Life Adjustments

I have a disconnect between my mind and body.

I am experiencing these crazy cognitive issues where I have a hard time explaining my thoughts. My symptoms include sporadic forgetfulness, brain fog, and general malaise. My head is all jumbled and the thoughts that are spilling out of my mouth don’t match the thoughts that I am really thinking. It’s just one big disconnect going on between my mind and my body.

I am having problems tracking conversations in groups of people, problems with stuttering and problems remembering which day of the week it is.

Recently, I made an appointment with my doctor so he could give me a new prescription and talk about some of the new issues I am having. During the visit I wasn’t able to explain my current problems and I totally forgot why I was there. After the check-up I left the doctor with the impression that everything was going great. On the drive home my husband asked me if I got the updated prescription that I needed. I replied that I forgot to ask him for it. We quickly turned around and fortunately we were able to see the doctor again that same day.

disconnect1

Once again MS has caused me to make some life adjustments.

Now when I visit my doctor I make sure my husband is with me in the examination room so he can help me explain what my problems are. I also take notes when a new problem arises. Then I bring the list of items to the appointment.

Now if only I can remember where I put my list.

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

39 thoughts on “Life Adjustments”

  1. Oh my, you totally said it. there are days where I get confused on how to get home from the grocery store 8 blocks from my home. and I totally feel the disconnect between brain and mouth/fingers. I now feel like I have dislexia, because when I’m typing sometimes jibberish comes out. and when I explain these things to my doc, they disregard them, like they are no big deal. THEY ARE A BIG FRICKIN DEAL TO ME. I get so frustrated sometimes, and my poor husband has to put up with me. I feel silly when my 4 yr old starts reminding me of things I am forgetting to do.

  2. Good morning,
    I am currently going through the same process of having my second episode of cognitive failure. My last episode was exactly 3 months ago. Both times it lasted for a week. I woke up this morning and fell straight down on my knees. Ouch!! My husband is taking me to a facility that has a free standing MRI. My test is at 10:10 p.m. My pain doctor ordered the MRI. I suppose he suspects MS as well. I had been diagnosed with TN first. No MS diagnosis yet, but I’m not going to run from it, just face it head on with as much knowledge I can gather from all of you. Thank you for sharing. Melissa

  3. What you described is by far my most frustrating symptoms … and extreme fatigue would be second. I can handle not walking right. I can handle saying stupid things (that’s funny to me). I can handle buzzing. Burning. Weakness. And so on. But not being able to think or concentrate or get my thoughts straight and then on top of all of that having to go into the world and be social??? It just does not work. It’s a recipe for disaster. It’s like someone has put a mixer in my brain and is messing it all up and at the same time expecting me to function in social settings.

    I am trying to learn how to at least sit and be quiet in social situations when I am feeling like this. But it’s hard and it will take a lot of patience on my part. I talk to myself in my head: “It’s ok. Take a deep breath. It will be over soon. Try to focus on one thing.” And so on.

    Thanks for posting.

    1. yeah, when my brain gets like that, I have to do everything very carefully and slowly, and I have to focus on one thing at a time. no multi-tasking, no more than one small task at a time. that is impossible to do when in a busy office setting. and the doc wonders why I’m so frustrated with them for dismissing my issues. I can’t do my flipping job like that.

  4. I enjoyed reading all the posts on this site. I never know when cognitive issues will affect me but I can be sure it will be at the most inconvenient time/place. I used to be a very different person, very outgoing and at times outspoken. Now I’m much more quiet, life is just too short.

  5. Hi Nicolle,
    Many of us can relate! I’ve started a binder with all of my doctors in it. I put ANY info. on medicine in it as well. On my last visit to my Neuro, my husband didn’t go and the visit still went well. Except that I started to talk too much and I forgot to cover one thing on my list. Next time, I’ll have to open the binder to that list and check things off.
    Thanks for this post. It helps us remain mindful.
    Estizer

  6. A year ago my brain said stop. One day I had to go home from work and I didn´t understand what happend. I wasn´t feeling stressed but my doctor said I had been compensating for a long time to be able to manage my work, and the day it said stop my brain couldn´t compensate anymore. That was what my doctor said. During this winter I have tried to understand and reading on the web. But there isn´t much to read about cognitiv problems, but so much about all the other typical MS problems! I have started a mourningprocess since my old me is gone. I tend to isolate me and that is not good. It helps to read your blogg Nicole :-).

