Multiple
Sclerosis is real. Its symptoms are not imagined. It’s not caused by a person’s
lifestyle or by an unhealthy diet. There isn’t a specific cause for MS and
to this day there is still no known cure.
Developing
an illness like MS is not our fault. Nobody knows why we got it or where it will
lead. Yet I often feel that if I had done something differently or tried
harder, the outcome might have been different.
If you’re me, you hear
these things all the time:
“She cut out gluten and
started doing yoga and she does not have
MS anymore.”
“Stay away from MS
drugs and Western medicine.”
“Go vegan.”
“Go Paleo.”
“I know someone with MS who runs marathons!”
I was diagnosed in 2011
and have already progressed to Secondary Progressive MS in less than five
years. Should I have taken up yoga and gone vegan the second I was diagnosed?
Maybe. But I was in a “newly diagnosed” fog and was just trying to get a grip
on my new life. Besides, I’d been misdiagnosed for 10 years. I had spent those
years trying to figure out what was wrong with me. I didn’t know what I had let
alone how to fix it.
I think a healthy
lifestyle and a positive attitude is important; Eat healthy, don’t smoke, and
everything in moderation. I wouldn’t abandon conventional MS treatment for alternative therapies, even if they're natural remedies. Blend complementary
and alternative medicine, or “CAM therapies” with traditional medications. Find
a doctor you like. Be your own advocate.
A
friend of mine once said, MS is a neurological disease not a muscular one. I
have to remind myself that no amount of exercise will fix me. It is possible to do all the ‘right’ things, exercise, eat properly, avoid
stress, and so on, and have a recurrence of the disease. It is also perfectly
possible to do all the ‘wrong’ things and not have a recurrence.
It’s not my fault. There’s nothing I did to get
the illness or make it worse.
All I can think is "utterly frustrating." Not necessarily because you need something to blame, or to blame yourself, but because of all the unknowns. Too many unknowns & too many anecdotes. You can only figure out what works & doesn't work for you, and that process sounds daunting. I don't envy you. I can only hope you find the best way(s) to keep yourself as healthy as possible as soon as possible.
ReplyDeleteI also have had these same problems. I have a lot of medical issues that are the result of birth defects from DES--a drug that had an off label use as an abortifacient in the 70s. Many people have pushed their amazing 'cure' on me. They're aggressive and/or persistent. Recently a friend who is a family counselor wrote a Facebook post about how these MLM companies have fleeced a lot of people and ruined friendships because the sellers are encouraged to push their products on friends and family.
ReplyDeleteMany people got extremely angry, and they said that they didn't understand why friends refused to use their products which would 'completely cure' them. They acted like they were in some sort of cult and had drunk the kool-aid. The way they kept insisting that their snake oils would completely cure everyone's problems reminded me of how Tom Cruise was sofa jumping.
I've had people follow me around church and even at my in-law's 50th anniversary party and get aggressive when I said no. She even talked trash behind my back about how stupid and pathetic I was because I refused to use her 'cure'--she said that I "just wanted attention and didn't really want to be cured". Thankfully the women she talked to knew me and told her she was being a real bitch and her snake oil wouldn't cure my problems. She wouldn't even give me a list of ingredients for her $50 a bottle juice even though I explained I had life threatening food allergies. Even though there was a big chance that the juice contained the foods that I was allergic to, she insisted that "it was worth the risk". My heart problems make using my EpiPen life threatening as well. My MIL was furious at her and later read her the riot act. (we didn't tell her that evening because we didn't want to spoil her evening)
People have claimed that their snake oils have cured serious illnesses in their families so it will cure me. When I ask for details, it turns out that the 'serious illnesses' are common colds, seasonal allergies, and 'the flu'--stomach cramps and stuffy noses aren't 'the flu'. The same goes for diet changes like only eating yogurt or leafy greens or nasty smoothies. (I have chronic pancreatitis from pancreas damage due to a very small bile duct tree from a birth defect. I'm not allowed to have a lot of fiber or complex carbs--I've had acute pancreatitis which can be life threatening because I've eaten too many vegetables and/or salad.)
It's insulting that people insist that serious illnesses like autoimmune with neurological damage and cancers are the same as a bad cold. Big pharma isn't the huge monster they insist it is--the prescription medications I take give me quality of life. Going off these meds and "treating" my problems with essential oils, juice and whatever diet is "guaranteed" to heal me isn't going to take the place of these life saving meds.
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