Need Help With Getting Help

[friday7]

HI.I've been feeling for a while that I would like to get a volunteer job, but I am afraid because I have such unpredictable symptoms and people have a hard time understanding that.

I have never had a time where it was dangerous for my health to be working/volunteering.So it's not like should feel responsible for putting my health in jeopardy. But I do have limitations.

For instance.Well here's my list of demands.LOL

I need to be able to come and go.I can't have a day where it is absolutely necessary for me to be there. I have to be able to work for short periods of time and have breaks when I need them. I have to have a place to lie down if I need to.

This is the one that I worry about.But really it's not that much of an inconvenience.For instance once when I was in a partial hospital program, there were couches in one area, and in between groups I would recline for ten minutes.It got me through the day,and didn't hurt anyone else. After lunch I was able to lay down in an empty room, on the floor but I didn't mind..It also got me through the day.

The thing is. I had a couple of experiences with people not understanding this and making me feel like there is not place in the world for me unless I was completely well. It sounds like a distorted thought to me, but yet after the experiences I've had I kind of believe it.

One time I was attending that same partial hospital program just a a different year. I got sick, felt faint and wanted to lie on the couch. They refused and said it wasn't possible because there were people that were depressed and that they would then want to lie down on the couches if they saw me doing it. It didn't matter that I was sick, all that mattered were the rules. I understand the rules but if someone is sick you need to bend the rules. But no. So, I had to sit in a chair, and wait for my Mom to come pick me up. So while sat there in stead of lying I get worse and worse..By the time my Mom came she had to take me out in a wheelchair. I spends the next few days feeling horribly sick.

This could have all been avoided by letting me lay down on the couch. It made me feel horrible. Not physically but emotionally. Here was a place I was supposed to be getting cared for in and they were ignoring my needs.The only one that really helped me was another patient. She stayed with me and got me water. The staff just let me sit there.

It was a horrible experience, because it felt as if they were saying we don't care.

When I brought this up to my therapist there. She kept explaining why they did what they did and didn't take my said at all. I never felt safe there again.

I guess that experience has never left me.

But a few years later I was really depressed again. I needed help and tried to apply at the partial hospital again. Due to the fact that I couldn't even travel long enough to get to the one I went to before.I applied at the same hospital only a different branch, near me. The person on the phone was explaining how they couldn't accept me because I couldn't come all five days. I explained to her that I had attended before and that they let me come for three days. But then she told me they couldn't help me and I should go somewhere else. I explained that there was no where else for me to go. She kept telling me how it wouldn't work and was developing a tone. I told was trying to tell her how they allowed me to come to the other branch of the same hospital for five days and then cut it down to three after a week..but she didn't want to hear it, and was becoming even more abrupt. So I got upset at her..I didn't yell or call her names, I just kept asking her where I was supposed to go and trying to get her to understand that I needed help..and she hung up the phone!Now keep in mind this is a place that deals with people on the verge of suicide! I mean, could you imagine?! I couldn't believe it. So, I did something I would not normally do, I called her supervisor and told her what happened. She was very good. She apologized. And offered to let me come and basically did what the first girl should have done.

Only problem was after that, I again never really felt safe there.I mean that's all you really want when your out there.Just the knowledge that if you feel sick someone will be compassionate and understanding. Also because of my nervousness about not feeling cared for, I kept thinking 'what if I get sick, they wont' understand, They will throw me out', and stuff like that. Anyway, the anxiety produced more POTS symptoms of course and I wasn't able to attend. The thing is If I had felt welcomed right from the beginning this probably wouldn't have happened.

I still have these experiences in the back of my mind and I feel that no one wants me because I'm not normal. If I was normal I wouldn't have needed these people in the first place. I don't feel that anyone would understand. And all I'm asking for for really is understanding.I'm not asking for them to build a ramp for me or add parking spaces.Nothing major that comes out of there pockets. Just a place to recline if I feel the need to. I'm just so afraid to look for something because if someone says no, I feel that will add to the rejection from the world I already feel.

I know there are kind and understanding people out there, but I have trouble believing that. AND i'm afraid of running into careless lunatics like that last woman while I'm trying to find help.

I have thought about going to a Disabled person's program and asking for help. I have been to a support group run by them once, and they were very nice. I thought maybe they could represent me and explain to someone my conditions. I see they get people jobs that have certain conditions that the employer is willing to accommodate for, so I figure maybe they could do the same for me with a volunteer situation. But again I am afraid..I am afraid if they say no I will feel that rejection from the world. I know I have a disability but because I am not mentally impaired I fear that I will not be treated with the same rights. It's kind of like, because I look and seem normal I feel afraid that they wont' see me as disabled and feel that I should be able to do these things on my own. And I'm not doing so well on my own. It would really help to have someone behind me.Sort of an advocate.

