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Can Marijuana Be The Answer For Pain?

Like many of her friends, Alexandra Callner, now 58, experimented with recreational marijuana when she was younger.

“I had tried it, and hated it, in my 20s,” Callner says. “When I was around pot smokers, I thought, ‘Ugh, losers.’ ”

But, that was before her knee arthritis became so bad, it robbed her sleep, night after night. She took two over-the-counter pain pills a day, but the pain would wake her up at night. And the drugs were hard on her stomach.

“It was making me kind of nauseous,” she says of the nonsteroidal anti-inflammatories. Plus, she needed to stay active to manage her dog boarding service in Pasadena, CA.

Then came another solution. “A neighbor said, ‘Try this,’ ” Callner says. It was a joint.

Callner got a medical marijuana card, and then she tried it. “I slept through the night.”

That was a year ago, and it’s now her nightly ritual. “Every night, I get into bed, read about an hour, take one or two puffs, and then I am off to sleep,” she says. “The pain is much lighter.”

About 50 million Americans like Callner live with chronic or severe pain. Patients and doctors are seeking treatments besides the potent prescription painkillers like opioids and the nonprescription medicines that Callner found tough to tolerate.

So could marijuana be the next pain reliever of choice?

Lack of Research

Donald Abrams, MD, a professor of clinical medicine at the University of California, San Francisco, helped review research on marijuana for a 2017 report from the U.S. National Academies of Sciences, Engineering, and Medicine.

There is a lack of evidence about the health effects of marijuana, he says.

Adds Angela Bryan, PhD, professor of psychology and neuroscience at the University of Colorado, Boulder: “The evidence we have thus far suggests that cannabis is moderately effective for pain relief.” But most studies haven’t compared marijuana with other ways to relieve pain, she says.

Cannabis is the scientific name for the marijuana plant. Researchers prefer to use “cannabis” instead of “marijuana” because marijuana is associated with recreational use, Abrams says.

Why the lack of evidence from research in the U.S.?

Although medical marijuana in some form is legal in 30 states and Washington, D.C., it’s still illegal on the federal level. It’s classified as a Schedule I drug — putting it in the same category as other drugs of “high potential for abuse” that have ”no currently accepted medical use,” such as heroin and LSD.

That means federal rules put limits on what researchers can do.

“In the state of Colorado [which allows medical and adult private use], I can go to any dispensary and buy whatever I want to treat whatever I want,” says Bryan, who’s also co-director of the CU Change Lab, which explores health and risk behavior. “You would think that means researchers can, too. The problem is, researchers are in a federal institution [at the University of Colorado]. If we do anything in violation of federal law, we could have all federal funding withdrawn.”

Bryan’s team has grants for four research studies on marijuana, including one on lower back pain. Participants come to the university for their initial assessment, but then must go to the dispensary on their own to buy the marijuana, she says. Declassifying marijuana as a Schedule I drug would make her research easier, Bryan says, or at least as easy as alcohol research.

“If I want to do a study on alcohol, I bring someone in, give them wine, get blood [samples], and see what happens when they use alcohol.”

Bryan says she could use marijuana supplied by the government. The Drug Enforcement Administration (DEA) issued a license to the University of Mississippi to cultivate marijuana for research. The marijuana from dispensaries is different and more potent  than that supplied by the National Institute on Drug Abuse farm, she says.

Patient groups, including those for veterans, are among those pushing for more research. Nick Etten, a former Navy SEAL, founded the Veterans Cannabis Project in 2017. “We are bringing stories to the Hill,” he says, ”of veterans who have found relief from their health issues through cannabis.” He reaches out to individual U.S. legislators, he says, to elevate marijuana as a health issue and to persuade them to declassify marijuana.

In 2016, the National Football League Players Association created a pain management committee to study ways to help players deal with injuries and chronic pain, says Brandon Parker, a spokesman. “Marijuana is just one of several alternative pain relievers being studied by the committee,” he says.

Research Scorecard

The National Academies’ report looked at data from 1999 on, reviewing more than 10,000 scientific studies, of which only seven were directly related to pain relief. One of the seven looked at data from 28 studies.

Abrams says the evidence on marijuana and pain is strongest for helping nerve pain (neuropathy) and cancer-related pain. The committee also concluded that certain oral cannabinoids improved muscle spasms in patients with multiple sclerosis.

