I am a "But you look so good!" MSer... Most of the time, I do ok, fatigue mostly, restless leg syndrome, some small issues... but I am getting married next year so I am planning a wedding, leaving my job at the end of August, going back to grad school full-time and interviewing for internships. The amount of stress I feel is sometimes unbearable. I am beginning to notice worsening cognitive issues... Word recall, memory loss, basic math issues, not to mention the depression and anxiety.
I'm not going crazy, right? Because that's what it feels like. The stress feels like it is slowly making me insane, along with making my MS rear it's horribly ugly head. But everyone around me just thinks i am cracking. And I don't know how to handle it without using my MS as an excuse... Just please tell me I am not alone...
I have fairly similar going on right now. Dx in 2006. Attacks in 07,08. Pretty minor stuff since. I've started noticing it is hard to read, comprehend, and remember. Hard to do anything math or process related. I always have stress to some degree worrying about the unknown, MS, and creating "what if" disaster scenarios. The memory stuff happened during my first major attack . The left side of my head went numb and when talking I couldn't place or find words I wanted to use. Just blank. Anyway, that word association part never really came back. I always had a great vocabulary too.
So, this year I started to notice problem solving issues. I could feel my mind going blank, face flushing, wind whistling through my ears, the moment I was presented with any type learning scenario. I figured I might be able to exercise my mind back into shape or would at least try. I started Lumosity brain training. I haven't used it in a while. Since, I started making mistakes at work. That has created or added more stress I believe and the cognitive stuff gets worse. I'm not sure what the trigger is at this point. Is it MS, cognitive,stress? Is it MS , stress, cognitive? Is it stress, MS, and the symptom manifestation ?
I've also had bouts recently with lots of indicators for depression. I enjoy very little nowadays and find it hard to do much anything. I wonder whether MS, the Betaseron I take for MS has created the depression at least. That is why I joined this site. I always resisted joining or looking up MS related stuff. I wanted to hide from the realities of MS and figured being involved would make unpleasant facts come to light and scare the crap out of me or make stuff worse. I also didn't have anyone to talk to. I work at home. My wife is a Dr, busy, and generally positive person. My kids I told this year.
Anyway, looking at what other people experience here made me feel that the issues are real. I am getting older so some degree of forgetfulness can be expected but we know our own intelligence level and what is mentally easy or challenging. I've always read voraciously and that has become hard and not fun. Words bouncing around. By reading people's experiences here it has made me realize these issues are part of the MS thing. I also made a DR appointment to address the depression and discuss memory. I have taken B12 shots too this year as it is supposed to help with the cognitive stuff(hasn't yet)!
You aren't crazy! I don't know you and have similar issues that appear to be worsening. I know stress and the associated inflammation isn't good for anything in your body! Inflammation can cause a myriad of issues and our bodies attacking nerves creates inflammation . The treatment is cortisteroids to reduce inflammation right? Stress is super bad and we need to find ways to minimize its occurrence or make it less prevalent. I haven't been able yet. It amazes me that people say and think the things they do. I know because I used to be one of those people. Here is what I learned....You really shouldn't open your mouth and give advice to people unless you've walked a mile in their shoes. I think the best thing people can do is listen. Give a hug. Go for a walk or have a moment/cup of coffee. Just ask "how can I help?" If so inclined. Offer to do research etc. people who don't have this *****ty disease will never get it. Just like we won't get people who suffer with other maladies and their unique issues. Our role in life is to be supportive to some degree or whatever degree we're capable of being compassionate. We're on a journey. That journey is unpredictable. It is great you're still attacking life with gusto. Keep it up! Mental sharpness is just as important as physical strength. People like us have to be in better shape mentally and physically because the inevitable declines in those areas can be a lot more swift or sudden. Let me know how I can help and who knows..maybe you'll also end up helping me?
Well, another Monday and work stress related dread. Will I ever shake this? Just haven't figured how to cope w/ this MS thing on a daily basis yet.mhow does everyone else remain positive or remain happy?
I too am a "But you look so good" MSer.
We are all not crazy (a word I am not crazy about).
There are definitely cognitive issues that don't just 'kick in' but kick hard in the face of reality.
My Dx was in 1998 and I have remained at work as a full-time professional with a fun personality and above average vocabulary. While I think both are still true, I notice the words coming slower, thoughts not connecting and pauses in my speech. I finally connected here because I am struggling with it being noticed by others and impacting my work product.
I too am looking for support and an updated 'kick in the ass'.
Thank you for sharing your challenges. It helps to get outside my bubble where everyone just tells me to just "Get More Rest", "Take Care of Yourself" or "Exercise". I do all of those and it's NOT THAT SIMPLE.
