When to think about disability?

Lately, it's been tougher and tougher to process information especially if there's more than 1 thing at a time, I feel overwhelmed. What used to be simple, almost automatic, now takes serious concentration. In my work, I can't control distractions, multiple stimuli and errors can affect the lives of others. I am wondering if it's time to consider disability? Assuming that you had a choice to make, how did you make that choice?

37 Replies

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  • Hi Erash, I have just quit my part time job, I did book keeping for a local mechanic. I was getting until I made a few too many mistakes and what took me 4 hours was taking me 5. I was being paid by the hour, but couldn't charge him for the extra time it took, didn't seem fair when it was my problem. I do book keeping for the family, but it doesn't matter if I make a mistake but for the local public it's a different matter. In the end I put myself first, it was making me stressed and so my ms was worse. All I can say is, think about what is best for you, be no1 for a change.

  • @jimenca your reply is so very helpful. I feel like that's where I'm at right now. It feels as if I'm trudging though muck when I'm actually on a well paved surface. Everything takes so much more brain effort to complete and it feels like a slow decline. My husband is supportive but tells me to hang in there I'm probably just stressed right now and it will pass.

  • Oh erash, this really strikes a cord with me today. My worst symptom is fatigue. I went back to school in August a mess b/c I was worried if I could do my job. Found out aug. 30th I needed shoulder surgery. Had it sept. 20th. I start PT tomorrow. Suppose to go back to work next Tuesday and can't stay awake. The month I worked was horrible. The job just keeps getting bigger and I struggle to do it. Just had a PCP appt. and the doc says it's past time to walk away from working and apply for disability. This is so hard. I hate that MS is taking my job from me. I honestly don't know what I'm going to do. Please keep in touch. I feel less alone right now.

  • I wish I could reach out and give you a hug and yes, it feels good to know we are not alone in this.

  • Hi Juleigh, it's a really hard decision to make. Everyone who isn't disabled kept telling me to apply for disability, but it just made me feel so inferior. All my family kept having a go at me, in the end I told them all to be quiet, and I would do it when I was ready, it's a big step, another acceptance of yes I do have ms. Anyway the day came when I applied, and was legally declared disabled, I know lots of people out there are labelled disabled, but it hits home when it happens to you. Be strong, and make the decision when you feel it's right for you.

  • I am with you, too!! Mostly, the change is with me. (I have had RRMS for about 20 years. ) Acceptance of my "new normal" I feel like I am a shell of my former self.. days can often be frustrating as hell, forget my words, lots of fatigue, poor sense of direction and takes much more time to do anything. I am Trying to get over my frustration with my body not doing what I am telling it to do. I Have to accept and keep going, stretch, embrace my new normal, keep moving when I can, minimize stressors and keep things that bring me joy...music, nature, animals, singing, creating, (painting, crafting, jigsaw, watching jeopardy, gardening, have/get other MS friends (no explanations needed with them! They get it!

  • Juleigh21 hi, I had fatigue issues, (I would fall sleep in meetings). What are your vitamin D and vitamin B levels at. Mine were really low. Once I got them to a normal level, the fatigue hasn't been as big of an issue. (I now long for those days I could sleep in)!!!

  • Thank you erash and jimek! This is so agonizingly hard- 24th year teaching and knowing that the end is so imminent. I know I can't work next week😢. PT and working will absolutely exhaust me. I know 2 docs, my family and friends will all be glad when I call it quits. I have my infusion and doc appt next Thursday (this is only 3rd appt with new doc- other neurologist moved away). It's time to discuss all this with him.😕

  • I recently went to speech therapist for cognitive therapy. It was helpful to learn coping strategies.

  • unfortnately, my ins. doesnt cover St/OT

  • I'm guessing that most of us, even those newly diagnosed understand what you're going through. I've been homemaking and taking care of our hobby farm for about 13 years, but I've toyed with the idea of returning to some sort of work to help us financially. I realize that even if my symptoms are remitting, I am still having trouble with concentration and memory so much so that no employer would want me. I don't even know at what point one would be considered disabled or what the criteria are.

    I'm so glad you brought this up and sure wish you well with your decision. May you have clarity with your thoughts on this!

  • My neurologist told me that I had to be ready mentally. The physical limitations were there and I was covering up for the things I could not physically do such as climb ladder (small but important part of my old job). When I finally requested my neurologist to write the note to declare me disabled my neurologist remarked that if it would have been her decision I would have done it a year and a half earlier. My stress level is down and I rest when I need to and save my energy for what I want to do.

  • I can relate!! I used to be really active; working out, climbing, hiking, horseback riding, working etc now I measure my day in steps. I have to say to myself in the am ok I prob have 10,000 dteps today!! What is important to me today? Makes my priorities more clear, if I still have energy for more, its a bonus!!

