I was going to title this Asking for Help, but this feels more appropriate.
I’ve been struggling emotionally with a lot of things as I again try to do something to change my life from being between a rock and a hard place. Our lives become tremendously small, when disabled or with a long-term illness, and everything, everything focuses on our illness or condition.
Life continues to be myriads of appointments and stacks of paperwork asking questions and I relive the details of the trauma. I feel trapped and helpless in a downward spiral I did not create. Depressed, I am frustrated by my own limitations, and that resources and choices aren’t the same for disabled people as they are for the abled.
I’ve spoken with another person “in the know” who previously offered help now saying proving my disability to SSDI (Social Security Disability Insurance) will be tremendously difficult because I have worked – I worked because I needed to keep the house damn it! I have and continue to make A LOT of mistakes at work. What in the world am I to do? I don’t fit in the abled world and sure feels like I don’t fit in the disabled one either. I feel I’m at my wit’s end. I have lost so much and it seems there is no stopping the rest of the loss. Is there really no help for us in this situation?
How does a person stay sane in the midst of all this? Any wonder why TBIers suffer with depression and suicidal thoughts? If the TBI doesn’t kill you, going through the system will. I wish I had a plan! I wish I had a life that was far more manageable and allowed me to have a social life, friends, activities, hobbies, church, etc. Oh to simply be able to live…
If I do not get SSDI, I will have attorney fees to pay on top of all this. To go through all this struggle, all these years of hard times due to a disability and not be able to go onto disability is insane to me. I would never have chosen this life for myself! Like many people, I loved to work, I loved being active, having a social life, ministering and making a difference in this world. Sometimes the loneliness itself is staggering.
I emailed several organizations two weeks ago regarding resources for keeping my home and I’ve not heard back from one. I’ve asked the Occupational Therapist at rehab twice to send me the name of the person at the local paper to get my story out, haven’t heard back from her either. Maybe I don’t have a story to tell? I hate being this desperate! I feel like I’m pulling people down, oh but if I could have changed this path, I would have by now! This is real life. I’m used to being a giving and independent person, this new life is totally out of character for me.
Our work place has been audited and now I have to keep track of my hours even though it’s piece work and I don’t get paid by the hour! One more thing to fry my little brain, I don’t know how much longer I can hold on to this crazy life.
I am frustrated and so-o-o-o-o bone and soul tired. The fatigue has been ongoing pretty much since last fall and I don’t remember the last good day I had. Dang this stress!
I made another appointment with the social worker, I have to talk to someone and God help me find people who can and will help. I have chatted with a couple of TBIers online, despite chat goes too fast for me, it’s helpful to know I’m not alone. Some of them tell me to hang tough, fight for what I need for my life, and others say sell and move into an apartment, another says it’s criminal people lose their homes. I think all this is much easier when you’re not doing all this alone, and have support of friends and/or family, which I do not. I think always having been the giver, the one to make people feel good about themselves people still need me to be that way. My entire person has changed and I guess maybe that means people ‘loved’ me before for what I did, or how I made them feel, not who I am.
I don’t know who to turn to in these really bad moments. I’ve tired of telling my story over and over to those who cannot help nor understand. Why is this such a difficult path?!!!
I feel stuck, the emotional pain and suffering intensely etching my soul.
Please pray for me.