You have no idea how much I appreciate your comments it was kind of like looking in a mirror. I was diagnosed in November of 2011 after roughly 15 years of misdiagnosis with multiple physical problems. It started out as a relief because I had an answer or label to put on it, that has changed to frustration. The " but you look so good" comment drives me crazy. Thanks for the superficial compliment but what you really feel like is "sorry I don't look disabled enough for you". It is a struggle sometimes not to appear bitter, but it would be nice if people would pick up a book or Google a condition rather than just making assumptions that they know how you feel. Because of my worsening cognitive issues I was forced to give up the career that I worked very hard at for 20 years. I have also worked really hard to live and work through some very dark times. I know that I need to remake myself, I am just struggling with what remake should be.
Hi kc, Both you ans john remind me that in the beginning i use to think i was going crazy. All the weird symptoms thoughts feelings and happenings from moment to moment were so strange I thought I was halucinating permanently forever and never knew what was real. Those were the days when support groups were weekly meetings and there were no other places except the MS society to turn to for help, and I didn't know what questions to ask. This forum is great, all the postings cover anything and everything from first hand experience. Stress is unique to each of us, we all make our own monsters that choke us and we each get to choose how much we let them strangle us. Nervous Nelly visits and when she does I see how wired I am, things that never bothered me now can drive me crazy. Noticing how i react to things can only give me a clue what to avoid after the fact, and each clue leads to a plan. Like pushing buttons, the buttons that are new to me have to be learned.
What is interesting in my case is the never ending dilemmas that are occuring. Has cataract surgery in october and november, then complications forcing me to see the md seven days in a row then going hundreds of miles to see a retina specialist(lucky it cleared up without risky surgery) then lens changes, then lens changes again then lazer surgery on one of the eyes (with painful abrasions - the md says he does 200 of them a year and I am the first with complications to lazer surgery) and now this week, lens changes again. Also decided to get some caps replaced on my teeth, having to go back weekly for fine tuning the bite now it turns out I swallowed one of them and have to start over again!
In the mean while we are doing home renovations that are going the same way. Painting one bathroom I tried one of those textured rollers that turned my walls and moulding into chicken pox, so we had to sand them all down before we could repaint the "sandpaper walls". This is my "Murphy Year". NOTHING IS COMING EASY, and all the painting has to be finished before wednesday before the new floor comes in. And of course the people I was counting on to help, had their own emergencies which left me hanging with some of the work, like the friend who was helping me fill some cracks in the basement floor, when we were mixing the cement he son in law came to get her to rush her husband to the hospital two hours away, and I was the one to have to finish the job, lucky for us we had frozen dinners to pop in the microwave.
The big thing I notice is that I have eliminated expectations or I have altered all of my expectations so that I now expect everything to go wrong and everything to take a million years to get done so everything rolls a little easier, like the furniture they delivered was not what we ordered.
Like john says, we are on a journey, mine seems to keep going in circles, like stuttering, and I just keep doing what I am supposed to be doing and 'cross my fingers' I will finally get to stop seeing the eye md and the dds and a can of paint.
So I expect nothing and am very or almost very happy with whatever I get. I think stress is only stress when we get what we did not expect for the effort we are expending. Like washing the dishes, not being able to see if they are clean - so I just put it back in the sink - and find one didn't get clean in the dishwasher either. Annoying but not stress anymore. have fun.
Hi kchiq -
I'm a big fan of Lumosity for cognitive assistance in a stress relieving video game format. Give it a shot.
And no - you are not alone. Ever consider writing for stress relief? Look up the We Write for the Fight group here. Couldn't hurt.
Wishing you the best.
Writing is a wonderful way to cope with stress and anxiety. I'm a clinical social worker by profession and when I am working with a client with significant anxiety I frequently recommend journaling. It's a great way to get those racing thoughts out of our heads and on to paper. Then we are able to reflect back upon our thoughts and be mindful if our thoughts align with our wise mind or if they were more with our emotional minds. Some times our emotional minds can run rampant, making it hard for us to move past the anxiety and process the stress in a healthy manner.
SJM, thank you for the suggestion for Lumosity; I too have been struggling with my memory and cognition and have wondered if anyone has tried this site with success.