Cannabinoids are one of more than 60 chemicals in the cannabis plant. Abrams says it makes sense that marijuana may help relieve pain because the body has cannabinoid receptors, or places where the chemical attaches to cells.

Cannabinoid
The above wheel serves as a resource to determine which cannabinoids
may help treat symptoms associated with mood, eating/gastrointestinal disorders,
neurological disorders, pain, sleep disorders, and other medical conditions.

Here is a sampling of research or reviews published in the past year:

  • Israeli researchers found marijuana gave substantial pain relief to more than half of 1,200 cancer patients who used it for 6 months.
  • In a review of 16 published studies including more than 1,700 participants with chronic nerve pain, German researchers found that marijuana-based remedies increased the number of people who reported a 50% or more reduction in pain relief. But they also concluded that the risks may outweigh the benefits. People taking marijuana-based remedies were more likely to have sleepiness, dizziness, and confusion.
  • In a small study of 47 patients with Parkinson’s disease, Israeli researchers found a 27% improvement in pain with marijuana use.
  • Medical marijuana helped to ease pain in 26 patients with fibromyalgia, a condition in which the body has ”tender” points. Half the patients stopped taking any other medicines for fibromyalgia, but 30% did have mild side effects.
  • A study from the European Academy of Neurology found that cannabinoids given at various doses eased pain in migraine patients by 40% or more. It helped cut pain in people with cluster headaches, too, but only if the patient had a history of childhood migraine.
  • Marijuana and cannabinoids may have modest effects on the pain and muscle spasticity that come with multiple sclerosis, according to an Australian review that looked at 32 studies.

Not for Everyone

Experts also saw potential downsides to marijuana. The European Academy report found that marijuana use may:

  • Make you more likely to be involved in a car accident
  • Raise the chance of unintentional marijuana overdose injuries among children, something that has happened in states where marijuana use is legal
  • Lead to more frequent bronchitis if smoked on a regular basis
  • Raise the odds of having schizophrenia and, to a lesser extent, depression

Smoking marijuana is also linked to delivering a lower birth weight baby, although the relationship with other pregnancy and childhood outcomes is not clear, the report says.

Abrams says marijuana can raise heart rate and either raise or lower blood pressure. Frail older people with balance issues have a risk of dizziness and falling.

Will Marijuana Replace Opioids?

Some research suggests that marijuana could take the place of opioids. Two recent studies found that states with medical marijuana laws or legalized recreational use may have a decline in opioid prescriptions.

In another study, researchers polled nearly 3,000 medical marijuana patients, including about a third who said they had used opioid pain medicines in the past 6 months. Most said the marijuana provided relief equal to their other medications, but without the side effects. While 97% said they were able to lower the amount of opioids they took if they also took marijuana, 81% said that taking marijuana alone was more effective than using both marijuana and opioids.

That finding makes sense to Alex Jordan, 29, an artist who works at the Green Valley Collective, a marijuana dispensary in the Los Angeles area. She manages her chronic pain with daily use of marijuana joints and products that contain cannabidiol (CBD), a cannabinoid.

Her experience helps her guide her customers, who range from young adults to those over age 80, to an effective remedy. “I would say 60% of our users use [marijuana] to manage some kind of pain, whether it be physical or mental,” she says.

Without it, her pain is severe – usually a 4 to 7 on a 10-point scale, she says. It started after she was in a car accident in 2011. The van she was riding in hit black ice and flipped seven times. The accident left her with a broken sternum (breastbone), six broken ribs, six crushed vertebrae, and collapsed lungs, making breathing difficult. Morphine helped relieve the pain in the hospital. Later, she says, “I could get any pill I wanted” for pain relief. She wore a neck brace for 2 months and a back brace for 6, but the pain persisted.

She wanted off the potent painkillers and had used marijuana recreationally in years past. She experimented with different options until she found her current regimen. And to make access easier, she and her husband moved from New York City to Los Angeles, where recreational marijuana is legal, last year. Before the move, the pain had gotten so bad, she had trouble putting on a shirt. These days, she’s working regularly and branching out as a freelance artist.

“The lack of pain is a wonderful thing,” she says. “It brings me to tears.”

