Living with Lupus Corner with Mauricia Ambrose

World Health Day is April 7^th. I didn’t know that until I had to write this article. But, because of this, I decided to dig a bit deeper into the meaning of this day. World Health Day is sponsored annually by the World Health Organization and other similar entities, with the goal of putting a spotlight on global health issues each year. The theme for 2024 is ‘My health, my right’. ¹ This year’s theme was chosen to champion the right of everyone, everywhere to have access to health services, education, and information, as well as safe drinking water, clean air, good nutrition, quality housing, decent working and environmental conditions, and freedom from discrimination.

I love this theme. It is all encompassing. We all have basic needs and the right to have those needs met, one of which is heath care. I think we are all lucky to live in a country where many of our basic health care needs are met, however, there is still a lot of work that needs to be done. That’s why one of the pillars of Lupus Canada is Advocacy. The organization achieves this through the education of patients and their families on their legal rights and entitlements. They also work with politicians and the government to develop policies and legislation that will enhance the lives of lupus patients. Much of this is achieved through the website where valuable information about government policies, research, and new treatments, are made available to the public. For more information, you can visit the website at Lupus Canada Home.

As a lupus patient, I believe self-advocacy is crucial to living a fulfilled life with any chronic illness. There have been many times when I felt unheard and had to advocate for myself to get the services I needed. When I lived in North York and worked downtown, I drove an hour and a half to two hours to the hospital for treatments, after work. Then I spent four hours being treated.  It was exhausting. I moved to the GTA to be closer to work because the commute was too much, but I still had to drive back to North York for treatments.

Ultimately, I was still spending six to seven hours (maybe even more) after work, getting to the hospital, being treated, then driving back home, every other day. I also had my son who was very young. Babysitting costs were astronomical. I was stressed and tired all the time. I finally decided to request a transfer to a hospital in Toronto, which was initially denied. I told the doctors that I was not coming back for treatments, because I couldn’t do it any longer, which forced them to find a solution (I would NOT recommend that you actually stop any of your treatments).

They found a spot for me in a research program at the Toronto General Hospital which was ideal. It allowed me to have my treatments, without the stress of a long commute and I could spend more time with my son. I was lucky, but there are so many patients out there who are struggling to find a family doctor, book a specialist appointment or even see a doctor at the emergency department.

Self-advocacy is difficult, especially when you don’t know who to call or what to do. Visit the Lupus Canada website www.lupuscanada.org where everything you may need know about lupus, including webinars, how to advocate, and links to regional organizations, is in one place.

There is a wealth of knowledge about lupus and organizations that you can reach out to for help. They may be able to guide you to the next steps and if not, at least you’ve made a connection with someone who has a shared experience. You can find the answers together. You are not alone.

References:
¹ Pan American Health Organization (PAHO) (2024), World Health Day 2024: My health, my right, Available at: https://www.paho.org/en/events/world-health-day-2024-my-health-my-right (Accessed 24 March 2024).

Remember your struggles shouldn’t define you; they should motivate you.

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What does International Women’s Day (IWD) mean to you? Before March 2023, I never noticed it. It was like any other day that seemed to be created by someone at their kitchen table, like International Cupcake Day. Then I read about the birth of IWD and was fascinated by the amazingly brave women who would not let their voices be diminished, based on the rules imposed on them. Women like Theresa Malkiel who suggested, a National Women’s Day, it is rumored, to commemorate the protest of female garment workers in New York on March 8, 1857.  This first Women’s Day was celebrated on February 28, 1909.

Inspired by Theresa’s commitment, one hundred women from seventeen countries at the International Socialist Congress, 1910; Second International Conference of Socialist Women, agreed that a more strategic approach was needed to deal with women’s inequality and suffrage (right to vote). They proposed the celebration of an annual Women’s Day. On March 19, 1911, the first IWD was celebrated. International Women’s Day was celebrated for the first time on March 8, in 1914.

Since the inception of IWD in 1909, women have been celebrated for their bravery and accomplishments. In this article I’d like to focus on the women who are making amazing progress in battling the silent disease, Systemic Lupus Erythematosus (SLE). Most of you who read this blog already know what lupus is. It is an autoimmune disease which has no cure and no cause. Our immune systems are overactive and cannot distinguish between our normal cells and foreign bodies. Because of this, our internal organs are constantly under attack. Any organ can be affected – for example, our lungs, kidneys, or our heart.  The women in this article are making strides to combat this illness and make the lives of lupus patients better every day.

