I'm new to this forum and am so glad to have found it. This is a difficult condition to endure alone. I feel like I'm screaming with pain, sadness, frustration, fear, anger inside while smiling on the outside out of pride or even a kind of shame at this horrible infirmity. I'm a 35 year old female, was diagnosed at 13 after I badgered my doctor for about 2 years that there was something wrong with my back, and had a fusion at 14. My body feels like it's at least twice my age. This is such a horrible condition to live with constantly. People may know that you feel pain, but really, unless they're living with it they really don't understand what this is like. I feel at the end of my rope often and feel like there's no one who understands what it's like to live in constant and often high levels of pain. There's no relief no matter what time of day, not even sleep gives any kind of respite from it; it wakes me up if I have to roll over or if I sleep in one position for too long. When I get up in the morning it's the worst, I can't even stand up straight, so I get up, get my kids up and get them breakfast then have to sit leaning to one side till it passes which can take anywhere from one to 3 hours. I can't sit for too long and I can't stand for much longer than 10 minutes. Taking a walk.....might as well forget that idea, and I limp almost all the time now. There isn't one part of my life that isn't affected by this. My husband of 6 years has been for the most part sympathetic but lately that seems to be diminishing also. As the pain becomes worse the less I can get done as far as house chores; I hate that because I used to be the person that everyone used to say had the spotless house. I just can't do it anymore, not even half of what I used to be able to. I know it frustrates my husband and I can even understand it to a degree but it's horrible to feel so awful then in a moment of anger have the person you love make you feel worse by calling you lazy. I have scoliosis, rotoscoliosis, spondylolisthesis, spinal arthritis and I think pinched sciatic nerve (the numb pain in your pelvis and shooting down a leg). I don't even have the words to express the despair I feel at living like this.
To anyone reading this, thank you and I'm sorry to go on like I did. I really needed to though because I have never been able to before.
I really would welcome your stories as well. I look forward to getting to know you all.
To anyone reading this, thank you and I'm sorry to go on like I did. I really needed to though because I have never been able to before.
I really would welcome your stories as well. I look forward to getting to know you all.
Comment