 

By Kathleen Doheny        April 20, 2018
WebMD Article Reviewed by Arefa Cassoobhoy, MD, MPH on April 20, 2018

Sources

Article: Can Marijuana Be The Answer For Pain?
The National Academies of Sciences, Engineering, and Medicine: The Health Effects of Cannabis and Cannabinoids: The Current State of Evidence and Recommendation’s for Research,” January, 2017.
National Conference of State Legislatures: “State Medical Marijuana Laws.”
National Organization for the Reform of Marijuana Laws (NORML): “Legalization.”
Donald Abrams, MD, oncologist and professor of clinical medicine, University of California, San Francisco.
Angela Bryan, PhD, professor of psychology and neuroscience, University of Colorado, Boulder; co-director, CU Change Lab.
Nick Etten, founder, Veterans Cannabis Project.
Brandon Parker, spokesman, National Football League Players Union.
Alexandra Callner, owner, Spoiled Dog Pet Care, Pasadena, CA.
Alex Jordan, artist; budtender, Green Valley Collective, North Hollywood, CA.
JAMA Internal Medicine: “The Role of Cannabis Legalization in the Opioid Crisis.”
European Journal of Internal Medicine: “Prospective analysis of safety and efficacy of medical cannabis in large unselected population of patients with cancer.”
Cochrane Database System Review: “Cannabis-based medicines for chronic neuropathic pain in adults.”
Clinical Neuropharmacology: “Medical Cannabis in Parkinson Disease: Real-Life Patients’ Experience.”
Journal of Clinical Rheumatology: “Medical Cannabis for the Treatment of Fibromyalgia.”
Current Neurology and Neuroscience Reports: “The Use of Cannabis and Cannabinoids in Treating Symptoms of Multiple Sclerosis: a Systematic Review of Reviews.”
World Health Organization: “Cannabidiol (CBD) Pre-Review Report,” Expert Committee on Drug Dependence Thirty-ninth Meeting, Geneva, Switzerland, Nov. 6-10, 2017.

 


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Fun Fact Friday

  • Simply looking at a photo of someone you love can help relieve pain.

  • Scientists usually omit left-handed people from tests because their brain works differently.

 

  • Pretending you don’t have feelings of anger, sadness, or loneliness can literally destroy you mentally.

  • Chocolate milk was invented in Jamaica.

 

Happy Friday!
source: @Fact


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Poor Sleep Associated With Higher Risk Of Chronic Pain

(Reuters Health) – People who sleep poorly may be more likely to develop a chronic pain condition and have worse physical health, a study from the UK suggests.

A general decline in both the quantity and quality of hours slept led to a two- to three-fold increase in pain problems over time, researchers found.

“Sleep and pain problems are two of the biggest health problems in today’s society,” said lead study author Esther Afolalu of the University of Warwick in Coventry.

Pain is known to interfere with sleep, she told Reuters Health by email. But the new study shows “that the impact of sleep on pain is often bigger than (the impact of) pain on sleep,” she said.

Sleep disturbances, she added, contribute to problems in the ability to process and cope with pain.

Afolalu and colleagues reviewed 16 studies involving more than 60,000 adults from 10 countries. The studies looked at how well people were sleeping at the start, and then evaluated the effects of long-term sleep changes on pain, immune function and physical health. Half the participants were tracked for at least four and a half years.

Overall, sleep reductions led to impaired responses to bacteria, viruses and other foreign substances, more inflammation, higher levels of the stress hormone cortisol and other biomarkers related to pain, fatigue and poor health. Newly developed insomnia doubled the risk of a chronic pain disorder and hip fracture problems, the study authors wrote in the journal Sleep Medicine.

Deterioration in sleep was also associated with worse self-reported physical functioning.

At the same time, researchers didn’t find links between increased sleep and less pain or arthritis, although they did find that improvement in sleep was associated with better physical functioning.

One limitation of the analysis is that the studies relied on participants to recall their own sleep patterns. Also, the studies didn’t all use the same tools to measure sleep quality and quantity.

Future studies should look at sleep patterns for different groups of people and how that affects health, Afolalu said. Her team is now analyzing data from the UK Household Longitudinal Survey to understand sleep, insomnia and health for people with arthritis.