  • Wow! Everyone's insights feel so supportive. Thank you❤️

  • As someone else stated, you've brought up a really good subject, Erash. Sometimes we think we're alone in this--or suffer this particular symptom of MS alone-until someone else mentions it. I'm really sorry you're going through this, but thank you for talking about it. I had to quit my job a year after my first MS symptom. Vertigo and falling kept me from returning to work. A few years later, I tried a less physical job, but found I wasn't mentally capable of learning anything new. I'd write everything down one day, only to return to work the next day and still not be able to figure it out. I went home nearly in tears every day. I eventually had to quit; the frustration and stress was overwhelming. From then on, I've done volunteer work, but even that has been adjusted, time after time, to meet my declining abilities. I, too, have been to a speech therapist and she helped me to better cope with a few issues. Some days I feel like I've finally accepted this 'new me' only to have the 'bar' moved again, making that 'new me' the 'old me' and it's time to accept all over again. When I get down and miss who I used to be, I remind myself that a loving heart is far more important than strong legs or mental acuity. My heart goes out to you and my prayers, too, as you decide what is best for you. May you be at peace with your decision.

  • Thank you Tutu! Hearing each of your storie does make me feel less alone and I'm so grateful for that. Most of my symptoms are invisible to others and this makes it hard for supportive family to fully understand. New learning, even small things like needing to drive my husbands car yesterday takes 110% concentration, moderately complex tasks feel overwhelming, and I feel as if I have ADD. Even a small distraction makes me forget what I'm doing. I've had neuro-psych testing twice (last @ 1 yr ago) and was told I was above average. The neuro-psychologist told me, "you'll know when it's time to quit." But it's a slow slippery slope and I don't know...

    I did see an OT for a few sessions to work on memory AIDS etc only to find my insurance did not cover as originally thought. I incurred large expenses.

    Thank you all again for your listening and your comfort.

  • My neuro recently put me on Ritalin to help with the all-encompassing fatigue. I find it helps a bit with the concentration problems too. Not a lot, but even a tiny bit helps. I don't have ADD, but feel as though I do. I can't even follow an old recipe I've made for years without messing it up. And yes, driving, Especially in an unknown area, takes lots of concentration, and I am exhausted afterward. Best advice the speech therapist gave me was to get things out of my head. I never needed to write things down before-no day timer, no lists, no nothing-the old me filed everything away in my head. I now write EVERYTHING down-try get it out of my head. Otherwise, I'd go crazy. The mental/cognitive issues, along with sensory/pain and overwhelming fatigue/exhaustion are invisible to others. It's hard for even our most compassionate family members and friends to understand. When they see me without my forearm crutches, they think I am fine. They don't realize my mental deficits are far worse than my physical ones. My neuro recommended my family watch archived webinars on mscando.org. So far, my husband and I have watched the ones on fatigue and mood. In one hour, he's learned more than my 25 years of trying to explain to him why I can't do this or need help with that. It sounds to me as though you still don't know it if is time for you to quit. You're still struggling with your decision. I'm going to pray you WILL know, without a doubt, when it is time-and that your decision will give you perfect peace. In the meantime, talk it out and work through it. We're here to listen and help sort through your feelings. May you feel the strength of all of our heartfelt thoughts and prayers as you work through your day today.

  • Your words and well wishes are much appreciated! I'm on Nuvigil for fatigue and it does help with cognition. And yes, I write EVERYTHING down. If I think, oh I can remember that, an internal voice speaks up and says "no you won't."

  • Tutu, my good friend with RRMS was put on ritalin as well and it has helped her with concentration and memory. My neuropsy is recommending to my neuro sm dose to start- we'll see 👀

  • Tutu, you are soo not alone. Resilience is a vital skill in this MS battle. Be good to yourself and find joy in the small things!! Bless you!🙏🏼

  • Thank you, Ebrod. I appreciate your 🙏 . We all need them! I hope you find some relief with the Ritalin. Because I tend to 'way overdo' while on it, then crash big time later in the afternoon, I've decided to take it only on those days when I must (activity planned, visit/conversation with friends, etc.). My lifestyle allows me to do that as it's just my husband and I at home now. I don't HAVE to be on the go every day. Praying you see your neuro and get relief soon.

  • Tutu, thank you so much!! I look forward to every little thing that works!! Live well, prayers🙏🏼

  • I love and embrace the 'New Me' is my new mantra to quell my frustration! It helps me shift my perceptive (most days)!! 😍 :D

  • Ebrod good mantra 👍

  • Hello. I also held on as long as I could. Now I'm paying the price. I haven't had any income for almost a year & still waiting on disability. Sure it will be retroactive but my utility company doesn't want to hear that. The sooner the better.

