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Pain, Pregnancy & Prescriptions: Why You Should Treat Your Pain and How to Manage Safely (While Trying to Conceive & Pregnant)

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The first question I had after we decided to start TTC was about how to safely manage my medications during pregnancy. It’s vital not to under-treat your pain! Here’s where to find the info you need. And to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!

How To Find Out If Your Medications Are Safe During Pregnancy

During my 20s, I spent a lot of time and effort trying not to get pregnant. I used pills, patches and IUDs, coped with side effects, sat for hours in waiting rooms just to get prescription renewals, had a couple of scares thanks to late periods, and experienced all the other joys of being a woman using birth control.

It’s a surreal moment when you and your partner make the terrifying and exciting decision to you flip the switch, and start trying to conceive. Suddenly it’s all basal body temperature, ovulation predictor kits, and cervical fluid checks (and acronym hell – TTC, BBT, OPK, CF, TWW and BFP – it’s like a secret code!). Learning and tracking all of the ovulation signs is hard enough, never mind the challenges of pregnancy and parenthood, But for those of us with chronic illness, we face the additional hurdle of managing pain and other symptoms along the way. It’s vital to have a pain management plan while trying to conceive and pregnant:

“Because of fear about use of drugs during pregnancy, some pregnant women would rather suffer than treat their pain. Consequently, it is possible that such women are at risk of undertreatment, or no treatment, for painful conditions. Chronic, severe pain that is ineffectively treated is associated with hypertension, anxiety, and depression—none of which is conducive to a healthy pregnancy” (Motherisk).

The first hurdle you will most likely face, like I am right now, is how to safely manage your pain and other symptoms while you and your partner are trying to conceive?

How To Find Out If Your Medications Are Safe During Pregnancy

The first question I had after my husband and I decided we wanted to start trying was about the safety of my medications during pregnancy. At the time, I didn’t realize how complex this issue would turn out to be. It seems simple enough – a medication is either safe or unsafe, right?

Not so fast. In fact, a whopping “91% of the medications approved for use in adults lack sufficient data to determine the risk of birth defects due to use of medications during pregnancy” (CDC – Treating for Two).

The problem is that there are no double-blind, placebo-controlled research trials involving pregnant women. Why? Because it’s unethical to test the safety of a medication on a pregnant woman and her growing fetus – the potential consequence of causing a birth defect is too great a risk (CDC – Treating for Two).

Instead, the information doctors have about the safety of medications and pregnancy usually comes from observational studies of women who have chosen to take a medication during their pregnancy.

“Registries enroll pregnant women who have taken a certain medicine. Then, after these women give birth, the health of their babies is compared with the health of the babies of women who did not take the medicine” (CDC – Treating for Two).

The best you and your doctor can do is learn what information there is about the safety of the medications you take, weigh the potential health benefits and risks, and make a judgment call. But don’t fear prescriptions while TTC or pregnant. In fact, “Medications used in therapeutic doses for acute and chronic pain appear to be relatively safe in pregnancy” (Motherisk – click for a general overview of medications and supporting studies).

So where can you find the information that has been collected about prescription medication use before and during pregnancy?

In the United States, you can contact an organization called Mother to Baby, a nonprofit run by experts in birth defects. You can call toll free at 1-866-626-6847, text 855-999-3525, or visit the website at https://mothertobaby.org/.

In Canada, you can contact Motherisk at 1-877-439-2744 toll free or online at http://www.motherisk.org/

Prescriptions And Pregnancy: Get Out Of Here With Your Stigma

Prescriptions And Pregnancy: Get Out Of Here With Your Stigma

I take medications to manage my pain, including nortriptyline, tramadol and pregabalin. When I first went online to research this issue, I faced a wall of stigma and guilt-tripping over women taking prescriptions while trying to conceive or while pregnant. I felt a lot of stress and guilt about my “choice” to continue taking medications – as if I was somehow failing as a mother before I even became one.

I want to push back against any notion that taking medications to manage your pain while TTC or pregnant is in any way selfish. Yes, some medications are dangerous during pregnancy and the information we have about them is sometimes limited. You have to do your research and perhaps switch medications and emphasize non-pharmaceutical strategies to manage your pain (like massage, acupuncture, gentle exercise, yoga and meditation). But we also know that being in pain, stressed, and unable to sleep while pregnant is harmful to a growing fetus. Reducing those illness symptoms is actually a responsible act, something that a caring mother would do. So to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!

 

 

 

 

 

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How to Plan a Chronic Illness-Friendly Wedding

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How to plan a chronic illness friendly wedding

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I was daunted about taking on the chaos that is wedding planning. Through trial and error we were able to plan a wedding that mixed tradition with our own style and my health needs. I wanted to share what I learned about how to plan a wedding that a spoonie bride (or groom!) can not only survive but enjoy.

*Spoonie: A person living with chronic illness, based on the spoon theory

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1. Be unconventional –  the standard all day, all night wedding format is not spoonie friendly. You know, getting ready, early afternoon ceremony, pictures, sit-down dinner, speeches, and dancing until late in the night. Add to that the fact that a wedding is an emotional high in itself. Most of us would lose all our spoons before the ceremony was even though! So pick the traditional elements that are most important to you but design the rest of your day within your limits.

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In our case we picked a venue where we could have both the ceremony and reception, to limit the travel time – a historic house and gardens in Toronto called Cedar Ridge Creative Centre. We had an afternoon wedding, from 1-5, which was the length of time I thought I could handle. We had a garden ceremony followed by a cocktail style reception inside, with buffet lunch and wine. I gave up on dancing, because it’s not something my body agrees with. Finally, our photographer took mainly candid photos, except for a few posed family ones during the reception. This saved additional time.
I brought a bar chair to sit on during speeches (but still got sore from standing for too long overall). I was lucky that my best friend was an incredible maid of honour, and she did an amazing job at keeping me hydrated and fed  and reminding me to take mini-breaks. As the bride, you become very distracted by meeting and greeting all of your guests, so asking someone to help you remember your self-care plan is a key element to you enjoying your special day.

