Surviving Summer: Tips You Haven’t Thought Of Yet To Help You Manage Your Illness In The Heat

 

Surviving Summer

Summer time is here. After a chilly spring, it’s finally sunny and H-O-T.  We usually associate this season with fun and relaxation. But for many people with chronic pain, the heat and humidity of summer weather only means an increase in their pain levels. If I step outside on a scorching summer day, with the sun beating down, it only takes a few minutes before I feel fatigued, and lightheaded.

What Causes Increased Pain in the Summer?

Chronic illnesses like fibromyalgia (FMS) are affected by summer weather. People with nervous system sensitization or disruption have trouble regulating their body temperature, especially when exposed to weather extremes (hot or cold). Specifically, exposure to hot temperatures can lead to muscle pain, headaches, and worsened fatigue. Excessive sweating can lead to dehydration and loss of electrolytes, which also contributes to muscle pain, headache, fatigue and other symptoms.

Joint pain can be worsened by summer weather, like high humidity or low pressure systems, which cause summer storms. Joint pain is a symptom of several types of arthritis, which commonly co-exist with fibromyalgia.

Did you know that there are sensory nerve receptors in your joints that detect changes in barometric pressure? They are called ‘baroreceptors’. High humidity or low pressure conditions can trigger baroreceptors, causing uncomfortable pressure in your joints. You may feel this as tightness or stiffness in your joints. Dehydration can also reduce the fluid in your joints. Since joint fluid helps to lubricate movement, less fluid can lead to more pain.

Insomnia is another significant cause of increased pain in the summer (often called “painsomnia” in the chronic pain community). It can be difficult to sleep during hot summer nights. Many studies show that poor quality sleep causes increased pain levels. Keeping cool at night is a top priority for people with chronic pain.

Finally, people tend to be more active during the warmer months of the year. Summer invites activities like walking outdoors, picnics, and swimming. Special events often take place in the summer, like weddings, national holidays, or vacations. Exerting yourself more than usual during this season can increase your pain levels.

Strategies for Pain Management in Warm Weather

Kick Dehydration to the Curb: You already know that, in the summer, it’s even more crucial to drink your eight glasses of water a day. You lose more water from your body through perspiration in warm weather. It’s important to replace that water so you don’t become dehydrated. Dehydration can lead to headaches, muscle cramps, fatigue and heat exhaustion – which can all exacerbate fibromyalgia symptoms.

But Don’t Forget Electrolytes: an often forgotten aspect of dehydration is replacing electrolytes lost by sweating. Electrolytes are substances that carry an electric charge and are responsible for nerve and muscle function, and regulating blood pressure, blood pH and other vital bodily functions. Electrolytes include sodium, potassium, calcium and magnesium. You might think of sports drinks like Gatorade as the best source of electrolyte replacement, but these drinks cause their own problems. The added sugar will only cause energy crashes after the initial sugar high, as well as long term harm to your liver, pancreas, and teeth.

Did you know fruit is an excellent natural source of electrolytes? Try making your water more hydrating (and tasty) by infusing it with fruit. Fruit-infused water is made by putting fruit into a pitcher of water and letting it soak for several hours or overnight. Think strawberry, lemon and basil water or watermelon and mint water, among other recipes. Try to use organic or well-washed fruit to avoid any pesticide residue. Put a small pinch of sea salt for additional electrolytes! Coconut water is another excellent source of natural electrolytes and can help replace lost potassium and sodium. Use it in your fruit-infusions or drink it on its own. You might be thinking “so why don’t I just drink juice?” Most juices contain the entire amount of daily sugar a woman is recommended to have in one glass! Instead of raising insulin and blood sugar levels, and then crashing later, fruit infused water contains far less sugar.

Carry a water bottle with you so that you can stay hydrated throughout the day. If you don’t like plain water, or haven’t infused it with fruit, try adding  lemon or cucumber to plain iced water, or making iced tea (think herbal or de-caffeinated if making a large pitcher).  Avoid more than 1 to 2 cups of coffee, because caffeine is diuretic, which can worsen dehydration. Ditto with alcohol.  If you have trouble remembering to drink water, try to tie this new habit to something you routinely do, such as having a glass of water before each meal, as well as when you wake up and go to bed.

Stay Cool on the Go: try a cooling fitness towel when you are out and about. When wet, these towels are designed to feel cooler than the air temperature, and  provide relief from the heat (but don’t drip). They can also wick away moisture from perspiration. Run the towel under cool water, put it around your neck, and feel cool for 2-3 hours.

One of my favorite gadgets is a mini USB fan that can plug into your smart phone! This helpful little fan plugs into your phone (where the charger goes) or power bank and provides instant relief for your face and neck in the heat. They typically weigh less than an ounce! This is such a life saver in a hot waiting room, vehicle or sidewalk. You can also buy chargeable electric handheld fans to take on the go.

Stay Cool at Home: it’s important to try to maintain a constant, cool temperature during a heat wave. You already know that air conditioning and fans can help to maintain a cooler indoor temperature.  Put a damp cloth in the freezer for several hours and then wipe your face, neck arms and legs with it to cool off.  Applying an ice pack to the back of your neck or the inside of your wrists can also help. If humidity worsens your pain, consider running a dehumidifier in your home. The temperature can be less of a factor causing your pain than dampness in the air, especially if your have joint pain. Blackout blinds are vital for keeping your bedroom cool for resting on hot summer days.

Sun Protection: this is key to avoid flare-ups that could be caused by sunburn or heat exhaustion. Try to stay out of direct sunlight, use sunscreen, and wear a hat; basically everything your mother told you to do in the summer. Sun protection clothing that blocks harmful UV rays can really help to lower the risk of sun burn and heat stroke. UV protection sunglasses can also help reduce the impact of brightness on your eyes, which is a migraine trigger for some.

