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    Describe Cog Fog...curious etc.

    It's like this: I wake up feeling maybe a bit med-groggy but OK. Get ready, go to work. I do fine until 2 p.m., then my mind takes a nosedive. I go from lucid to fuzzy. I'm a native speaker of English but at this time I feel like I'm not! I try to front-load my day:complex tasks and projects first thing, then easier as the day progresses.

    But work is getting more stressful: tasks far less predictable in nature, countless last-minute, end-of-day requests, staff turnover, people jostling for position, etc. I am useless at end of day!

    Only a few people in my organization know I have ms. They probably don't understand it either. I don't want anyone else at work to know. I generally perform at a high level when it counts, but...for how long? I also have the misfortune of still having professional ambitions. But I fear they are no longer quite realistic.

    My mind is far away, my words are below the ice and I'm standing on top. I briefly see the words I want to say but they sink under dark water and I can't recall them.
    RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

    #2
    Hi KateA2,

    I was experiencing what you describe, but by midday. Provigil helped me get thru for years, but eventually, it stopped giving me the same level of help.

    For me, I have focus issues:. Either not being able to concentrate to retain new info or being able to retrieve old info. I become easily distracted, starting one task, run into something, then try to solve that rather than complete task at hand and circle back.

    If you haven't already, you may want to get baseline neuropsychology testing. If any issues are discovered, they may be able to come up with strategies to deal with the weaknesses. If open to it, amandine, provigil, nuvigil, Adderall are sometimes used to help fight cog fog caused by fatigue.

    The other thing a good neuropsychology can do is consider occupational therapy. Depending on the type of work you do and what your aspirations are, they may be able to help your chances of continuing to work. If and when you may be able to use an accommodation, they can help.

    Hang in there. Use every resource you can for work. I used to sneak a nap in my car at lunch for 30 minutes. Other times, I would just go in a small conference room for 30 minutes, just for the quiet and to help me focus.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Yep Kate, that's what it's like for me as well. 2pm is such a strange time to take a nose dive isn't it? The only time that I putter out before that time is if I didn't get at least 8 hours of sleep the night before.

      For me, the fatigue and cognitive problems are the biggest complaints. I feel I'd be able to deal with other things so much easier if I had energy and well, you know what I mean.

      Hang in there. Hugs.

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        #4
        Thank you Kathy! I want to talk to a neuro about getting a baseline assessment...I am in the process of transferring to a new MS specialty clinic (instead of overburdened regular neuro clinic with a few harried MS docs). It's been a long process, I'm looking forward to not having to explain as much to the doc.

        I should see about sneaking off for a power nap or two. I wish we had a cot at the office, and also that resting wasn't so frowned upon!
        RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

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          #5
          Kate, I can't tell you enough how much just going in my car to close my eyes with some soft music playing helps me even if I can't fall asleep. I set my alarm so that I'm not feeling any anxiety about not waking up if I do end up drifting off. Maybe that might help you too.

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            #6
            KatieA2 & jamilea, I have exactly the same problems & timing, and also wish I could just close my eyes, drift off if I need to, and recharge for 20-30 minutes. Also, when I'm tired, my eye muscles refuse to focus automatically like they should. I have to mentally will them to behave and hone in on what I'm trying to see on the screen or paper.

            I wonder if it's possible to claim I need a rest period as a reasonable accommodation under ADA. There is a locked, "privacy room" where I work that women who are nursing can use to collect milk for their babies. You have to reserve a time to use it, and the receptionist has the key. So it could be done without anyone seeing me sleeping or looking like I am. I used it once to have a nurse show me how to inject Copaxone. I don't know if it would help or hurt to ask.

            I'm completely, publicly "out" at work. I told management and a lot of coworkers about my MS over 18 months ago because it became obvious from the way I walk (stagger) and talk that there's something really wrong. I figured it was better to just explain than have people wonder if I'm abusing substances. It's a very large company (over 60,000 employees), so they of course have extensive corporate programs and outreach for mental health, disability, and a range of other personal problems like domestic violence, etc., so maybe it's worth asking.
            PPMS
            Dx 07/13

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              #7
              Originally posted by J-Bo View Post

              I wonder if it's possible to claim I need a rest period as a reasonable accommodation under ADA. There is a locked, "privacy room" where I work that women who are nursing can use to collect milk for their babies. You have to reserve a time to use it, and the receptionist has the key. So it could be done without anyone seeing me sleeping or looking like I am. I used it once to have a nurse show me how to inject Copaxone. I don't know if it would help or hurt to ask.
              I actually had asked for a few accommodations which were granted.

              I was given the option to work at home one to two days per week initially. Later, it was expanded to as many days as needed, which could be 100%. I was fortunate my job was the type of work that supported it and the use of technology allowed me to teleconference from home.

              I also was granted the use of a small meeting room that I could reserve, and put my head down or just sit in silence to help reset my brain. When I was having more trouble and working at home, I could also take a longer break at lunch and make my work day longer, assuming it didn't interfere with meetings and deadlines.

              I was fortunate as my boss and his were very supportive if my efforts. While they were supportive, since a large company, I had to go thru HR.

              If you do ask for an accomodation, the NMSS has some great info on how to do this. They may also be able to help answer what is a reasonable accomodation. If you have a good relationship with your boss, you could also ask him/her their thoughts on how to proceed. If you think you aren't being treated appropriately, you could always consult with an ERISA attorney just to understand your rights. But I doubt you would need to do this.

              Since your diagnosis is public, you really don't have much to lose. However, if you do have to go thru HR, it then will be part of your permanent record on file, as opposed to informal knowledge. Personally, since people know, it may be better to have it in your record so protection based on ADA becomes more clear. I have heard horror stories from people where everyone knew, but tough to prove discrimination since not on record.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                This section of the NMSS might help you J-Bo: http://www.nationalmssociety.org/Res...Accommodations

                Yesterday, my husband and I bought bicycles. I haven't been on one in about 7 years. I rode for two miles and felt like absolute crap physically, but I had a sense of well being in my mind afterwards.

                In the evening time, I decided to get on the bike again to grab some pasta noodles from the grocery store several blocks away. It was a little difficult because of the weakness on my left side, but I did fine. It was the first time in a few months awhile that I made it all the way until midnight without feeling like I'm going to pass out because of the fatigue. The exercise seemed to have reduced it. I also had minimal leg pain last night.

                Today, it took a lot longer for the fatigue to set in. It just started about 43 minutes ago. I plan to ride my bike again when I get home tonight. I'm sharing this with you because maybe something like this could help you too. I know how you are feeling. The fatigue is my worst symptom.

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                  #9
                  Thanks again everyone for the great advice
                  RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

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