Need support still
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Thread Starter
Join Date: Nov 2016
Location: Maryland
Posts: 379
Dandylion- Thank you for all of the good advice! I am not good at asking for help. And I don't look sick. I have systemic scleroderma and sjogrens and all the damage is internal. it is hard cause people don't get it. I have gone to see the EAP therapist at my job but she didn't help connect me to social services. I will try the crisis center or family justice center again.
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Join Date: Aug 2011
Posts: 16,246
OT.....it is true that every effort does not, necessariy, bear fruit.....this is where perseverance comes in....the determination to keep turning over every stone!
I am familiar with your diseases and I totally "get it".....it is harder when a person doesn't look sick....
If I were you, I would add the national organizations for those diseases and for autoimmune diseases and ask them for links and referrals for help....
I would also contact the office or your local House of Representatives elected member....their staff will pull out a lot of stops to help a constituent.....Just ask them "Where can I get assistance?"......
I would also call the local Catholic Charities and ask what they have to offer you...
Once you get started....one contact will lead you to another contact...which will lead you to another contact....It is sort of like pulling a string on a sweater....lol....
Google...google...google....
It is amazing how much help there really is, out in the world...it is just that most people don't know that it exists, or where to find it!
So many of us are taught that it is a weakness to ask for help....I, my self, was raised in such a culture....sigh...
That is such a wrong message!!!! We all need help at one time or another.... and it is intelligent and smart to a sk for it when we need it....
We are all interdependent....none of us is an island....
Start with your baby steps and pray for perseverance......
As long as you don't give up, you will succeed......
I am familiar with your diseases and I totally "get it".....it is harder when a person doesn't look sick....
If I were you, I would add the national organizations for those diseases and for autoimmune diseases and ask them for links and referrals for help....
I would also contact the office or your local House of Representatives elected member....their staff will pull out a lot of stops to help a constituent.....Just ask them "Where can I get assistance?"......
I would also call the local Catholic Charities and ask what they have to offer you...
Once you get started....one contact will lead you to another contact...which will lead you to another contact....It is sort of like pulling a string on a sweater....lol....
Google...google...google....
It is amazing how much help there really is, out in the world...it is just that most people don't know that it exists, or where to find it!
So many of us are taught that it is a weakness to ask for help....I, my self, was raised in such a culture....sigh...
That is such a wrong message!!!! We all need help at one time or another.... and it is intelligent and smart to a sk for it when we need it....
We are all interdependent....none of us is an island....
Start with your baby steps and pray for perseverance......
As long as you don't give up, you will succeed......
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Join Date: Aug 2012
Location: Chicago
Posts: 5,453
OT, I know what you mean regarding invisible illnesses. I suffer from regular migraines and have dealt with a lot of ignorance and judgment from people who cannot possibly understand how deblitating it can be, and who try to minimize my situation because it is inconvenient for them or too difficult for them to understand.
I have really had to learn to be my own best advocate. I no longer allow people to tell me that what I am feeling is not what I am feeling. I no longer allow my GP to minimize what I deal with on a monthly basis. When we talk about solutions for management of symptoms, I don't let the conversation to end until we have decided what's next, or until all of my questions about potential treatments are answered.
But in some ways, dealing with others is the easier part, because I get stronger with practice. The harder part has been accepting that I need to make changes to my own life in order to manage this chronic condition. In many cases that means my life doesn't always look like I hoped it would.
I had to learn to prioritize. I have to get to bed no later than 10:30 every night. No exceptions. I have to eat regular, healthy meals, and always need to have water and good snacks on hand to manage my body's needs. In addition to my full time day job that supports my household, I am an actor, and I've had to limit the number of shows I can do each year, and I have had to refuse auditions for shows that take place too far from my home because it would mean getting home from rehearsals and performances after 11 pm. I have to limit the number of commitments I make each week and I have to be willing to say no or change my mind when I realize that I have gone too far.