Last summer I finally admitted that I needed more protection because I felt instant fatigue from the sun beating down on me every time I stepped outside. So I went online and found a UV protection umbrella, with a pretty floral pattern, that I use as a modern day parasol! It may look a bit eccentric, but I feel pretty pleased with my choice when I’m walking beside my husband (who is too manly to use a parasol),  while he squints and perspires from the heat!

Replace Heat Therapy with Cold Therapy: if you routinely use a heating pad for your pain, try replacing it with an ice pack, especially during a heat wave!

Pacing is particularly key during the increased activity levels we often associate with summer months. With the additional physical stress from heat,  it’s especially important to stick to your boundaries, no matter what expectations friends or family members may place on you.

Consider an Activity Tracker: I find a wearable actually tracker quite helpful for making sure I don’t overexert myself. It can be difficult to compare different activities, like a neighbourhood walk with an afternoon by the beach. Knowing how many steps I’ve taken helps me to pace myself during the day.

 Log Your Symptoms: if you are unsure what effect the weather has on your pain levels, try keeping a daily log of the temperature and weather conditions, along with your pain levels. This might help you to identify pain triggers. You can also note any strategies you have tried to reduce your pain levels, and what impact they may have had. Overtime this will help you to identify more effective solutions for coping with pain in the summer months.

Resources

Everyday Health (7 Smart Summertime Pain Solutions)

Everyday Health (Managing Fibromyalgia in the Heat and Humidity)

Metropolitan Pain Consultants (Summer Joint Pain: The Impact of Hot Weather)

 

 

A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

When I think of the holiday season, two competing feelings immediately come up – nostalgic happiness at the thought of celebrating with loved ones (as well as the Christmas cookies), and impending panic at the logistical nightmare of shopping, decorating, baking and visiting. Chronic illness has tilted the balance towards anxiety outweighing anticipation because  my symptoms through so many obstacles in the way of getting ready for everything the holidays entail. Last year I shared mindfulness tips for managing the stress that can accompany the month of December – through staying present, being self-aware and treating yourself with kindness.

This year I’m reflecting on the true spirit of the holidays and what I really want to celebrate. The thing is – for most people, shopping till you drop, cooking up a storm, decking the halls, party hopping, and getting up early with the kids to open presents from Santa – is the essence of the Christmas celebration. Ideally, bonding with your loved ones over good food and the fun of exchanging presents puts family and togetherness at the heart of the holiday season.

A common criticism about how Christmas and other holidays are celebrated is that perfectionism over decorating and party planning, as well as greed in the form of materialistic gift-giving, take over the true purpose of the season. The expectations that we internalize and put on ourselves can really ruin the holiday spirit. What I’ve come to learn is that, If you live with chronic illness, you will inevitably fail to do all the things you’re supposed to do this time of the year. It sucks! But I’ve also learned that we don’t really have to live with the stress, disappointment and sense of failure that result from setting unrealistic holiday goals.

By returning to the core values underlying Christmas, Hanukkah, and other celebrations – generosity, compassion, hope, gratitude and love – I think we can find a new ways to meaningfully celebrate this time of the year. I’m trying something radical this year – extending some of those holiday feelings towards myself. So often I read tweet and blogs about how those of us who live with chronic illness are overachievers or perfectionists. Most likely the person you showed the least compassion and kindness to last December was yourself – am I right?

So what does the holiday season look like if I am compassionate to myself? Making more realistic plans and setting gentle boundaries is the first step. We have three families to celebrate with – my in-laws and my Mom’s and Dad’s families. This year we told everyone that back-to-back celebrations would not be possible. The end result  is that we have Christmas Eve plans, and Boxing Day Plans, but  we are staying home alone on Christmas day. Initially I felt quite guilty about this because I know everyone would love to see us on that day, but if I’m not gentle with myself I will ultimately end up having to cancel. And that would be worse! Compassion is like the oxygen mask analogy – you have to put yours on first before you can help the people beside you.

Another way that I am treating myself with more kindness is to use a softer and gentler tone in my own mind towards myself. When I start to feel stressed about not getting perfect gifts for everyone, or whatever problem that my inner gets judgmental about, I’m trying to take a deep breath and responding instead with more compassion and understanding. A good question to ask yourself is “what would I tell my best friend if she was facing this issue?”

I recently read a book called The Mindful Path to Self-Compassion which gave me the insight that, while we can’t change the challenging experiences or difficult emotions we face, we can change how we treat ourselves as we go along. Much of our suffering comes from resisting what is unfolding – worrying, ruminating, regretting, dreading, clinging, judging – rather than from direct experience of a painful circumstance. But if we can befriend ourselves, and compassionately hold ourselves while we go through a tough time, a lot of the unnecessary suffering can be short-circuited. It’s an ongoing practice, of course!

So far, I’m already finding it helpful to use the ‘loving-kindness phrases’ from compassion meditation to wish: “May I be safe, may I be peaceful,  may I be joyful, may I live with ease and wellbeing”. I repeat these phrases both when I’m sitting in meditation or feeling anxious during the day. This is a secular practice I feel comfortable with, but many people send a prayer rather than a wish. In the Christian tradition, you are asked to ‘love you neighbour as yourself’, meaning cultivating love for yourself and caring for others. This can be done as a blessing exercise: “May I experience God’s love”, repeated for peace, safety and wellbeing.

In the guided meditation, we are then invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their happiness and well-being (May he/she be safe…peaceful…joyful…live with ease and wellbeing). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to all beings in the world. Here is an additional guided practice, along with the script, from Mindful Magazine.

If you are in conversation with someone at a holiday gathering, you can silently repeat the phrases to yourself as a wish or a blessing for them. Staying present is one of the best gifts you can give those you care about, rather than getting distracted by ticking items of your ‘perfect holiday to-do list’. Loving kindness phrases can re-anchor you in the moment to the values you are trying to put at the heart of the holidays.