I did call this place and leave a message, but they haven't called me back as of yet..And I guess I'm afraid if they do call..What do I say? How do I ask for help? How do I know what I'm untitled to as far as their help? And most important, how do I not get crushed if I wind up talking to someone that's not very helpful or concerned about me or worst, another idiot like the last time I tried to get help.

Well, I'd appreciate any advice.

If anyone has been in a similar situation..or has gotten help on the job. Or if anyone's ever felt shunned form the world of "the Normals", I"d appreciate your advice.

Susan

[comfortzone]

You are a very strong person - having endured all that and you are still on the path of motivation and function....good for you! I suppose as far as developing a thicker skin - my guess is that it takes patience and practice. You have to choose to not let the comments or remarks and the outcomes dictate how you are going to feel and behave. Maybe you could practice the scenarios over in your mind ahead of time.... Like do a mental script where the person actually does shun you and give you grief - to which you visualize yourself continuing to be the strong gracious person you are - who has compassion for the one behaving miserably toward you. You understand it is her or his issue - that they are dealing with things in the way that is unique to them ... but you don't buy into their baggage, their rules and their ideas. You then visualize yourself remaining calm and focused and determined.... Set yourself some goals. Work bit by bit toward achieving smaller goals first and build on those successes. Remember the only time we fail is if we quit trying..... to reach our dreams and desires. Most often the only one stopping us from acquiring what we want out of life -- oddly is ourselves. We take our eyes off the prize and give into licking our wounds, blaming, becoming bitter, resentful or unforgiving. However all of this can change. We can choose to be kind to ourselves first and foremost by caring for our health. In all aspects - physical, mental, spiritual, emotional. We can practice confidence & self respect & love. When you work with others that aren't bending things to your way of seeing them - and they aren't doing things as you wish --- it's time to re-evaluate. Maybe another approach would work better, maybe there's a bigger picture, maybe your gifts and talents are best utilized elsewhere. We all have amazing gifts - and a drive to use them to help others deep within....uncovering what we can do -- with special needs - isn't an easy task ... but with perseverance you will find your nitch. You impact people all the day long in important ways that help them.....keep up the good work and stay strong as you are.

[Noreen]

susan-

I think you have explained yourself well in this post.

Keep a copy of it as it would make a great letter. If you write instead of phone you can control the amount of anxiety you are able to handle at any one time.

It seems to me that you would function better in the world if you had a reclining wheelchair. That would be a concrete request that the disabled group might be able to help with. With the other situations you could explain that you are trying to get a reclining wheelchair for your neurological condition causing unstable blood pressure (substitute endocrine or whatever for your particular situation) but that in the meantime you may have to lay down or recline periodically in order to stabilize your blood pressure and heart rate before your brain is deprived of oxygen and more symptoms occur. Bring a mat, get a cane or crutch to help you get up and down - that way all you are asking for is a bit of floor space in a pinch.

I know wheelchairs and canes seem like they are used for orthopedic issues but really you need to think of them as mobility aids = these articles can help you get out and move and interact with the public.

I hope something here helps.

Best of luck,

noreen

[potsgirl]

Friday7~

I know exactly what you mean, and I would love to volunteer, too. I know also that most places where I would volunteer (similar to a workplace) would need someone they could rely on to be there certain days or times during the week. Anymore, people really count on volunteers, and if we can't make it in, normally they would have to find someone else to replace us. That's why I left my job and why I don't consider myself up to volunteering yet.

And please, no offense, but you may want to change your verbiage from your "list of demands" to sounding a little more willing to work and compromise if possible. If these things are absolutes for you, then it may be hard until you're a little better to find a volunteer position. Perhaps something on the Internet?