2. Be budget conscious …without too much DIY
Spoonies are often on budgets because of constraints on work and expenses on care, but  there is no need to go into debt to have a lovely wedding. We spent approximately $7000. The only additional expense was our choice to have a green wedding – organic flowers, catering and wine is slightly more expensive, but we felt it was worth it.

Here’s how we kept costs under control:

  • We rented a municipal property, which was far less expensive then private venues. Cedar Ridge Creative Centre is a historic house preserved by the city as an art gallery with public grounds.
  • We limited flowers. We only had bridal/bridesmaid bouquets during the ceremony, with the garden flowers standing in for floral arrangements. During the reception we had a few floral arrangements on serving tables – mostly single flowers in vases.
  • We only served wine rather than having an open bar.
  • Most significantly for saving on expenses, we didn’t have a sit down meal but rather a catered buffet lunch.  Everyone mingled and enjoyed chatting, which we really enjoyed.
  • Finally, we didn’t go away for our honeymoon, mostly so I could recover without the stress of travel. It also kept our costs down!

DIY can be taken to extremes and will most likely lead to flares. I would rather keep it simple than crash because I decided to do everything myself!

See if you can delegate – Our families helped by creating wall hangings (wallpaper on rectangular foam hung like paintings), and favours (seed bombs). My best friend baked a delicious gluten-free vegan cake (yes, it is possible but it took several trial runs!).
The only DIY I did was using rubber stamps on craft paper to make signs for the serving tables.

 

 

 

3. Organize brain fog away

  • Make a spreadsheet or use a planning app. When things randomly occur to you, add them immediately. Set aside time to review your lists when you feel less foggy. Most importantly, have your partner and maid of honour double check regularly. You will forget things and things will go wrong, so try to be accepting that this is part of the process.
  • I became good at delegating, and this was a surprisingly rewarding thing to do, Initially I felt guilty, but it was a warm and fuzzy feeling that  my friends and family were happy to help, showing their love and affection. Our wedding was better than we had hoped it would be and part of that was the feeling that everyone had pitched in to make it that way.
  • In order to relieve my anxiety that  would forget to tell someone something they needed for their tasks, we made checklist spreadsheets for all our ‘helpers’. It may have seemed a bit OCD but as I’ve said, stress is toxic for spoonies, and since it made me feel better, it was worth it!

4. Plan around tension and keep your boundaries
Oh family – things can sometimes get complicate. For example, I have divorced, remarried parents. A sit down dinner with seating arrangements seemed like a nightmare, so a cocktail party was my solution.

Because we planned our wedding in under 7 months, we came up with our plans for our day quickly. One bonus was this gave less time for anyone to share unwanted advice during the planning process 😉 Actually our families were mostly happy for us to plan the day how we wanted. From talking to friends planning weddings, I advise not having conversations with people whose opinion you don’t want while you are still in the planning stages.

In my opinion the advice that it’s your day so you can do what you want is unhelpful. It’s your marriage and you can do what you want… But the wedding is a celebration with your nearest and dearest. The day is really about celebrating with them. We compromised on a few things, but then we stuck to our plans. I found the phrase “oh that’s an interesting idea, I will talk to my partner about it” helped so much to show you are listening to your family members, but reserving the right for you and your partner have the final say.  Boundaries are important for spoonies as a key way to manage stress and tension in relationships –  which can be toxic to our health and well-being.

5. Practice self-care and take it one day at a time
Plan your self care! I asked my doctor for stronger sleeping pills for the days leading up to the wedding, which helped relieve my anxiety that a sleepless night would ruin my day due to fatigue. I put in appointments with my massage therapist, physiotherapist and naturopath in the days leading up to the wedding. I planned time alone and time alone with my fiance,  just to have fun. Still, I did not do this enough and started to resent the wedding for taking up all my available energy, which is limited enough as is.  In hindsight I would double the time taken for self-care and to make time NOT spent wedding planning.

My maid of honour carried an ’emergency kit’ throughout the wedding day. In addition to make-up and comb, we put in pain killers, indigestion relievers,  and scented calming oils.

Secondly, what I eventually learned was that there is only so much you can organize in one day. At some point you have to let go of what you can’t control and focus on the point of it all – celebrating this love you have found. I learned this by just getting too overwhelmed and having to give up on extra tasks. I  wish I had started by taking it one day at a time! But being a bride inevitably takes over for a little while, as any married person will agree.

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6. Finally, don’t read bridal magazines! This is NOT “the landmark taste-making event of your life” or whatever panic inducing nonsense they write. This is about love and family and friendship and fun. It’s A day, a big day, true, but not THE day. Spoonies don’t need extra stress! Or extra work! Or hand-dyed organic cotton ribbons to tie around chair backs for a shabby chic effect… Plan this day for you, your love, and your family and friends, not for anyone else!

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

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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 Blog Round-up: 6 Insightful Blog Posts About Celebrating the Holidays With a Chronic Illness

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Chronic Blog Round-up: 6 Insightful Blog Posts About Celebrating the Holidays With a Chronic Illness

Chronic illness complicates holiday celebrations. Trying to prioritize self-care while also participating in the holiday season is, at best, a tricky balancing act. Recently I wrote about how I use mindfulness meditation to get the most of this time of the year – to stay present, savour the good moments and manage stress.  I often turn to the collective wisdom of the blogosphere to learn how others approach the challenges of life with a chronic illness. I wanted to share a few of the insightful posts that I’ve read written by chronic illness bloggers. Some of them share helpful strategies and important ways to manage expectations so you can enjoy this time of the year. Others provide valuable insights that validated my own thoughts and feelings about what the holiday season is really like for people with chronic health conditions. I hope you get as much out of  reading them as I did!

Disabled Diva: Six Ways to Dominate Christmas With a Chronic Illness

More than just practical tips for getting through the holiday season, this post suggests great ideas for changing your  expectations about how to celebrate. For example, it asks whether you’re wearing yourself out trying to re-create past Christmas memories. I definitely fall into this trap every year! The suggestion to create new traditions that fit that are workable for someone with a chronic illness is really great advice.

