Why I Still Take Precautions Against Covid

By Victoria Reed, PNN Columnist

We are three years into the Covid-19 pandemic, and while life has still not returned to normal, it’s understandable for people to be tired of hearing about the virus and less concerned about catching it. Scientists know more about covid and have developed tools to treat and even prevent the most serious outcomes.

But many of us who are suffering from chronic illness or chronic pain are still wearing masks, practicing social distancing and taking other precautions.

As I go out and about in my daily life, I’ve noticed that mask use is somewhat minimal. People don’t seem to be as concerned about the virus and its variants, even as cases are skyrocketing again. I’m one of the few who still wears a mask in crowded indoor places, airplanes and restaurants.

Fortunately, I have not yet been infected with covid. I attribute that to always being cautious in public (sometimes even outside) and when around family members who I know aren’t taking precautions. Being vaccinated and boosted is another layer of protection I believe has helped me.

The choice to be vaccinated is a personal one and should not be looked at as a political issue or be a source of ridicule. The same goes for mask use. Sometimes people look at me funny because I still wear a mask, but I am “allowed” to do that, just as others are equally allowed to stop wearing theirs.

I don’t judge people who choose not to wear a mask, and conversely, I shouldn’t be judged for wearing one.

Part of my caution comes from having a dysfunctional and overactive immune system, which is altered by a medication I take to control symptoms of rheumatoid arthritis (RA). This medication suppresses a certain part of the immune system that is implicated in the development of RA.  Rheumatoid arthritis primarily attacks the joints, but can also attack the heart, lungs and eyes.

Having to take this particular med (commonly called a biologic), makes me more vulnerable to contracting all types of infection, including covid. It also makes it more difficult to recover from infections and can lead to serious or even deadly complications. 

In addition, the threat of possibly ending up with long covid, when symptoms linger for months or longer, is a concern of mine, especially since fatigue is a major part of long covid syndrome. Profound and disabling fatigue is also a feature of RA and fibromyalgia, so anything I can do to prevent another illness that causes fatigue is important to me. Even mild cases of covid can cause long covid, according to researchers.

Covid can also lead to physical complications. Studies have shown that the virus can cause neurological problems, difficulty breathing, joint or muscle pain, blood clots or other vascular issues, chest pain and unpleasant digestive symptoms.

Furthermore, the virus has been associated with increased psychological problems, such as depression and anxiety. The media has reported on the unfortunate suicides of people who had been suffering from long covid and were unable to get any relief besides ending their own lives.

In the long term, it remains to be seen how covid will affect the millions of us who are already suffering from chronic pain and illness. Fortunately, there are treatments that help with the symptoms and recovery for the majority of people who become infected. There are also medications that can save the lives of those who are at high risk of severe illness.

As more time passes, I’m sure other treatments will emerge, and I’m hopeful that as a chronic pain sufferer with multiple chronic illnesses, I will be okay if I do someday end up getting sick with covid.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

You Can Socialize During the Pandemic — Just Do It Carefully

By Bernard J. Wolfson, Kaiser Health News

Cooped up too long, yearning for a day at the beach or a night on the town — and enticed by the easing of restrictions just as the warm weather arrived — many people have bolted from the confines of home. And who can blame them?

But Houston — and San Antonio and Phoenix and Miami and Los Angeles — we have a problem.

COVID-19 is spiking in Texas, Arizona, Florida, California and other states, forcing officials once again to shut down bars, gyms and the indoor-dining sections of restaurants.

But that does not mean we can’t spend time with the important people in our lives. Our mental health is too important to avoid them.

You can expand your social bubble beyond the household — if you heed now-familiar health guidelines and even take extra precautions: Limit the number of people you see at one time, and wear a mask if meeting indoors is the only feasible option or if you can’t stay at least 6 feet from one another outdoors. Disinfect chairs and tables, and wash your hands, before and after the visit. If food and drink are on the agenda, it’s best for all involved to bring their own, since sharing can raise the risk of infection.

Arthur Reingold, a professor of epidemiology at the University of California-Berkeley’s School of Public Health, and his wife, an epidemiologist for the Centers for Disease Control and Prevention, have begun spending time with another couple around their age who have a large patio.

“They have us go around the back; they don’t have us go through the house,” says Reingold, 71. “We sit on chairs that are a good 10 to 12 feet away from each other, and we talk. We bring our food, and they bring their food.”

And they don’t wear masks. “I personally believe the risk from that situation, even without a mask, is pretty minimal,” Reingold says. “But if people wanted to try to do that and wear a mask, I don’t think that would be unreasonable.”