Additional studies should also investigate how sleep deficiency leads to chronic pain disorders, said Dr. Monika Haack, who studies sleep, pain and inflammation at Harvard Medical School’s Human Sleep and Inflammatory Systems Lab in Boston.

Haack, who wasn’t involved with the new research, said in an email, “It is also important to identify whether there is a specific sleep pattern that is most dangerous for pain. For example, does sleep disruption (with frequent, intermittent awakening throughout the night) have a higher impact than a short but consolidated sleep?”

Haack and colleagues recently reported in the journal Pain that restricting sleep on weekdays and catching up on the weekends led to more pain. Furthermore, people who caught up on weekends had a tougher time dealing with pain than those who slept eight hours every night.

“In those already suffering from chronic pain, it is of critical importance to incorporate sleep improvement strategies,” Haack said. “And to have sleep specialists as part of the pain management team.”

SEPTEMBER 19, 2017    Carolyn Crist
SOURCE: bit.ly/2xcwb8b Sleep Medicine, online August 18, 2017.    www.reuters.com


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Fun Fact Friday

  • People who speak two languages, may unconsciously change their personality when they switch languages.

  • Cuddling has the same effect on your brain as taking painkillers.

 

  • Your mind spends about 70% of it’s time replaying memories and creating scenarios.

  • When a person becomes more likeable because they are clumsy or make mistakes, it’s called the “Pratfall Effect.”

Happy Friday!
 source:   factualfacts.com   https://twitter.com/Fact   @Fact


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More Sleep Can Lead To Less Chronic Pain: Study

A new animal study, published in the journal Nature Medicine, suggests that sleeping more and drinking coffee rather than taking analgesics can help reduce the intensity of chronic pain.

Chronic pain sufferers could benefit from combining good sleep habits, taking sleep-promoting medications at night and alertness-promoting agents such as coffee during the day, according to a joint study by Boston Children’s Hospital and Beth Israel Deaconess Medical Center (BIDMC).

The researchers first studied the sleep cycles of lab animals (mice), measuring how long they slept and their sensory sensitivity.

To assess the impact of lack of sleep on pain, the research team kept the mice awake for as long as 12 hours in one session, or for 6 hours for five consecutive days. They did this by entertaining them with games without over-stimulating them or stressing them, thus mimicking the way people watch TV late in the evening instead of going to sleep.

Sensitivity to pain was gauged by exposing the mice to heat, cold, pressure or capsaicin (found in hot chili peppers) and “measuring how long it took the animal to move away or lick away the discomfort caused by the capsaicin.”

The researchers also tested responses to non-painful stimuli, such as loud noise which made the mice start.

The study showed that moderate sleep deprivation for five consecutive days can significantly increase pain sensitivity in healthy mice.

Analgesics (such as morphine and ibuprofen) did not reduce heightened pain sensitivity due to sleep loss. The study showed that morphine in particular lost most of its efficacy in mice deprived of sleep.
The study points out that in general, patients tend to increase analgesic dosage to compensate for the loss of efficacy due to sleep deprivation, thus increasing the risk of side-effects.

In contrast, caffeine and modafinil, both of which are known for promoting wakefulness, successfully blocked hyper-sensitivity to pain caused by acute and chronic sleep loss. But the study showed that in non-sleep-deprived mice, these substances did not have any analgesic effect.

The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.” It can be acute when associated with trauma or an operation, or chronic if it lasts longer than 3 months and responds poorly to treatment.

According to the World Health Organization, one in five adults suffers from moderate to severe chronic pain and one in three of those are unable to live independently.

Relaxnews      Published Friday, May 12, 2017


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Fun Fact Friday

  • Human bones are 31% water.

  • Deja Vu occurs when your brain tries to apply a memory of a past situation to your current one, fails, and makes you feel like it has happened.

  • Women have twice as many pain receptors on their bodies than men. But, a much higher pain tolerance.

  • Studies show being ‘grateful’ helps you make better decisions and investments.