Good luck,

Jana

[friday7]

You are a very strong person - having endured all that and you are still on the path of motivation and function....good for you! I suppose as far as developing a thicker skin - my guess is that it takes patience and practice. You have to choose to not let the comments or remarks and the outcomes dictate how you are going to feel and behave. Maybe you could practice the scenarios over in your mind ahead of time.... Like do a mental script where the person actually does shun you and give you grief - to which you visualize yourself continuing to be the strong gracious person you are - who has compassion for the one behaving miserably toward you. You understand it is her or his issue - that they are dealing with things in the way that is unique to them ... but you don't buy into their baggage, their rules and their ideas. You then visualize yourself remaining calm and focused and determined.... Set yourself some goals. Work bit by bit toward achieving smaller goals first and build on those successes. Remember the only time we fail is if we quit trying..... to reach our dreams and desires. Most often the only one stopping us from acquiring what we want out of life -- oddly is ourselves. We take our eyes off the prize and give into licking our wounds, blaming, becoming bitter, resentful or unforgiving. However all of this can change. We can choose to be kind to ourselves first and foremost by caring for our health. In all aspects - physical, mental, spiritual, emotional. We can practice confidence & self respect & love. When you work with others that aren't bending things to your way of seeing them - and they aren't doing things as you wish --- it's time to re-evaluate. Maybe another approach would work better, maybe there's a bigger picture, maybe your gifts and talents are best utilized elsewhere. We all have amazing gifts - and a drive to use them to help others deep within....uncovering what we can do -- with special needs - isn't an easy task ... but with perseverance you will find your nitch. You impact people all the day long in important ways that help them.....keep up the good work and stay strong as you are.

Thank you. You words help a lot.That part about staying strong and realizing that the person that I'm talking to has their own baggage is very helpful. And visualizing ahead of time seems like a good idea.I tend to take things personal because I'm am so over sensitive .

Thanks again. I am going to print this out so I can reread it when I want.

[friday7]

susan-

I think you have explained yourself well in this post.

Keep a copy of it as it would make a great letter. If you write instead of phone you can control the amount of anxiety you are able to handle at any one time.

It seems to me that you would function better in the world if you had a reclining wheelchair. That would be a concrete request that the disabled group might be able to help with. With the other situations you could explain that you are trying to get a reclining wheelchair for your neurological condition causing unstable blood pressure (substitute endocrine or whatever for your particular situation) but that in the meantime you may have to lay down or recline periodically in order to stabilize your blood pressure and heart rate before your brain is deprived of oxygen and more symptoms occur. Bring a mat, get a cane or crutch to help you get up and down - that way all you are asking for is a bit of floor space in a pinch.

I know wheelchairs and canes seem like they are used for orthopedic issues but really you need to think of them as mobility aids = these articles can help you get out and move and interact with the public.

I hope something here helps.

Best of luck,

noreen

A never heard of a reclining wheelchair. I do have the type that the legs stay up. I dont' really use it much now. I got it when I first was diagnosed. Back then I needed to have my feet elevated just to go out, so I was able to get the kind of wheelchair that has legs that prop up. It does help a bit because if I were to sit at a desk or something it would at least keep my legs up and reduce symptoms.

But when you say reclining, do you mean that the back would recline as well? That would be great because then all I would need is enough room to put my chair back. I wouldn't have to worry if they had a place to lie down because I would have it with me.

The idea of bringing a mat is a good idea too. I don't even mind laying on the floor when I get the need, but I think that bothers people. They feel funny letting you lay on the floor or something. Or maybe it sounds like an odd request.I think if I had a mat it might make them see it as a medical need. Sounds weird but I think somehow if you have things like a cane or wheelchair I think people respect that you have an issue. So maybe even something as little as a note from a doctor and a mat might make them realize this is a condition that is real.

Thank you for your help.

[issie]

You are a very strong person - having endured all that and you are still on the path of motivation and function....good for you! I suppose as far as developing a thicker skin - my guess is that it takes patience and practice. You have to choose to not let the comments or remarks and the outcomes dictate how you are going to feel and behave. Maybe you could practice the scenarios over in your mind ahead of time.... Like do a mental script where the person actually does shun you and give you grief - to which you visualize yourself continuing to be the strong gracious person you are - who has compassion for the one behaving miserably toward you. You understand it is her or his issue - that they are dealing with things in the way that is unique to them ... but you don't buy into their baggage, their rules and their ideas. You then visualize yourself remaining calm and focused and determined.... Set yourself some goals. Work bit by bit toward achieving smaller goals first and build on those successes. Remember the only time we fail is if we quit trying..... to reach our dreams and desires. Most often the only one stopping us from acquiring what we want out of life -- oddly is ourselves. We take our eyes off the prize and give into licking our wounds, blaming, becoming bitter, resentful or unforgiving. However all of this can change. We can choose to be kind to ourselves first and foremost by caring for our health. In all aspects - physical, mental, spiritual, emotional. We can practice confidence & self respect & love. When you work with others that aren't bending things to your way of seeing them - and they aren't doing things as you wish --- it's time to re-evaluate. Maybe another approach would work better, maybe there's a bigger picture, maybe your gifts and talents are best utilized elsewhere. We all have amazing gifts - and a drive to use them to help others deep within....uncovering what we can do -- with special needs - isn't an easy task ... but with perseverance you will find your nitch. You impact people all the day long in important ways that help them.....keep up the good work and stay strong as you are.

