2.5+ Years Later
 

Oh what a journey it has been since sustaining my first diagnosed concussion 2.5+ years ago. I’m here right now looking for answers that probably can’t be answered. But if anyone has any advice or suggestions, I really appreciate all feedback.

I sustained multiple head injuries during my senior year of high school. I pushed through symptoms on and off for about 2 of the 2.5+ years. I learned the hard way that pushing through does not work. I pushed and pushed until I could not function at all. Stupid. I have learned not to push through symptoms though.

I had a psychotic break (delusions and hallucinations) about a year ago last spring. I was hospitalized for 6 days and was diagnosed with schizoaffective disorder. I didn’t take the diagnosis seriously until about 6 months ago, when those symptoms began reappearing. My parents and I thought my break was from taking amitriptyline, which occasionally does cause psychosis. I would say currently that my schizoaffective symptoms are very mild (minus apathy), thanks to Abilify. The symptoms themselves do not currently worry me. The health of my brain from schizophrenia is what does.

I know this is not the forum for schizophrenia, but I feel like most on here understand what it is like to have poor brain health. Overall, I am at about 50-60%. I have a low tolerance for stress and stimulus, light and sound sensitivity. I’ve figured out how to maximize my days and I can go 1.5-3 hours without a break. Then I need a 55 minute break. I’ve tried more frequent breaks and shorter periods without breaks. This is what works best.

I’m currently taking 5 credits through a local community college. One class is online. They are very low stress and require very little effort. I would like to go into social work or counseling, but that is up in the air. All that I want out of life is to help others improve their situations.

One of the few things that actually helped me (syntonic phototherapy) I overdid, and now my eyes are not doing the best. I’ve been declining again since not being able to do it. That’s the concerning thing to me. I have a good diet, exercise, meditate, have a low to moderate stress, follow the vitamin regimen, am social as much as I can be, and am rarely depressed or anxious. I’ve also done just about every therapy possible.

I know schizophrenia is a brain disease; it can cause havoc on the brain. Combined with brain trauma, I truly don’t know if I will continue to improve. In theory, my brain health will likely diminish. My health has only improved when able to do the syntonics. I had another period of time where I didn’t do the syntonics and declined.

I’ll turn 20 in May. My psychiatrist thinks that I should apply for SSDI. I am thinking that I should apply as well. I don’t imagine that I’ll ever be able to fully provide for myself financially. And one day my parents won’t be around to support me. I will talk to my psychologist about applying for SSDI in about 2 weeks.

I’m just a little confused right now. I am very good at taking things one moment at the time and rarely think about the past or future, but right now I can’t help but think about my future. I feel the only thing to do is to keep taking it one moment at a time, apply for SSDI, and hope/pray like crazy that something better is to come. Is there anything that I can do to improve my situation? Once again, if you have any advice or suggestions, I appreciate it.

Thanks,

Jake

Jake,

I think it is too early to apply for SSDI although starting the application process has some benefit as the various assessments are done. SSDI does not provide much of a living. I've been struggling to live on SSDI since 2007.

I would rather be working but I can't work in a structured indoor (office) environment and don't drive so the remodeling work I did for 20 years is not practical. I need to be able to moderate my environment.

I think it would help if you determined what aptitudes you have at present. Wanting to help others vs having an aptitude to help others could be important. The important part is to try to identify your strengths and work with them. It is often much less stressful to work with your existing strengths than it is to have to maintain an intellectual growth in a discipline. The college path to a career may be too stressful, both in the schooling and the final job.

I have a TBI friend who took 10 years to finish his professional counseling degree. He was injured as he just finished high school. He has the knowledge, life experience, and personality to help others. He is a natural at it. But, he still has to moderate his daily life.

So, determining what work environments you can tolerate would be a start.

I did great with the one on one environment of remodeling work in customers' homes. The task was highly technical from a remodeling perspective but not intellectually stressful. I was able to master the technical aspects without being over-stressed.

An occupational psychological assessment may be helpful.

I just believe one needs to find something to stay busy, even if it does not pay well. SSDI allows one to make $1070 per month and still receive SSDI benefits. That would allow 100 hours of $10 per hour work per month.

My best to you as you consider these issues for you future.

At the age of 19 your brain is not quite fully developed so I'm hopeful you will improve. It sounds like you are going through a psychotic episode, so I wouldn't label yourself schizophrenic just yet as you're likely to come out of it and lead for all intents and purposes a normal life. You are right about taking things one stage at a time and try to recognise what triggers your moods - and rest! I have a family member who is schizophrenic so know what a prison it can become if not addressed. I wonder whether some other kind of counselling might work better rather than a formal psychiatrist.

Thanks for the reply, Mark! I appreciate it a lot.

“I think it would help if you determined what aptitudes you have at present. Wanting to help others vs having an aptitude to help others could be important. The important part is to try to identify your strengths and work with them.”

My strengths: Engaging in conversation with people one on one and coming up with solutions/work arounds to a situation. I can empathize with people very well and have a problem-solving mind. I also am a good songwriter (I play guitar). Though I wouldn’t say that I am at the professional level. I would say I’m more of an intermediate player with a good ability to song write.

“So, determining what work environments you can tolerate would be a start.”

Quiet settings. Very quiet. No extra stimulation than needed.


“An occupational psychological assessment may be helpful.”

Where can I get one of these done?


“I just believe one needs to find something to stay busy, even if it does not pay well. SSDI allows one to make $1070 per month and still receive SSDI benefits. That would allow 100 hours of $10 per hour work per month.”

I will ask my physicians what type of jobs are available for a person with limitations like mine. My psychiatrist mentioned in my last appointment that “Your condition is a full-time job.” I don’t exactly agree as of right now. I feel like I can be somewhat productive in society given the right setting and situation. I honestly just want to find meaning in life, and I believe finding a job will help with that.

Also a final question, Would it hurt to apply for SSDI right now? My uncle has also suggested that I look into it.


SuperElectric, thanks for the reply. I do in fact have schizophrenia. The episode is more like seasons lol. I have had lasting symptoms for the majority of a year since being diagnosed. Currently, I see a psychologist as well as a psychiatrist. I also have a supporting family and great friends. I also am happy with the medication I am taking. Right now, the schizo symptoms are mild.

You say "My strengths: Engaging in conversation with people one on one and coming up with solutions/work arounds to a situation. I can empathize with people very well and have a problem-solving mind. "

Self-assessment is not as valid as assessment by others, especially by those who would employ you. Plus, there can be a big difference between what one enjoys doing and what one can be gainfully productive doing.

If your psych thinks you are fully occupied just maintaining your own needs, that means something.

I think you should set your short term goal at finding some counsel about your strengths and weaknesses including interpersonal relationships, work relationships and work environments. Hopefully, you can find a sweet spot where they all overlap so you can look for opportunities in that area.