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Guest tearose
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Guest tearose

I really need your input, guidance, suggestions, experience. I have tried for many years to believe I would get better and return to work. I have tried numerous part time jobs and they never last. My self esteem is thin and fragile. My physical body is also thin and fragile. I use to think that disability was for those who were much worse off than me...I denied my seriously weak body...until recently. How do you allow yourself to finally accept the permanance of the disability without loosing hope for better times? My fear is that if I don't wake up and stop denying my limitations, I will not be eligible for the insurance that my family and I will eventually/soon need. Is there such a thing as a disability counselor? I don't think I have the clarity of mind or the energy to do these steps alone. I know my doctor will help me if I ask. I just don't know what to ask for. I see him tomorrow. Please let me know what you think. Thank you all, tearose

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Here are my thoughts. You must stop defining yourself by "the ability to hold a job". You are a worthwhile human being whether you hold a job or not. Some people can work, and some people can't. That does not make you less of a person. I do not know your particular family situation so I cannot give suggestions to you personally, of course, but I always try to focus on the positive, not the negative. It's hard to believe, sometimes, but even though your body may not work perfectly, there are some positives in you life. Identify them.

And, by all means, accept the reality that you've tried to work and you cannot. I would have no guilt about applying for disability. It's a necessity. If you cannot support yourself, where would the money come from?

Just some of my thoughts. I wish you the best in whatever lies ahead for you.

:)

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tearose-

I struggle with the very same inner turmoil. I am 22 years old and I have not yet accepted the reality that I may never be able to hold a job. I only worked for less than two years out of high school and that may very well be it for me. I am currently working from home, and working outside the home only 2 days per month. I take web classes from home as well- all this puts me over my limit most of the time. This has made me feel accomplished enough to keep on going, but my health comes first- if ever I get to the point where I can't do what I'm doing, then I would hope disability would be there for me. If you feel that it's time, then you really need to NOT be hard on yourself. I have said many times that my pride is the only thing left standing, lol :)

I don't know much about disability, except that it is THERE for those who need it- and if we are those people, then there should be no guilt about it. Living as healthy of a life as possible is what matters. Please don't feel like any less of a person because of it- after all, we didn't do this to ourselves- life threw it our way to see how much we could handle, and I firmly beleive this illness has made me STRONGER. Good luck to you in your endeavors :)

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Tearose, I can relate to how you feel but I think it is important to realistically ACCEPT where we are, wherever that may be for each of us and go from there. I don't think that acceptance means giving up. Also if you need to take advantage of programs and benefits that are out there, you should do so and remind yourself that even if you get benefits, you can stop them if and when you are able to work again in the future.

To me, giving up would be if you stopped setting goals. I think it is important to continue to have short and long term goals while managing a chronic illness. I just told my doctor on Friday that I can't really see improvement month to month but if I look back a full year, I can always find some little something that I can do now that I couldn't then. I try to celebrate these small steps.

I don't know about a disability counselor, if they exist or not but I would sure let your doctor know that you have assessed your situation and feel you need to pursue disability programs etc. He can probably steer you in the right direction who to speak with about options.

I wish you all the best and remind yourself that you are important to many people in your life and you need to take the best possible care of yourself. Finding peace about this issue will help. remember acceptance does NOT mean giving up!

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When my doctor filled out the form for me to have a "handicap" parking tab and he put down "perminent" instead of "temporary", I was crushed. I thought we were both giving up on my recovery. Instead, I realize it is only paperwork and the day I recover I can tear up the parking placard. I refuse to give up hope, and on my "good days" I just don't use my hang tag.

Ask yourself .... can I work now? If the answer is no, that is why the disability system was set in place. SSI will not grant anyone benifits until they pass a very rigorous screening test. So if you pass, then know it is not because you are cheating the system. The system was designed for just this purpose.

When you recover, you can contact the benifits office and say "Stop my payments!" And they will gladly comply.

Each of us here are charting new territory -- we are the POTS pioneers. As we make our way through the medical and insurance systems we educate people so that hopefully the path will be easier for all those that follow.

Good luck in your journey and thank you for paving the road.

EM

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For most of us, this is a permanent disorder (some do recover...so I don't mean to thwart anyone's hopes)--However, there are still ups and downs. I have experienced more functional periods, as well as periods when I was not able to function even with the basics of daily routines like bathing, making a simple meal (like pb & j), etc.

I think the throught process you're going through is familiar to most of us who've had this for a while (for me, 39 years and counting...). I find, for me, some things bring these thought processes "in my face." The other night, I had to get up in the middle of one of my grad classes and go home. The week before that, I was struggling to make it through my work days. Weeks like this make me think I'm not going to be able to keep my job, or finish school, and wonder how realistic my goals are. Other days, I'm dog tired, but have the mental fortitude to push on.

All I can say is take it a day at a time and if that's too much, one step at a time. I agree with those that say it involves making a mental shift from defining yourself by your work. Personally, I find that very hard to do. Some days I do great...other days...it's much harder. Hang in there!

Nina

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I am one of the approved ssdi people and I have to say it was one of the hardest things I've had to do . Actually at the hearing I told the judge that I didn't want to convince myself that I'm disabled much less them but I have to take care of my kids and I physically cant hold a job. On my good days I still feel a little guilty because I feel "normal" but I know if I worked I wouldn't have many good days. My energy has to be conserved and taking care of my family has to come first! Then I get sick for a week and am very thankful that I went through the process because the reality of pots sets in. I'm not sure if there are disability counselors or not but there are counselors who handle chronic illness patients! It's not easy to admitt when we are weak but this isn't something we can change so we HAVE to accept it . We never have to give up but we do need to realize we have limits. I wish you luck and stay strong.

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Guest tearose

You all make very wise suggestions and observations. I am sooo "guilty" of making part of my value as a person relate to the "quality of my work" and I didn't see how much until you all saw it for me. You've made my eyes fill with tears. I keep my focus on the day when I can work and contribute to the family finances and then feel valuable. I have a wonderful husband and two incredible sons that I have given "quality" to, why do I struggle to see my contribution? I'm brainstorming here so bear with me... I think as a mother I have strived to never take credit for my sons' successes because I wanted them to "own" both their successes and failures as they grew. So by allowing that kind of independence in them I look to find some justification for my slow challenged role. I've been very nurturing and always available to talk to, but I was never "reliable" for physical stuff like attending a soccer game or lacross game. Actually, maybe the same kind of understanding and compassion it took for them to have me for their mother will serve them as I accept the next step in my journey with a challenged body. I know I am not done with disability issue yet but because of your input I'm feeling better about trying to figure it all out.

I find myself re-reading your responses to my question taking those words as treasures. How can I not hold you all in my heart? With deep appreciation, tearose

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