My Brain Lesion and Me: A Christmas Symbol of Life With Chronic Illness

This lovely little post describes how a snowflake is the perfect holiday symbol for life with chronic illness. The experience we each have with chronic illness is as unique and individual as a snowflake. There are several important lessons this symbol can teach us, including that comparing ourselves with other people is an unproductive exercise.

Chronic Mom: 5 Gifts People With Chronic Pain Really Want This Year 

This post talks about the non-material gifts that people with chronic illness wish they could receive – like having their boundaries respected or not being criminalized for taking opioids to manage chronic pain. Raising awareness about the social changes that need to be made to really accommodate people with invisible illnesses is important because, really – that would be the best gift of all.

My Medical Musings: A Merry Little Chronic Christmas

I thought this post really captured the ambivalence that people with chronic illness may feel about the holidays – we hope we’ll be able to enjoy the plans that we’ve made, but we feel anxious that our symptoms will get in the way. Many people with chronic illness will be having a quiet Christmas or other holiday celebration. And while this can be truly enjoyable, we can miss the get-togethers and festive preparations going on around us.

ME/CFS Self-Help Guru: The Alternative Spoonie Gift Guide

If you care about someone with a chronic illness, this post describes the best way you can give your love and understanding to them this holiday season. For example, how to connect with them when a traditional holiday event just isn’t possible. This post really puts into words what I want to communicate to family members and friends this time of the year in a clear and thoughtful way.

Feasting on Joy: When Holidays with Chronic Illness are Hard: How to Find Rest and Survive Them 

This post is a very thorough guide to getting the most out of your celebrations this holiday season. It shares a mix of practical tips and important realizations for balancing rest and purposeful activities. This post is written from a Christian perspective on celebrating Christmas, yet I think the realization that intentionally focusing the activities you do choose on what is most meaningful to you can be helpful to anyone with a chronic illness celebrating a holiday. Prioritizing self-care and rest can take several forms and this post describes several useful strategies.

May your days be merry and bright this holiday season and may you be surrounded by the people you care about most! xx

Your Mindful Guide to Surviving The Holiday Season With a Chronic Illness

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Celebrating the holiday season presents many challenges for people with chronic illness, which can be very stressful. I’d like to share three easy mindfulness practices that have helped me to not only survive the holiday season, but get the most out of it. Mindfulness  is a practice of “paying attention, on purpose, in the present moment, non-judgmentally.”

Your Mindful Guide to Surviving the Holidays

It’s early December and that means we’re about to crash straight into the holiday season. As the shortest days of the year approach, many of us are anticipating gluttonous feasting, exchanging gifts, enjoying the company of family and friends and celebrating everything we have to be grateful for this year. Others are also anxious about the hectic schedule, financial strain or encountering certain crazy relatives (most families have at least one).

Chronic illness can complicate the holiday season further. Some people with chronic conditions feel like their family members don’t fully understand their limitations. Even the pressure to “just stay a little bit longer” or “pop by for a short visit” can cause us to push through when we really need to pull back – often resulting in a flare later on. If there are underlying conflicts with family members or friends, then spending a lot of time together attempting forced cheerfulness can also add stress. Constant fatigue, brain fog, food intolerances and pain can make frequent, large get-togethers focused around eating quite challenging, to say the least! Somehow we’re supposed to do it all without crashing from fatigue, badly flaring or getting a virus.

How To Get the Most Out of the Holidays By Using Mindfulness to  Manage the Stress

The consequence of having too much to do and too little time to do it in is stress. The symptoms of emotional and cognitive overload that accompany stress worsens chronic illness and  is a real challenge to manage this time of year. Emotional stress symptoms include irritability, anxiety, and low mood. Cognitive overload results in having trouble remembering things, difficulty concentrating, indecisiveness and constantly ruminating on what’s bothering you. If you find yourself feeling this way during the month of December, you’re not alone! My question this time of year is: how do I get through all of the challenges in order to be able to enjoy the holiday season?

I’ve come across many helpful posts challenges written by bloggers with chronic illnesses explaining how we can pace ourselves through the holidays, delegate responsibilities, adjust expectations and mitigate potential challenges. I’d like to contribute one more strategy for surviving the holiday season with a chronic illness – mindfulness.

I’m not talking about anything new-agey, religious or fringe. Mindfulness is a practical, evidenced-based approach to managing stress and reducing the symptoms of chronic illness. According to Jon Kabat-Zinn, a pioneer in the field of mind-body medicine, mindfulness means “paying attention, on purpose, in the present moment, non-judgmentally.”

Meditation is a way to practice being mindfully present. During meditation, the aim is to focus our attention by concentrating on a particular object, like breathing,  scanning the body, or repeating a mantra. Inevitably, we lose focus and become distracted by thoughts, worries, plans or emotions. When we realize this has happened, we gently bring our awareness back to the present moment – this breath, this moment.

“That sounds great,” you might say, “but the last thing I have time for is learning mindfulness meditation right now.” Do you have five minutes a day to watch television? Then you have five minutes to sit and listen to a guided mindfulness practice. Just sit. Just breathe. Just listen. That’s it. Here are three easy mindfulness practices that have helped me to not only survive the holiday season, but get the most out of it.

1) Take A Mindful Pause

One of the first casualties of a hectic schedule is time to process your experiences. The brain needs rest so that it can effectively take in information, process emotions and make good decisions. Otherwise we can become mentally and emotionally overloaded by trying to push through the stress and get on to the next thing. Mindfulness is a switch from the ‘doing mode’ (thinking, planning, worrying, shopping, baking, visiting… you get the idea) to the ‘being mode’ (think watching a sunset or savouring the taste of a great meal). Taking a few mindful breaks throughout the day gives us the mental rest we need to prevent becoming overwhelmed.

A mindful break can be as little as 1 minute but is usually 3 to 5 minutes. It involves intentionally shifting your attention to just sitting and breathing in the present moment. This year I’m planning on incorporating these pauses into my day. If I’m visiting, I might take a few extra minutes in the washroom just to breathe. Even if there’s nothing I need to do on a particular day, mindful breaks can still help reduce anxiety about future tasks and plans I’m worried about, by bringing me back to the present. The Free Mindfulness Project offers a number of excellent guided mindful pause meditations to download (as well as longer mindfulness meditations).