This Christmas, as I try to direct the spirit of the holidays towards myself, I hope that, in turn, I can pass it on by treating my loved ones with more gratitude and loving kindness! By emphasizing these values, I think  how we choose to spend our time will change. What form of togetherness actually gives you a sense of meaning and connection?  Since pacing limits what I can do, I’m going to prioritize the things that really matter and hopefully have a heartfelt holiday season!

The Top 9 Things I Do To Sleep Better At Night Despite Chronic Pain & Fibromyalgia

Do you feel like ‘the Princess and the Pea’ when you try to get a restful sleep? Here are my top 9 recommendations for improving your quality of sleep if you live with fibromyalgia, chronic pain or chronic illness.After being my own guinea pig, I wanted to share the most effective non-drug, natural solutions I’ve found to beating ‘painsomnia’.

Top 5 Things I Do to Sleep Better Despite Fibro and Pain

The never ending search for a good night’s sleep… if you have fibromyalgia, chronic pain, or chronic illness, you know what I’m talking about. Getting a good night’s sleep is one of my biggest challenges day-to-day. Almost everyone living with FM (or CFS, chronic pain or another chronic illness) can relate to this struggle. There seem to be so many obstacles to getting a full night of restful sleep:

  • pain
  • changes in how the brain regulates sleep/wake cycles (researchers have found that Fibromyalgia patients have disordered deep sleep – intrusions of ‘alpha waves’ associated with light sleep during deep sleep ‘delta waves’)
  • hormonal changes, such as reduced production of growth hormone, responsible for night time tissue repair
  • increased environmental sensitivity, such as to light or sound

Like a lot of other people with fibromyalgia, getting enough sleep is probably the single most important factor that determines my quality of life. In my case, I need to get about 9 hours of sleep to be able to function the next day. If I don’t, I am miserably exhausted and everything seems to go wrong – pain goes up, mood goes down and brain fog sets in.

A few years ago I did a sleep study. Before we move on, I would like to just say, for the record, that sleep studies really should be classified as a modern form of torture – what else can you call being forcibly held in place by many restraining wires, while watched through a Big Brother camera by the night guard, err, nurse?

Anyway, moving on… My sleep study showed that I woke up 66 times during the night, or about 14.3 times per hour. In addition, it found that my sleep efficiency was very low, at 64.5% (total time I was actually sleep divided by the time I lay in the bed). Basically, like many other people with chronic pain or illness, I’m just not getting a very restful sleep.

Over the years, I have tried countless supplements, medications, lifestyle changes, products and strategies to help me get a better night’s sleep. While most of these turned out to be ineffective, a number of them have significantly improved the quality of my sleep. I thought it might be helpful to share the results of being my own experimental guinea pig with you!

Quiet Down: Reducing Noise Distractions for Better Sleep

I think I might have actually become the world’s lightest sleeper since I developed fibromyalgia. I get woken up by trucks going by, my husband’s snoring, early commuters closing their car doors, my cat cleaning herself, my husband’s snoring, snowplough machines, dripping faucets, my husband’s snoring… You get the picture. Sudden noises are the bane of any insomniac’ s existence. Even if you don’t actually get woken up by a disruptive sound, it can disturb your sleep by shifting you from deep, restorative sleep into a lighter stage of sleep (Prevention). This is especially problematic for people with fibromyalgia, who already get less restorative sleep than the average person because of their illness.

1) Silicone earplugs: The first thing I tried to block out sound was, of course, earplugs. I tried all different kinds, and eventually settled on silicone earplugs. You might recognize these as a type of earplug used by some people when they go swimming to prevent swimmer’s ear infections. Instead of putting these plugs into the ear canal, the silicone molds to cover and seal the entrance to the ear canal. Personally, I find them more comfortable and effective than regular foam earplugs. For regular use, I think silicone earplugs are safer because there is less worry about damage from impacted earwax (caused by frequently pushing something into the ear canal).

2) White noise: But what if earplugs aren’t enough? This is where white noise enters the picture. White noise is a sound that contains many frequencies at the same intensity, like the sound of a fan, rainfall, or static on the radio (Prevention). By providing a constant, soothing background sound, white noise can blanket or drown out disruptive sounds that wake light sleepers. It works by reducing the noise differential between background noise and the disruptive sound – if the background sound is just silence, then a disruptive noise is very jarring, but if the background sound is white noise, then a disruptive sound is, well, less disruptive.

At first I wasn’t sure how adding noise would help me sleep better, when noise is what frequently wakes me up. But I found that I quickly adapted to the constant sound of the white noise. Best of all, I stopped being woken up by sudden noises!

Initially, I tried a number of free apps to play white noise on my phone. This is a good option to find out if white noise works for you. Over time, I found that my phone wasn’t able to play white noise loud enough to mask sounds like the neighbour’s leaf blower. Additionally, the app would sometimes cut out in the middle of the night and wake me up (yes, even sudden silence is enough to wake me). That’s when I found my new best friend, the LectroFan white noise machine. It is a small white machine that plays 10 types of white noises and 10 fan sounds. I really appreciated that it has a precise volume control so you can incrementally increase it to the right sound volume for you, and it can play a surprisingly loud sound for such a small machine. The best part is that it has an option to play continuously, instead of having an automatic shut off after a set period of time, like many other machines. Now, I’m never anxious that sudden sounds will wake me up because I know I can mask them with the white noise machine.

