Hello everyone, it's Fancy1959. I was just inspired to write this post by MS_Indestructible. Sometimes we feel so alone with our disability and we forget the many things we experience are typically experienced by majority of people in this chat room. So I created this post to ask everyone if they're still working and how long it's been since they were diagnosed. What stage of MS are diagnosed in etc.
I will start the topic out by letting everyone know that I had Ms 12 to 15 years prior to my diagnosis. When this monster hit me it knocked me flat on the ground in about 2012. I and then diagnosed in relapsing and remitting stage of MS. But over the course of about 2 years my disability steadily increased. Much of that, I believe, was brought on by the stress I was put under at work. So back in the spring 2014, I made the tough decision which was the only decision I could. With my disability steadily increasing and things happening to me that I wasn't prepared to allow to happen, I quit working.
To give everyone an idea of what was happening to me when I quit the following is a list of the symptoms that drove me to quit. My hand dexterity was taking a big hit and steadily decreasing. I was getting in trouble at work because my handwriting became more and more unlegible so I started typing everything instead but that did not make the powers to be at work happy. Once again they were impossible to please. My bladder became more and more demanding. I managed to control it most times but occasionally I had accidents so I always kept a sweater on the back of my chair to hide the evidence until I can get to the bathroom to clean up. I started to develop larger holes in my memory. As an example, one day I found myself standing in front of the printer on my desk wiyh copier paper in hand forgetting what I was going to do and where I was going to do it until one of my guys that I supervised took the paper out of my hand and put it in the printer. I had a great group of people that I supervised and they seemed to understand the stress I was under and the slippage of my mental and physical capabilities. They were awesome and covered for me quite a bit. I dealt with this decline for about two and a half years but then things took a turn for the worst . Over Christmas break we took a family vacation and had an awesome time. Right before I went back to work, I started to pass out and have weird experiences. Passing out really scared me and I immediately thought into my then neurologist. He told me he felt that the passing out and weird signs all pointed toward episodes of pre seizure activity. I was not prepared to deal with seizures then or anytime in the future so that made my decision very easy. I decided I wasn't going to allow work to kill me or make me so disabled that I was unable to have any quality of life. So, I simply quit work and never went back in. Within 6 to 8 weeks the mysterious experiences I had been experiencing disappeared and I never looked back.
That's my story..... What's yours?
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Fancy1959
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I was finally diagnosed in December 2016 and am still working full time as a civilian. I retired from the Army Reserve with a little over 30 years of service and had planned to do another 2-3 years to see if I could make it to CW4. My chances for promotion were really good except for one mandatory school that I hadn't been to yet. I started my retirement paperwork the same day I got my final diagnosis. I felt that an unreliable central nervous system depending on the situation not only put me in unnecessary danger but put everyone around me in unnecessary danger as well. I wasn't having that. I've never regretted that decision for an instant.
Because of memory and fatigue issues I'm not sure that I'll be able to make it another 8 years to full retirement as a civilian. Only time will tell.
I was diagnosed 5/15/18 after 3 - 4 years thinking the neuropathy was because of a pinched nerve from falling...
I was diagnosed with Primary Pregressive, but they/I won't know until the 1 year mark.
I'm still working 40 hours, much to boss chagrin. He told me yesterday that I should work 3hrs a day, 3 days a week. He only said this after a meeting he had with others that saw me and noticed how terribly skinny I've become (5"5'/99 lbs). I eat only good food (fruits, veg, proteins) aND the ocassinoal Poptart. I told him to stop listening to others and to trust me. I'm seeing a Nutritionist today to get to the bottom of this dilemma. I think all the running around at work is good for me physically, it's only when I'm not that the Spaticity becomes worse. That's my short history of this perplexing disease. I can't wait to hear everyone else's stories.
I was diagnosed in May 2000. At the time I was in college to become a teacher. A wise counselor told me to just graduate without the teacher certificate and focus on my health.
I am working as a substitute teacher almost every day. It’s a better balance for me. I don’t have to create lessons or grade homework, do meetings or further training.
I love that I get summers off and can say no to a job if I want. I just wish I got paid better for all the work I do!