Now what

I too found this beautiful and inspiring. We all need a little reassuarance of our worth. Sometimes, we are our own worst critics. But, if we could remember your words of encouragement and not internalize so much - we'd all be happier. It's hard to be positive in a chronic state of life and we all need reminders. Remembering that we understand our illness (all to well), but others are just ignorant of it and will never REALLY understand because unless they themselves have it -- it's not possible.

[friday7]

Friday7~

I know exactly what you mean, and I would love to volunteer, too. I know also that most places where I would volunteer (similar to a workplace) would need someone they could rely on to be there certain days or times during the week. Anymore, people really count on volunteers, and if we can't make it in, normally they would have to find someone else to replace us. That's why I left my job and why I don't consider myself up to volunteering yet.

And please, no offense, but you may want to change your verbiage from your "list of demands" to sounding a little more willing to work and compromise if possible. If these things are absolutes for you, then it may be hard until you're a little better to find a volunteer position. Perhaps something on the Internet?

Good luck,

Jana

Yeah that's it. It is hard finding the right volunteer job. There are a lot that they want you to go to training for a such.But I think if I look into the NJ volunteer site I might be able to find something, even if it's just doing some filing. I don't really want to be filing but I think if it were in a place that was active and had nice people around, it would be okay because I would like the social interaction. I would really love to find something artistic to volunteer at, but I haven't really seen anything around here that's artistic.

Oh and sorry about the misunderstanding but the part about the list of demands was intended to be a joke. I would only say that here. I would never say that to someone that I was applying for a volunteer job with. But when you write on the internet you can't use your tone of voice or facial expressions to convey that you are just playing around.

Thanks for the support.

[Noreen]

I did a quick search on Amazon for reclining wheelchair when I couldn't find a site that showed a chair in action. http://www.amazon.com/s/ref=nb_sb_ss_c_1_15?url=search-alias%3Dhpc&field-keywords=reclining+wheelchair&sprefix=reclining+wheel

What is interesting is that there are apparently replacable back rests for wheelchairs that allow you to recline - http://www.amazon.com/Reclining-Wheelchair-Backrest-16-19/dp/B000LX1J2O/ref=sr_1_7?ie=UTF8&s=hpc&qid=1283196760&sr=1-7

I never knew that and have found that a problem with my wheelchair.

Here is a picture of a reclining electric wheelchair. http://wwingw.americanwheelchairs.com/specusedpermob.html

I am not recommending any brand here just trying to show options. If you do your research so know the brands and fit you need, keep an eye on Craigslist - you might get lucky.

If money is non-existent there is a site that matches donated items to those in need - http://www.lifenetswheelchairproject.org/pls/htmldb/f?p=224:1:1488785465166878::NO:::

[friday7]

I did a quick search on Amazon for reclining wheelchair when I couldn't find a site that showed a chair in action. http://www.amazon.com/s/ref=nb_sb_ss_c_1_15?url=search-alias%3Dhpc&field-keywords=reclining+wheelchair&sprefix=reclining+wheel

What is interesting is that there are apparently replacable back rests for wheelchairs that allow you to recline - http://www.amazon.com/Reclining-Wheelchair-Backrest-16-19/dp/B000LX1J2O/ref=sr_1_7?ie=UTF8&s=hpc&qid=1283196760&sr=1-7

I never knew that and have found that a problem with my wheelchair.

Here is a picture of a reclining electric wheelchair. http://wwingw.americanwheelchairs.com/specusedpermob.html

I am not recommending any brand here just trying to show options. If you do your research so know the brands and fit you need, keep an eye on Craigslist - you might get lucky.

If money is non-existent there is a site that matches donated items to those in need - http://www.lifenetswheelchairproject.org/pls/htmldb/f?p=224:1:1488785465166878::NO:::

Thanks so much!! I couldn't get the link http://wwingw.americanwheelchairs.com/specusedpermob.html It kept saying the domain was wrong?

But I did see the rest.. This is so great. If I could get one it might really help me be able to get out and volunteer.