Lights Off: Why Darkness is Better for Sleep

Your body’s sleep-wake cycle is governed by light and dark. Darkness cues production of the sleep-inducing hormone melatonin to get you ready for a good night’s sleep. Unfortunately, artificial light can suppress the production of melatonin, which makes it hard to fall asleep and stay asleep (National Sleep Foundation). One of the simplest and most effective things you can do to improve your sleep is to reduce exposure to artificial light at night and early sunrise in the morning (unless you prefer to get up at the crack of dawn). Absolute darkness is an insomniac’s best friend. Here are the tips I have found most effective reduce light exposure:

3) Black-out Blinds: if you aren’t familiar with them, blackout blinds are made of specially treated material prevents light passing through them. In my experience, they’re one of the most effective ways to keep my room dark enough for a better night’s sleep. Whether streetlights, headlights or sunlight keep you up, blackout blinds are one of the best solutions. You can even buy portable black-out blinds for home or travel. Heavy drapes or curtains can also keep your room dark. Since I usually need to sleep in relatively late in the morning in order to get enough sleep to last through the day, blackout blinds have been a saving grace because they keep the sunlight out. However, it’s important to open all your drapes and curtains and blinds when you to get up, because sunlight in the morning helps to maintain a healthy sleep-wake cycle.

4) Sleep mask: in addition to blackout blinds, I often also use a sleep mask. That might seem like overkill, but indoor artificial light is another sleep disruptor for me. The lights from digital clocks, nightlights, computers/TVs, someone else making a midnight trip to the washroom, and many other sources can wake me up.

5) Blue Light Filter: Different wavelengths of light affect your brain differently. Researchers have found that blue light, which has a short wavelength, suppresses the release of melatonin to a greater extent than other wavelengths of light (National Sleep Foundation). Blue light is given off by electronics like computers and cell phones, as well as energy-efficient light bulbs. If you use one of these devices shortly before going to bed, you will probably find it more difficult to fall asleep or stay asleep. The best option is to simply turn off all of these electronics a couple of hours before going to sleep. The next best option is to install a blue light filter on your phone/tablet. By reducing the emission of blue light, you can reduce the negative impact of using the device on your sleep. Some phones come preinstalled with a blue light filter, like the Samsung Galaxy, but there are blue light filter apps for every type of phone or tablet. Often you can preset the filter to turn on automatically at a certain time in the evening, so you don’t even have to think about it.

Strange Bedfellows: Coping with ‘Painsomnia’

If you live with chronic pain, you have probably endured countless sleepless nights. Because insomnia often accompanies pain, the term ‘painsomnia’ was coined to describe this struggle. When my pain flares up, I sometimes see my bedroom as a torture chamber rather than on oasis of rest! After much experimentation, here are my recommendations for making your bed more comfortable so you can sleep better at night:

6) Neck Pillow: Personally, without a supportive neck pillow, I develop serious neck pain and migraines. Orthopedic or ergonomic neck pillows are often designed in a contoured wave-like form, and support the natural alignment of the head, neck and spine. If you sleep on your side, there are specially designed contour pillows for you (usually advertized in the product description). Materials like memory foam, latex or bamboo fibre help provide consistent, durable support. Orthopedic neck pillows are more costly than regular pillows,. In my experience, though, buying one is totally worth it! Pillows should be replaced every 1-2 years.

7) Customize Your Mattress: I’m pretty sure the ‘Princess and the Pea’ fairytale was written about a girl with fibromyalgia. A bed can feel like some sort of torture device to someone trying to sleep with chronic pain. I recently had to buy a new mattress because my nighttime back pain was too much to bear. In the process, I learned that there are  many decently affordable online mattress vendors. Once you’ve selected a mattress, they ship it to you in a surprisingly small box, and give you a three month trial. If you decide to return it, you get your money back and the pickup service to retrieve the mattress is free. It was such a relief to know that I had enough time to test out my new mattress and, if I decided to return it, I didn’t need to worry about the cost.

8) Heated Mattress Pad: Unfortunately sometimes even the best mattress can feel uncomfortable to someone with chronic pain. My muscles become very tense at night while I sleep, and I often wake up quite stiff or with a muscle spasm.  One of the best things I have discovered for improving my sleep quality is the existence of heated mattress pads. A mattress pad looks like a regular fitted sheet but it has small wires woven into the material that release a gentle heat. You can’t feel the wires at all, at least not sleeping on the heated mattress pad that I bought. There is a bedside dial that you use to adjust the heat level, and if you buy a queen-size one or larger, each side of the mattress pad has a separate dial for you and your partner. Sleeping on the gentle heat of the mattress pad all night has definitely reduced the number of muscles pain flare-ups I experience. I am less stiff and less sore when I get up in the morning, and I sleep better overall.

9) Mattress Topper: Another option to make your mattress more comfortable is to use a mattress topper – an extra layer to provide additional support while you sleep. I previously used a memory foam mattress topper on my old mattress, which I found helped to relieve pressure points by contouring to my specific shape. Another mattress topper option is the CuddleEwe, which uses specialty wool, and is designed to relieve pressure on your body contact points when lying down (ex. shoulders and hips) by diffusing weight better than a mattress can.

(This post contains affiliate links, but recommendations are based on my own opinions and have been in no way influenced by third parties. Anything you purchase through the affiliate links helps to support this blog, so if you are planning on doing some retail therapy anyway, consider clicking on the in-text links).

 

Chronic Illness and Money Pain: The Honest Truth About Coping with Lost Jobs, Less Income and a Tight Budget

 

Chronic Illness and Money Pain: The Honest Truth About Coping with a Lost Job, Low Income and a Tight Budget

Chronic illness hurts all over, and that can extend to your budget. It’s not polite to talk about money, and that can lead to a cone of silence around this difficult subject. When I developed fibromyalgia five years ago, I was forced to leave my graduate program because I could no longer keep up. In the process, I lost my scholarship and my teaching assistant position. Now my husband and I live on a single income. I think it’s important to be open about how illness and disability impact income. First, it is vital to break down the stigma that ‘people who live on a reduced income are lazy.’ Second, I think it can be helpful for people living with long-term health problems to share their experiences and support each other with advice on how they cope with the challenges of life with illness.

