Self Support?

[ILADVOCATE]

Sorry if I appear a bit keyed up. Its just I am finding the only person that can support me is myself. I don't mean financially but with making decisions or emotional support in general. I appreciate self reliance but its not really physically possible because of my disability but I still want people to accept and appreciate me (and help them back). I realize things aren't going to be so easy and it may be a while that I am homebound physically. When I ask people to help find various accomodations they seem to need specific guidance and sometimes then they react or become unnerved. I have a great psychiatrist but he helps me with medication (and very well) and conducts talk therapy but I've never found too much help from social workers and the like and I have tried. I don't want to think life has passed me by and I occasionally have chances to engage people but it seems I have to define my own recovery. Is there anyone else who is alone or isolated or was and had to help people to understand them before they could be helped? Any ideas would be welcome. Thanks.

[zzzmykids]

ILADVOCATE,
You wrote your thoughts, frustration and hurt vividly. Thank you.  
I always appreciate your comments and help. I think of you as solid as a rock and master over your mental disorder.  BUT, I do want to give you encouragement and love when I see your pain.  Most of us can relate whether we are in a home with no one to visit us as my Mom and Dad are most of the time, or be in a home with grandchildren, three dogs, husband, both daughters and a boyfriend and husband! That's me and I am emotionally alone most of the time.  I saw my family more when I was in bed throwing up than when I am in bed fetal.
We, many are here for you.
Again there are many here for you, more than you think, I believe. As I say to those I know in real life, "You are a good person, Charlie Brown."
Sincerely,
zzzmykids

[ILADVOCATE]

I do wish to. It was hard to seperate manic episodes before recovery from reality but physical pain does overwhelm you too. I wish I could seperate it from my thinking process but I don't know if that's possible for anyone. I do see there's a place for me in this world. Sometimes I do tend to feel lost as people pass me by and I can't physically communicate hardly these days. I asked a family member about acquiring a communication board and that should help. I do have some goals to accomplish too. And besides my neurologist I will be seeing my psychopharmocologist this Thursday. If anything comes up of interest I'll post it in my journal entries within the confidentiality I keep with them about advocacy for new treatments. The first day of the Clonidine patch which is today is far better physically and mentally. But I know both of them if provided with information will research new treatments and start me on them if they feel they are safe and effective within their judgment. I do think the most important step I made towards recovery was in 1996 when I changed to a psychopharmocologist and for people who haven't responded to commonly used medications that can be a very valuable option.

[ILADVOCATE]

I would agree and I always made efforts not to self isolate in the past. This one so much is physical though. I can't guarantee things will improve physically. But I am seeing my neurologist today and I will be discussing medication options with him. When things get painful physically I cannot deny I get suicidal ideations but I would never carry them out (if I did have those thoughts I wouldn't be posting here) but one good thing is my mother is coming to terms with her own bipolar and is working to help me achieve the accomodations I physically need to be independent and learning to let go. Sometimes people before treatment when they can't control their own emotions do it "by proxy". I can't say before recovery I haven't been guilty of that myself. The antipsychotic agent I am on has provided a close to full remmission of psychosis. The Clonidine to quote my psychiatrist is "a lousy mood stabilizer" but its the last one I haven't tried. As they come out with new ones in development I'll certainly be finding out about them and advocating to get on them though. Mostly what's going on is physical and factual though because before recovery if I were manic I'd be running all over the city. Even when depressed I went out. Just have to get things set up and improve enough physically to leave the house more than short walks. I'll find out about physical treatments and they come as well too.

[blacksoul004]

i know just how you feel. when i was in the process of relizing that i was bipolar i had no one who realy understood.  i had to make my own oppionment and then was critisized for being on the meds. my mom is bipolar too but it seems she is too rapped up in her own problems to worry about whats going on with me.  when im feeling manic or depressed i am all i have to turn to bc no one else realy tries to help me. i dissapear when im sad bc i know no one whants to see me moping around the house. i turn on my music and lay still in my bed till the feelings pass. what else can i do? dealing alone seems easier then taking the critisisom everyone else has to offer. the only problem, you get so rapped up inside yourself you dont know whats helpfull or whats fantisy. i keep most things to myself. mabey thats the cause of my panic attacks?? but i know how you feel.