  • So sorry :(

  • It was a very hard decision to make. I just knew it was time to stop kidding myself and put the paperwork in before some gets hurt or hurt myself. If you're financially good and put stuff in order before retirement it'll be an easy switch for you. I had to get use to being paid once a month but after that it's been great, just stay active you'll be fine. Good luck.

  • I think I made my decision

    Now get myself organized before I act on it

    Thank you all

  • Best wishes as you move forward, Erash. May you be in total peace with your decision, and find relief once all is accomplished and behind you. Also hoping you have new joys/challenges to fill the void if you've made the decision I think you have.

  • Hi, erash ! I was diagnosed in 2010 and was forced to retire in 2013. I got on Gienya right after I was diagnosed, and I initially did very well on it. But it tore up my stomach and I had to get off of it, then I went on Copaxone and had a very bad relapse. The relapse left a lesion on my brain stem, as well as a few others in my cord and maybe one in the brain, but that left me very debilitated. That's when my walking deteriorated and I began falling and my cognitive issues began and got progressively worse. I refused to use a cane too help me walk because I didn't want to admit to myself that my disease had in fact progressed, nor did I want to look weak, nor did I want to think about the future as I was not ready to think about retirement yet. But I was standing at counsel table about to start a trial, and I had to hold on to keep from falling and I started becoming confused. I realized that I was not doing either myself or my client a favor. Luckily, the trial got continued and I went back to the office, and my husband and I had a very long talk. He had had a stroke in 2005 and was left too debilitated to continue his career before he was ready to retire and he told me that my body was not giving me a choice any more. And eventually I came to accept it. I wound down my practice and retired. It was painful and draining emotionally; I mean, how do you just one day quit doing what you've done for 35 years? But somehow you just do. Your body will tell you when it's time. Just make sure that you listen to it!

  • Sukie247 your story brought me to tears. I am having a rough time with my self-esteem about giving up my career. But I know it's time. Thank you for sharing. So sorry to hear but helpful to know others have faced these same life challenges.

  • My good friend with RRMS was forced to retire from a NP career in a neonatal dept which she loved. it was a hard decision but she knew others' lives were at stake so, she had to do the best thing. She fulfills that need now with gardening (with help from fam & friends). Different nonethless but still somewhat satisfying!

  • Hello and my apologies to @erash and everyone else who has replied to this post. Although I realize that this is an older post, one that began before I was here, I felt the need to post this since I am currently experiencing this mess! I am not yet sure if I can find a job that I can manage and do without the ability to learn, process and retain information. And the jobs I was recently fired from also indicated that I wasn't able to keep up physically or cognitively in order to be productive and efficient. The work environment has changed drastically and it's "lean and mean," meaning that you must have the ability to do your job plus the job of two or three other people in order to keep one. Most everyone can work circles around me and it's usually either the young people in or just out of high school or college who succeed or a few "seasoned veterans" who have been doing their jobs for so long they can do it blindfolded and at astounding speed! Since I don't have many computer skills I can't get a sit-down office job. And even if I attended classes, it would still require me to learn and retain new information which I obviously suck at. So I am hoping that my recent application for vocational rehab services will greatly benefit me, either from the perspective of finding a job I can do or not being able to work any more. I won't know until I'm approved and have an evaluation, whether it's from a dr. or a physical/occupational therapist. Not even sure if it's going to be covered by insurance or if the vocational rehab service will cover it. Either way, It's going to be a long process and at this point I'm running out of patience with everything. I need to find a source of income soon, whether it's from a job or disability, before I lose my current home and sanity whichever comes first. Thanks for listening to my spiel here....... :-/

  • Bamfan1442 wow! It was interesting to reread my post. I've now been on disability since January and left work in October. At first it was a difficult transition but I have no doubt I made the right choice--for me. I hope your journey goes as well. Sending you caring thoughts!

  • Thank you @erash! Glad you made the right decision for yourself! It will be a difficult transition for me as well having worked for the past 20+ years! I was in the manufacturing industry but can't do that kind of work any more and not quite sure what I will be able to do with my limitations. But that is something I need to accept regardless since the possibility exhists that I may never be able to work again! My thoughts are with you as well and thank you for bringing up this issue. It affects so many of us and is an added stessor indeed, one that we have to deal with!

  • I'm at that point myself. My symptoms hit fast and hard this time around and something as simple as a off sound sends me into 20 different directions, keeping me from being able to focus and sometimes lose hours. My last resort at any kind of income was working from home making custom decal stickers, which has become even more difficult in weeks past. This disability game is no joke and it's certainly not made easy by any means. But the hardest part is willing to admit what our bodies and minds are trying to hold onto is, for now, no longer possible. I'm grateful for the assistance I've had in dealing with the paperwork, as I know I could not have done it myself. I know if i can get past the red tape, the stress will ease and i can start focusing on real treatment.

  • GerriG thats so true! It is hard giving in to MS. I hope it all goes well for you!

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