I have had to ask for help and understanding, and to overcome my own guilt and shame about a condition that isn't my fault, but sometimes forces me to have to disappoint others' expectations of me. I have had to educate people closest to me about migraines so they can in turn provide support and understanding.
I have had to let people go from my circle who have proven unable to be supportive, or who drain me in any vital way--physically, mentally, emotionally.
This is a hard process and I have felt many disappointments along the way. And I am intensely grateful I started it when I did because now I realize there is tremendous power in taking care of myself. I am a better employee, friend and partner now because I am not constantly trying to compensate for my condition. I am also better at identifying people and situations that will drain me rather than fill me up, and I am guilt-free over avoiding those situations and people.
I get that you feel overwhelmed and hopeless right now. I am here to tell you that the positive steps you take add up. But also, the negative steps you DON'T take add up too.
I have really had to learn to be my own best advocate. I no longer allow people to tell me that what I am feeling is not what I am feeling. I no longer allow my GP to minimize what I deal with on a monthly basis. When we talk about solutions for management of symptoms, I don't let the conversation to end until we have decided what's next, or until all of my questions about potential treatments are answered.
But in some ways, dealing with others is the easier part, because I get stronger with practice. The harder part has been accepting that I need to make changes to my own life in order to manage this chronic condition. In many cases that means my life doesn't always look like I hoped it would.
I had to learn to prioritize. I have to get to bed no later than 10:30 every night. No exceptions. I have to eat regular, healthy meals, and always need to have water and good snacks on hand to manage my body's needs. In addition to my full time day job that supports my household, I am an actor, and I've had to limit the number of shows I can do each year, and I have had to refuse auditions for shows that take place too far from my home because it would mean getting home from rehearsals and performances after 11 pm. I have to limit the number of commitments I make each week and I have to be willing to say no or change my mind when I realize that I have gone too far.
I have had to ask for help and understanding, and to overcome my own guilt and shame about a condition that isn't my fault, but sometimes forces me to have to disappoint others' expectations of me. I have had to educate people closest to me about migraines so they can in turn provide support and understanding.
I have had to let people go from my circle who have proven unable to be supportive, or who drain me in any vital way--physically, mentally, emotionally.
This is a hard process and I have felt many disappointments along the way. And I am intensely grateful I started it when I did because now I realize there is tremendous power in taking care of myself. I am a better employee, friend and partner now because I am not constantly trying to compensate for my condition. I am also better at identifying people and situations that will drain me rather than fill me up, and I am guilt-free over avoiding those situations and people.
I get that you feel overwhelmed and hopeless right now. I am here to tell you that the positive steps you take add up. But also, the negative steps you DON'T take add up too.
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Join Date: Dec 2008
Posts: 10,944
Yeah, I get having an illness that no one sees. I am diabetic, insulin dependent. I wear an insulin pump that frequently gets mistaken for a pager. I'm sorry you have to deal with such serious health issues. I know it makes everything that much harder.
I love the ideas from Dandylion and SparkleKitty! 'Cause I don't have much money right now, either. Is it possible for you to, at some point, move to a smaller and more manageable place? It is a decision I may have to make at some point, too. But am reluctant to do so. It sounds as though you like your home and don't want to have to make that decision, either.
I hate to ask for help, too, but I have had to do it. I have asked friends to help me clean out the attic, to help me work on a front door. I have had friends offer help with whatever I may need--but I have hesitated to ask probably for 2 reasons. 1) I hate to be a burden on anyone, and even when people offer, I feel like I am being burdensome by taking them up on the offer; and 2) It feels to me like I am failing because I can't get it all done myself. I feel like I should be capable, competent, and strong enough to handle it all. I feel like I should be able to be in control of my world (codie much?).
Please keep reaching out, please accept help when it is offered, please keep pursuing every option available. As a single Mom, you deserve all the help you can get!
I love the ideas from Dandylion and SparkleKitty! 'Cause I don't have much money right now, either. Is it possible for you to, at some point, move to a smaller and more manageable place? It is a decision I may have to make at some point, too. But am reluctant to do so. It sounds as though you like your home and don't want to have to make that decision, either.