Let’s start with Dr. Joyce Rauch, Research Institute of the McGill University Health Centre, McGill University, Montreal, Quebec. Dr. Rauch and her team hypothesize that cells in SLE-prone individuals die in a manner that causes them to appear foreign, thus resulting in an immune response to these cells. Their studies will show that by targeting receptor-interacting protein kinase 3 (RIPK3), a regulator of an inflammatory form of cell death, they can eliminate or improve SLE. They have shown that deleting RIPK3 can prevent SLE in induced murine models (a murine model, also known as a mouse model, is a laboratory animal genetically engineered to mimic human diseases).

Dr. Ann Clarke is a Professor in the Division of Rheumatology in the Cumming School of Medicine at the University of Calgary, Calgary, Alberta, Canada and holds The Arthritis Society Chair in Rheumatic Diseases.  She is also the current Chair of the Systemic Lupus International Collaborating Clinics (SLICC). Dr. Clarke and her team are currently investigating the access SLE patients have to information. The goal is to understand how SLE patients navigate the health system in a time of health crisis. In May 2019, she also hosted the Waterlupus hackathon, in Waterloo, Ontario where advocacy groups, patients and policy makers were engaged to find non-pharmaceutical solutions to improve the lives of lupus patients and bring awareness to the disease. Dr. Clarke and her team also built valuable partnerships that will drive future innovation. The hackathon was funded by Lupus Canada.

The Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) is chaired by Dr. Christine A. Peschken, University of Manitoba, Winnipeg. Dr. Peschken is the Manitoba chair of the organization which is a research network of researchers working across Canada and internationally. Using the National Lupus Registry, Dr. Peschken and the team of CaNIOS researchers look at treatment history, responses and outcomes of lupus patients to find predictive factors. They are also involved in advanced trials and treatments of lupus patients.

Dr. Joan Wither is a Senior Scientist at the Krembil Research Institute Professor of Medicine and Immunology, University of Toronto Director of STAT (Urgent Assessment) Rheumatology Clinic, Toronto Western Hospital Director of Early Autoimmune Rheumatic Disease Clinic, Toronto Western Hospital. Dr. Wither and her team focus on unlocking the genetic and immune system abnormalities that lead to systemic autoimmune rheumatic diseases (SARD), including SLE, Sjogren’s disease and scleroderma. She and her team have developed unique and innovative techniques to examine lupus activity at the cellular level.  They are also investigating whether immune cells that promote flares are activated in places where the immune system comes into contact with the environment, like the skin, intestines and the lungs, which may indicate a link to environmental triggers of flares.

I am excited about the research these women are doing to advance the lives of lupus patients. Five million people worldwide struggle with lupus. Lupus is also eight to thirteen times more common in women than men. The Center for Disease Control and Prevention (CDC) states lupus is most common in women 15 to 44 (at child bearing age). Lupus also raises the risk of heart problems, and more than half of the patients with lupus develop kidney disease. The medications used to combat lupus can also cause osteoporosis. This is a hidden epidemic, and these women are working hard to bridge the gap between a patient suffering with lupus and one that is surviving and thriving.

Remember your struggles shouldn’t define you; they should motivate you.

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The chocolates, the bright red hearts and the endless teddy bears were on display by early January and my Christmas lights were still cheerfully displayed. I haven’t recovered from the hustle and bustle of the festive season and here comes another. Why do we move aimlessly from one commercialized celebration to another every year? Is it because we need to feel some sense of hope for the future, or do we need to connect with others because we are social beings?

What is hope? The Merriam-Webster dictionary defines hope as “to cherish a desire with anticipation: to want something to happen or be true”. Hope keeps us moving forward. It gives us the strength to take on the next day, and the next, and the next. With each difficult day, we hope the next will be better. But what if it isn’t?  What if the Christmas lights don’t seem as bright as they used to be and there is no one or no reason to buy a Valentine’s present? What do we do then?