The one at this page:

http://www.amazon.com/Reclining-Wheelchair-Backrest-16-19/dp/B000LX1J2O/ref=sr_1_7?ie=UTF8&s=hpc&qid=1283196760&sr=1-7

says "Economically converts any wheelchair to a recliner." Is that saying you can attach it to a wheelchair that doesn't already have a reclining back? It really doesn't explain it further,so I don't know if I'm misunderstanding this.

I can't afford to get the chair myself, and I don't have very good insurance. I have Medicaid. But they were good at getting me the other wheelchair and that was probably more than five years back. So even though I still have that one they might be wiling to get me this since my needs have changed. Especially since the prices of the ones you showed me aren't too bad. If not I can try that site you sent.It'd make me feel much safer to be able to recline if I needed to..not having to wait for someone else to allow me to lie down.

You've given me renewed hope, that it can be possible for me to be out in the world again. Thanks so much for your help!

[Noreen]

the only thought I had as to why the link is not showing is that I did a search on the site and sent that.

Here is the direct link - http://www.americanwheelchairs.com/links.shtml

Look on the left for links to wheelchair and then look for reclining wheelchair.

hope something works out

[Noreen]

the only thought I had as to why the link is not showing is that I did a search on the site and sent that.

Here is the direct link - http://www.americanwheelchairs.com/links.shtml

Look on the left for links to wheelchair and then look for reclining wheelchair.

hope something works out

[jem15]

That's great that you're trying to volunteer your time somewhere. Don't let those negative environments discourage you. There are sooo many volunteer opportunities out there, many different types of work, and I really think you can find something that fits your health needs. It may be doing some paperwork or something like that for a non-profit organization. Something less physically intense right now. And you just have to screen the place before hand. When you call say youre looking to volunteer some time, but due to medical conditions, you're looking for something like you stated, flexible, when you don't have to be somewhere or do something at a particular time, and tell them how many hours a week or month, etc. you are looking to commit. There are also alot of organizations that you can contact online, and even some volunteer work you can do online, depending on the agency.

I actually am currently on disability, not well enough to even work part time yet or drive. And a young adult cancer agency had asked me if I had wanted to help with an event they were throwing. That was physically too much for me, but i asked if there was anything I could do from home, and told them depending on how i feel, i might not always be helpful certain weeks. But they sent me up with a simple task, once a week, reading thru a bunch of articles that get sent to them, and picking out the good ones for them to see. It sounds not that important, but they said it's an important task that often gets put to the side, so they're happy to have someone do it now. My point in sharing that is maybe a place that has something like that, some paperwork or project that's been put on the backburner cause they dont have time to do it, so having someone help with that is wanted, and it's not anything urgent or requires a set day of work.

You mentioned NJ. I don't know if you're close to Bergen County at all. But there's a number for a Volunteer Center, I think where you call up and they can tell you different volunteer opportunities. If I'm wrong, I'm sorry,I have like 100 agency numbers in my book, cause i had to look for a lot of social work resources for myself. the number is 201-489-9454, and maybe they know of another group that's in your county if you're not close to Bergen. or maybe they can tell you how to find more opportunities. Also, the Division of Vocational & Rehabilitation services is an agency that helps people w/disabilities find jobs, it's meant to get people working, but you might call and see if they'd help you find a volunteer position to suit your health needs. ADA is the law that protects people with disabilities from job discrimination, but not sure if that applies to volunteer work. And you have to meet ADA's definition of disability.

Something else you might be able to do on a drop in basis is hanging out with senior citizens at a local nursing home. Other big non profits, like the American Cancer Society, have a bunch of different volunteer opportunities and if you call and tell them you want to help, they might give you the local # to your branch, and see if they need office or phone help, or whatever. Look online at some of the nonprofit websites and there's often a link for volunteer opportunities. Good luck and try not to let the negative people bother you, you don't want to volunteer in an environment like that anyway!

[issie]

Something I did when I lived in CO. I LOVE making jewlry and needed beads and jewlry parts. I volunteered at the Humane Thrift Store and priced their jewlry. When anything came in broken or beads were loose - they let me put them all in a bag and the manager priced the bag and I got alot of stuff to support my creative habit. I could go in whenever I wanted and work for however long I wanted. I was in a room by myself and able to sit down. They knew I had issues and made me very comfortable and I really felt appreciated. Since I'm real familiar with jewlry and gems it was my forta and very enjoyable. They even gave me a recommendation letter in case I wanted to volunteer again where I moved. Since it has been a long time since I've held a regular job - this will come in handy.