I hate to ask for help, too, but I have had to do it. I have asked friends to help me clean out the attic, to help me work on a front door. I have had friends offer help with whatever I may need--but I have hesitated to ask probably for 2 reasons. 1) I hate to be a burden on anyone, and even when people offer, I feel like I am being burdensome by taking them up on the offer; and 2) It feels to me like I am failing because I can't get it all done myself. I feel like I should be capable, competent, and strong enough to handle it all. I feel like I should be able to be in control of my world (codie much?).
Please keep reaching out, please accept help when it is offered, please keep pursuing every option available. As a single Mom, you deserve all the help you can get!
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Join Date: Jul 2004
Location: Starting over all over again
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Your attention please.
The purpose of SR is the sharing of personal experience, strength and hope. Not the giving of advice. Only licensed professionals such as doctors, therapists, nurses and lawyers can give advice. See this sticky:
http://www.soberrecovery.com/forums/...ease-read.html
If your post contains the pronouns "you" or "we" then your post is giving advice. It is really that simple.
Advice from someone who lacks the training, education or licencse to do so is just a politically correct term for "uninformed opinion" or "unsolicited admonition"
The only content a post should have is along the lines "I have experienced that..." or "This is what I did to overcome that..."
To date there are 1047 posts in this entire thread trail ( including parts 1, 2, and 3) of which I have found a little over 2 dozen that are actually constructive sharing of personal experience. There are only about 2 dozen people posting. Which means that, on average, you have repeated yourself 43 times.
What do they say about people who repeat the same behavior over and over again expecting different results?
When you have over 1000 posts that repeat the exact same opinions it is called harrasment.
I am going to remove all posts that do not follow SR rules. If you see that your post disapeared it is because it was clearly an opinion, and harrasment.
Mike
Moderator, SR
The purpose of SR is the sharing of personal experience, strength and hope. Not the giving of advice. Only licensed professionals such as doctors, therapists, nurses and lawyers can give advice. See this sticky:
http://www.soberrecovery.com/forums/...ease-read.html
If your post contains the pronouns "you" or "we" then your post is giving advice. It is really that simple.
Advice from someone who lacks the training, education or licencse to do so is just a politically correct term for "uninformed opinion" or "unsolicited admonition"
The only content a post should have is along the lines "I have experienced that..." or "This is what I did to overcome that..."
To date there are 1047 posts in this entire thread trail ( including parts 1, 2, and 3) of which I have found a little over 2 dozen that are actually constructive sharing of personal experience. There are only about 2 dozen people posting. Which means that, on average, you have repeated yourself 43 times.
What do they say about people who repeat the same behavior over and over again expecting different results?
When you have over 1000 posts that repeat the exact same opinions it is called harrasment.
I am going to remove all posts that do not follow SR rules. If you see that your post disapeared it is because it was clearly an opinion, and harrasment.
Mike
Moderator, SR
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Join Date: Mar 2013
Location: Midwest
Posts: 11,481
Originally Posted by DesertEyes 
What do they say about people who repeat the same behavior over and over again expecting different results?
Loud and clear, the OP’s actions are telling me she is not ready or willing to actually change. And I’m done repeating myself.
Thanks, Mike, for the reminder that it's time to "practice what I preach" and allow OT the gift of finding her own way when she's ready, however long that may take. She has the info she needs; I cannot make her act on it any more than I could get XAH sober.
(bowing out)
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Join Date: Apr 2010
Location: Alaska
Posts: 2,913
OT4Kids, I'm worried for you. This quote, especially:
because I hear so much of of the hopelessness I felt when I had reached a point where I started to make plans to end my life. I really hope I'm reading too much into your post. But... well, sending hugs, if OK.
Have you discussed this feeling of hopelessness with your physician? I don't know anything about scleroderma and sjogrens or the treatments, but maybe there's a way to make adjustments to help offset some of the fatigue, which I would suspect exacerbates the hopelessness? I hope that your work comes to understand what you're dealing with and makes some accommodations to help.
