Shhhhhhh....MS dirty little secret
Last updated: June 2023
Shhhh... MS' dirty little secret
Only a small percentage of MS patients suffer from disinhibition, impulsivity and lack of insight. For me, they happened together - a trio of destruction.
Disinhibition is one of the rarest behavioral symptoms of MS and only a very small percentage of people are affected. It is linked to MS-related damage in the brain.
Disinhibition runs the whole gamut of activities: sexual, financial, driving, working, leisure activities. Behaving in a way which sufferers would have considered outrageous previously. It is important to recognize that people experiencing this symptom cannot control their behavior.
Impulsivity. People experiencing disinhibition lose control over their impulses. This can lead to inappropriate behavior, from blurting out ill-thought out comments, acting on sexual impulses, or accruing massive debt. There's a loss of sense of our own and societal rules. Lack of insight. We may have little or no awareness of others' feelings regarding our actions and have no insight into the way our behavior affects others.
In the past two years, I have spent $37,000 (thousand!) on one casino gaming site. Playing slots - using real money for fake chips. Using credit cards with disgustingly large limits and previously paid balances.
My husband has always been financially responsible and retired early. Not that we had huge amounts of spare money, but we live simply - through choice - and my job provided health insurance and money to pay household expenses. I was also fiscally responsible for the first 15 years of our marriage.
Late 2012, I knew something was terribly wrong with my brain and legs and told my GP, "I either have Lyme's disease or MS. And I'm not having MS." Six months, four MRIs, one lumbar puncture and three neurologists later, it was confirmed I did have RRMS. And it dated back at least five years, probably more.
I began physical therapy to help my balance, and a pharmaceutical regime that includes anti-depressant, anti-anxiety, bladder control, bowel control, and the newest DMD, Tecfidera. But as my neurologist told me at my last appointment, "We need to remove the word 'remitting,' because there is no remission from the brain damage that's been done."
So, just as I was beginning to adjust to life with MS, I discovered it has the capacity to literally change how one perceives things, can block emotions, can change personalities...
In the past, I enjoyed a real casino a couple of times of year, but never had an addiction and only played within my budget. It's also something I shared with my parents. They, too, were responsible, making sure bills were paid, etc., before even considering going "cha-chinging ." After my beloved father died in 2011, my mum only had me to share this with her, once a year, when I flew to where she was living at that time. We had the best of times together, holding hands and enjoying each other's company as we played.
Two years after my dad died, my husband and I helped my mum and younger sister move to our state. My sister had been dad's co-caregiver during his short but hard fight against pancreatic cancer. My sister remained to look after mum, who, originally from London, had never learned to drive.
There followed an unusually hot summer (now the norm it seems) where my previous 'sensitivity' to heat became 'intolerable.' The fatigue, pain, vision problems, cognitive issues - everything that had forced me to the doctors in the first place - grew increasingly worse.
Then my beloved mum got sick. Six months after beginning her new chapter, she was diagnosed with stage 4 lung cancer. She had quit smoking a decade before. Without hesitation, my sister became her caregiver: 24/7. I did what I could, given my limitations. My husband helped financially, purchasing whatever mum needed. But I can't imagine what my sister went through, doing this for a second time, with our remaining parent.
It was shortly after mum's diagnosis, I discovered BigFishCasino was nothing like a casino - no flashing lights and jangling music (I have the sound on mute). THIS game soothes my jiggling eyes, calms my chaotic brain: a non-thinking game. A real escape! The graphics are clear and crisp. The rate of spin soothes me and often I fall asleep playing. Sleep is a precious commodity.
So I purchased chips. And kept purchasing chips. I felt no guilt, no remorse - if I felt anything, it was that I 'deserved' this; that was helping me. I was ignorant of the financial impact. My sister replays to me that when I told her and mum, I was so nonchalant, commenting, "Oh, I pay the minimum on the credit card bills every month." But the balances were growing.
The effect on my husband was devastating. He has an anxiety disorder and one of his triggers is - you guessed it! - finances. I couldn't explain it to him. It wasn't until an appointment with the neurologist that we both understood it was the MS. Right there on my MRI were the lesions, in specific places, that was causing this monster. A hidden, rare, very dark side of MS.
I'm working on it. I found an excellent psychiatrist every fortnight. She helps me recognize triggers, find alternatives, and prescribed Ritalin to help with focus. My employer allowed me to go part-time for the past two years. But still we can't rest easy.
My mum died nine months after dx. I spent more. We sold our home in the country and moved to the city. I spent more. My employer recently told me they could no longer accommodate me. I spent more - even knowing I would soon be without a paycheck and medical benefits.
But I AM learning to recognize the signs and to replace those actions with others. Like knitting and crotchet. Mum re-taught me as she was going through treatment. I'll never be able to follow a pattern but we'll never be without scarves and blankets. Work is my #1 stressor. That will soon be out of my life. I'll be able to do other things to my abilities, not try to do a job whose main requirement is the ability to multi-task: something I can no longer do.
I've tried to keep this simple, but anyone with MS, and their caregivers, will know - there's a lot more in this story than I could say. It's taken three months to write this post. There's a lot to look forward to. I remain blessed with family, friends, pets and an excellent medical care team. My next step is applying for disability. Hopefully that won't be stressful. I remain determined this dreadful disease won't steal me. I'll work with it, but it won't steal who I am.
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