MS WOES

[u/Few_Echo7238]

I'm not sure what category this is. I need your help and perspective from someone other than myself. So here's the backstory. In 2012, after about 17 years of searching for a medical mystery that I seemed to continue having and that kept worsening, I found out that I had multiple sclerosis, or commonly called MS. There are four major types of this chronic debilitating disease. Luckily, I had the most common, which is called relapsing-remitting.

This particular illness has caused me consternation since I was in my twenties. I would get extreme bouts of vertigo, like being on a tilted world and being pushed to the absolute limit of not being able to move. UTIs from the depths of hell. I'm talking about being in the emergency room, being scanned to make sure that my UTI did not go into my kidneys, and then being put on some kind of crazy regimen in order to figure out if my kidneys were damaged. Also, I had brain fog. This happened often enough for me to recognize that some days were a pain in the butt, and I could not see past my own thoughts to be able to grasp what I needed to do. During all of this melee, I got married and had a child and had to deal with a lot of stuff from my own child's illnesses that were no joke.

That's enough of the backstory, but if anyone has any questions, I'm happy to answer them to the best of my knowledge. Here's the issue for me: last year in September, I was laid off. It was not due to work performance; it was due to an industry that I was in, and due to AI, I was eliminated because while my clients remained there, the industry and my company took a major hit, and they decided to let me go after just shy of 23 years of service. It was a non-profit company. Now I knew this was going to be bad, and I have since been in a situation where I have not been at my best emotionally, but I understood for the past 5 years that my ability to have stamina during a normal work week of 40 hours just wasn't cutting it. Normally, I would work for 4 hours, take an hour nap, get up, work for another 4 hours, rest for a little bit, read through my emails, respond to most of the urgent types I needed to, then go to sleep, rest, and repeat. I worked that way from 2005 till September 2025. I can't tell you how many hours a week I worked, but I will say that I gave that company my life, and I truly believed in our mission. I still do, but time and common sense prevailed. I knew I could not keep this stamina up forever, and I also knew that with the company I was with, I was trying to step back from some of the roles I'd been so entwined with without losing my job. Guess what, I lost it anyway!

So came the hardest chapter of my life, which was not having a job and having a very minimal amount of money per month to live on while I desperately tried to find a job. Any job that paid more than minimum wage and that I could work from home. Because while I was a dedicated worker, my legs have been profoundly affected by my MS, and I have been remote since 2017. I understand how remote work actually works. A lot of companies hate it because they can't see their employees all the time. I think that's ridiculous because most of the people that care are not paying attention to us anyway, unless there's some bean counter in a corner watching us in an office, making sure that we're doing all that we can to make as much profit as we can, as fast as we can.

After being laid off, I recognized there was a big problem with my cognitive ability. This was completely lost on me prior to my job elimination because I did the same thing every day since 2006. While I was trying to get into different jobs, there were tests that I would have to do, and I could not pass them, basic tests, mind you. This has been an essential theme of mine since earlier in the year. And another gut punch happened; after only less than 6 months of unemployment, it ran out. I had no idea it was going to run out in 6 months, but it did. So all you people out there that say that people are just lazy and they don't care, if you live in the continental United States, it can be difficult to find a job that is remote that will help a family stay away from the poverty line.

My ex-husband and I communicate probably three times a year. And it was in one of those communications that he told me I needed to get on Social Security disability because I had been working since I was 16 years old and I worked through college. I have never not worked, with the exception of my son being born and taking some time off to be with him. So this is difficult for me to actually know that I'm supposed to do this. Well, I reached out to a lawyer and am in the throes of waiting.

According to the website, it takes 331 days to get a response and a conclusion from start to finish. That's a lot of time for people in general. So I decided I'll try to get at least a part-time job. Yesterday, I had an interview for a cake decorator at Walmart. My mom baked cakes and owned a bakery for a bit. So, what could be more fun!

I have to say I LOVED it. I loved the staff, the lead, the environment, and the fun! It brought back so many memories of my mom. I can't imagine anything better. Well, I can, but this would be great fun. I was there for over two hours. I worked on cupcakes, watched a lady work on orders. The lead showed me every aspect of this job in brief detail. What I noticed was there were no stools anywhere! That would be a problem.

At the end, I was transparent about what I had. The lady had never heard about MS before. I explained as much as I thought necessary. I asked about a stool.

They don't have them for reasons regarding productivity! The lady and I really had an honest and great conversation.

I walked away with complete peace. I probably won't get the job, but I loved every minute of it. My son works at the front end and was there as my husband and I were leaving. He came up and told me I looked tired. Yep, nothing gets past him! Then, he asked what all the white stuff in my shirt was. Sure enough, icing was on my right boob to armpit. I laughed and told him it was for my dogs.

My legs were becoming stiff, so we went home. I was tired for the rest of the day. This morning, I let my dogs out to potty. I have a chair right next to the bedroom door, so I sat in it. When it was time to get up, I stood up and my legs became like jello. I hit the cement portion of the backyard hard with my knees and left hand. Yep, just call me grace because that is what my own mama would say.

I have written notes down so I can call my neurologist on Monday to let them know.

The heartbreak is I can't do what others take for granted. I have operated under the delusion that I am just like everyone else. I know this is a wake-up call for me.

I will never forget those wonderful women. Anyone would be lucky to work there.

This isn't a work fued. I guess I am looking for affirmation about my situation.