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    Just venting

    Hi. I am a 41 year old male with MS. I was diagnosed at 26 with MS. Fast forward a few years and at 32 diagnosed with obstructive sleep apnea, then diagnosed with narcolepsy at 36.
    I am one of those people that needs to work. I was brought up to believe that you're supposed to work on days that end in Y.
    I haven't had a decent job since 2016. I have tried multiple times for SSDI and they still don't want to pay me. I recently started a part time job. My family is pressuring me to quit. I cannot do that without feeling guilty. I actually have a case going again for SSDI and this time SSI/Disability.
    What does the group think?

    #2
    Quitting work caused me a lot of guilt for many months, which was ridiculous considering that I couldn't take a single step without holding onto the furniture or walls! But why is SSDI turning you down? Do you not have the support of your neuro? It seems to me that with your combination of issues, someone should be paying attention.

    Comment


      #3
      If you don't have your neuro's support, it will be hard to get SSDI/SSI. If you do have the support, and are still unsuccessful, consider hiring an attorney for the appeal or to start a new claim. They only get paid if your case is successful and the award is capped by law. I used one for an SSDI appeal and his award came out of the amount that was awarded retroactively.

      Even on SSDI, you are allowed to work part time, as long as the amount doesn't exceed the amount set as SGA ($1310 per month, $2190 if blind are 2021 limits). I am not sure how SSI works.

      That being said, working part time while waiting on SSDI/SSI decision could work against you. They may think that your condition isn't as serious, or may think if you are working 20 hours at a more taxing job, may be able to work 40 at a less taxing job.

      You don't mention why your family feels you should not work. Do they notice a worsening of symptoms when working? Does it take a toll on you, either physically or mentally? Putting your guilt aside, if you are honest with yourself, how do you feel working?

      ​​​​​​​It was a tough decision to stop, but it was the best decision. And there was guilt that went with it. Even now I question once in awhile, but know I can't really sustain 20-40 hours a week on a consistent basis week by week, month by month, year by year basis.





      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        I really want to work. With this part time job I just got I'm starting to see why I don't really need to work. It is too much for me to be standing up all day. Unfortunately I just lost that job before I quit due to car troubles. I missed two days in about three weeks. One time the battery cables were crimped on wrong so the car wouldn't start. The second time the cable linkage for the shifter broke so the car wouldn't come out of Park.

        Comment


          #5
          And my neuro thinks I should have SSDI too. So when I get a new lawyer on the case maybe it will help.

          Comment


            #6
            It seems like you have come to a realization that standing for long periods in part time work is no longer feasible. It is hard to admit, but accepting it does take time. Sometimes, those closest to us see things before we do. It is possible that is what your wife and family saw.

            As for the guilt, when it creeps in, you have to keep reminding yourself that you tried to stay in the workforce, but MS had other plans. Try to find some hobbies and interests to keep yourself busy.

            Glad you have your neuro's support. Wish you lots of luck with your attorney.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Originally posted by pennstater View Post
              It seems like you have come to a realization that standing for long periods in part time work is no longer feasible. It is hard to admit, but accepting it does take time. Sometimes, those closest to us see things before we do. It is possible that is what your wife and family saw.

              As for the guilt, when it creeps in, you have to keep reminding yourself that you tried to stay in the workforce, but MS had other plans. Try to find some hobbies and interests to keep yourself busy.

              Glad you have your neuro's support. Wish you lots of luck with your attorney.
              LukeDuke -- i agree with this. I hope you will be approved. Your neuro's approval and trying to work will likely be in your favor.

              Find something to replace work that you find meaningful -- hobbies (crafting, collecting, reading, TV, jigsaw puzzles or sudoku, creating/building something, etc), volunteering in your community or church, (nursing homes, humane societies with animals, etc), self-care (meditating, listening to music, yoga, etc). i just listed a few options but the possibilities are endless.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                I just wanted to stress Mamabug's suggestion for hobbies. It's very important that you find new things (or old hobbies) to be involved in, because you don't want to just start sitting around the house getting gloomy and depressed. I have so many activities now that there's not enough time in the day for all of them, but which ones I do depend entirely on how I'm feeling that day. Some require me to do a bit of walking, but most can be done from a chair.

                Comment


                  #9
                  Hi Lukeduke,

                  I agree with taking action and resolving to keep busy. The suggestions mentioned should start you thinking... my only suggestion is to identify your bad habits first.

                  We all have habitual things we do that are unnecessary or downright negative. Make a mental note as to one or two of these things then look to replace with something useful.

                  Remember that useful doesn't have to be useful to you. A thing done for another is always rewarding.