One of my favourite meditation teachers finishes his guided mindful break meditation by asking “what’s the next best thing you can do for myself right now?” Sometimes you can’t solve all your future worries but you can do something to improve things right now, such as making a cup of tea or delegating a task.

2) Put Love & Kindness at the Centre of Your Holiday Celebration This Year

Every year I face a battle with my own expectations about what the holidays should be like. It’s very easy to internalize expectations about what you ought to be able to do and feel guilty if you can’t live up to those self-imposed standards. Maybe you wish you could give your kids the perfect Christmas morning, go to every holiday party you’re invited to or cook the perfect traditional meal for your entire extended family. When you have to cut back on your activities, it can be hard to feel like you’re letting down some of the people you care about most in order to look after your health.

Unrealistic expectations, whether internalized or externalized, only cause unnecessary stress. Instead of trying to have a holiday worthy of a Lifetime movie, what if we refocus our energy on putting love, kindness, gratitude and giving at the centre of our celebrations? These practices can be incorporated into traditional family celebrations – like this idea of having each family member dedicating an ornament to something they are grateful for before hanging it on the tree.

But how do you stay in the spirit of the season despite the pressure of expectations? The ‘loving-kindness meditation’ can help you deepen compassion, and increase your feeling of connectedness to the people around you. In the guided meditation, we are invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their health, happiness and well-being (“May they be happy, may they be healthy, may they be free from suffering, may they be peaceful”). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to ourselves – a powerful and important component of the practice, especially if we are feeling guilt over our limitations. Here is an additional guided practice, along with the script, from Mindful Magazine.

3) Take in the Good

Are you more likely to remember compliments or criticism?  If you’re like most people, you pick the latter.  That is because the human brain has a built in “negativity bias”, which allows us to learn from and protect ourselves from bad experiences. Unfortunately, it can also make us stressed and anxious. During December, I often spend most of my time worrying about how I will make it through all my plans . Once it’s over, I sometimes feel like I’ve missed out on enjoying the best moments because I was worried about the next thing. One way to rewire your brain so that it takes positive experiences into account, along with the negative, is to be intentional about what Rick Hanson calls “taking in the good”. This is akin to the old saying to “stop and smell the roses”. But exactly how do you go about making this a habit?

The first step is to be mindful of positive moments (to notice the roses) – the warmth of a good fire, sharing a laugh with loved ones, the taste of turkey and mashed potatoes. Practicing mindfulness meditation can help with this part, but you can also just start with the intention to take in the good today. Second, pause for 20-30 seconds and focus your attention on savouring the experience, instead of moving on to the next thing. Then, let the positive experience sink into you.  You can do this by visualizing a warm feeling spreading through your torso or by mentally recognizing that by doing this exercise you’re rewiring your brain to tilt towards positive experiences.

If you do this several times a day, you can change the neural pathways in your brain so that positive experiences are ‘registered’ more in your overall outlook on the day.  This practice has been really helpful for my mental and emotional health while I deal of the challenges of chronic illness. Sometimes symptoms get in the way no matter how much pacing or stress management we practice. This can be disappointing. But I have found that taking in the good and enjoying the small moments really helps me to balance out the disappointments. One year I was too sick to leave home and had to miss Christmas Day with my family, but eating homemade cookies at home, with the tree lit up, while watching a Christmas movie was still a nice, cozy evening.

 

 

Chronic Illness & Pets: The Healing Power of Hope

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Did you know that spending time around pets can reduce pain and improve mood? But more than that – through their affection and antics – they give us a sense of optimism and hope for the day ahead. The slow-paced life that comes with chronic illness means we can give them companionship and endless cuddles. It’s a perfect match!

Chronic illness and pets

Two days ago this cutie came to live with us and we couldn’t be more excited. Her name is Sarah and she’s an affectionate, but shy, two-year-old grey tabby. Her arrival felt like a ray of sunshine on a grey day.

sarah

Pets enrich our lives and the benefits can be measured in health improvements: “According to the Centers for Disease Control and Prevention, pets… can help lower blood pressure, cholesterol levels, triglyceride levels, and feelings of loneliness. They can also increase opportunities for getting exercise and engaging in outdoor activities, as well as provide more opportunities for socializing with others” (Confronting Chronic Pain). In particular, contact with animals been found to benefit people living with chronic pain. For example, visits with therapy dogs at a pain management clinic was found to reduce pain and emotional distress in patients, as well as improve the emotional well-being of friends and family members who were there with them (Confronting Chronic Pain). Pets help reduce pain and stress, as well as giving their humans companionship, and a sense of purpose.

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Four months ago we had to put our lovely 18-year-old cat Lily to sleep. She was originally my husband’s cat and we all moved in together about five years ago. Lily with fiercely loyal and affectionate. Initially she didn’t think much of me because I took up too much of my husband’s attention. Her modus operandi was nonviolent resistance – she never scratched a human being in her life. Instead, Lily showed her opinion of me by scratching my chair and attempting to get my husband’s attention if she felt he had not paid her due deference. But since I was her daytime companion, the giver of treats and nearest available warm lap, we became friends and, eventually, family . Lily’s favourite time was when the gang was all together in the evening, sitting together – and preferably paying attention to her. She was always there for me on the hardest days when I felt unwell, and it meant a lot to me that I was able to be there for her in her golden years. Saying goodbye to her has been a big loss and has made getting through my health challenges that much harder.

We knew that if we waited to ‘get over’ losing Lily to adopt another, we would probably wait forever. Enough time has passed that we felt ready to welcome a new, and different feline into our lives. Sarah has had a difficult two years of life. She was a stray who comes from a high-kill shelter and didn’t have much contact with people, until a foster family took her in. They provided her with a good home, but apparently the presence of multiple cats and kids was a little overwhelming for this skittish girl.