And while we are on the topic of masks, please remember they don’t make you impervious to infection. “Your eyes are part of the respiratory tree. You can get infected through them very easily,” says George Rutherford, a professor of epidemiology at UC-San Francisco. If you are medically vulnerable, or just want to be extra careful, consider wearing a face shield or goggles.

Avoid Big Gatherings

Most of us have wrestled with the question of how big a gathering is too big. It’s impossible to give an exact answer, but the smaller the better. And keep in mind there is no such thing as zero risk.

In the U.S. as a whole, the average infection rate is currently about 1% to 2%, which means one or two people in a group of 100 would typically be infected, says Dr. Yvonne Maldonado, a pediatrician specializing in infectious diseases at Stanford University’s School of Medicine.

In any individual setting, however, these percentages don’t necessarily apply, she says. And a gathering in an area where the COVID-19 rate is surging — or already high — is more dangerous than one of the same size in a place where it’s not. So stay informed about the status of the pandemic in your area.

Be wary even of friends you’ve known and loved a long time. That may sound callous, but you need to know something about the behavior and recent whereabouts of anyone with whom you plan to visit. Don’t be shy about asking where and with whom they have been in recent weeks. If they are a close enough friend for you to want to see them, they should understand why you are asking.

A chart from the Texas Medical Association that generated controversy on Twitter in recent days listed numerous activities, ranked from lowest to highest risk. Among the riskiest behaviors: going to a bar, a movie theater or any other crowded venue — and eating at a buffet. You could ask questions based on that list, or a similar one, to determine if it’s safe to visit with someone.

With regard to play dates for your children, public health experts say you should apply the same safety precautions as for adult get-togethers. “Children can play together, especially if their families have been socially distancing, the activities do not involve physical contact, and they can engage in the activities with sufficient physical spacing,” says Stanford’s Maldonado.

Another question, never far from my mind, is whether it’s risky to let a plumber or electrician or handyman into the house. I’ve put off needed house repairs for several months because of my uncertainty about it.

I put the question to the public health experts I interviewed for this column, and they agreed: As long as you both wear masks and stay a healthy distance apart, the visit should not pose a significant threat. But ask the person what precautions he took on visits to other homes. If he works for a company, check its policies for employees who go from home to home.

Craving Contact

Because I have two large dogs, I have also wondered whether they could be potential virus spreaders — not through their respiratory droplets, but because the virus might land on their fur. When I’m out walking them in the evening and see neighbors with their canines, we usually keep our distance, but once in a while somebody wants to pet one of my dogs, and I’ve been tempted to pet theirs — but have resisted.

My experts say I shouldn’t worry. It is theoretically possible to catch the virus off a dog if somebody just sneezed on it, but that’s an unlikely scenario. The dog’s owner poses a bigger risk.

For those of us who have craved more human contact, it may come as a welcome surprise that some public health experts think it can be safe to hug people (though not dog owners you don’t know) if you follow certain guidelines: Do it outdoors; wear a mask; point your faces in opposite directions; avoid contact between your face and the other person’s body; keep it brief and wash your hands afterward.

Shannon Albers, a 35-year-old resident of Sacramento, says she started hugging people again after reading a story about how to do it safely in The New York Times.

“After 89 days I finally got to hug my mom, and she started crying,” Albers recalls. “We were standing on the driveway, and I said, ‘Do you want a hug?’ She immediately tightened her mask and started coming down the driveway, and I said, ‘Wait, Mom. There’s rules.’”

Chronically ill and elderly people may not want to risk it, says UC-Berkeley’s Reingold. “But if you are out drinking beers with somebody in a crowded room, I’m not sure the hug makes a difference, frankly.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown

By Pat Anson, PNN Editor

People with chronic pain and chronic illness are staying at home, practicing social distancing and wearing masks to protect themselves from the coronavirus. But after weeks of isolation, many chronically ill patients are feeling anxious and lonely, and worried about issues that healthy people are less concerned about, like losing access to medication and healthcare.

“Some medications have been unavailable or on back order. Doctors have been unavailable; everything has been unavailable. I'm hanging on by a thread,” one patient told us.  

“It’s very difficult for a single, senior person living alone. Can go days without talking or seeing anyone. I suffer with depression anyway, but this has really increased it so much. It’s scary to think that people in this group could be sick or dead for days before being found. It’s incredibly lonely,” another person said.

“It has only exacerbated my anxiety and pain to a breaking point. I don’t know how long before I completely break down mentally,” said another.

“Not only do I worry about running out of medication, but each time I have to go to the pharmacy for various medications, I am exposing myself to others which could cause me to get the virus,” a patient said.