    1. Helen, we are going through the exact same thing. Most recently, I have been on FB sending comments twice OR writing comments 5 times before I successfully sent them. My spelling is suspect – had to ask my best friend if t-r-i-o was correct for three people. I was an above-average “speller”. I was involved with an English teacher for 17 years and now find myself struggling with grammar and choosing the right word. You know that isolating will only make it worse. I know because I didn’t want “to take me out”. Depression was also a big factor in that decision. We have to be around people even though it’s the last thing we want to do. It’s so difficult to do. I’m mourning a lot right now. I am slow as molasses, in the midst of an acute flare-up, procuring an electric scooter and trying to get on the “short bus” – term we used a long time ago for the old and “different” people. That was long before politically correct was even conceived.

  7. I hear what you are saying! I got a herbal memory boost vitamin supplement to try and help my unreliable memory but do you think I remember to take it?

  8. I’m not sure whether it’s age-related since I’m now 45 or related to my AVM, but I’ve been there as well. My friends have all tried to convince me that they have these brain freezes too and it’s just me getting older. BUT IT’S NO FUN AT ALL! Sometimes pretty darned embarrassing, but you must continue on!!! Forget about how efficient you used to be able to do things for and by yourself and develop a sense of humor and laugh it off! Like Just Jackey said earlier accept your limitations and make adjustments as needed! And yes, ReAlity does bite!!!

    1. Others say that to me as well “Oh, that happens to me too.” But the thing is, it happened to me before MS manifested itself and it WAS different. I knew the word was there somewhere. But now it’s like there is just a black hole where a thought should be. Nothing. It does not exist.

    1. Hi, I can totally relate to all of these cognitive issues. My neurologist sent me for neuropsych testing and put me on a new medication as a result of the test outcomes. The new medication seems to be helping so far – I notice that my mind is more attentive and less forgetful. Talk to your neuro … Maybe s/he can recommend something that may help you! xx

  9. Nichole I encounter the same issues and I am now always having a Friend go to the Doctors with me and a written List of questions, cause to many Times I go in and forget most every Question. Heck it is a Miracle I still find the Doctors LOL

  10. Since I take my ipad everywhere I go,I put any questions there and pull it out during my visit! I don’t have the cognitive issues and pray to never have them. Got enough of the other stuff!!! It’s well friend!!!!

  11. NICOLE, I don’t feel that I have the cognitive isues that you describe..everything else but no cognitive problems. I am very detailed minded, taking notes & recording everything on my computer & calander. I also make a list that I bring to my doctor; scrips needed & an overall of how I feel & my current condition. Don’t get discouraged, just try something different to help you along. You can do it!

    1. I am detail minded also. I forget to look at my calendar sometimes especially now because I am housebound and looking at what day and time each one is coming so they don’t overlap. It has been Grand Central Station today. It’s overwhelming,
      However, i have remained calm and collected. It’s a miracle. I know I’m missing one item for doctor’s visit Thursday. Not worried, it will come to me. It’s nice talking to someone who so organized. My downfall – the only thing i am consisted with is my inconsistency. Keep up the good work.

  12. My current adjustment I am trying to make is to the numbness I am feeling in my right thigh. I also have an issue with sporadic forgetfulness. I just emailed my boss an apology for missing an appointment we made for yesterday. YIKES!
    So far the changes have been subtle.I count my blessings daily.
    I love that you are always figuring out ways to fix or work with the challenges as they arise.
    Have you seen the recent Facebook post by the National MS Society? It speaks to our issues.
    https://www.youtube.com/watch?feature=player_embedded&v=vLO2boSqvOE

  13. Be there done that. It’s surprising to me how no 2 MSers are the same. Yet, we all eventually seem to experience many of the same things. Your blog reminded me of how often I go to the doctor and do exactly what you did. Hope this is a good MS week for you.

  14. I guess it’s not ironic – I related to everything you said. You didn’t mention this -I talk to one person and look at another. When I can’t express my thoughts, I make sounds which could be your stuttering. I usually just shrug my shoulders and hands palms up, saying something like “Only God knows what I was going to say”. I could go on, but I am exhausted.

    Know that you are not alone. Oh, I can’t find any paper I need and I KNOW I put it there. I just found my grocery I lost 14 hours ago. It was right there in the pile of papers I looked through at least three times earlier. I’ve always said MS is a disease of adjustment. I could never have imagined it would be so frequent and bizarre. Accept and adjust. Reality bites.

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