They think she will thrive in a peaceful and quiet environment. That pretty much describes life at home with me and my husband. Living with a chronic illness necessitates a slow pace of life. Sleep in; breakfast, coffee and the news; stretch and meditate; spend the afternoon writing and on the computer, nap breaks in between; go for a walk when my husband comes from work; and spend the evening together catching up on our favourite shows. Sarah will have lots of company, plenty of time for play sessions, and no one will interrupt her cat naps. I will gain companionship, the endless amusement that cats can provide (like watching an endless playlist of cat videos) and the enjoyment of taking care of another (something other than my health).

As a person with chronic illness, living in a society obsessed with productivity, I often feel like a round peg in a square hole. My goals include learning to savour the small moments, staying present more of the time, and learning to take more time off and push myself less. The goals of my friends include career success, home-ownership and completing their first triathlon next year. For them life is busy busy busy and for me it’s the opposite. There’s something wonderful about the fact that Sarah will fit into my slow-paced lifestyle like a round peg in a round hole. Once she gets used to us, my hope is that living here will be safe and healing for her. I hope she will be sleeping on our clean laundry, getting into trouble and generally bossing us around in no time.

Hope. It’s a powerful force. When you live with a health condition that’s lifelong, the chronic part can blunt the hope part. It’s easy to become habitually cautious about anything new – after losing many of my abilities, I have a lot of self-doubt about what I’m capable of. When we saw Sarah’s picture and read her story online, I was torn between hoping we could provide her with the right home and the creeping doubt of trying anything new that people who live with chronic illness develop over time. I worried about the differences between looking after a geriatric cat you know well and an energetic two-year-old cat you’ve just met. Writing the animal rescue coordinator to start the adoption process was a spontaneous act of hope. Of course, there are things that I reasonably should not attempt to do because they will leave me feeling awful, such as working full time or attempting a triathlon. But that there are other things that I reasonably could attempt to do, but a lack of spontaneity – of joie de vivre – and, yes, of hope –held me back. I’m glad I didn’t listen to the voice of doubt.

For the moment, Sarah has primarily taken up residence living under the futon. Last night she came out for the first time while we were awake, walked around, and lay down to survey us. It was an exciting moment, and the first step she took in trusting us. Eventually she will be part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of hope that pets like Sarah offer us most.

*Update* Sarah has come out of her shell in the last few weeks and it turns out she has a big personality. She meows to demand pets but has a royal protocol for how to be petted – first a chin scratch, then a head pat and finally a back scratch. She meows to scold us if we scare her (walking quickly, reaching down towards her, picking up a big object). She trained us to play her favorite (and only) game – tossing kibbles for her to chase. Sarah gets down in an adorable crouch, super excited for the next kibble. She sleeps with reckless abandon in a way I can only dream of doing.

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Fibromyalgia Fatigue: The Top 8 Supplements I Take to Improve My Energy

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Fatigue is a disabling symptom of fibromyalgia – but I have benefited from several supplements which improve my energy. This article explains the difference between adrenal and mitochondrial energy supplements, how they work and what the research says.

This post contains affiliate links, which help support this blog. I only link to products that I use and like – my opinion has been in no way influenced by the makers of the products I recommend.

Tart Cherry

My Christmas present one year was an evil cold. I had been lucky the past several years not to encounter any viruses. After reading about the  negative experiences of other bloggers with FM or CFS who have caught a flu or a cold, I was nervous about the potential consequences. My worries were realized when, after my other cold symptoms cleared up, the extra fatigue didn’t disappear too. My fibro fog and afternoon fatigue were the worst I had ever experienced!  I spent the months after trying to figure out how to recover my energy to my baseline level.

Prior to this cold, my ‘energy envelope’ consisted of:

  •  required 10 hours of sleep
  • most energetic in the late a.m. and evening, lowest in the afternoon
  • able to do 3-4 hrs of blogging per day
  • able to spend one evening per week out

Now, even 11 hours of sleep was unrefreshing. I had to drop my classes because of afternoon crashing. The strangest symptom was visual over-stimulation – for example, difficulty making sense of store displays during an energy crash. My acupuncturist explained my post-viral fatigue as a failure of my body to turn off the sickness response. In other words, your body makes you feel tired and achey when you get sick to induce rest, so energy can be redirected to your immune system. Usually that response stops when you get better, but sometimes your body fails to ‘flip the switch’ from sick mode to healthy mode.

In the last few years I have discovered that my energy is impacted by two primary factors – adrenal function and mitochondrial function. The challenge is to figure out how to best support energy production in your body, both at the cellular level (mitochondrial) and organ system level (circadian rhythm and/or adrenal fatigue).

Adrenal Glands and Energy Production stop scrolling down

In a previous post, I wrote about the results of my adrenal function test. The adrenal gland regulates the production of several critical hormones, including cortisol and DHEA. Cortisol, also known as the ‘stress hormone’ is produced by the adrenal glands (glands that sit on top of the kidneys). Cortisol regulates many of the body’s responses to stress, including blood sugar levels, metabolism, immune responses, blood pressure, and central nervous system activation. Although high levels of cortisol are released, alongside adrenaline, to initiate the ‘fight or flight’ response to stressful situations, it also plays a role in day-to -day functioning. Cortisol is released in the morning to help you become alert and focused. It is supposed to decline gradually during the day so that by evening you feel sleepy and ready for bed. Proponents of the theory of ‘adrenal fatigue’ argue that initially, in stressful circumstances,  adrenal glands overproduce cortisol. But if a high-stress situation persists over time, the fatigued glands begin to under-produce cortisol, resulting in low daytime levels and worsening daytime fatigue (Life Extension: Stress Management).

The results from an adrenal function test show that my cortisol curve is all off. I start the morning at the low end of the normal range, but then my cortisol slumps significantly by mid-afternoon, and finally increases to the high end of the normal range by bedtime. These results explain my mid-afternoon crash and energetic evenings (not to mention insomnia). According to my naturopath, this pattern of low daytime cortisol and high nighttime cortisol is characteristic of a disordered circadian rhythm in some people with fibromyalgia.

So how can you improve your overall energy by supporting your adrenal function?