Happy Friday!
 source:   factualfacts.com   https://twitter.com/Fact   @Fact


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Fun Fact Friday

  • Alexithymia describes a person who has a difficult time expressing their feelings to others.
  • Having a large amount of hair on your body is linked to having higher intelligence.
  • Kissing is good for teeth. The anticipation of a kiss increases the flow of saliva to the mouth, giving the teeth a plaque-dispersing bath.
  • If everyone in the world washed their hands properly, we could save 1 million lives a year.

cuddle

 

  • Depressed people tend to eat more chocolate.
  • The inventor of the television would not let his own children watch TV.
  • Human saliva has a painkiller called opiorphin that’s more powerful than morphine.
  • Cuddling with loved ones releases oxytocin, a hormone which reduces stress and prevents nausea and headaches.
Happy Friday  🙂
 
source:       factualfacts.com       https://twitter.com/Fact       @Fact


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Fun Fact Friday

  • Studies show that the walking through a doorway causes memory lapses, which is why we walk into another room, only to forget why we did.
  • A man named Walter Summerford was struck by lightning 3 times in his life.  After his death, his gravestone was also struck. 
  • Long distance relationships are as satisfying as normal relationships in terms of communication, intimacy, and commitment, studies show. 
overthinking
  • Emotional pain lasts for 10 to 20 minutes, anything longer is actually self inflicted by over thinking, making things worse.
  • Just 20 minutes of exercise three days a week will increase your happiness by around 10 to 20% .
  • A sunflower is actually a cluster of hundreds of flowers.
  • Coffee is the second most traded commodity on Earth after oil.

 

Happy Friday  🙂
source:       factualfacts.com       https://twitter.com/Fact       @Fact


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Should you take Tylenol, Advil, or aspirin for pain? Here’s what the evidence says.

by Julia Belluz     August 18, 2015   @juliaoftoronto    julia.belluz@voxmedia.com

What’s the difference between Tylenol, Advil, and aspirin? Which is the best to take for pain?

I used to take acetaminophen (usually referred to by its brand name, Tylenol) for the occasional headache or sore muscle, mostly because that’s what we used in my house growing up. I didn’t think much about whether it was more or less effective than any other type of over-the-counter pain reliever, and I suspect the same is true for many folks. Acetaminophen, after all, is the most popular over-the-counter painkiller worldwide.

So I was surprised when I found out there’s a huge gap between how pain researchers think about this drug and how the public does. More specifically, every researcher I contacted for this piece said some variation of what Andrew Moore, a pain researcher at Oxford University, told me: Tylenol doesn’t actually work that well for pain. To be more exact, “I can’t imagine why anybody would take acetaminophen,” he said.

Moore has done a number of systematic reviews on over-the-counter pain medications, looking at all the available evidence to figure out which ones work best for various problems. I asked him to describe the overall success rates for the most common three: acetaminophen (like Tylenol), ibuprofen (like Advil), and aspirin.

Like all good evidence-based medicine thinkers, he was able to provide a very practical answer: “If you’re talking about aspirin in doses of 500 to 1,000 mg or two tablets, 30 percent of people get relief from acute pain. For acetaminophen at doses of 500 to 1,000 mg, about 40 percent have a success. For ibuprofen, in its normal formulation at something around 400 mg or two tablets, about 50 percent have success.”

Now, Moore was referring here to acute pain that strikes after a specific event, like a surgery, a cut, or a burn, but his message was simple: Ibuprofen seems to work best, followed by acetaminophen, and then aspirin.

For ongoing (or chronic) pain — a sore lower back, say, or the kind of degenerative arthritis that typically develops with age — ibuprofen still outperforms acetaminophen. In fact, study after study has shown that acetaminophen on its own just doesn’t work that well for most people to treat this kind of pain, either.

“WE FOUND THAT [TYLENOL] IS INEFFECTIVE ON BOTH PAIN AND DISABILITY OUTCOMES FOR LOW BACK PAIN”

A 2015 systematic review of high-quality evidence, published in the BMJ, found that acetaminophen didn’t seem to help most sufferers of chronic low back pain, and that it barely alleviates pain in people with osteoarthritis. As the researchers wrote, “We found that [acetaminophen] is ineffective on both pain and disability outcomes for low back pain in the immediate and short term and is not clinically superior to placebo on both pain and disability outcomes for osteoarthritis.”

They also noted that patients on acetaminophen “are nearly four times more likely to have abnormal results on liver function tests compared with those taking oral placebo.”

