Words of wisdom from those who've been here?

I saw my neuro and went on medical leave from work today and I am going to likely pursue SSDI. I feel lost and strange and panicky and like someone knocked my socks off all rolled into one. I think it was the best decision given my recent changes. Any suggestions on how to best handle this emotionally? TIA for any shared experiences or helpful hints.

28 Replies

  • Congratulations. You have made the first step, you have actually thought about yourself and put yourself first. Look in the mirror and say to yourself, "Girl I did it" pat yourself on the back and enjoy. God knows what you have done and He won't let you down, hugs Jimeka

  • Thanks for those words!

  • Jimeka, I have been on this site 2 or 3 weeks and I have got to say that I so appreciate your positive, upbeat messages. They always lift my soul!

  • Me too Jimeka 😎

  • Me three (Jimeka)!

  • I know this was a difficult decision for you. I guess I don't have any real tangible info to share with you (as I gave up my career decades ago due to MS), but I do know how a change in identity (in addition to various changes/acceptances with your MS) can affect you in the days and months ahead. You may be a 'retired' professional and grieve the loss of that position because you had to leave it sooner than you had intended, but I hope you realize that you are still the same compassionate and intelligent person regardless of your title, or lack of one. Some days you'll have to remind yourself of that. But there's also new adventure and freedom ahead for you! Focus on finding new ways to express your talents or find new dreams or hobbies you now have the time to enjoy. Praying for a good, peaceful transition.

  • Thank you Tutu. I feel like I just received a virtual hug :)

  • Good. We all need those. 💓

  • Today I finally called and started the disability process. I've been resisting this for quite awhile. My FMLA runs out in a couple of weeks. I am so weak and completely fatigued. As much as I'd like to go back to work, it's time to be realistic. I need to concentrate on the physical me. I wish you luck erash! I know I benefitted from talking to a psychologist about this. I was really sinking into a depression until she made me see my self worth doesn't come from a job.

  • Yep. Def. needing to redifine myself. Best of luck with the disability process!

  • I think fear of unknown ahead is natural.. take a deep breath and start your research, and gathering your medical records. Make a journal of medical exams, tests, get copies of all medical results, reports.

    Emotionally, take it a step at a time, perhaps you can talk with your pastor or council.. best to you, Lynn

  • Thank you Lynn.

  • Erase, it's Fancy1959, take a deep breath and try to relax and take stock of all you have. You've just been given a great gift. It's time to focus on you, not on work, not on the next deadline or even hauling yourself out of bed at 6a.m. when your MS is flaring up just because you don't want to be late to work.

    It helps me to make lists, so, write down all the things you've been putting off that you love because you didn't have the energy left after focusing on work. I personally decided I was not going to let my job and all the stress that went along with it, make my MS eat me alive. I decided I was not going to die at work, I still had too much to live for!

    Now take the time to go on afternoon strolls, sit outside and relax, read a book, spend time pursuing your favorite hobby, volunteer some of your time and make a difference, or take a nap in the middle of the day, you name it, it is up to you, not your manager or your boss! In a matter of weeks you'll realize that the only obligations you now have are to take care of you!

    Just a word to the wise, getting SSDI can be a long and exasperating ordeal! Get ready......I was turned down twice and had to hire an attorney and go before a judge before I got it. Now they are trying to hold my Medicare benefits hostage from me for over 15 months from my hearing date....Yuck. Please keep in touch and let me know how you are doing. Remember together we are stronger! Fight on MS Warrior, fight on!

  • Thank you Fancy, great wisdom in your reply. I am making that list and already looking into things I can do that I have put aside due to work. And no doubt the SSDI process will keep me busy. My neuro says I have a very good chance of getting disability due to my age and the nature of my work but listening to everyone's stories, I can see there are no guarantees. I hope you can get your Medicare soon!

  • Hi erash Congrats! Everyone has talked about the disability stuff and paperwork and stuff, but no one has mentioned that feeling of being "lost at sea" feeling. Like your on uneven ground. It will go away, l promise it just takes a few days. I remember when my doctor gave me my paperwork for disability, l ripped it up. He had another ready, cause he knew me. Ugh. But that "lost" feeling is something you don't forget. Try and relax a bit and then do something around the house, keep your mind busy so you don't dwell on it and before you know it, you won't feel so lost anymore :)

  • Thanks Jesmcd2. Glad to know (although sorry to hear) that others feel lost too. I'm resilient and on Tutu's suggestion, I already have a lengthy list of things I want to do with my new "freedom" this site, and all of your words have been such wonderful support! Thank you 👍

  • Thank you for sharing the frustration incurred.It helps us to feel we are not alone or going nuts.Lost at sea, exactly!It seems to be easier if one tells disability claims that they are totally wackers crackers, almost always passes.But to say MS or Fibro etc...may be years.All effect mental physical etc.Id hate to be the claims adjuster told, if you want to keep your job, keep the numbers qualified low.....couldn't do it...God bless us all...