  • Vitamin C and B5 (Pantothenic Acid): Both of these vitamins help promote adrenal function. They are inexpensive and provide a good foundation for re-balancing cortisol production. Vitamin B5 is a lesser known but still important member of the B vitamin family and it is used for energy production in the body. According to Dr. Teitelbaum, “your body’s highest levels of vitamin C are found in the adrenal glands and brain tissues, and the urinary excretion of vitamin C is increased during stress” (From Fatigued to Fantastic p. 90). Vit C formulations can be more or less potent and come with or without added antioxidants. I like Natural Factors Extra C + Bioflavonoids.
  • Licorice Root Extract:  In order to try to sustain cortisol throughout the afternoon to prevent the usual crash, I added licorice tincture on really tired days. It helps slow the breakdown of cortisol in the body, so whatever you do produce stays around longer (Life Extension: Stress Management). (Licorice is not for people with high blood pressure, so please check with a health care provider to see if it is appropriate for you and do your research first). I prefer to use a liquid extracts/tincture because I can tailor the dose – I found the average capsule dose made me jittery but with a liquid I can take just a few drops. Dr. Teitelbaum recommends the equivalent of 100 to 150 mg daily.
  • Time Release Melatonin: In order to improve my circadian rhythm, I added 5mg of sustained / time release melatonin at night.  Melatonin reduces cortisol, so it helps me with my elevated night-time levels (Life Extension: Stress Management). This stuff is quite effective! I have been sleeping through the night more regularly since I added this to my night time pill regimen. (I found regular melatonin did not have this effect).
  • Rhodiola: finally, I am also taking Rhodiola to support my nerve and endocrine system functions. Rhodiola is considered to be an adaptogen, and studies demonstrate that taking this supplement improves stress tolerance by “influencing key brain chemicals, such as serotonin and norepinephrine, and natural feel-good opioids such as beta-endorphins” (Life Extension Magazine: Rhodiola).  Rhodiola helps to promote mental focus and energy – key for those of us with fibro fog!

Fibromyalgia and Mitochondrial Function: Improving Energy One Cell at a Time 

Secondly, mitochondrial function is a critical part of increasing energy in fibromyalgia. Mitochondria are the power plants of our cells.

Studies suggest the energy factories may be running a bit low in FM. Muscle biopsies have found patterns of mitochondrial dysfunction (abnormal mitochondria, mitochondrial defects and muscle fiber abnormalities) similar to those typically found in mitochondrial disorders. Some skin biopsies have shown patterns of neurogenic inflammation and oxidative stress – two factors that negatively impact the mitochondria. Peripheral blood cells have demonstrated CoQ10 deficiency, mitochondrial dysfunction, oxidative stress and mitochondrial degradation (Health Rising: Is FM a Mitohondrial Disorder?).

I’m trying to take a combination of supplements that are factors used by mitochondria in the production of energy.

  • D-ribose:  D-ribose is a sugar produced in the body and taken to alleviate fatigue and pain in fibromyalgia and chronic fatigue syndrome. Dr. Teitelbaum contends that CFS/FMS is caused by “energy crisis” in the body, leading to a cascade of different symptoms like fatigue, pain, sleep disturbance, among others. One root cause of the energy problem, he argues, is that the ability of the mitochondria in your cells to generate energy is suppressed. Mitochondria produce the energy, called ATP, used by your cells to carry out all their functions. D-ribose is essential to the production of ATP. Therefore, taking additional D-ribose should help to support mitochondrial function and improve energy output in fatigued patients.  Dr. Teitelbaum has authored a few pilot studies that have demonstrated some promising results. The most recent study was an open-label study published in 2012. Significant improvements were found; specifically a 61.3% increase in energy, 37% increase in general well-being, 29% improvement in sleep, 30% improvement in mental clarity, 15.6% decrease in pain (Teitelbaum: From Fatigued to Fantastic).
  • CoQ10, a powerful antioxidant, is the catalyst that enables mitochondria to produce 95% of all cellular energy (in the form of the compound ATP). A Spanish research team has conducted several studies that demonstrate a CoQ10 deficiency in people with fibromyalgia, leading to mitochondrial dysfunction and increased oxidative stress. These researchers have also found that supplementing with CoQ10 improves clinical symptoms of fibromyalgia like pain, depression and fatigue (Phoenix Rising: CoQ10).
  • Acetyl-L-Carnitine, is an amino acid produced in the body from l-carnitine which is used to manufacture fuel for energy via mitochondria. This nutrient is also used in bodily processes that regulate muscle movement, as well as heart and brain function. People with fibromyalgia have been found to have low levels of carnitine. Supplementing with acetyl l-carnitine has been found in a double-blind placebo-controlled study to improve pain levels, depression and quality of life among people living with fibromyalgia (Prohealth: L-Carnitine).

Since starting this combination of adrenal and mitochondrial support, my afternoon crashing has evened out. My fatigue does not bottom out in the afternoon (less brain fog and no visual over-stimulation). I finally regained my pre-viral energy envelope. I am sharing all of this in the hope it gives some direction to others finding themselves in a similar situation! Take care of yourselves, dear readers!

 

Life Extension (Rhodiola)

Life Extension (Stress Management)

Health Rising (Is FMS a Mitochondrial Disorder?)

Phoenix Rising: (CoQ10)

Prohealth (L-Carnitine: Typically low in fibromyalgia and ME/CFS; Promotes healthy mood and energy)

Teitelbaum, J. (2007). From Fatigued to Fantastic. Penguin Books: NY.

Why Your Diet Isn’t Working & What You Need to Know About the Power of Personalized Nutrition

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Weight loss is a challenge, especially when you have a chronic illness. Here’s how learning about the importance of personalized nutrition helped me and my family reach healthy weight goals.WHY YOUR DIET ISN'T WORKING

After a gluttonous Christmas one year, my husband and I looked at ourselves and decided we had to go on a diet. Things had been spiraling downward for a while. The primary factor was that I had been diagnosed with a chronic condition the year before (fibromyalgia). Pain and fatigue made cooking healthy or moving more just seem too difficult. In my husband’s case, catered meetings at work meant one too many many muffins. So we went on a plant-based, nutrient dense diet. I lost weight, about 20 lbs., and kept it off. My husband did not – even though he swore he only looked at the muffins. How does that work?