In an article for Harvard Health, Adam P. Stern, MD writes about hope and its benefits.  He said “Among young adults with chronic illnesses, greater degrees of hope are associated with improved coping, well-being, and engagement in healthy behaviors. It also protects against depression and suicide. Among teens, hope is linked with health, quality of life, self-esteem, and a sense of purpose. It is an essential factor for developing both maturity and resilience.”

This evening I attended a LinkedIn event hosted by Damian Kinsey and Dr Tania Faran called “Are you ok?”.  During the event Dr Farran introduced us to a concept called “The Scale”. It entailed a simple question. Where are you on a scale from 1 to 10? Are you happy with your life, your job, your health, or family life? If you aren’t a 10, what do you need to get to a 10? My boyfriend and I were driving back home during the event, and I asked him where he was on the scale. He was a 7. I was wavering between 6 and a 7. Then I thought about breakfast with my son this morning. We were laughing hysterically about some ridiculous movie I was trying to describe to him. Then later at church, every time I said something to him, he would deliberately go down to my level and ask me to repeat what I said to emphasize the fact that he was now taller than me. We were laughing again and enjoying each other’s company. I thought about every health scare I have had over the years. With every setback I had people in my life to support me. I came out on the other side of each setback a stronger and healthier woman. By the end of my reflection, I was sure I was an 8. I couldn’t say 10. Life would have to be perfect. I couldn’t say 9, because well, I still have a chronic illness and I don’t have a million dollars to retire to the Caribbean.

So back to my original question. What do you do? The simple answer is to find hope. Find something to look forward to. Use “The Scale” to understand where you are emotionally and physically then, reflect on what you need to get to as close to a 10 as you can be. Think about the people you love, the events in your life that you have overcome. Think about your failures and what you learnt from them. I know it’s hard when a cloud of sadness covers you like a heavy blanket. But you must use all the strength you can muster to throw the blanket off and get out into the sunlight.

If all else fails, ask for help. Speak to your family doctor for a referral to a therapist. For those of you in Toronto, Mental Health TO is a great free resource to get excellent counseling services. You can access a counseling session through the What’s Up Walk-In Clinic. www.whatsupwalkin.ca. Sessions are on the same day (they are generally 45-60 minutes long), with no fee, no health card, and no appointment. On the day you are ready to have a session, you can contact MHTO at 1-866-585-6486.  So, don’t wait, reach out and find the help you need. You are not alone.

Remember your struggles shouldn’t define you; they should motivate you.

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Burr! Why does it have to be so cold? Oh right, I live in Canada. It’s January again. For some, we start the grind all over again, and for others it’s a time to get started on those new year’s resolutions we made on December 31^st. I like to think of January as a time of renewal and hope – renewal of self and hope for the future. I can’t remember the last time I made a new year’s resolution. I’m not trying to say it doesn’t work, I just take a different approach. I make lifestyle changes, so they stick.

Don’t get me wrong. I have made new year’s resolutions before and I may have lasted a little longer than most because I hate giving up, but eventually the novelty fades and I go back to my original routine. What’s more likely is that I push myself too far and end up sick or in the hospital. I have learned that I need to understand my body and pace myself when starting a new activity or regimen. I make notes on how my body is reacting – positive or negative- then I adjust accordingly. So, as you make your resolutions  (for those of you who do) here are a few simple tips:

1. Plan for small goals that you can achieve in increments.
2. Make the goals measurable.
3. Write them down.
4. Track progress in increments (not every day).
5. Stay positive by giving yourself small rewards for progress.
6. If you slip up, don’t beat yourself up, but look at why and course correct.

I’m sure these aren’t all the tips, but they are the ones that help me make necessary lifestyle changes.

When you live with lupus you not only have to be wary of the sun but also the cold. The colder seasons bring their own challenges. For a lupus patient a simple cold can be deadly. Antibiotics can cause further damage to your organs. The flu can be debilitating because we are immunocompromised. I recommend you use your mask when you can, especially in crowds, like on the subway or train. Also, wash your hands frequently. The cold can also cause joint inflammation and muscle tension, which can make you feel stiff and achy. Please talk to your rheumatologist if this happens.