Originally Posted by OT4Kids
I truly feel hopeless. If I didn't have family I would simply choose to end this pain.
Have you discussed this feeling of hopelessness with your physician? I don't know anything about scleroderma and sjogrens or the treatments, but maybe there's a way to make adjustments to help offset some of the fatigue, which I would suspect exacerbates the hopelessness? I hope that your work comes to understand what you're dealing with and makes some accommodations to help.
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Join Date: Aug 2011
Location: Pa
Posts: 4,872
OT,
I know you need people to talk to, I did also. I was embarrassed by how stuck I felt, but I did feel stuck. I wasn't working at the time, I stopped working right before I was diagnosed with 2 cancers, plus a DVT. After I went through all of that, it was only when my ex was hating me that he demanded I get a job, when he wasn't "crazy", he didn't want me to work. It was just horrible, and the stress of everything was really bad, and I started to develop other ailments. Stress really does a job on your body.
What I'm saying is that even though our situations aren't identical, I can really relate.
Are you stressing about things like, you don't know if you can continue working so that you can afford your new place, since you bought it with an understanding that he would be helping with the bills?
I just want to again say that stress escalates any condition that you have. After I left my ex, I felt so much better.
I don't know what you are hanging onto and why? He comes home once in awhile, he then "runs away", comes back, blames you for everything, doesn't help with any bills, you are paying for car towing, credit card charges.
Can you tell me what you are really frightened of?
((((((((((((((hugs))))))))))))))
amy
I know you need people to talk to, I did also. I was embarrassed by how stuck I felt, but I did feel stuck. I wasn't working at the time, I stopped working right before I was diagnosed with 2 cancers, plus a DVT. After I went through all of that, it was only when my ex was hating me that he demanded I get a job, when he wasn't "crazy", he didn't want me to work. It was just horrible, and the stress of everything was really bad, and I started to develop other ailments. Stress really does a job on your body.
What I'm saying is that even though our situations aren't identical, I can really relate.
Are you stressing about things like, you don't know if you can continue working so that you can afford your new place, since you bought it with an understanding that he would be helping with the bills?
I just want to again say that stress escalates any condition that you have. After I left my ex, I felt so much better.
I don't know what you are hanging onto and why? He comes home once in awhile, he then "runs away", comes back, blames you for everything, doesn't help with any bills, you are paying for car towing, credit card charges.
Can you tell me what you are really frightened of?
((((((((((((((hugs))))))))))))))
amy
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Join Date: Aug 2015
Location: Western US
Posts: 9,048
Hey OT, I hope you are hanging tough with whatever is going on.
It took me a long, long, long time to accept the level of pain and the length of time I would have to endure it before I made the no contact stick. I kept not believing that it would really hurt that badly for that long. Once I did I but my head down and did an emotional endurance marathon that I have never forgotten.
May many angels bombard you!
It took me a long, long, long time to accept the level of pain and the length of time I would have to endure it before I made the no contact stick. I kept not believing that it would really hurt that badly for that long. Once I did I but my head down and did an emotional endurance marathon that I have never forgotten.
May many angels bombard you!
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Thread Starter
Join Date: Nov 2016
Location: Maryland
Posts: 379
Thank you all for your support. I am really having a hard time...feeling like I can't go on anymore. I am fighting that feeling for the sake of my kids, family and friends.
Sending healing thoughts and prayers to all of you, and hoping you will do the same for me.
Take care!
Sending healing thoughts and prayers to all of you, and hoping you will do the same for me.
Take care!
Member
Join Date: May 2010
Location: USA
Posts: 13,560
You are worth the fight! I know you are overwhelmed, but you have a life. You have children. You can have happiness as well. You can go on because you are worth every ounce of effort it takes.
We are behind you! Also sending you prayers and good thoughts!
We are behind you! Also sending you prayers and good thoughts!