The answer lies in the fact we each have a unique physical and genetic makeup. A 2015 study investigated post-meal glucose levels in 800 individuals over the course of a week. They found significant individual variation among the participants in the blood glucose levels caused by different foods, even when they ate the exact same, standardized meals. For example, in one participant sushi caused their blood sugar to rise higher than ice cream, while another found that healthy tomatoes spiked her blood sugar.

Researchers attributed this variability to a combination of physical makeup (weight, blood pressure, etc.), lifestyle and gut microbiome (the unique gut bacteria in our digestive tract). In fact, an algorithm based on these factors was able to accurately predict personalized post-meal glucose reactions to specific foods. Using this information, researchers designed individual nutritional recommendations that eliminated the foods that caused high glycemic reactions, which led to overall lower blood sugar levels among study participants.  It is this individual variability that explains why one of your friends is trying to convince you to eat like a carnivorous caveman to lose weight (hello, Paleo), while another swears that rabbit-food veganism is a game-changer. Essenially, different people respond differently to different diets. My husband found a high protein, low(er) carb vegetarian diet worked for him. He needs high protein dairy options like greek yogurt and cottage cheese, while I don’t.

Another example of individual variability in nutrition is sensitivity to dietary cholesterol. For most of us, the liver produces 85% of our cholesterol and the rest is acquired from our dietary intake. If we eat a cholesterol-rich meal, our body responds by manufacturing less cholesterol to maintain healthy blood levels. However for about 30% of people, their sensitivity to blood cholesterol is blunted, leading to problems regulating healthy levels. For these individuals, if they eat cholesterol-high foods, their blood cholesterol goes up because their body fails to sufficiently reduce how much cholesterol is manufactured in the liver. These people are at an increased risk of having high cholesterol.

As you might expect, research into the relationship between our individual genetic makeup and our nutrition, called nutritional genomics, is a rapidly expanding field. Lactose intolerance is one example of how genes can affect your reaction to food – certain variations of specific genes confer lactose tolerance, while other variations cause intolerance. Many researchers argue that personalized diets are the future of nutrition, rather than broad dietary recommendations or one-size-fits-all diets. However, the application of these research insights are not yet widely available to enable people to develop an individual diet based on factors like genetics, physical makeup, and gut microbiome.

One step everyone can take to personalize their diet is to try an elimination diet, which will helps to identify food intolerances and sensitivities. A food intolerance is a nonallergic reaction that causes negative bodily symptoms like digestive problems, skin irritation and fatigue. Food intolerances can cause inflammation of the digestive lining. If one diet plan is not helpful, then consider trying another, until you find what works best for your body. Here is a list of the three best diets for fibromyalgia, according to science (vegetarian/vegan, gluten-free and FODMAP free), as well as helpful resources to get started.

The good news is that there is one diet plan that is always good for you. What is that diet? Eating whole foods. Not necessarily raw, organic, GMO-free or local foods (although there are lots of good reasons to choose some of those options too). Whole foods mean food as close to their natural state as possible – carrots in the earth, grapes on the vine, or fish in the sea. Real foods are not processed, refined, added to, fortified, or otherwise messed about with by a food chemist. This is the one diet you can’t go wrong following.

References:

Dr. William Sears. Prime-Time Health (2010): http://www.amazon.com/Prime-Time-Health-Scientifically-Proven-Feeling/dp/0316035394?ie=UTF8&*Version*=1&*entries*=0#

Nutritional Genomics and Lactose Intolerance http://nutrigenomics.ucdavis.edu/?page=information/Concepts_in_Nutrigenomics/Lactose_Intolerance

Zeevi, D. et al. (2015). Personalized Nutrition by Prediction of Glycemic Reactions.  Cell. 163(5), p. 1079-1094.

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

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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

 

Optimism and Chronic Health Conditions: Is ‘Think Positive’ A Cure, A Daily Boost, Or A False Promise?

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Having a positive attitude will not cure you. Saying otherwise to people living with chronic conditions invalidates their experiences. But cultivating optimism can improve your quality of life, and help you to live better with a long-term illness.

Optimism and Chronic Illness

Are There Negatives to ‘Think Positive’ Advice for People with Chronic Conditions?

I was in my physiotherapist’s office when she probed an unexpectedly painful spot. This was the year my body began to fall apart and I had gone to see her in a desperate attempt to relieve the pain in my neck, shoulders, back and pelvis. When she found an agonizing point on my leg, I burst out in frustration: “Stupid body!” The problem, my physiotherapist informed me, was not physical, it was mental. My bad attitude about my body was the source of my pain. If I could learn to let go of my negativity, then my chronic pain would be resolved. Basically, positivity was the cure. I left her office both angry with her for dismissing my very real, body-wide pain, and riddled with self-doubt over whether my outlook on life was in fact the source of my illness. I wasn’t alone in my experience:

The idea that optimism is all you need to achieve anything you want, even recovery from illness, is now conventional wisdom. In her article Smile! You’ve Got Cancer, author Barbara Ehrenreich writes about her experience with breast cancer. Ehrenreich (2010) describes that, when she went online to learn from the experience of other survivors: “The first thing I discovered as I waded out into the relevant sites is that not everyone views the disease with horror and dread. Instead, the appropriate attitude is upbeat and even eagerly acquisitive.” She recounts examples of this kind of thinking, including quotes like this one from Jane Brody: “breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living.” Ehrenreich calls this message “the tyranny of positive thinking.”

But, Can a Positive Attitude Actually Improve Chronic Illness?

Is Ehrenreich too fast in dismissing the potential benefits of optimism? Research consistently supports the idea that having a positive outlook can lead to positive health outcomes. In fact, a number of studies have:

…shown that a high level of optimism is linked to both enhanced physiological recovery and psychosocial adjustment to coronary artery bypass surgery, bone marrow transplant, postpartum depression, traumatic brain injury, Alzheimer’s disease, lung cancer, breast cancer, and failed in vitro fertilization (Goodin and Bulls, 2013, p. 329).