They would have let me work with the animals, but there would have been alot of up and down and that wasn't do-able, but the thrift store was. I really miss my time working there.

[potsgirl]

Let me know if you find something. I personally would love to work/volunteer in a museum since my background is cultural anthropology. Let's both find a creative job involving something artistic and/or cultural!

[Guest tearose]

Another thank you to now what for putting into words that which right now I too believe but could not express!

I too struggle with disability and yet the yearning to do for others.

What I now do is volunteer as a CERT "emergency preparedness" educator. (community emergency response team)

As I am able and around and about if the appropriate opportunity comes up in conversation with someone I always have the opportunity to share the importance of "Planing & Preparing for emergencies" and I carry small pamphlets to give them if they are interested.

Since I was always carrying water, food and POTS emergency supplies this was a very natural and easy thing to volunteer for!!!!

I still get lots of both spoken and unspoken pressure and judgement from those who want me to do more but I am doing all I can.

What matters is that we are trying to make a positive difference in the world. It may be just one small deed or one hour but it does add up!

[scarfgirl]

HI.I've been feeling for a while that I would like to get a volunteer job, but I am afraid because I have such unpredictable symptoms and people have a hard time understanding that.

I have never had a time where it was dangerous for my health to be working/volunteering.So it's not like should feel responsible for putting my health in jeopardy. But I do have limitations.

For instance.Well here's my list of demands.LOL

I need to be able to come and go.I can't have a day where it is absolutely necessary for me to be there. I have to be able to work for short periods of time and have breaks when I need them. I have to have a place to lie down if I need to.

This is the one that I worry about.But really it's not that much of an inconvenience.For instance once when I was in a partial hospital program, there were couches in one area, and in between groups I would recline for ten minutes.It got me through the day,and didn't hurt anyone else. After lunch I was able to lay down in an empty room, on the floor but I didn't mind..It also got me through the day.

The thing is. I had a couple of experiences with people not understanding this and making me feel like there is not place in the world for me unless I was completely well. It sounds like a distorted thought to me, but yet after the experiences I've had I kind of believe it.

One time I was attending that same partial hospital program just a a different year. I got sick, felt faint and wanted to lie on the couch. They refused and said it wasn't possible because there were people that were depressed and that they would then want to lie down on the couches if they saw me doing it. It didn't matter that I was sick, all that mattered were the rules. I understand the rules but if someone is sick you need to bend the rules. But no. So, I had to sit in a chair, and wait for my Mom to come pick me up. So while sat there in stead of lying I get worse and worse..By the time my Mom came she had to take me out in a wheelchair. I spends the next few days feeling horribly sick.

This could have all been avoided by letting me lay down on the couch. It made me feel horrible. Not physically but emotionally. Here was a place I was supposed to be getting cared for in and they were ignoring my needs.The only one that really helped me was another patient. She stayed with me and got me water. The staff just let me sit there.

It was a horrible experience, because it felt as if they were saying we don't care.

When I brought this up to my therapist there. She kept explaining why they did what they did and didn't take my said at all. I never felt safe there again.

I guess that experience has never left me.

But a few years later I was really depressed again. I needed help and tried to apply at the partial hospital again. Due to the fact that I couldn't even travel long enough to get to the one I went to before.I applied at the same hospital only a different branch, near me. The person on the phone was explaining how they couldn't accept me because I couldn't come all five days. I explained to her that I had attended before and that they let me come for three days. But then she told me they couldn't help me and I should go somewhere else. I explained that there was no where else for me to go. She kept telling me how it wouldn't work and was developing a tone. I told was trying to tell her how they allowed me to come to the other branch of the same hospital for five days and then cut it down to three after a week..but she didn't want to hear it, and was becoming even more abrupt. So I got upset at her..I didn't yell or call her names, I just kept asking her where I was supposed to go and trying to get her to understand that I needed help..and she hung up the phone!Now keep in mind this is a place that deals with people on the verge of suicide! I mean, could you imagine?! I couldn't believe it. So, I did something I would not normally do, I called her supervisor and told her what happened. She was very good. She apologized. And offered to let me come and basically did what the first girl should have done.

Only problem was after that, I again never really felt safe there.I mean that's all you really want when your out there.Just the knowledge that if you feel sick someone will be compassionate and understanding. Also because of my nervousness about not feeling cared for, I kept thinking 'what if I get sick, they wont' understand, They will throw me out', and stuff like that. Anyway, the anxiety produced more POTS symptoms of course and I wasn't able to attend. The thing is If I had felt welcomed right from the beginning this probably wouldn't have happened.