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Join Date: Jul 2010
Location: South Jersey
Posts: 16,633
You CAN go on--just not the way you've BEEN going on. The way it's been has taken a great toll on you. Sometimes sheer exhaustion is your best friend. It's your body/mind telling you ENOUGH.
This is the time for extreme prioritization. I did that when I had my surgery. I got everything in place that I needed to, and then just plain put myself first for a couple of weeks. I asked for help from friends and family. I let people do things for me. My sweet neighbor came over yesterday to collect my bag of trash and put the already-full trash can out for collection this morning. They stop by every day to see if I need anything. I was debating working part time this week, but the disability issues were complicated enough I decided, "screw it, I'm taking the time I need till I feel completely up to working." Just sent the form to my doc to certify my disability through this week (my original projected return to work was determined before I had to be re-admitted to the hospital for several more days with an extremely uncomfortable complication). I need the time, I'm entitled to it, so I'm taking it.
You have to do something similar. Make yourself number one for a while.
This is the time for extreme prioritization. I did that when I had my surgery. I got everything in place that I needed to, and then just plain put myself first for a couple of weeks. I asked for help from friends and family. I let people do things for me. My sweet neighbor came over yesterday to collect my bag of trash and put the already-full trash can out for collection this morning. They stop by every day to see if I need anything. I was debating working part time this week, but the disability issues were complicated enough I decided, "screw it, I'm taking the time I need till I feel completely up to working." Just sent the form to my doc to certify my disability through this week (my original projected return to work was determined before I had to be re-admitted to the hospital for several more days with an extremely uncomfortable complication). I need the time, I'm entitled to it, so I'm taking it.
You have to do something similar. Make yourself number one for a while.
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Join Date: Mar 2016
Posts: 844
Sending warm wishes to you during this very hard time.
I bet your kids have a lot going on this summer. I know you are short on time but was wondering if you have a hobby like scrapbooking with photos from their adventures? Ive just recently started because we are expecting our first child. I was amazed at what they have available at the craft stores these days for such a thing.
I bet your kids have a lot going on this summer. I know you are short on time but was wondering if you have a hobby like scrapbooking with photos from their adventures? Ive just recently started because we are expecting our first child. I was amazed at what they have available at the craft stores these days for such a thing.
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Join Date: Jan 2015
Location: former texan
Posts: 216
[QUOTE=OT4Kids;6537927]I want someone to take this pain away. I want consistent help in my every day life for the things I cannot manage.
*** warning death mentioned***
This resonates. I just want someone to take the pain away. I think we have all said that at some point. For me it was the death of some dear family members, when I honestly believed that active grieving never would stop.
I did end up seeing a therapist after the death of my dd. The pain and the grieving were non stop, day and night, and long after her passing. I found that people expected me to move on and buck up in what felt a strangely fast period of time. While grieving a loved one and going through your experience are 2 very different things, there is a common thread. Through that entire experience I was desperate for someone, anyone to take all of that pain off of me. To lead me to wake up with a clear mind, an open heart, weight off my shoulders. But as we all know in such matters, we must grieve. We must do what we need to do.
In my case I could not find a way to do this normally, and really did need the services of a trained psychologist. While I still mourn and grieve the loss of my daughter, I no longer "live" in the grief and the loss.
Make sense?
I well understand the turmoil of being in a storm that I can't rescue myself from, and there are no rescuers on deck so to speak. Alcoholism was another storm I threw myself into that I felt I could not save myself from either.
In the end there was only one answer, as hard and as difficult as it was.
It comes from a quote that I will attribute to Jack Benny (comedy routine) but I may be wrong as I get my older comedians mixed up.
"If you ever need a helping hand, you'll find one at the end of your arm".
I hated that statement for a very long time. Who was I? How was I to help me? Just those questions alone caused me paralysis forever.
What I can say about my situation(s) is that I just took a step. One step. Then when I could I took another. It took a very long time, but one day I realized that I had 'walked' much further away from the situation than I was giving myself credit for. No change in a single day, not in a month. But tiny steps.