Unfortunately, my inability to work is far from being an exception.  According to a Community Health Survey, 14% of people with fibromyalgia report being permanently unable to work (Parlor, 2007). That rate is 25% for working-age people with arthritis (Arthritis Society, n.d.). In Canada, only 51% of working-age people living with a disability are employed, compared with 75% of non-disabled working-age people (CCD, 2013). In addition, people living with a disability are two times more likely to work part-time than non-disabled people (CCD, 2013).

Not surprisingly, the reductions in employment levels among people with illness and disability lead to reductions in income. For example, 43% of people living with fibromyalgia reported their annual personal income to be below $15 000, compared with only 29% of the general population (Parlor, 2007). Overall, 20.5% of Canadians living with disabilities live below the poverty line  (CCD, 2013).

In addition, there are out of pocket medical expenses. This is bad enough in Canada, my home country, where many people may not have extended health insurance for medical drugs or treatments like physiotherapy or massage. In the U.S., there is no public medicare (national health insurance), so the medical expense of just seeinge a doctor can be prohibitive. The CDA (2013) reports that, in the U.S., medical problems are behind 62% of personal bankruptcies and almost 50% of home foreclosures.

Finally, for those who qualify for social assistance, income support is severely limited. In Ontario, Canada, the maximum financial support for a person living with a disability is $1151/month, for all expenses (Community Living Ontario, n.d.). In the U.S., the average monthly benefit for a family paid by Social Security Disability Insurance is $1,130 (CDA, 2013). Since this amount would barely cover rent and food, it is hard to imagine how anyone could even begin to pay for vital medical expenses or enjoy any quality of life.

Those numbers can look pretty bleak and do not capture the strength and resiliency shown by so many living with chronic illness!  It is important for those who do not live with chronic illness to understand that we work harder than anyone you know, everyday, to manage debilitating symptoms, earn a living if we can, participate in our family and social lives, and advocate for ourselves and others.

If your politics tells you that social assistance should provide only survival support for medical and living expenses in order to “incentivize” recipients to work harder, then you are condemning to poverty people whose only ‘crime’ has been to develop a chronic illness. Working harder is not a cure fore a chronic disease or permanent disability. I believe a compassionate and farsighted society should provide adequate medical and income support to people living with illness and disability, because inequality wastes human ability and restricts the freedom of people to participate fully in society. Appropriate accommodations can be put in place so that we can work, including flex hours, remote work opportunities, and many others. We all have something to contribute, and many of us would be able to do more if adequate social supports were put in place.

I’ll get off my soap box now. It’s time to get practical. Since we are where we are in terms of reduced income for people with chronic illness, what can we to do?

  • Build a budget. No matter how limited, every dollar will stretch further if we spend it on what we need. For a simple and practical approach, I like using Gail Vaz Oxlade’s budget builder http://www.gailvazoxlade.com/resources/interactive_budget_worksheet.html
  • For your weekly expenses, use cash! If you also suffer from brain fog, then you will sympathize with how hard it can be to remember how often you swiped your plastic this week. If getting out to the bank is a hassle, then get cash back at the grocery store, so you can do two chores in one.
  • Put your cash in labeled jars or envelopes, keep your receipts, and record your expenses. Clear glass jars work best for me. My budget jars are labeled: groceries, entertainment, drugstore, pet, clothes, transportation and allowance:  http://www.gailvazoxlade.com/articles/budgeting/magic_jars.html.
  • Don’t be too proud to get the help you need. Whether asking for financial advice, applying for social assistance, buying second hand, or going to a food bank if the fridge is bare, remember this isn’t your fault and you deserve the best quality of life possible.
  • Coping with debt and bankruptcy when you have a chronic illness, by Lene Andersen https://www.healthcentral.com/article/when-the-money-runs-out-chronic-illness-and-bankruptcy
  • Here is some advice on winning your fibromyalgia social security case, by Donna Burch: http://nationalpainreport.com/winning-your-fibromyalgia-social-security-disability-case-8831202.html
  • If you are interested in extra ways of making money from home, here are a few resources from Being Fibro Mom:     http://www.beingfibromom.com/category/financial/make-money/

References:

 CDA (2013) Disability Statistics

CCD (2013) Low Household Income and Disability

Parlor (2007). Canadian Women’s Health Network: Understanding Fibromyalgia

Community Living (n.d.) ODSP

Arthritis Foundation (n.d.) Arthritis Facts

Arthritis Society (n.d.) Facts and Statistics

 

“If It Was Me, I Would Just Give Up”: How Not to Compliment Someone Living with Chronic Illness

How Not to Compliment Someone Living with Chronic Illness

“You’re so strong. If it was me, I would just give up”

If you live with a chronic illness, you’ve heard this type of “compliment” over and over.  A well-intentioned friend, family member or colleague shakes their head at your everyday challenges, and says “I don’t know how you do it; if it was me, I would just give up and lie in bed all day“.  My stomach always twists when I hear these words.  I know it is meant as praise, to recognize the strength it takes to get through each day in spite of all the symptoms of chronic illness.  But if you say this comment to someone living with chronic illness, know that they will not feel flattered or pleased. When you express these sentiments, what you are communicating is that you don’t understand the nature of their daily struggle or how that comment invalidates their sense of worth. If you are a spoonie, I hope this post helps you find your own words to enlighten your friend or family member on how to compliment you. If you are someone who cares about a spoonie, I hope this might help you find a better way to express your admiration and encouragement.

“Where do you find the strength? I would just quit even trying”

 I frequently see social media posts by frustrated spoonies (people who live with a chronic illness), venting about how this type of comment makes them feel. It seems to be the most common way people try to praise spoonies. I think I am a stronger and wiser person after my experiences living with fibromyalgia. If my friends or family notice that change and want to recognize that fact, I wish they would say it as a positive about me, rather than frame it as a negative comparison on themselves. For example, I was discussing with my friend that I think I am coping with a recent setback in a healthier and more positive way than during the first years of my illness. A positive compliment from her would be something like “I think it’s amazing how you are just taking it one day at a time and staying positive even though I can see how difficult the situation is”. A negative comparison on herself would be “if it was me, I would just be wondering why the universe is conspiring against me – I could never see this in a positive light the way you do, it’s amazing.”

