I don't think I'm able to function on my own

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

I don't think I'm able to function on my own

Postby Cyborg Ninja » Sat Jun 09, 2007 9:51 pm

My mobility is fine, but there are some days where I just can't get out of bed or sit up straight. Some days are good, some are bad, and that isn't ok in the "normal" world. You have to be at 100% and nobody has any compassion or empathy. My energy is so low sometimes I feel like I'm dying. Right now I'm doing ok but this morning and the last few days have been really hard. I wish I had a caregiver or someone to help me out now and then. I don't think my family would understand.
User avatar
Cyborg Ninja
Posts: 428
Joined: Mon Jun 04, 2007 3:15 pm

Postby Debbieducati » Sat Jun 09, 2007 11:13 pm

Have you talked to your Dr. about this, or are you just thinking this now. You should consult you Dr. they may be able to help in some fasion. Are you on disability now and if so there are such things as assistant living programs. Why do we pay taxe's? Don't be afraid to reach out for help, (in other words, Don't be too proud). I'm glad you posted this because we all need a helping hand from time to time. There are a lot of good people on this site who may be able to give you more advise. Try talking to your doctor, they are not all bad. Good luck. Love to all

Posts: 137
Joined: Fri May 18, 2007 10:35 pm

Postby mac » Sun Jun 10, 2007 1:12 am

deb is right, there are programs to help out folks like yourself. There is the Independent Living Center near you. You can look up the nearest one to you at http://www.ilru.org. They can help you with so many of your needs and also have counselors.

I'm sorry you have having bad days. I handle the bad days by remembering that there will be some better days around the corner, there always is.

take care and keep talking with everyone here, it helps and we're here to help you.


Postby Janice » Sun Jun 10, 2007 11:36 am

Hi Cyborg Ninja,

I'm sorry that you're going through a difficult time right now. I recently had a pretty rough time with my symptoms and what I could do or not do to make things a little better. I shared my information below in case you can identify with any of it or use any of the information to help things on your end.

I was a work-a-holic. The first 6 months for me were very draining, depressing and confusing. I felt like you most days and also in the sense of feeling that my family really didn't understand or empathize. It was extremely hard not to want to do it all, even though my body let me know that I couldn't. For one day of doing too much I would be in bed for the next three days needing constant help. Once I learned to adjust and not try to take on too much, just let it go, I started getting some relief from the one day up, three days down pattern. I can no longer clean and that was extremely hard also. I finally had to come to a point where I asked relatives (my nieces and my daughter) to come over once in while for a pizza cleaning party. We had the first one last week and I found that as long as I stayed out of the way I didn't try to be involved and suffer the consequences afterward.

Another helpful solution to getting support from my family was to have them wash the video from TCI and read through the materials from ASAP. It allows them to understand what you're going through and be more supportive.

Please know that you are not alone and as Mac mentioned there are places that can help us. Thanks Mac, I'm going to look into that myself.

Take care and you are in my prayers.
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Postby Ryzing » Sun Jun 10, 2007 1:59 pm

Sometimes we think people won't understand, but really, they will if we take a leap of faith and tell them exactly how we're feeling and what we need. In my case, I do a very good job at "covering up" my SM. I realize that if I don't tell people what's going on with my condition, they're not going to know I have it or how it affects me. I know what you're saying - there are soooo many people who only care about themselves in this world. I was just trying to help a friend the other day with her problems, giving her all the advice I had along with a sympathetic ear...but when it came time for me to unload, she could have cared less - she never even so much as offered a kind word. :roll: Not everyone is that way, though. There are some very kind, empathetic people out there waiting to help you - several here on this board, too. We're here for you. And we promise to be compassionate :D .

Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
User avatar
Posts: 1316
Joined: Wed May 16, 2007 2:37 pm
Location: Berlin Heights, Ohio

Postby donbr » Sun Jun 10, 2007 2:44 pm

You could also try dept. of developmental dissability, usually i think its for people with autism or downs syndrome or other types of dissabilities but they might be able to help out some

Postby Cyborg Ninja » Sun Jun 10, 2007 10:39 pm

Thanks for the replies everyone. I haven't really spoken up to my doctor about it yet but I will try to see her tomorrow. I just threw up like an hour ago so I'm still not so hot. I try to not push myself but I can't really spend my energy cleaning either. I can't do much at all. I'm happy I can even sit up straight in this chair right now. I'm not on disability and I don't know if I'd qualify or what. I don't know if people even think I need help because I guess I look fairly decent. But yesterday was the first time I had showered in days and that was a milestone for me! I mean, as long as I'm walking fine, I don't know if I'd qualify for anything. I have Crohn's disease and hyperthyroidism too.

I was dating a guy for a month and I helped him deal with his grandfather's death, but then eventually I opened up to him and told him how I didn't care much about living and he just wound up pissed off at me. Eventually he dumped me because of it. I felt like he was judging me. It's hard right now because I care so much about him but after saying a few choice words to him, he never wants to talk to me again.
User avatar
Cyborg Ninja
Posts: 428
Joined: Mon Jun 04, 2007 3:15 pm

Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 14 guests