“I am amazed at how many people just blow off social distancing and even the seriousness of coronavirus itself,” another person said. “On the other hand, I've been heartened by the amazing compassion by others for those who cannot go out, are front line workers, and for those who have the virus.” 

Those are some of the responses we received in an online survey of 2,221 people with chronic pain or chronic illness conducted by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. The vast majority of respondents live in the United States or Canada.

Over half (58%) say they are extremely or very worried about the coronavirus, while less than 5% are not worried and believe the crisis is overblown.

The vast majority report they are self-isolating at home or under quarantine (89%), practicing social distancing (98%) and wearing protective gear like masks (73%).

There’s good reason for their caution. One in four are age 65 or older, and over half (57%) have been diagnosed with a weakened immune system. Both groups are at high risk for severe symptoms and death if they become infected with COVID-19.

HOW WORRIED ARE YOU ABOUT THE CORONAVIRUS?

“Severe untreated pain has demolished my immunity; it shows on a blood test. I'm bedridden in assisted living and I am severely immuno-compromised,” one patient told us. “I am supposed to have a biopsy, they think I have uterine cancer, but I won't get treatment because I can't have pain meds. Everyone in nursing homes is vulnerable.” 

“I’ve had COVID symptoms since March 16 and still unable to get tested. My greatest fear is whether or not it compromised my immune system even more, and that I might not be able to return to work part time when this is over,” another patient said. “Since I live alone, disability is not enough to cover my payments so I will be at risk for losing my home.”

“If I get this virus, it’s a death sentence. So I stay worried, my sleep is compromised, and my pain levels are higher,” said another.

What specifically are people worried about?  It runs the gamut from from financial problems to running out of food to not knowing when the crisis will end. Their top concern is a loved one catching the virus.

What Do You Worry About?

• 71% A loved one becoming infected

• 69% Going to a hospital or doctor’s office

• 67% Catching the virus

• 64% Not knowing when this will end

• 62% Losing access to medications

• 50% Not being able to see family and friends

• 49% Not being able to see my doctor

• 49% Visiting locations where I might become infected

• 42% Mental health

• 42% Running out of food or essential supplies

• 37% Financial problems

One reason financial problems may rank low as a concern is that nearly 80 percent of respondents are retired, disabled or were no longer working. Their financial situation hasn’t changed much due to the lockdown. About 15% are still working, while only 5% have been furloughed or laid off.

‘Stuck at Home Without Pain Relief’

One of the biggest worries of respondents is having a health problem and needing to go to a hospital or doctor’s office, where they risk exposure to people who may be infected with COVID-19. As a result, over 70 percent say they have cancelled or postponed a medical appointment. About the same number are using telehealth to connect with their providers remotely.

Some patients are having problems getting their prescriptions refilled. And many healthcare services deemed non-essential, such as physical therapy, massage, chiropractic care and elective surgeries, have been cancelled.

“I am very upset to have had my shoulder surgery delayed again. I have already waited over 2 years and now this! My pain level is something terrible,” one patient told us.  

“I've lost non-pharmaceutical pain management; the essential physical therapies and procedures have been postponed. It is called ‘non-life saving’ but I've already lost my life due to disability from severe chronic immobilizing spinal nerve damage,” said another.

“Lupus medication Plaquenil is being used to treat Covid-19. A bit scary for those of us needing access to this medication daily for lupus,” said a patient, one of several with lupus who have that concern.

“I'm very worried about not being able to get ANY of my medications. Already last week, a non-pain related prescription wasn't available at my regular pharmacy. I had to go to another pharmacy to have it filled because my regular pharmacy doesn't know when they'd get the medicine again.”  

“My physician decided to stop prescribing my anxiety and muscle spasm medication now. I’m really having a terrible time functioning. My chiropractor will not see me as I had a fever at my last appointment,” a woman said. “I’m stuck at home without adequate pain relief and have a special needs daughter. None of my doctors understands my situation here and it’s beyond frustrating.”  

Testing and PPE

Another frustration is the lack of testing and shortages of protective gear such as face masks and gloves. Like many healthcare workers, nearly two-thirds (64%) of chronically ill patients say it is difficult or very difficult to get personal protective equipment, commonly known as PPE. And only about 3.5% of this highly vulnerable population has even been tested for the virus.

“Due to the fact that I have an autoimmune disorder, rheumatoid arthritis, I am trying especially hard to stay home,” said a patient. “There are no face masks, hand sanitizer or gloves available for sale in this area.”

“It is despicable to me that we do not have enough PPE and testing. We all knew there would be a pandemic, just a matter of when. From the feds down to local healthcare, that did not stockpile PPE or plan how they would do testing. It is a horrific failure of epic proportion,” another patient said.