I still have these experiences in the back of my mind and I feel that no one wants me because I'm not normal. If I was normal I wouldn't have needed these people in the first place. I don't feel that anyone would understand. And all I'm asking for for really is understanding.I'm not asking for them to build a ramp for me or add parking spaces.Nothing major that comes out of there pockets. Just a place to recline if I feel the need to. I'm just so afraid to look for something because if someone says no, I feel that will add to the rejection from the world I already feel.

I know there are kind and understanding people out there, but I have trouble believing that. AND i'm afraid of running into careless lunatics like that last woman while I'm trying to find help.

I have thought about going to a Disabled person's program and asking for help. I have been to a support group run by them once, and they were very nice. I thought maybe they could represent me and explain to someone my conditions. I see they get people jobs that have certain conditions that the employer is willing to accommodate for, so I figure maybe they could do the same for me with a volunteer situation. But again I am afraid..I am afraid if they say no I will feel that rejection from the world. I know I have a disability but because I am not mentally impaired I fear that I will not be treated with the same rights. It's kind of like, because I look and seem normal I feel afraid that they wont' see me as disabled and feel that I should be able to do these things on my own. And I'm not doing so well on my own. It would really help to have someone behind me.Sort of an advocate.

I did call this place and leave a message, but they haven't called me back as of yet..And I guess I'm afraid if they do call..What do I say? How do I ask for help? How do I know what I'm untitled to as far as their help? And most important, how do I not get crushed if I wind up talking to someone that's not very helpful or concerned about me or worst, another idiot like the last time I tried to get help.

Well, I'd appreciate any advice.

If anyone has been in a similar situation..or has gotten help on the job. Or if anyone's ever felt shunned form the world of "the Normals", I"d appreciate your advice.

Susan

Asking for help is the hardest part. I'm looking both for volunteer work and/or paying job right now. Sometimes people are helpful, sometimes I'm treated like I'm trying to scam the system (why would someone applying for a job be a scammer? I don't get that). Sometimes people don't call back, or they pass the buck by giving you someone else's number, who gives you another number, etc.

The Disabled person's program is a good idea. Heck, I'd contact any Disability Awareness/Assistance type places and see if they could use. Also, talk to your therapist. She might can use your help, or know of a place that does.

[friday7]

Something I did when I lived in CO. I LOVE making jewlry and needed beads and jewlry parts. I volunteered at the Humane Thrift Store and priced their jewlry. When anything came in broken or beads were loose - they let me put them all in a bag and the manager priced the bag and I got alot of stuff to support my creative habit. I could go in whenever I wanted and work for however long I wanted. I was in a room by myself and able to sit down. They knew I had issues and made me very comfortable and I really felt appreciated. Since I'm real familiar with jewlry and gems it was my forta and very enjoyable. They even gave me a recommendation letter in case I wanted to volunteer again where I moved. Since it has been a long time since I've held a regular job - this will come in handy.

They would have let me work with the animals, but there would have been alot of up and down and that wasn't do-able, but the thrift store was. I really miss my time working there.

That's sounds really great. I would love to find something like that. I guess I just gotta keep looking.

I do take care of animals once a week at Petco. The cats there are not sold from the store but they are a volunteer group that Petco lets use their cages. That's not to hard because it's only cleaning out a few cat boxes. Maybe they have something like that near you. I actually wish I could do that more often but they have enough people to take care of it.Plus I'd really like something to get me around people more.

Let me know if you find something. I personally would love to work/volunteer in a museum since my background is cultural anthropology. Let's both find a creative job involving something artistic and/or cultural!

That would be great. I've only come across clerical kinds of jobs..Well those are the ones I can do..There are places I might like to volunteer but it involves too much. I'm not a real social butterfly either.which is a shame because they have a lot of opportunities for people like that. Like mentoring a kid, or a companion needed for seniors.

AS I mentioned I was looking at this site-

http://www.volunteernewjersey.org/vnj/

They have a lot of opportunities there..I found some I would have like to try but I can't drive that far.

If you are in Jersey, I found a lot under museums-

http://volunteer.truist.com/volunteernewjersey/volunteer/search-2.aspx?keyword=museum&__form_op__=Go!

I was hoping to find a small art school or organization near me that might need help but nothing so far. There is a place that's about 40 minutes from me but that's kind of hard since most days I can't drive and my Mom would have to bring me back and forth.

I know what you mean though it would just be nice to be in a place where creativity was taking place.

