on, to smile, to enjoy, to be upbeat for my daughter but I am in so much pain so much of the time. I don't complain either. No one cares. I think a lot of us suffer in silence because we have no choice. There are some fortunate people who have spouses, family and friends who care about them. My husband and my daughter never ask how I am and my family has all but abandoned me. I am angry and depressed but yet I just do what I have to do. I can't take medication. Everything I have tried makes me feel so much worse. I cannot do without sleep so I do take about 2 mg of Imovane and sometimes an anti-anxiety med at night. We have no money for extra things like massages or other alternative treatments. Most of the time I think about when I can go back to bed with my sleeping pill that only gives me a few hours anyway. Why? I feel so bad for everyone with this and especially those who feel no one cares. Wishing you well.