There are those of us who have Raynaud’s Syndrome which is a disease where areas of the body – mainly your extremities – become numb and cold very quickly as smaller arteries narrow and cut of the supply of blood to these areas. Fingers and toes become blue or white depending on skin colour. Imagine having to deal with that in the dead of winter! I invested in a pair of heated gloves, which is now my favourite winter accessory, even though they are clunky. They keep my hands toasty warm. If you don’t want the expense, buy a pair of hand warmers. You can also invest in a small space heater for your room, dress in layers, drink warm beverages, stay hydrated and always have extra clothing or a blanket close by.

At the beginning of my article, I talked about renewal of self and hope. How do you do that? I start by doing an inventory of what went well and what didn’t for the year. How do I feel about the accomplishments I made this year? What tactics did I use that worked well and which ones didn’t? For those that didn’t, I create a plan to make lifestyle changes that, I hope, will have a more positive outcome. Hope! A plan for the future gives you hope. Hope that things will be better next time. Hope that the outcome will change. Just remember, the definition of insanity is doing the same thing over and over again and expecting a different result. Shake things up a bit and do something different.  Get out of your comfort zone this year!

Remember your struggles shouldn’t define you; they should motivate you.

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When I started writing this article there were 34 days, 15 hours, 7 minutes, and 11 seconds to go before Christmas. You can find the countdown here.  Christmas is just around the corner, and so is the stress that comes with it. But Christmas doesn’t have to be stressful if you plan and start early. That’s easier said than done. I hear you. You have obligations. You’re busy. You don’t know what to get everyone. There’s not enough time. Well, that last one isn’t true. You have 34 days. My Christmas plans start on Remembrance Day every year. I start early because that’s what we did when I was young.

Christmas was always a time of immense activity in my family. Someone always had a potluck at their house. The smell of ham, fruit cake, punch-de-crème and pastelles permeated the air. Instead of carolers we had parang. Parang is folklore music brought to Trinidad and Tobago (my birthplace) from Venezuela. The word parang comes from two Spanish words: parranda, meaning “a spree”, and parar meaning “to stop”. Parang serenaders, known as parranderos, visited the homes in their neighbourhood, sang traditional parang songs, and played instruments like the cuatro (a small four-string guitar) and maracas. Families invited them indoors to continue the celebrations, where they shared the food and drinks made specifically at Christmas time.

The Christmas tree at my house overflowed with presents because there were a lot of us. My brothers and sisters all brought their presents to my mother’s house. By the time all the presents were under the tree, the pile would be two feet wide and two feet high. I have a vivid memory of one of my sisters walking into the house with a huge garbage bag filled with presents. Everyone got a present when we were kids. I loved Christmas as a child and still do.

In our household, my mother took the brunt of the stress of preparations. There were fruit cakes and drinks to be made. Curtains to be sewn – she didn’t buy stuff like that off the rack, she made them from scratch. The house had to be spotless. Every window had to be washed and every glass in the hutch had to be sparkling clean. I still remember being in our front yard pulling up the weeds that grew through the cracks in the concrete and cleaning the upstairs windows. OK I still loved Christmas, the cleaning, not so much.

As my mother grew older, the hustle and bustle of Christmas diminished. Instead of cleaning the windows – or making me do it – she hired someone to get it done. New curtains weren’t made every year, but old ones were washed and ironed then hung up for the festivities.  She still did all the baking and cooking though. No one was taking that away from her. There weren’t as many presents under the tree, as the kids became adults and had their own families. Christmas became much more relaxed.

Now that I am older, I have taken a page from my mother’s book. There is still the hustle and bustle of Christmas, but I pace myself. Here are a few tactics I use that allow me enough time to prepare for the festivities and keep my stress level down.

1. Start early. Don’t wait until the last minute to get to the mall and fight for the last parking spot, then wait in line to buy that perfect gift.
2. Shop online. The pandemic opened a whole new world of shopping possibilities for me. But be careful of scammers. Guard your card.
3. Make rather than buy. If you are the artistic type, make your Christmas present rather than buy it. By making your Christmas present, you are doing something that you love, which reduces stress, and that Christmas present will mean so much more to the recipient.
4. Give the gift of charity. We have so many things and Christmas has become so commercialized, why not change that, and use the opportunity to give to those who really need it. I’ve stopped giving Christmas presents to adults, instead I’ve donated to their favourite charity, in their name.
5. Give the gift of time. For those closest to me I give the gift of an experience so I can spend time with them. Buy tickets to a baseball game that you can all go to. Go out to dinner. It doesn’t have to be an expensive restaurant, just somewhere you can spend quality time together.
6. Hire a cleaning service, window cleaners, and a gardener to get the house ready for the season. If you can’t afford all three, pick one, and do the others with the help of friends and family.
7. Finally, bring the family together to do the decorating, baking, and other preparations. Make it a party. You’ll get the help you need and spend quality time with the people you love.