                  Wisdom isn't what we know, it's how we live.

                  Comment


                    #10
                    Well I used to volunteer at the nursing home that both my mother and grandmother lived in. I also used to volunteer at the Senior Center in my town. Covid shut down the Senior Center and the nursing home isn't doing many activities right now due to Covid.

                    Comment


                      #11
                      Oh Luke. I beg you to give up guilt.

                      It is time to claim the Social Security money that you have paid into all these years. Your life will be a lot easier and your health will also probably improve. You might be able to do a part time business or something on the side.

                      I agree with the above guidance about how to get SSDI. They automatically deny everyone the first two times. Unless it is a clear cut case most people have to go to a lawyer. It is necessary to have at least one doctor in your corner.

                      if you are going before the judge think about how your disease directly affects your ability to work. Do you have trouble with concentration? Are you only able to stand or sit for 30 minutes? Get inside your body and think through your work day.

                      I sincerely wish you luck. Trust me, it will be a relief. I had to go through it when I was 35 in the prime of our architecture practice. I let down a lot of people but when that award came through it felt like a mountain had been taken off of my shoulders.

                      Comment


                        #12
                        I don't know anything about re-applying for SSDI, but when I initially filed, I scheduled an appointment at my local SS office and went in with the completed form in elaborate detail, copies of pertinent medical results, a description of my work history and duties, and I walked with a cane (which I did need at that time). I think that all of those things combined helped the process. I wasn't too impressed with the online application, because it allows no shades of gray or any explanations about your answers, and nothing about MS is black & white.

                        Comment


                          #13
                          Originally posted by palmtree View Post
                          Oh Luke. I beg you to give up guilt.

                          It is time to claim the Social Security money that you have paid into all these years. Your life will be a lot easier and your health will also probably improve. You might be able to do a part time business or something on the side.

                          I agree with the above guidance about how to get SSDI. They automatically deny everyone the first two times. Unless it is a clear cut case most people have to go to a lawyer. It is necessary to have at least one doctor in your corner.

                          if you are going before the judge think about how your disease directly affects your ability to work. Do you have trouble with concentration? Are you only able to stand or sit for 30 minutes? Get inside your body and think through your work day.

                          I sincerely wish you luck. Trust me, it will be a relief. I had to go through it when I was 35 in the prime of our architecture practice. I let down a lot of people but when that award came through it felt like a mountain had been taken off of my shoulders.
                          I agree with most of this, LukeDuke. Be sure to read it thoroughly. And, yeah. Give up guilt; you didn't ask for this.

                          I would add, though, that even if it is a relief, you will likely have ambivalent, mixed feelings. I would call my additional feelings, when I was approved, "grief". I was grieving for the loss of a career, and grieving again, for all of the losses that I'd already experienced with MS over the years.

                          Coping with my "grief" was made easier by finding something to replace my job with. For me, it was volunteering in my church and community. I replaced a 24 hour a week job (at which I was regularly falling asleep on the job when I knew I wouldn't be seen or noticed) with about 15 hours a week of volunteering at various places. I thoroughly enjoyed these experiences and i look at them as my silver lining. I would not have had the time or energy for them had I still been working, and I often felt like I received more than I gave.

                          For others, coping could involve hobbies or other interests (reading, gardening, writing, painting, completing a project that was started long ago, socializing with others who have available time, etc).

                          And it probably should include some self-care (meditation, moderate but regular exercise, a healthy diet, yoga, alternative treatments, pampering yourself, therapy if it might be helpful, etc). My personal self-care includes exercise, regular phone calls and video chats with far-away family, a monthly appointment with my certified "peer counselor" (compassionate listening and reflecting), acupuncture, kinesiology, etc. I did some self care before, but, as I have less energy for volunteering, I have cut back significantly on that and I focus more on self-care. In our society, so many people don't allow enough time and attention for that.
                          ~ Faith
                          MSWorld Volunteer -- Moderator since JUN2012
                          (now a Mimibug)

                          Symptoms began in JAN02
                          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                          .

                          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                          Comment


                            #14
                            When employment has occupied most of your time there will be a void if you stop working. How a person chooses to use that time is very up to them.

                            I suggested a part time business because, speaking for myself, I know that it always felt great to be participating in the business world. It requires your brain and it is a form of social connectedness.

                            In the meantime, I give you fully authorized permission to sit on the couch and do nothing until you figure out what your heart leads you to pursue.

                            I ice skated every day my first year on disability. After that I went back to school to study court translation. The big advantage is that you don’t have to figure it all out at once. There is time. Get out the hammock.

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