Guest guest Posted May 30, 2011 Report Share Posted May 30, 2011 You are sooo not alone in how your feeling. And many days I live in that gloom myself. Dealing with chronic pain and knowing there is so little help can make us feel this way. But I'm going to share how I cope and most days it works for me. But I'd be lying if I said that I didn't have my days too... Before I became ill, I was superwoman (or so I felt lol) I was a single mom who worked 7 days a week and just got by. I came from an abusive marriage, my children were all sexually abused by their father and I was determined to be independent, never again relying on a man because Of my fears. I did remarry but was very self reliant and NEVER would I put trust in our relationship. Life was hectic, I had so little time to just sit back and smell the flowers. Then my world changed. And I would come home after 12 hours of work and collapse, good to no one. And my quality of life was horrible. I knew I must make changes but to move my life and lean on anyone, was just not an option for my life. So I trudged on and would just cry in frustration. The changing point in my life was when I decided this was just not working for me anymore. Not only was I suffering, but so was my family. So I drew up my courage and decided to talk to my husband. Scary but I had to be unselfish and think of my family and how I could make things better. I told him that I may have to give up my business and apply for disability. What he said changed me that day. This amazing man said " , you have taken care of all of us all this time, It's time for me to take care of you " Wow!! And those words gave me the ability to let go. I did get rid of my business and go on disability. Money is so very tight but we make do. But the most amazing thing that has got me through all of this is my family. I can only be up 5-6 hours a day, the rest of my day, I am lying in bed. It may seem like life's quality is nothing. But for me, I am now so present in my families lives. My kids come into my room and we spend endless time just talking, we laugh at the silly things the cat may do, we watch movies together, plan meals and work together to get them prepared. My marriage is now whole and I realize what an amazing man I married. He is so good to me, loving and supportive and we finally have a marriage that we work together, so I now have trust. We all have special circumstances in life but in sharing my journey with you. maybe you can find some piece in life that what is, is. I can't change my illness but my illness has changed my life. And in such a positive way. Had I not gotten Chiari, I would still be chasing a dream of bigger and better things when in reality, I have exactly what I need in life. The love of my family. I hope this has helped, you just have to look at the big picture. Not at the losses this disease has given you, but the gains you have gotten and THAT makes it all worth while:) Hope everyone has a day with happiness in their hearts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2011 Report Share Posted May 30, 2011 Prayer and lots of it...that's how I get through. Thankfully, I'm not dealing with a lot of symptoms right now, but last year at this time, I truly thought I was going to die. I had never been so scared in my life as when I saw my MRI. But I had good friends to lean on, and a boss who understood (thankfully) that I would have some bad days and have to take off occasionally. I'm a single woman who has to work, and I'm trying to finish my Master's degree. Yes, there are hard days and weeks and months, but during my worst times, the only thing that gets me through is prayer. So, hang in there. You'll make it. We all will. Realism is for those who don't know how to DREAM BIG! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 To be 100% honest, every day almost, I long for the end to this suffering. But what keeps me going and gets me up is my family, especially my husband and my son. Our son lives 900 miles away, he's 30 and works in CA, but his heart would be broken if anything happened to his mom; eventually, he'd get over it...but his father needs me. His father, my husband, is also debilitated with chronic pain and he is 11 yrs older than I am. What would HE do if he were all alone? It's the selfish ones who give in and let go. The ones who care and love get up every morning, walk out to the kitchen or living room and smile at everyone with a " good morning! " Because that is the gift they can give to their families. That's how I see it, anyway. And prayer, and my faith are also the mainstays of my support system. Helping others online when I feel up to it gives me some sense of worth. I hope you will see how much it would hurt your loved ones if you locked yourself inside and kept yourself away from " living!!! " and the other thing is, keep remembering, " This too shall pass. " Keep saying that and some day, you'll wake up and the gloom will have been replaced with sunlight and joy. hugs Virginia Bad horse wreck in 2004 which resulted in: " acquired chiari " 4 plc frx of the C1 Atlanto-occipital dislocation Arachnoiditis Tethered Cord (had surgery 07, but symptoms have returned) Traumatic Brain Injury etc > > Just wondering what everyone does to get through the really bad days. I've been having some pretty dark days where it's difficult to see the light at the end of the tunnel & I just want to lock myself away from the rest of the world. I really feel like I am losing myself emotionally and physically. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Hi Debra, Welcome to the group! This is a very nice place to find comfort and strength from a very difficult diagnosis. I hope this does not offend anyone but I pray as hard as I can first. Second, I try and remember that everything I go through makes me stronger, of course, I usually don't think this until after the darkest moment but I'm getting better at it after 10 years. It takes a lot of practice! Sometimes with Chiari and it's related disorders it seems as if no one understands including doctors, therapists and family. I believe that is when we have to dig even deeper to try and enlighten others and be there for each other. I hope you are doing well today. Holmes Decompressed (2002), Detethered(2006), Craniocervical Instability (2011) Quote Link to comment Share on other sites More sharing options...
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