Christmas time doesn’t have to be stressful. It can be a time when you reconnect with the people you love. Start early and avoid the rush. Take the opportunity to give back to the community through a charitable gift. Make your next Christmas present a more meaningful one by doing something creative. Most importantly enjoy the season.

Remember your struggles shouldn’t define you; they should motivate you.

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On Sunday, November 5, 2023, 2:00 am clocks are turned backward one hour to Sunday, November 5, 2023, 1:00 am which ends Daylight Savings Time (DST). Daylight Savings Time is the practice of turning the clocks forward for one hour in the warmer months so that darkness falls later in the day. In the fall, the clocks are turned back to return to standard time. The first country to implement DST was Germany in 1916 during World War I, as a means of conserving energy. Since then, seventy countries now observe DST.

But what are the benefits of DST? Many people believe that it was implemented to benefit farmers, however farmers are the strongest advocates of eliminating DST. The real benefit is in the extra sunlight we all gain when we move the clocks forward. By moving the clocks forward, we have more exposure to sunlight and more time for recreational activities. Sunlight is a mood booster. It is associated with the release of the hormone serotonin which is one of the happy hormones.

An article by Healthline called Sunlight and Serotonin states that with lower levels of sunlight our serotonin levels decrease which can cause depression, or seasonal affected disorder (SAD). This is a type of depression caused by the change in seasons.  The symptoms typically start in the fall and continue in winter about the same time every year. The Mayo Clinic lists the symptoms as follows:

1. Feeling listless, sad, or down most of the day, nearly every day
2. Losing interest in activities you once enjoyed
3. Having low energy and feeling sluggish
4. Having problems with sleeping too much
5. Experiencing carbohydrate cravings, overeating and weight gain
6. Having difficulty concentrating
7. Feeling hopeless, worthless, or guilty
8. Having thoughts of not wanting to live

Don’t brush these symptoms off as the winter blues, you need to be intentional about keeping your mood positive throughout the year.

One of the other benefits of sunlight is the production of vitamin D. When we are exposed to ultraviolet-B radiation our skin produces vitamin D. It plays a pivotal role in bone health and the prevention of osteoporosis.  It also prevents diseases like rickets in children.  Healthline also sites guidance from the World Health Organization, where they suggest a moderate amount of sunlight (5 to 15 minutes) on the face, hands and arms, two to three times a week, is beneficial as vitamin D also has a role to play in calcium and phosphorus absorption which is important for our immune systems and blood cell creation. Vitamin D deficiency has been linked to an increased risk of infection.

So, what should we do when the clocks turn back, and we lose all that sunlight next month?

1. Take advantage of the extra hour of sleep. Don’t try to add more activities into that hour. Rest is important for every lupus patient because fatigue is a natural part of our daily lives.
2. Find activities that boost your mood, for example, stock up on hobby supplies. Since the end of DST leads to Christmas, opt to make Christmas presents rather than buying them.
3. Do something nice for your neighbours. Volunteer at your local community centre or foodbank.  You’ll feel a sense of satisfaction and belonging.
4. Socialize with friends and family you like. It will boost your mood.
5. For your overall bone health start moderate weight training. This can be done at the gym or at home with a couple of heavy books. Please do this with your doctor’s permission.
6. Eat a healthy diet that will promote bone health. Please speak to your dietitian for guidance.
7. If all else fails, and you feel you need help, reach out to a professional.

Don’t let the change to standard time affect you emotionally. Take steps to safeguard your mental health. Exercise and socialize. Do something good for someone in need, it will make you feel good. Finally, seek help if you think you need it. Don’t be afraid to reach out. Eleven million people battle SAD in the US every year. You are not alone.