“It’s amazing that you even get out of bed every morning”

I’ve always struggled to respond when someone says something like this to me.  If I express a negative reaction, I’m afraid my friend will reply “I don’t understand, all I’m trying to say is that I think you’re great”. I never know how to put into words why, despite that intention, it makes me feel anything but great. I’m going to try to explain it here.

The simple reason that I don’t just give up and lie in bed all day is because that’s not a real option.  I don’t have the luxury.  It’s not a meaningful choice when you live with a condition that has no cure. This comment upsets me because it ignores the reality that I don’t choose to struggle through each day, I am forced to. The reason I don’t lie in bed all day (besides the fact that I would find it really uncomfortable) is not that I’m especially strong or heroic.  It’s because lying in bed all day would be mean giving up on surviving. At some point, you have to make a meal, take your kid to school, or have a shower – and you’re going to want to do that with the least amount of discomfort possible. Living necessarily means having to fight through all of my daily struggles.  That fighting spirit and strength, for me, is just the nature of living day to day.  I know perfectly well that if that same healthy friend who says “I would just give up” actually did develop a chronic illness, they would wake up every morning and try again, too.  Just like we all do.  Because we have to. I like to think that it’s human nature to survive, to put one foot in front of the other, and to keep on keeping on.

“I couldn’t face it day after day, I don’t know where you find the willpower to just get up and try again”

Beyond this, the main response most people living with chronic illness have to this form of praise is that they find it invalidating. While a life with an invisible illness or disability is challenging, the funny thing is, we still want to live it.  We still share love, have passions, make contributions, make art, and have dreams. Our lives are worthwhile and meaningful.  They are worth living.  Even with all the difficulties.  But when the main reaction to seeing what a day in the life of a person with chronic illness looks like is to say “I would just give up,” it invalidates the worth of living that life. It definitely is not a compliment! One person on social media wrote something like “so what, you think my life is so terrible that I should just curl up and die? thanks!” When I remember being healthy and non-disabled, I know that I was always amazed by people who were sick or handicapped but still vital and active-  and wonder whether I would be able to enjoy my life if I was in their situation. It’s a common reaction, but I think one that’s unhelpful to share. Instead, I hope the friends and families of spoonies will try to frame their compliments as positives about the person they care about, without any negative reference to themselves. Here are some more examples:

“I really admire the strength you show in trying all of these treatment options when I can see it isn’t easy”

“I think you showed a lot of grace under pressure when you experienced that setback”

“It took a lot of guts to pursue something you’re passionate about despite all of the recent challenges”

A Not-to-Do List for Life with Fibromyalgia

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I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness.  I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness.  In my own case I’ve found that most of my self-growth has come from recognizing, accepting and learning to do things differently in response to these restrictions.  I thought I would share my own not-to-to list:

  1. Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals.  When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me.  Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself.  Now I challenge these thoughts.  When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
  1. Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed.  These are people that you need to set boundaries with, regardless of any guilt they may throw your way.  Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people.  She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
  1. Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations.  Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body.  I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep.  So instead, I am writing one bullet point, then resting, then writing etc.  You have probably had ‘pacing’ recommended to you before.  Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc.  Instead, I regularly check in with my body and accommodate accordingly.  To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
  1. Do not add judgment of yourself on top of the challenges you already face: most of us are our own worst critics. We often set impossible standards for ourselves.  Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things.  When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place.  By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this.  When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’.  I take a deep breath and begin again.
  1. Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life.  Intentions are always present.  We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.

The Top 3 Things I Do Every Morning to Manage My Fibromyalgia

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Mornings are tough when you live with fibromyalgia. If you’re like me, you wake up stiff and tired, and shuffle out of bed. I usually sit in a stupor, drinking tea, eating breakfast and watching tv. I’ve learned that it’s what I do next that determines how the rest of my day will go. Here are the top three things I do to keep my fibro symptoms under control.

  1. Eat super seeds for breakfast. (And no, I don’t mean bird food!)

Seeds may be small, but they’re still super!  Seeds like chia, flax and hemp hearts (hemp seeds with the hull removed) contain several key fibromyalgia-fighting nutrients.  I usually add 2 tablespoons of seeds to my morning oatmeal or smoothie. Of course, it’s still important to have a balanced breakfast, with protein, healthy carbs and fiber. All three seeds are rich in antioxidants, which are critical for people living with fibromyalgia, because we have high rates of oxidative stress caused by tissue-damaging free radicals (read more about the importance of anti-oxidants to fibromyalgia here).  Chia and flax both contain a plant based source of omega-3, which is anti-inflammatory (although it’s important to note that omega-3 from fish oil is more potent overall).

 Two tablespoons of hemp seeds provide 50% of your daily recommended allowance of magnesium (chia comes in at 18% and flax at 14%).  Magnesium has been demonstrated in several studies to reduce fibromyalgia symptoms, and is important for nerve and muscle health.[1] Chia, flax and hemp seeds are also rich in essential minerals like manganese, phosphorus and iron. Chia is a great source of calcium. Did you know that women living with fibromyalgia have low levels of these minerals?[2]  All three seeds also contain fiber, which can be helpful if you suffer from digestive symptoms or IBS, and is good for your overall gut health. 