First off, I'm assuming you were born in 1959, as was I. To answer your question. I was diagnosed ON MY BIRTHDAY at age 39 (1998) in the hospital on heavy duty steroids for my 2nd or 3rd? bout of optic neuritis, of which I have had at least 7 times to date. Yes, relapsing remitting. Had just about everything including some all time greatest like vision similar to an old TV with a broken vertical hold. Worked for 12 years, having to be driven at times to all my stops because I couldn't during this and that relapse. Drove only thanks to Provigil/Nuvigil, though I don't think the air force allowed their pilots using these drugs to still fly nodding off on them. I fit right into Chicago's worst neighbor hoods walking into the sides of buildings, just like the drunks and druggies, many passed out on the streets. I learned to climb ladders without use of my legs.... Thank god for day-timers (remember those?), because although my memory was still great compared to today, they kept me going. Along with voice recorders.... Now a days with "smart phones" which can do it all, yeah that's too much for this retired engineer/multi-business owner who once even ran a multi-national manufacturing plant in a foreign county as a "kid" anymore. I finally caved in after 12 years after diagnosis, more since the first..., at the recommendations of my (2) neurologists and my D.O., sold my remaining business (sold the other off years earlier post diagnosis), but YES, stress definitely fuels the M.S. fire! As owner of a very successful business which was stress-wise always compared to air traffic controller. Nope, ATC's had it easy. With the health and safety of the public in your hands.....Yep, Chicago was always safe under our watch....BUT it did a number on me making sure everyone was.
So, did it help? Retiring early? Well, I got much much worse for at least a couple years after "retiring". Went essentially comatose. (Severe brain fog as per the Neuros' diagnosis.) Stopped eating till late in the day to stay "alive". To cope, I found if I ate only late in the day, then I went comatose and straight to bed. Then found "nutrition". Took years, but I'm great now. Yes, I still have all the "M.S. badges", just like a boy scout! All those symptoms that didn't go away. But I can now do 10K steps with a cane easy! Long answer I know. Tired reading yet?
Don't feel bad about hanging in the towel. You still have a hell of fight to go. And you can never hang in that towel if you want any kind of a life. LIFE IS GOOD! FIGHT FOR IT! Give it everything you've got and then some! Yes it is HARD. Harder than the working days. But it can be GREAT! Even with all the XXXX's like living knowing every bathroom at every moment, and what to do if there simply aren't any...........Forgetting why you went to the next room now that you're there..................... Yes you will miss the old life. But you will now have all the time you never had. That's good, because it will take so much longer to do anything! LOL! You're just moving on. That's GOOD! Don't stop moving. One step at a time, till you can accumulate AT LEAST 10K/day!
Hello Fancy1959 ! My situation with working is a bit different. Before I was able to find out what was going on with me until last fall, I was fired from many jobs (5 over the past 8 years) because eventually, after being hired, I had to call in sick and missed a lot of time (attendance). The last time I worked was in 2016, that job lasted 7 months before I realized I just couldn't do it anymore. I was in manufacturing for most of my adult life, 18 years. That's when I applied for disability, which destroyed the relationship I was in at that time, and also when I became homeless. I didn't have the skills to look for a sit-down job, nor any confidence in myself to get them. Fast-forward to now, I finally have a place to live and get disability from the state, but it's not much. Still waiting on federal disability, for a hearing to be scheduled. I have been trying to find a job through Michigan Rehabilitation Services, but they haven't been able to help me find a job that I can do that's just part time, based on my skills, experience, limitations, and doctor's medical evaluation. Sorry so long, just wanted to let you know about my situation regarding working. ❤🙂
Ty for sharing your story! I find everyone’s very interesting.
I was 20 when I had ON for the first time, but I didn’t know that’s what it was and didn’t get a MRI. It was not painful, I just had central vision loss for 2 weeks. I think about 7 years ago is when the weird crap started happening to me and the frequency increased to every 8 months. After being misdiagnosed, I thought I was going to die in my sleep for a few weeks because the Lhermitte’s was so strong. I took a break from working after that and it resolved completely in 3 months (heh, or so I thought!). 2 years ago I had another painless ON episode and the vision loss remained, which is how I got diagnosed. I had just returned to work part time, but still working 12 (ahem, 14hrs more like it) hour shifts. After a while I went to 8 hour shifts, but my company cut out that shift entirely and I’ve retired. Now I see how horrible my job was for my health, something that my MD and husband were right about but I wouldn’t listen then. I was diagnosed with infertility and MS at the same time 😂😵
My story since then has been shared here quite a bit. I still think being a stay at home mom is the best job ever 😍
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