Remember your struggles shouldn’t define you; they should motivate you.

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October 10^th is World Mental Health Day and incidentally October 9^th is Thanksgiving. What have you done recently to safeguard your mental health? As we prepare for Thanksgiving, and mother nature prepares for another season of renewal, let’s be grateful for how far we’ve come and think about how we can recharge and renew our lives. There are so many options for all of us that it might be hard to choose. I would start with a few simple ones.

Find a hobby. I love gardening. I started about ten years ago with one indoor plant because I read that they clean the air. It was a palm. Now I have at least forty plants. It’s gotten so bad that every time we pass by a garden centre and I stop, my son says “Step away from the plants Mommy”. I’ve stopped buying plants just to add to my collection. Now, I propagate plants. Anyone interested in a Golden Pothos look me up. I have lots of those.  I’ve also tried to be more creative, combining plants that can live together, and planting them in a glass jar with decorative stones. I made my first bonsai this summer and intend to make many more. I have a few rare plants as well, the Hindu Rope plant, a Sleeping Pothos and… wait this isn’t an article about plants. I digress.

If plants aren’t your thing, and you like more adventure, then pick something that will bring that rush of adrenalin you are looking for. Alice Boyes Ph.D. wrote an article for Psychology Today where she lists ten tips for choosing the right hobby.

The first is cost. Some hobbies may cost a lot, others, like gardening, can cost less or the cost might be neutral. I would suggest that you first decide on your budget. Do you want to spend $500 a year or $5,000 a year on your hobby? Some hobbies can be transformed into a lucrative side hustle. Check out this site with a list of side hustles you might want to investigate 100+ Side Hustle Ideas to Make $500+ in Your Spare Time (2023) (sidehustlenation.com). Be careful that it doesn’t turn into a second job. Remember this is supposed to be enjoyable.

The second thing to consider is time. How much time do you have for this new hobby. If you are stretched to the limit, already consider outsourcing some of your responsibilities so you can make time for a hobby. Some hobbies require minimum time, like half an hour a week watering plants, others require more effort. For example, if you choose to go into real estate, then you may have to dedicate a lot more time and resources seeing tenants, arranging repairs and buying or selling properties. Select a hobby that matches the time you have to spend on it.

The next question is when. When do you have time for your hobby? Can you do this all year round or is it just a specific time of year? If you don’t like the cold, don’t pick skiing. Do you have time on the weekends, or after work?

The other questions you need to ask yourself are:

4. Do you want social contact?
5. Who do you want to interact with?
6. What are your strengths?
7. How do you want your hobby to challenge you?
8. Are you looking for a hobby you can share with your partner?
9. Do you struggle to finish things?
10. Are you interested in the pursuit of a hobby or the hobby itself? This is one you might not even realize you are doing. I love shopping. Am I buying those yoga pants and blocks because I like the idea, but I hate yoga? For those of you who have done this before, consider a yard sale. Get rid of the clutter and start a fresh. Make a commitment this time to finish what you started. Ok, don’t sell the yoga pants, they are way too comfy.

Psychology Today didn’t have this tip and it’s for lupus patients.

11. Find a hobby that matches your energy level and mobility. You don’t want to be exhausted when you are done. It should bring you joy and a sense of accomplishment.

There are of course other things you can do to safeguard your mental health. Take long walks or go to the gym. Go hiking. Get out for some fresh air. With the change in seasons, the colours will be magnificent, so get out there and enjoy it.

Get more sleep. Evidence consistently shows that getting a good night’s sleep leads to a better mood, better productivity and overall satisfaction with life. The World Economic Forum published an article that says, not getting enough sleep can make it more difficult to manage our emotions and by extension affect our mental health. Better sleep reduces anxiety, depression and stress.

If all else fails, see a therapist. For those of you living in Toronto, Mental Health TO is a great free resource to get excellent counseling services. You can access a counseling session through the What’s Up Walk-In Clinic. www.whatsupwalkin.ca. Sessions are on the same day (they are generally 45-60 minutes long), with no fee, no health card, and no appointment. On the day you are ready to have a session, you can contact MHTO at 1-866-585-6486. There is also Strides Toronto, for brief services. (Brief services will be 3 to 8 sessions with a consistent counselor). You will need to complete a quick screener and then the information can be sent to Strides Toronto Walk-In.