Well I'm gonna keep looking because it does have a lot of volunteer jobs listed and I haven't gotten through them all.

[friday7]

That's great that you're trying to volunteer your time somewhere. Don't let those negative environments discourage you. There are sooo many volunteer opportunities out there, many different types of work, and I really think you can find something that fits your health needs. It may be doing some paperwork or something like that for a non-profit organization. Something less physically intense right now. And you just have to screen the place before hand. When you call say youre looking to volunteer some time, but due to medical conditions, you're looking for something like you stated, flexible, when you don't have to be somewhere or do something at a particular time, and tell them how many hours a week or month, etc. you are looking to commit. There are also alot of organizations that you can contact online, and even some volunteer work you can do online, depending on the agency.

I actually am currently on disability, not well enough to even work part time yet or drive. And a young adult cancer agency had asked me if I had wanted to help with an event they were throwing. That was physically too much for me, but i asked if there was anything I could do from home, and told them depending on how i feel, i might not always be helpful certain weeks. But they sent me up with a simple task, once a week, reading thru a bunch of articles that get sent to them, and picking out the good ones for them to see. It sounds not that important, but they said it's an important task that often gets put to the side, so they're happy to have someone do it now. My point in sharing that is maybe a place that has something like that, some paperwork or project that's been put on the backburner cause they dont have time to do it, so having someone help with that is wanted, and it's not anything urgent or requires a set day of work.

You mentioned NJ. I don't know if you're close to Bergen County at all. But there's a number for a Volunteer Center, I think where you call up and they can tell you different volunteer opportunities. If I'm wrong, I'm sorry,I have like 100 agency numbers in my book, cause i had to look for a lot of social work resources for myself. the number is 201-489-9454, and maybe they know of another group that's in your county if you're not close to Bergen. or maybe they can tell you how to find more opportunities. Also, the Division of Vocational & Rehabilitation services is an agency that helps people w/disabilities find jobs, it's meant to get people working, but you might call and see if they'd help you find a volunteer position to suit your health needs. ADA is the law that protects people with disabilities from job discrimination, but not sure if that applies to volunteer work. And you have to meet ADA's definition of disability.

Something else you might be able to do on a drop in basis is hanging out with senior citizens at a local nursing home. Other big non profits, like the American Cancer Society, have a bunch of different volunteer opportunities and if you call and tell them you want to help, they might give you the local # to your branch, and see if they need office or phone help, or whatever. Look online at some of the nonprofit websites and there's often a link for volunteer opportunities. Good luck and try not to let the negative people bother you, you don't want to volunteer in an environment like that anyway!

......That's great that you're trying to volunteer your time somewhere. Don't let those negative environments discourage you. There are sooo many volunteer opportunities out there, many different types of work, and I really think you can find something that fits your health needs. It may be doing some paperwork or something like that for a non-profit organization. Something less physically intense right now. And you just have to screen the place before hand. When you call say youre looking to volunteer some time, but due to medical conditions, you're looking for something like you stated, flexible, when you don't have to be somewhere or do something at a particular time, and tell them how many hours a week or month, etc. you are looking to commit. There are also alot of organizations that you can contact online, and even some volunteer work you can do online, depending on the agency.......

Thanks so much for the support.

I don't live near Bergen County but I'll give the number a try and maybe they have something near me. Yeah that's true if the people aren't going to be understanding then I dont want to work there anyway.

I found this site that you can look up volunteer jobs near you.

http://www.volunteernewjersey.org/vnj/

I haven't found anything that is custom made for me .But there are a few I might try and reply to.

thanks for your help.

[friday7]

Another thank you to now what for putting into words that which right now I too believe but could not express!

I too struggle with disability and yet the yearning to do for others.

What I now do is volunteer as a CERT "emergency preparedness" educator. (community emergency response team)

As I am able and around and about if the appropriate opportunity comes up in conversation with someone I always have the opportunity to share the importance of "Planing & Preparing for emergencies" and I carry small pamphlets to give them if they are interested.

Since I was always carrying water, food and POTS emergency supplies this was a very natural and easy thing to volunteer for!!!!

I still get lots of both spoken and unspoken pressure and judgement from those who want me to do more but I am doing all I can.

What matters is that we are trying to make a positive difference in the world. It may be just one small deed or one hour but it does add up!

thank you.

It's good to be able to come here and get this support..because like you said, you do feel unspoken (and sometimes spoken) judgment and pressure from others. I guess we have to learn to ignore that somehow. Which is not easy.

It's great that you found something that you can do to help.