Testing for coronavirus antibodies is less off a concern than PPE. A large majority (72%) don’t feel a need to be tested. Only about one in four are worried they may be infected (24%) and would like to take a test to confirm it (25%).

‘The Plague of Many Generations’

IS IT EASY OR DIFFICULT TO GET PPE?

Among our survey population, only 16 people say they’ve actually been diagnosed with COVID-19. It’s been a difficult, life-changing experience for those who have.

“I've been stigmatized on social media for being outside (no one was around) for having COVID-19. I've been shamed and treated like a leper,” said one coronavirus survivor.

“I had it in January before the news broke. My mom, who was very ill, got it and passed away from it. My dad and sister also had it and survived. I am on my second bout, which compared to the first is nothing,” said another survivor.

“I believe this virus has been here since December. My husband and both sons were very ill at Christmastime into January and I took ill in February,” said a woman who tested positive for COVID-19.

“It’s been absolutely terrorizing to experience such a thing! It’s difficult to understand how this could happen or where this virus came from. It’s the plague of many generations!” said another coronavirus survivor.

Tomorrow we’ll look at how people feel about the government’s handling of the coronavirus outbreak and whether now is a good time to start ending the lockdown.

I’m Lonely. Are You Lonely Too?

By Ann Marie Gaudon, PNN Columnist

We are born for connection and being socially separated is bad for our physical and emotional health. From altering our immune systems to creating more inflammation to increasing the risk of heart disease and stroke, the health consequences of loneliness are significant.

Being a chronic pain patient can put you at even greater risk of being lonely. On the one hand, we know that social isolation is unhealthy, but on the other hand, we don’t have a choice as we must practice social distancing and self-isolation to protect ourselves and others from the coronavirus.

I’m lonely, you’re lonely – now what?

Don’t Do This

Do not attempt to run from your loneliness by zoning out for hours on end with Netflix or video games, consuming too much alcohol or other substances, or over-eating.  Trying to escape loneliness that way might give you some reprieve in the short-term, but those strategies will suck the life out of you in the long-term.

Trying to avoid or suppress feelings actually has a rebound effect in that they become stronger and more invasive in our lives. Avoidance is not a benign strategy and can have catastrophic results.

Do This Instead

Pay attention on purpose. Slow down, notice and name it. For example, “I am feeling lonely. It feels heavy and sluggish in my heart.”

Can you let this feeling be there just as it is, without judging or evaluating it? Without reacting to it? Can you just slow down and let your body feel what it is feeling? Can you let go of the urge to do anything at all with this feeling of loneliness? This is a normal response to an abnormal situation and your body is wise to this, so let it be.

Make an intention. Ask yourself, “What will I do with this feeling of loneliness now? My mind sees this as something that makes me weaker, unlovable and sad. But I choose not to buy into this. I accept that this loneliness is mine. What will I do with it now that it is here?”

The way out of this suffering is to behave your way out of it. Changing your behaviour will change the way people interact with you and will also change the way you interact with yourself. Make an intention to change your behaviour while holding the loneliness lightly, as you might hold a butterfly on your hand.

Expand your experience. You’re not going to shrink away from your experience of loneliness, but rather learn from it. We hurt where we care. Loneliness tells us that we care deeply about relationships. If we didn’t, we wouldn’t feel anything at all.

You will learn that your experience cannot bring you to your knees or ruin your life. You will learn that you can go through hell on earth and still treat yourself in a non-judgmental, non-reactive way. You will learn to wrap yourself in the warmth of self-kindness – even in moments of loneliness – and expand out into life to be part of this world.

Stay Connected

If you are reading this, you already have at least one technology that you will use to move forward with a new meaning. How you take control over what you do have control over – your behaviour – will be up to you, so choose something that you value.

People all over this planet are getting creative with ways to connect with each other. Stay connected to those you love. Use your phone or software such as Skype or Zoom. Use whatever floats your boat, just remain consistently connected.

There’s a virtual world out there for everyone. You can access therapy, support groups, entertainment of all kinds, exercise of all kinds, and even stream from your local library. How about taking that online course right now that you’ve been putting off? The great thing is that you can connect with a resource anywhere in the world.

The take-away message is this: Feel what you feel and make an intention to change your behaviour. Expand your world even if has to be online right now. Talk with people, laugh with people and cry with people.

The point is to emotionally connect during these especially lonely times. Texting, emailing, speaking, video-conferencing – the sky's the limit. Change your behaviour and change your life. Self-isolation need never mean emotional isolation.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.