Are you ready to take on the world? Not quite. That’s ok.

Remember your struggles shouldn’t define you; they should motivate you.

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Wow, it’s over. Where did those two months go? Summer has always been an adventure for my son and me, whether it’s running out of gas after our first visit to a cottage or going to a Blue Jays game and never actually watching the game, because he can’t sit still. It’s always been a time of exploring new things and having fun. Even with lupus, summer is filled with possibilities.

Since the pandemic things have changed and our adventures have been few and far between, but it has never dampened my spirits.  I made our home a place of adventure. Birthday parties were in the backyard set up like an obstacle course, playing laser tag with a few friends.  Outdoor adventures were complete with masks and way more than the necessary number of bottles of hand sanitizer. I had to take precautions of course, and I am the first to admit I went into overdrive. The good news is, it was worth it, and we came out on the other end unscathed. The days we spent at home – him doing online school and me working from home – brought us closer as well.

Now another summer has passed, and I don’t know where the time went. He is taller than me now and loves every minute of it. They grow up so fast. I don’t want these childhood years to end but I know they must. In past summers I would make plans months in advance.  There were amusement parks and beaches to visit. Picnics, food festivals or music festivals to attend. This year was very different. He made his own plans and went out with his friends. It’s now the last few weeks of summer and the time has slipped away. He is getting ready to go into grade 8 and I will go back to the office.

Getting back into a routine is always difficult after the summer holidays. In previous years there would have been the shopping spree to get clothes. There was the nightmare of getting up that first morning and trying to get everyone – including myself – out the door on time. This year there’s still the shopping spree – who doesn’t like shopping. But I’ve learned a thing or two about transitioning from the lazy days at the beach or the hustle and bustle of sightseeing, to getting up at 6 am and out the door on time. I take a few simple precautions so coming back home isn’t a chore.

To avoid stress and ensure I have a good time, I travel with people I like. Makes sense, right. How many times have you traveled with people who are annoying – that uncle, aunt or cousin who won’t shut up? I can picture you smiling and nodding your head. I have had so many vacations with a complainer or someone who always wants things done their way. Even worse, that friend who thinks they are always right.  Life is too short to spend it with people who don’t bring you joy. I travel with people whose company I truly enjoy. My vacations are spent with the people I love and who love me. These are the people I can laugh and be myself with.

Now I’m surrounded by the right people, but my energy level doesn’t match theirs. What do I do? I take naps. I don’t know if it’s old age, but I’ve recently discovered taking short naps can be rejuvenating. That seems counterintuitive but most of my vacations have been hectic short trips that leave me exhausted. The best way that I’ve found, to ensure I have the energy I need to keep going is to take a short break. It doesn’t have to be a long snooze. The Mayo Clinic recommends ten to twenty minutes, anything more and you will wake up groggy. They recommend taking a nap in the early evening if you can, around 3pm, so it doesn’t affect your nighttime sleep. Find a comfy spot. I hate waking up to back pain after sleeping badly so I find a spot that is quiet and comfortable. Once you are up, give yourself time to wake up properly before you resume any activities.

If the naps aren’t enough, I simply say no. It’s ok to say no to an activity you think may be too much for you or if you are feeling fatigued. Too many times I have just kept going because I didn’t want to disappoint my friends when I should have simply stayed in the hotel room reading a book or by the pool relaxing. It’s a vacation. The root of the word vacation comes from the Latin word vactio which means freedom. You should have the freedom to do what you want to. I have gone off the “slower” beaten path on my own more than once, while my companions did their own thing. You do you.

Sometimes no matter what you do, vacations are stressful, for lupus patients more so. If I overdo it; and let’s face it, we all do; I tend to have lupus flares during or immediately after a vacation. They include joint pain, extreme fatigue and because of my kidneys swollen ankles. To give my body time to heal, I take an extra day or two off after my vacation so I can rest before I return to work. This isn’t always possible of course so I usually end my vacation on Friday, so I have the weekend to recover, and – this is very important – I don’t make any plans for that weekend.

Well, I am rested and ready to take on the world. Maybe not the entire world, but my little piece of it.

Remember your struggles shouldn’t define you; they should motivate you.

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