Heidi

[Twelvesgirl]

See! You have it figured out! Sometimes I think you just need to get on here, write it out, and then you'll get it! It's like journaling for all of us, everyone can see it, and we all share it together. It's a good thing! I appreciate that even though you help all of us so much, that you still have struggles, and ask us questions too! I'm never helpful, but I like to pretend that I am! I'm hopeful that I'll be able to be at the level of advocacy and kickin' butt and takin' names for my daughter as soon as I can! I'm learning, and as you know, there is a lot to learn, a lot to do, and not very many people to help you....it terrifies me to think of what would happen to my daughter should something happen to my husband and I. Better get on that...........

[ILADVOCATE]

Thanks much for your supportive advice. I'm making a follow up appointment with my neurologist as for adjusting physical treatment and as for what I can no longer physically do I am continuing to set up accomodations. I now have Access A Ride coverage, a TTY and am appealing a denial on home attendant coverage. As well because my level of mental recovery is close to full but there are neuropsychiatric criteria still under study that impact on me, I am working on having documentation written by myself and finalized with an accountant or lawyer that will be signed by all family members and ultimately added to my Health Care Proxy (something everyone should have) and eventually entered in the hospital system so that when I go to (physical) doctors and if needed (physical) hospitals they will have instructions on what to do and how to treat me as what is known about me is confined to a small circle of research psychiatrists and neurologists though I am seeking to increase that as well.

[Twelvesgirl]

Well, I myself am not physically disabled. But my daughter (age 6) has a seizure disorder that causes her to have seizures pretty much all day, which has left her at a developmental age of between maybe 6months to 1 year, she is non-verbal, cannot sign, doesn't understand spoken word, she uses a wheel chair when we're out and has very strange mannerisms. We don't get out much between her disabilities and my anxieties!!! It is somewhat easier to find people to help because of her age. Also she has us to help her. Unfortunately I learned through The Arc that you have to fight for everything, you have to be your best advocate, you have to do everything. I have learned that not very many people care to help, people do get unnerved by my daughter, she seems strange to them, she is hard to figure out, and her needs seem hard to meet. We also do Home Healthcare, but sometimes I wish I could educate the world! Too bad I can't speak in large crowds! I think that they just don't understand and get nervous maybe, I don't know, I really haven't helped you at all, just wanted to let you know that I understand. I'm sorry I can't help you as much as you always help me!

[paranoid_cataclysm]

Yeah I agree with Narnia41 that you're being dealt an unfair hand.  You're always so helpful to practically everyone here and yet you're alone and isolate as you put it.  I wish I knew what to tell you with how to change your situation because I've kind of got a similar problem because most of what little family members I have left that I try with either are not accepting the fact that my functioning is being severely compromised or they just don't have a full understanding.  I only received help recently because of this guy I know at work and my uncle who I never even met until a few months ago.  I sometimes wonder if the ones I have the problem with are refusing to accept this because they're in denial.  Is your family not properly supportive of you either?  I'm assuming you were referring to them to when you said people.

[Narnia41]

I hear your plight, and you are so right about being our own best advocate at times.  It shouldnt always have to be like this, especially when you are physically disadvantaged aswell.

Here in the UK we have Community Psychiatric nurses who do home visits and are always available at the end of the phone in times of crisis too.  Mine has been my lifeline recently.  Not sure if you have a similar system in US?

It's very unfair and unjust that someone like yourself who puts so much time and effort into advising others cannot get a good support system himself.  Personally I think you are going to have to shout even louder for support as you deserve it as much as the next person.  It does seem crazy that you have to spell out your needs to people or organizations who should already have a pretty good idea of what your requirements are going to be.  If you haven't already I think you should talk to your Psychiatrist about this and perhaps he can intervene somehow and advocate for YOU?