I have had symptoms since probably my early 20s.The diagnosis was bittersweet in that it was a relief to have a reason for how I felt, but then where do we go from here? I’ve always been a free-spirit - kind of a scatter brain to my family. Always losing things, totally disorganized, forgetting, etc. but it got progressively worse to the extent I was spending most of my time looking for things or forgetting what I got up for. I put off paying bills, getting the car fixed, medical appointments, showering, grocery shopping, and during the last 12-18 months I found I found it hard to even get off the couch. I couldn’t wait for the weekends so I could just hide on the couch and eat and sleep. I started cancelling social functions because I wasn’t “up to it”. The symptoms were there all along. I remember in my thirties having unexplained pain which I now realize was the MS Hug. Pain while walking, crazy temperature fluctuations, bizarre burning in my arm and tons of physical therapy but the problem wasn’t my arm. Apparently it was MS.
I’ve worked in HR my whole career life and was promoted to
Vice President within a year at a large government contractor in the DC area. We went on an executive retreat to Jamaica and I brought my little sister. She’d already told me that while she stayed at my apartment for a few days before the trip, that I seemed more unorganized and confused as ever and that she’d never seen it that bad. While on the retreat, I lost control of my bladder and was mortified that I would do it again during my presentations the rest of the week. As soon as I got back to town, I went to my primary who thank God was out. She never would’ve referred me to neurology. Some other doc was there and said definitely neurology. In northern VA it takes about 2 months to get a neurology appointment. The doctor got me in the following week and the neuro did some tests and said yeah, looks like M.S. but let’s run the MRI’s. The results showed that the white matter lesions on the 2007 MRI (what?!) are all now larger. In addition, there are several in both hemispheres, the brain stem, the floor of the right ventricular, and in the C3 part of the spine. They also noted a chiari malformation which sunk a bit lower since the 2007 scans. Damn.
This explains why I could never ride a bike. I just couldn’t figure out the balancing. The fam would joke about it but it became a physical thing where I noticed I couldn’t walk downstairs without my legs shaking. I just thought I was weird or it was arthritis related since I have that too. Because of the arthritis, I’ve ignored the pain I’ve been in for at least 20 years, as I was diagnosed with psoriatic arthritis at 20. I’ve not been one who enjoys narcotic pain killers so I self-medicated with other stuff and killed a few heating pads along the way.
During the last 18 months, I’ve been increasingly isolating myself on the couch and would love nothing more than to feel free to do that forever. I don’t now though, because I live with my son and his family for a bit and feel as if I’m being lazy if I do that. They wouldn’t think that, but I’ve always been very active, into fitness since my kids were little, etc., so I feel compelled to get up and do something. I noticed at work, I was taking inordinate amounts of time to write emails. Like 3 hours for a 2 sentence email. Most of my emails were beginning with the words “my apologies for the delay”, and I missed both the executive stand-up meetings, as well as meetings I scheduled for my own staff. They had to remind me to do all kinds of things, I began missing deadlines, asking for extensions, working 14 hour days to get the work done, and in the midst of it all I nearly had a nervous breakdown. I thought I was just in some black depression, couldn’t get my shit together and was pretty much failing at life. I did some seriously dangerous self-medication and then was finally diagnosed. It all started to make sense now.
I was put on tecfidera, provigil, and bupropion. More recently I’ve been experiencing crazy stiffness and pain in my hips and legs, and am moving much more slowly than normal so the docs just prescribed baclofen. It scares me to take it three times a day as prescribed, because I’ve read some blogs where people experience immobility. I get it, since it’s a muscle relaxer, and I’ve used it a couple times when it’s really needed, but I’m still hesitant to use it more.
While I was diagnosed in May, I didn’t stop working right away and thought the meds would just clear it all right up. I was also taking it pretty lightly and continued to work super hard, not sleep right, and in a year’s time I only slept in my bed about 5 times. So sleeping on the couch wasn’t doing me any favors either. I pushed and pushed and continued to apologize to my team for forgetting and for my moods (lots of crying, very sensitive), and finally gave in and went on FMLA at the end of August. Since my position was key, I advised they find a replacement and so now I’m on disability and have, maybe temporarily or permanently, ended my 23 year HR career. That was hard. So much emotion. I’ve taught my kids a pretty strong work ethic, and always prided myself on my passion for my work. That was so hard to walk away from and caused some pretty terrible depression. What do I do now? Clean? Draw? I definitely have the sleep thing down. Anyway, that’s my story and I’m still figuring it all out, so I look forward to chatting with others on the site. Happy Day! :)