2. Stretch

Every morning I spend about half an hour doing a full body stretching routine.  Stretching is probably the single most important management tool I have for my pain.  I use a combination of stretches recommended by my physiotherapist, gentle yoga poses (like a child’s pose) and basic stretches I learned in gym class. A recent review of research into the effects of stretching on fibromyalgia treatment found significant improvements in pain and quality of life [3]. According to the Mayo Clinic, stretching improves flexibility, range of motion and increases blood flow to the area.[4] It’s usually recommended that stretches should be held for at least 30 seconds.  My physiotherapist suggested that, if I found this too painful, I should hold for 5 seconds, gently release, and repeat six times.  She said that gentle rhythmic movements are sometimes easier for our sensitive nervous systems to handle.  You may find it necessary to warm up before stretching by walking around your home several times and/or taking a hot shower. Here is a basic list of stretches: 

Cat and cow yoga pose 5 x
Child’s pose
Knees to chest (on back)

Keyhole piriformis stretch (ankle to opposite knee and pull) each side

Hamstring Stretch

Stretches for neck and shoulder pain

Forward head tilt
Ear to shoulder tilt both sides

“Nose to armpit” stretch

“Eagle arm” upper back stretch

3. Meditate

Early on after my diagnosis my pain specialist recommended that I take a Mindfulness-Based Stress Reduction course for pain management.  This is one of the best things I’ve done for my sanity and well-being!  There is a growing body of evidence that shows mindfulness meditation helps to reduce pain, anxiety and depression (read more about mindfulness and fibromyalgia here).[5] “Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine[6]. Being mindful means intentionally being present with your breath, thoughts, feelings and sensations.  Inevitably, your mind will become distracted by worries, memories, or plans. This is an opportunity to begin again, by gently guiding your awareness back to the present moment. You can practice mindfulness through breath meditation, body scans, mindful eating, or mindful movement like yoga or Tai Chi all of which, will in turn help you practice mindful touch (find a list of free guided practices in the references[7]).  I use the Insight Timer app on my phone to do an 8 minutes self-guided breathing meditation or listen to a guided meditation most weekday mornings.

[1] http://www.fmaware.org/magnesium-fibromyalgia-treatment/

[2] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3192333/

[3] http://fibromyalgianewstoday.com/2015/04/21/systematic-review-reveals-muscle-stretching-exercises-seem-improve-fibromyalgia-symptoms/

[4] http://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/stretching/art-20047931

[5] William, M. and Penman, D. (2012). Mindfulness, NY: Rodale. p.6.

[6] http://www.mindful.org/jon-kabat-zinn-defining-mindfulness/

[7] http://www.freemindfulness.org/download

Self-Care as a Mindset: What I Learned at the #SelfCareMvmt Summit

SelfCare Mindset

 

On Monday evening I attended the first ever Self-Care Movement Summit in Toronto, Canada. We arrived at the Mars building, a downtown hub of innovative tech and entrepreneurial companies, to register and enjoy catered refreshments, before taking our seats in the auditorium. The audience, of around 250 people, represented the diversity of the people who live with chronic illness – young and old, with visible and invisible chronic conditions. We were there to listen to a series of panelists and speakers talk about their personal or professional experiences using self-care strategies to meet the everyday challenges of life with chronic illness. As these informative and engaging speakers discussed the multifaceted aspects of this topic, I came to new realization about the meaning of self-care. Self-care is both a set of practical strategies, and a mindset, a particular way of understanding and relating to the activities of everyday life.

The core of the self-care mindset that emerged throughout the evening was acceptance of life with chronic illness. As Margaret Trudeau, the keynote speaker, summed up – coming to the realization that “this is the hand you’ve been dealt and the hand you have to play”. But finding acceptance is a long process. Margaret Trudeau shared her health journey living with bipolar disorder and how she experienced the five stages of grief after her diagnosis – more than once. She said that, in her experience, the first step towards accepting life with chronic illness is forgiving yourself. Your illness is not your fault. During the patient panel, Kirstie Shultz discussed self-care as being kind to yourself, every day. In her presentation on mindfulness practice, Dr. Lucinda Sykes talked about the importance of observing and learning from our daily experiences, without judging ourselves. Overall, humor was woven through many of the talks as a way to live positively with chronic illness. For example, John Bradley named his book on Crohn’s disease the Foul Bowel. Kristen Coppens described her eight illness as a “chronic party”. These insights into the self-care mindset are about relating to ourselves in a new way as we address the daily challenges of life with chronic illness, in a compassionate, forgiving, non-judgmental, humorous way.

The second theme that emerged about self-care as a mindset was finding balance in the activities of everyday life. In the patient panel, Marinette Laureano talked about a holistic approach to her self-care practice, by balancing her faith, family, friends and fun in her daily life. Kirstie Shultz described the zero-sum game of fatigue and chronic illness – working to find the balance between activity and rest. Kristen Coppens discussed the challenges of balancing work and illness. In his talk on this subject, John Bradley discussed achieving success against your own measures, rather than letting your goals be defined by the external world. He described his own experience working with chronic illness, and how he found balance by trying to “be the tortoise and not the hare” in achieving work goals. Balance as part of the self-care mindset is more of an intention rather than a constant state, a learning process of respecting the limitations of chronic illness while participating in the daily activities of life.

The third aspect of the self-care mindset is becoming an advocate in your community. Robert Hawke reminded us that, as patients, we are experts with our own wisdom about our health. Dr. Lucinda Sykes discussed mindfulness as a practice of developing insight about ourselves and cultivating the collective wisdom of people living with chronic illness. She said the summit was a celebration of human potential and our heritage of resiliency down the generations. Grace Soyao, of Self-Care Catalysts, explained that the voices of people living with chronic illness need to be heard and that we have the knowledge to drive change. Change like patient-centred care in the healthcare system, increasing research about chronic illness and reducing stigma about living with chronic mental or physical illness.  It can be hard to share our illness stories. Robert Hawke noted that we prefer to share our shiny selves with the world, rather than our difficulties and challenges. But when we do share our stories and everyday self-care strategies with each other, as Filomena Servidio-Italiano said, “The ordinary becomes extraordinary.” As part of the self-care mindset, advocacy is about self-empowerment, connection with the chronic illness community and society at large, and celebrating the greatness in ordinary accomplishments that we face every day.