  • Find a hobby, a friend that makes you laugh, an exciting TV series (get Netflix), take up reading or some games online (try single player games at first because they can help with cognition and there is no one else to care how much you screw up, later try games with others if you feel like it), something that you can do when you cannot do anything else. It can be scary but you will make it through. I was put on disability a long time ago and know something of what you are going through. Just do not let yourself get completely isolated.

    Hope everything goes well with the disability determination.

  • Great suggestions! Thank you Morllyn

  • I was sort of lucky in that I had retired (after 37 years of teaching) about 2 years before I was diagnosed. This is not the retirement I had imagined, but I do know that I could not be an effective teacher with all that is going on in my life now. Had I not retired I would have faced that same choice you faced. It is time to focus on YOU, and take good care of yourself.

  • Hi Bavery, thanks for the wisdom 😉 I'm fairly close to retirement (7 more yrs) but just couldn't hang in there knowing my errors could affect lives. Today is day 2 and while it's definitely an adjustment and bitter sweet, there is a noticeable weight lifted from my shoulders.

  • It is a difficult decision. I left a successful and lucrative 30 year career 9 years ahead of plan. My neurologist told me I should have done it earlier. My new job is to fight MS, live my life to the fullest given my limitations and become involved in the MS community.

  • Good point! My job is to fight, I.e "this is my fight song" 🎼 (reference to pop song). I'm a fighter 💪🏻

  • erash I am so sorry that you're going through this. I remember when I first decided I had to go on STD at least because I just couldn't sustain the demands of work anymore, and I promptly had my first panic attack when I hung up the phone. It came over me hard. I felt like the proverbial rug had been pulled out from under me. It felt traumatic. My job meant so much to me. I had worked so hard academically and professionally over many years and I couldn't believe that the road abruptly ended there. Anyway, I am recounting this because I imagine it is very similar to what you're experiencing. I eventually went back to work PT, and then out again, and, well, I began the SSDI application process a couple of months ago. It's not right that the application process is so arduous and antagonistic for people who genuinely need it.

    OK, so how do you cope? Hmm. Well, can't recommend panic attacks. :) Take a deep breath. Give yourself time and space. Remind yourself of your own resourcefulness in managing tough issues.

    Talking about it helps. Verbalizing the loss, finding the words around it, makes grieving easier somehow. Don't understand how that works, but it helps.

    Time is a great healer. What feels like a mountain today, won't seem so big or as bad with time.

    Recognizing that there are a million other things that you can do with your time helps.

    You may be able to pursue some degree of your "second calling" now, something you would have done if you hadn't pursued a career in x. Something that feels purposeful to you. For example, I always wanted to be a Religious Education Director at our parish. It would have been a very different career path, but it was close to my heart. With my limited mobility and energy, I am considering teaching one class a week for an hour and a half. Nothing big, but still meaningful to me.

    All of the skills that you have amassed professionally don't go to waste because they transfer into other aspects of your life. (Think problem-solving skills, analytical skills, computational skills, etc. you get the idea) That was helpful for me to realize.

    I like knowing that I have more time now to help address the varied needs of my extended family. My parents are getting older and have various medical needs and issues that need tackling. I can devote time to addressing these now whereas, it would have been much harder before. I have chunks of time now that I can give to others.

    I like feeling like my life is more in balance, is more realistic for me to take on. I no longer have to fight against my body to get through the day (well, not in the way I used to). I no longer sit at my desk at work and wonder how I am going to make the drive home. I no longer feel thoroughly exhausted on the corporate treadmill and like my life is coming apart at the seams. I no longer have dreams about driving a car that is careening out of control. I have put on the brakes, stopped the car, gotten out, and taken a step back. You have too.

    Your life isn't over. A new chapter is starting. It will begin with you taking stock of your life and your health, and figuring out what is best for you in light of your changing circumstances. Just as you've had to "accept" the MS, I found it's important to take an honest assessment of how much energy you really do have. I found that I was constantly overestimating what I thought I could do, so test that. Wherever the truth happens to lie for you, that will be an important consideration when it comes time to determine next step. :)

    You still have a job. It is to take care of yourself, @erash.



  • thank you Nom_De_Plume

    I wrote this 9 mos ago

    Have been on LTD 6 mos

    I realize now I probably should have stopped working much sooner.

    I finally know what serenity is! I loved my job/career but I was struggling to get thru the day.

    Mostly, life is wonderful now and I do think my health/well being are improved. I've filled my life with many meaningful things. Lots of giving back, part time teaching, and just noticing blue skies 🌈

  • erash Oh, hahahah! Whew, I read it like it was just yesterday!!! So glad you're past this awful phase!

  • *hugs* Leaving a career for any reason is weird at first, but it's important to remember that neither your career nor disability can define you. Give yourself permission to grieve. After my last day at work, I took myself to have a massage.

  • kdali 👍

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