Other studies, like this well-designed randomized control trial of people with knee pain, have similar conclusions: Acetaminophen doesn’t perform as well as ibuprofen, and it’s linked to higher rates of liver problems.

acetaminophen

So what about the occasional headache? What works best for that?

It turns out this is another fascinating problem area for pain researchers. Moore has looked at all the evidence for what he calls “infrequent tension headaches” and found “it is surprising how poor [the research] is and how little it tells us.” Either the outcomes in studies are badly defined, the studies have too few participants to say anything concrete, or many people in the studies actually seem to have chronic headaches as opposed to the ordinary ones they’re allegedly studying.

“Most people would say, if you look at the data, take an ibuprofen tablet,” Moore said. “Acetaminophen is just not a very good analgesic [pain reliever], yet it’s the go-to drug because it’s thought to be safe.”

And that’s where things get even more interesting: Acetaminophen isn’t actually that safe.

“We always thought [acetaminophen] was safe, but there are increasing signals of accidental overdose in people who are regularly using it for chronic pain, and some liver toxicity,” explained the University of Leeds’s Philip Conaghan, who has studied adverse events data related to this popular drug.

Between 1998 and 2003, acetaminophen was the leading cause of acute liver failure in the US. There are also hundreds of related deaths every year — though keep in mind that millions of people take drugs with acetaminophen, so these more extreme side effects are rare (especially if you’re only taking them in small doses occasionally). Still, for the drug’s minimal pain-killing benefits, the risks may not be worth it.

“Don’t believe that just because something is over-the-counter, it’s safe,” Conaghan added. (He advised people to see their doctor if they’re taking any of these painkillers for more than a few days — particularly if they’re on other drugs already.)

“[TYLENOL] IS AN OLD DRUG, OBSOLETE, AND SHOULD BE AVOIDED ALTOGETHER”

Kay Brune, a professor of pharmacology and toxicology at Germany’s Friedrich-Alexander University who has also studied the toxicity of painkillers, was even more direct in his thoughts on acetaminophen: “It’s an old drug, obsolete, and should be avoided altogether.”

Aspirin is safer than acetaminophen, he said, though to be used as a pain reliever it requires much higher doses — which can have side effects like stomach upset. Aspirin also interferes with blood coagulation for days after taking it. “If you take one gram of aspirin,” Brune explained, “you’re at risk of bleeding for another four days.” This is why aspirin has its place as a protective agent against strokes and heart attacks for people at a higher risk.

Ibuprofen doesn’t have these two problems — it’s less toxic than the others in the doses that give people pain relief. But it has other side effects. “Ibuprofen puts people at risk of bleeds in the gastrointestinal tract and kidney damage — so it’s not free of risk,” said Brune. Using it in high doses also seems to raise blood pressure, and increase the risk of heart attack and stroke — one reason the Food and Drug Administration recently warned people should only use ibuprofen (and other “Nonsteroidal anti-inflammatory drugs” or “NSAIDS” like naproxen) for short periods of time and in small amounts.

I asked Brune about what he’d suggest for the occasional headache or sore muscle. “Taking 400 mg of ibuprofen won’t cause measurable harm,” he answered. “Of all drugs we have available, for most indications, it’s also the most effective one.”

If the research community seems to have sided with ibuprofen for pain, is acetaminophen good for anything?

Patients with kidney and cardiovascular problems may need to avoid NSAIDS like ibuprofen, so doctors could suggest Tylenol here even though it probably won’t provide as much pain relief. NSAIDS can also cause psychosis and cognitive impairment, so doctors may avoid prescribing them for elderly patients.

Fever is another area where acetaminophen can help, said Moore. According to one systematic review, acetaminophen seems to be safe for treating very young kids with fever, and you can give children as young as 3 months old acetaminophen, whereas you need to wait until kids are at least 6 months old to safely treat them with ibuprofen. (Aspirin is not recommended for anyone under 18 years old since it can cause a potentially fatal condition called Reye syndrome.) This may help to explain the popularity of drugs like Tylenol for kids.

But a final caveat here: If your child is older than 6 months, it’s not all that clear that acetaminophen outperforms ibuprofen for reducing fevers, and the same is true for adults. So keep that in mind when you’re rethinking your medicine cabinet.

source: www.vox.com


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The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

pain


I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

Christine Miserandino