kchiq, YOU ARE NOT ALONE!!! I, also, am mostly a felt not seen MS'er with the occasional balance and coordination issue when I've over done it - which is often! My cognitive issues have also become quite the burden along with worsening eye sight in my right eye after this most recent relapse in September of '13. I am a 31 year old mom to two middle school aged (wonderful) boys, wife, school bus driver, secretary at the school districts transportation department, I train our new bus drivers and run dispatch, then, I'm a volunteer youth 4-H leader/mom, volunteer emergency medical responder, help my husband run our fencing contract company and manage a 1,000 acre ranch running 400 mother cows (800 total animals when the cows have calves on their side). Looooong story short, I generally have at least 5 things going at any given time and the stress level that I'm often facing is high. To put the cherry or straw (whichever way you look at it) on top, we live 200 feet from a very controlling mother-in-law. There are days that I wake up to the phone ringing, a kid screaming, a cow bawling near the house, my husband asking for forty different things at once and all I want to do is RUN! If people throw things at me too fast, they go in one ear and right back out the other after which, I don't give them a second thought. It's as if it never was LOL! My husband has gotten it figured out to bring me a note pad and paper and go slowly as he rattles off things he needs me to take care of. My kids on the other hand - NO SO MUCH! "MOM! I need my wrestling singlet washed, don't forget to set up my doctors appointment for my mandatory vaccinations, I have a project due in two days and need ______. Oh, I also need you to fill out 50 forms for me to participate in wrestling, pay the school $60 for my athletic card and the lunch lady says I need more money on my lunch account. Did you get all that?" My boss is much the same way - he's a wonderful man and is completely understanding, but he's also a whirlwind that does things in high gear at all times, including spitting out instructions to me. I've taken to keeping my cell phone handy and have moved the "voice recorder" to the home screen, so that in a couple of swipes I can have it anonymously recording his instructions for a later play back so that I can understand and absorb it all.
If I had an extra hour in each day, I would probably use something like luminosity more regularly, but with every thing going on, I figure my poor lesion covered brain get's enough of a workout LOL!
Keep your chin up! I don't know whether you are a religious person or not, but I always take comfort in the fact that, God only gives his hardest battles to his strongest soldiers ;-)
You are so not alone. I too am one of those that "looks so good"! As far as I know I have never had any physical symptoms, but right now my mood is telling me that I am having an exacerbation. I feel like my filter is broken. Stuff is coming out of my mouth that is completely inappropriate for the work place and my co-workers just think I'm being a jerk. Or maybe they don't - maybe I'm just having a major depressive episode. I'm newly diagnosed but am sort of recalling similar symptoms from the past. It leaves me feeling like the world hates me and no one wants me around.
No not alone. I don't think all the symptoms that I feel are outwardly seen. And certainly not understood by those that love me. One of the sayings that helps me alot is "Yes I have MS - BUT MS does not have me!"
Please don't feel like the world hates you or that no one wants you around. Find the good. Be kind to one another and kindness will find you.
I don't have a dx yet but I too often feel like I will collapse when I get stressed and I can't remember or comprehend all the stuff thrown at me. I'm "glad" to know you can survive it though. That is one of the things I'm terrified of if I end up with an ms dx as I suspect I might.....
Nothing is suspect. We will survivie all of it. March on - - - please.
You are not alone.
Sounds like too many plates on your table, slow down, take time, no make time to enjoy, laugh, give yourself permission to slow down a little. You have an exciting year coming up...wedding...and you want to start grad school and intern...what is the xx rush. Check out some ms webinar on cognition issues, relax, it helped me and let me realize oh ok I still get it, great ex was explained somewhat like this, you still get it but sometimes you are like a old computer a 386,or Pentium 1, a Pentium 2, Pentium 4 etc, you still get it (not like 'oh will I forget to count to ten) BUT sometimes it is just slower to process and takes a few more seconds or thought. Don't wait till the last minute & do 100 things at once(like I used too, it becomes overwhelming) You have to pace yourself, educate yourself on techniques to help. You seem like you have so many exciting events to look forward too. Don't let stress cripple you. Take the time to 'smell' the roses, everyday is truly a gift not just a saying we hear. MSers just have to tweek their outlook and blessings. ok I will stop. I wish you the best. ..PS you are not going to crack, sometimes you have to make lemonade out of lemons because sometimes .....
Hope that you are doing better...you haven't updated how you're doing. Lots of great replies to your post. I enjoyed all of the advice and felt less alone reading the replies.
Stress will make it more difficult cognitively, for sure...I have learned to take time for mindfulness, even if it's only a few minutes to quiet the mind. Learning techniques to lessen the amount of self-talk that can spiral into anxiety helps too...cognitive therapy is good for supplying tools to help.
Hope you are less stressed!!
Thank you for sharing your story and you arent alone! I swear there is a chance that I might wear my undies on my head instead of my butt.
I am scared period because my brain doesnt function fully.
Remind people to not just someone else till they have walked a mile in their moccasins.. You know what your capabilities are at any time. So live abidingly.
I used to know what my capabilities were at any given time, but not anymore. Sometimes, I don't even know who I am
Hope you are married and feeling better. MS because the symptoms are so weird and unpredictable makes one feel like they're going nuts Have been at this 24 years and today is one of those days. I think it helps to say I'm having a bad MS day today. And deal with tomorrow when it happens. Crazy making too because yesterday I had a fairly decent day. Hang in there knowing there are a whole lot of us right there with you.