Before we go any further, I think it is helpful to define what it means to have a “positive attitude.” Researchers commonly equate positive thinking with optimism. Optimists are defined as “people who expect positive outcomes to occur in their future” and who are “likely to persist in their goal-directed efforts, where as those low in optimism are more likely to withdraw effort, become passive and potentially give up on achieving their goals” (Goodin and Bulls, 2013, p. 329).

The rationale for urging patients to develop a positive attitude is, essentially, that it will enable them to recover from their condition, and improve their quality of life along the way. I think there is a crucial difference between these two claims. The first claim is that a positive attitude will actually change the course of your disease, while the second claim has to do with an improved quality of life while living with illness.

Stop Blaming the Victim: Chronic Conditions Are Not Cured by Positivity

When it comes to the first claim, Ehrenreich (2010) shares her frustration that  “it remains almost axiomatic, within the breast cancer culture, that survival hinges on ‘attitude’.” This message also happens to be wrong – researchers have found that optimism does not increase survival rates for cancer (Medical News Today, 2004).

The positivity dogma shifts the cause of disease from being a physical malfunction to a character flaw – if only you were positive enough you wouldn’t have developed fibromyalgia or your cancer wouldn’t have metastasized. It is the worst kind of blame-the-victim thinking.

And while it might seem easy for people living with illness to dismiss comments suggesting they developed their condition because of their bad attitude, the problem is that illness makes people prone to feelings of guilt. Not only are our own lives changed, but so are the lives of family, friends and colleagues who depend on us. We feel guilty for the burden that our illness places on others, and that makes us vulnerable to self-blame. As the American Cancer Society explains, positivity-as-cure can be a deeply destructive message because it makes the patient culpable for getting sick in the first case and places the burden of recovery on their ability to be cheerful about it along the way (Edmonson, 2017).

The pressure to be optimistic invalidates the normal and natural feelings of grief that accompany illness. To suggest that grieving itself worsens illness, that these feelings should be repressed in favour of positivity, actually makes learning to live with the condition more difficult. If you are a friend or family member of someone living with a chronic illness you should know that attempting help by saying “you should be more positive” dismisses the very real feelings of the person you care about. In fact,

“A study published in the New England Journal of Medicine that analyzed the effects of expressing authentic emotions among breast cancer patients. And guess what? The researchers found that women who were able to reveal honest feelings showed overall mental-health improvements and reported less physical pain than the women who kept things bottled up” (Edmonson, 2017).

If you are a person with a chronic condition, let me be clear – your illness is not your fault, your feelings of grief and anger are natural, and recovering or managing your illness does not hinge on being happy all the time.

But Cultivating Optimism Can Improve Quality of Life for People with Chronic Conditions

The second claim about the benefit of positivity is that your perspective will influence your experience of illness – that being optimistic will help you cope better with your symptoms.  Since symptoms like pain and fatigue are ultimately subjective (based on personal feelings), it seems intuitive that your mental outlook might colour your experience of symptoms. This is not to say anyone should try to be positive all the time, or at the expense of expressing authentic emotions, but that working towards optimism, hope and acceptance can reduce suffering and pain.

It turns out that there is a large body of evidence which supports this notion. Greater optimism has been linked to reduced pain levels in people with different types of cancer, as well as arthritis (Goodin and Bulls, 2013). Interestingly, optimism has also been associated with adjusting better to life with a pain condition because of factors like paying less attention to pain symptoms, better daily mood, and less catastrophizing (thinking the worst; assuming every negative event will be an overwhelming disaster).

The idea that a positive attitude could improve my quality of life with chronic illness feels less blaming and dismissive to me than the dogma “survival hinges on attitude” which Ehrenreich describes . First of all, it doesn’t suggest that developing fibromyalgia was my fault because it makes no claims about cure or recovery. Secondly, it makes positive thinking more of a goal to work towards, if I choose. Grief and acceptance come in waves and learning optimism is not about repressing sad or angry feelings.

The idea that a positive outlook might improve everyday life doesn’t dismiss the reality of grief or other negative feelings, but it does provide an option for cultivating a better relationship with my pain and illness, if I decide that my current state of mind is not helpful to me anymore.

Is a possible to cultivate optimism, hope and acceptance? It appears that optimism, and its related traits of hopefulness and acceptance, can be learned. Our brains have the ability to change by forming new neural connections with repeated practice, a phenomenon called neuroplasticity. I have listed a few resources below if you are interested in science-backed strategies for learning greater optimism.

  • An app called Bliss has a number of proven exercises that can increase optimism, such as expressing daily gratitude, visualizing your best possible future and purposefully savouring the good things that happen each day.
  • One of the most powerful tools that has helped me to cope with my illness is practicing mindfulness, usually defined as “non-judgemental, present moment awareness”. I attended a Mindfulness-Based Stress Reduction course at my pain clinic that introduced me to how cultivating presence could help me manage my pain.  Much of our anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in front of us at this moment in time. You Are Not Your Pain is an excellent book on learning mindfulness for people living with pain and illness.
  • Buddha’s Brain by Rick Hanson is a wonderful book with practical advice on how to retrain your brain to strengthen positive brain states like calm, joy and compassion.

So, How Does Positive Thinking Affect Chronic Illness?

  • Having a negative perspective does not cause illness.
  • Having a positive attitude will not cure you.
  • Saying otherwise to people living with chronic conditions invalidates their experiences and feelings.
  • It is natural to feel grief and anger over the onset of illness and healthy to express these emotions.
  • Working towards greater acceptance and cultivating optimism can improve your quality of life, and help you to live better despite the challenges of having a long-term illness.

References:

Edmonson, J. (2017, Sept 3). A positive outlook not always in your best interest. The Star.

Ehrenreich, B. (2010, January 2). Smile! You’ve Got Cancer. The Guardian.

Goodin, B. and Bulls, H. (2013). Optimism and the experience of pain: benefits of seeing the glass as half full. Curr Pain Headache Rep, 17(5): 329. doi:10.1007/s11916-013-0329-8.

Medical News Today.(2004, Feb 9). A positive attitude does not help cancer outcome.