Acceptance. Balance. Advocacy. Connection. These are all critical elements of self-care as a mindset and a way of relating to the ordinary activities of daily life with chronic illness. We can learn to pace our efforts, to eat nutritiously, to exercise more, to use practical self-care strategies. These are important wellness tools. But underneath, cultivating a self-care mindset is the key to improving our health and wellbeing as we live with chronic illness.

I want to thank Self-Care Catalysts and Health Storylines for an inspiring and informative evening. I’m looking forward to participating in advocating for self-care as a movement!

 

Self-Care for Chonic Illness: Research Round-up

Research Roundup

Part of being a health nerd means enjoying reading research. As a health nerd and a blogger I figured I should start a series of the most interesting recent research on chronic conditions. Learning about self-care has been an important part of my health journey, as well as a source of enjoyment for my inner nerd. So here is the first installment of my Research Roundup series, organized by self-care skills – Lifestyle, Exercise,  Attitude, and Nutrition. I hope this encourages you to make self-care part of your health journey! #SelfCareMvmt

  • Lifestyle: A recent Australian study investigated the most effective strategies for improving sleep among an elite women’s basketball team. The results may help you prioritize which strategies to try if you suffer from insomnia or poor quality sleep. The most effective bedtime routines were: turning off all electronic devices at least an hour before bed (that includes your phone), practicing mindfulness or meditation, and sleeping in a cool environment. These strategies were found to improve sleep and performance on the court.
  • Exercise: A New York Times editorial recently argued that moving more, not weight loss, is the cause of the dramatic health benefits of exercise demonstrated in hundreds of research studies. From arthritis, to cardiovascular disease, to Parkinson’s, to chronic fatigue syndrome, to depression, a massive meta-analysis found that exercise improved health and well-being among all these chronic conditions. It’s no wonder that the Academy of Medical Roil Colleges calls exercise a ‘miracle cure’. But moving more, as the editorial pointed out, does not require shedding blood sweat and tears. Instead, researchers recommend 150 minutes of moderate exercise per week. This could involve walking your dog or walking laps around your living room, cycling at the gym or gardening at home, doing seated tai chi by following an instructional DVD or vacuuming your house.
  • Attitude: Forgiveness can protect your health from the negative effects of stress, according to a new study. Researchers assessed 148 participants in terms of stressful life experiences, mental and physical health, and their tendency to forgive. As expected, high levels of lifetime stress correlated with worse health outcomes. Unexpectedly, a high tendency towards forgiveness eliminated the negative impacts of stress on health. In other words, forgiveness of yourself and others acts as a buffer against stress, eliminating the connection between stress and mental or physical illness. Interestingly, forgiveness is a trait that can be cultivated. Prior research has demonstrated that briefly praying or meditating on forgiveness can increase your ability to be forgiving in close relationships.
  • Nutrition: A new study weighs in on the debate about whether eating grains is good for you. You may be familiar with the paleo diet. Its proponents argue that the human digestive system has not evolved beyond the hunter-gatherer diet. Grains, they argue, are a modern invention evolutionarily speaking, and wreak havoc in the human body, whether through causing inflammation or exacerbating autoimmune conditions. On the other side of the debate, researchers argue that grains provide necessary nutrients, fiber and energy. This study comes down on the latter side of the argument. An international team found that a higher consumption of whole grains correlated with a lower risk of chronic disease and premature death from all causes. Three servings of whole grains per day (90 g/day) was associated with a 22% reduction cardiovascular disease risk, 15% reduction of cancer risk and 51% reduction in diabetes risk. It is important to know that no benefits were associated with intake of refined/processed grains or from white rice. (If you are interested in how to differentiate whole grain from refined grain products, follow this link).

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Photo by Lukasz Zajac

Shared to Fibro Friday Link-up at the Fibro Blogger Directory and Chronic Friday Linkup

It’s 3am, I’m wide awake, and feeling guilty about it

This morning, I woke up tired. I know, big surprise for someone living with a chronic condition. Whether it’s painsomnia, stress induced insomnia or regular old insomnia, it’s all too common.

I take a prescription sleep aid every night. I’ve stayed away from more effective but more addictive sleeping pills and currently take a low dose tricyclic. I also take several supplements. I have found that melatonin, 5-HTP and l-theanine are an effective combo. However I still get those nights where I wake up every couple of hours or can’t get back to sleep. Sometimes I give up in frustration and take an over-the-counter sleep aid as well. Other nights, like last night, I feel guilty about taking anything extra and just try to get back to sleep.
Now I’m exhausted. Or maybe I should say extra exhausted, since I feel fatigued most of the time. I’m wondering, what is that guilt about?

I always feel like I should take the least amount of anything that I need. I worry about what everything I already do take is doing to my body. I feel like I need to justify all of my prescriptions. I wonder if I failed somehow because meditating and yoga don’t make me sleep.

But, I have a bonafide diagnosis for a debilitating condition. According to my sleep study I come out of deep sleep into light sleep 14 times an hour. If I need to take extra supplements in the middle of the night then so be it, right?

I think this comes down to a sort of internalised stigma about being sick. The assumption that you must have done something wrong to get sick in the first place. Or if you do the right thing you’ll get better. Or maybe it’s the assumption that if you try harder, or get tougher, you’ll get over it. Acceptance of my condition has come in stages. Recognizing my own internalized ableism is another stage. I think it’s good that I want to take the least amount of medication possible, and try to see where supplements can work instead of prescriptions. But that attitude is only ‘good’ to the extent it helps me manage my condition, not when it becomes a means of self-criticism for being sick. I already have enough fatigue without adding extra sleepless nights because I wouldn’t let myself accept that I need help to sleep.