I hate that you feel this way. I hope you are able to find ways to ease your pain (physical and emotional). You've been given much advice so I don't feel I have anything wise left to add - other than to enquire as to whether you have looked into disability at work to give yourself much needed time to rest and heal?
*** warning death mentioned***
This resonates. I just want someone to take the pain away. I think we have all said that at some point. For me it was the death of some dear family members, when I honestly believed that active grieving never would stop.
I did end up seeing a therapist after the death of my dd. The pain and the grieving were non stop, day and night, and long after her passing. I found that people expected me to move on and buck up in what felt a strangely fast period of time. While grieving a loved one and going through your experience are 2 very different things, there is a common thread. Through that entire experience I was desperate for someone, anyone to take all of that pain off of me. To lead me to wake up with a clear mind, an open heart, weight off my shoulders. But as we all know in such matters, we must grieve. We must do what we need to do.
In my case I could not find a way to do this normally, and really did need the services of a trained psychologist. While I still mourn and grieve the loss of my daughter, I no longer "live" in the grief and the loss.
Make sense?
I well understand the turmoil of being in a storm that I can't rescue myself from, and there are no rescuers on deck so to speak. Alcoholism was another storm I threw myself into that I felt I could not save myself from either.
In the end there was only one answer, as hard and as difficult as it was.
It comes from a quote that I will attribute to Jack Benny (comedy routine) but I may be wrong as I get my older comedians mixed up.
"If you ever need a helping hand, you'll find one at the end of your arm".
I hated that statement for a very long time. Who was I? How was I to help me? Just those questions alone caused me paralysis forever.
What I can say about my situation(s) is that I just took a step. One step. Then when I could I took another. It took a very long time, but one day I realized that I had 'walked' much further away from the situation than I was giving myself credit for. No change in a single day, not in a month. But tiny steps.
I hate that you feel this way. I hope you are able to find ways to ease your pain (physical and emotional). You've been given much advice so I don't feel I have anything wise left to add - other than to enquire as to whether you have looked into disability at work to give yourself much needed time to rest and heal?
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Join Date: Aug 2011
Posts: 16,246
OT.....I will only add to what Irnidy has said by saying that the first tiny baby step, she is talking about, can be reaching out to the right people who can help you....and, assist in helping you to get the practical kind of help that you need...
***That help might come in the form of a social worker who works with the handicapped....Yes, I used the word "handicapped"....because you are handicapped by the autoimmune diseases that you have lots of medical documentation for....
I think that insurance m ight even pay for it , in this kind of case.....
It is worth looking into, I think....
You are fortunate that you live in an area that has resources available and accessable...(I used to live there....lol)....
Now, I know that you have been "programed" not to ask for help....lol...lots of us grew up with that message.....That might be an issue to ask your therapist for help with...to change your mindset on that....
You might also, ask your therapist to help you find a grieving support group..because I thin that might be one of the factors in the dynamic, also.
It would also give you the badly needed face to face human contact that you are missing.....
OT..I know that you are despairing ...and, that is why I want you to hear this---
There is help. You are not alone. And....you can heal. You can....
***That help might come in the form of a social worker who works with the handicapped....Yes, I used the word "handicapped"....because you are handicapped by the autoimmune diseases that you have lots of medical documentation for....
I think that insurance m ight even pay for it , in this kind of case.....
It is worth looking into, I think....
You are fortunate that you live in an area that has resources available and accessable...(I used to live there....lol)....
Now, I know that you have been "programed" not to ask for help....lol...lots of us grew up with that message.....That might be an issue to ask your therapist for help with...to change your mindset on that....
You might also, ask your therapist to help you find a grieving support group..because I thin that might be one of the factors in the dynamic, also.
It would also give you the badly needed face to face human contact that you are missing.....
OT..I know that you are despairing ...and, that is why I want you to hear this---
There is help. You are not alone. And....you can heal. You can....
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