Awesome Website Resource

t’s hard enough to live with pain and fatigue every day of your life. Without people claiming you can be cured of you do the right thing.

The reality is that the spectrum of these illnesses are so different that some things work for others and some don’t. Some swear by chiropractic care, I choose acupuncture provided by a physiotherapist. Some people can work full time and cope, I found that reducing to 30 hours a week dramatically improved my life.

I’ve read about an approach that recommends the eradication of salicylates, which is hard because they seem to be in just about everything.

Another recommends a specific drug. Another detoxification.

But the most recommended approach, the one that I take, is to try to live as healthily as possible. The way we are all supposed to live.

I recently came across a fantastic website resource for a guide to a way of living as healthily as possible – 

This person has fibromyalgia and works with clients who have fibromyalgia, she’s compiled a website with a whole range of useful tools to consider trying.

I knew she was the real deal when I read:
I do not endorse a cure. However, it has brought my severe fibro pain from a 7, 8 or 9 level to a 2, 3, or 4  level.”

She shares a great “protocol” that she follows.

Essentially it is healthy eating, gentle exercise, supplementation of vitamins or minerals you’re short of, meditation and good sleep.

It is worth a squizz as I found it encouraging. She affirms many of my approaches. Including things I’m trying to be firm on after realising they’re so useful -honouring your body clock and resting enough.

While it’s not good to dwell on your symptoms, it is good to research and try positive ways to be well. This is one resource I will go back to again and again.

Simple Things That Help Me Exercise

When your muscles are clenched, with some muscles screaming louder than others and you’re so tired that bedtime is all you can think about, exercise isn’t your top priority. But, ironically, light exercise can help with fatigue. It also helps to strengthen the muscles that so desperately ache.
Here are the simple things that help me exercise:

  • My dog – he needs a walk most days, knowing that’s his favourite time of day encourages me to go.
  • Knowledge of my body – if I don’t keep it up I slip backward in my progress. In a surprisingly short amount of time, how far I can walk without too much pain in my legs afterward, can decrease.
  • Willpower – anything I achieve with fibro/CFS takes a lot of willpower. It’d be easier to let myself lie on the couch more often than not, but if I (gently) push myself, while respecting my limits, it’s worth it. 
  • Enjoyment – I enjoy the type of exercise I do, mostly walking and Pilates or yoga, so I want to do it.
  • My baby – my little buddy likes walking as much as I do. He enjoys watching the new sights and then being lulled to sleep by the motion. Sometimes it is the longest break I get from having to hold him – which helps my back!

I have to remind myself regularly, even if the baby is fussy when we get home, to stretch. Stretching is very important as I think that my muscles are super prone to clenching and getting tight from use. 

Women, Jobs and Babies

Even with a fantastic husband, the burden of care of our baby is on me.

I never thought too much about feminism until I had a baby. I was, and remain grateful to the women pioneers who enabled me to vote, work and be independent.

Simone de Beauvoir believed that the two keys for safeguarding women’s freedom are paid work and contraception. (Deborah G. Felder’s analysis in A Bookshelf of Our Own p.137)

But now that I’m a mama I’m feeling the burden of being “allowed” to work. It’s expected. It’s necessary for our economic survival.

There hasn’t yet been a shift in the balance of responsibility for children.

I will still be the main caregiver.

I must somehow get up to him in the middle of the night, get up early, get him ready, work, get him through the evening grumps until his bedtime and somehow fit in some housework! (Never mind any hobbies – how I miss reading for longer than 10 minute stints!)

All while having chronic pain and fatigue – that is aggravated by my work.
I’m somewhat lucky, in that I am currently contracting and can earn (just) enough to enable me to work 20-25 hours. But full time would be ideal in helping to pay down a mortgage that’s had three interest rate rises this year.

Unfortunately I can’t physically cope with full time work. This is something my husband struggles with in living with me and the fibro/chronic fatigue.

The current circumstances are hard enough for me physically – my husband working 10 hour shifts, coming home exhausted, and me with our baby nearly 24/7.

In addition to this, there is an expectation that women breastfeed until baby is six or even 12 months.

Where are we to get the energy from? How are we to exercise? See friends? Pursue a hobby?

I have no answers. But this superwoman expectation is ridiculous.

Happier at Home – A Book Review

In line with my current fascination with being well, which includes being happy, I’ve been reading a lot of books in this area.

Affiliate notice: Some of my links may be affiliate links, if you make a purchase using these links I may make a small commission at no extra cost to you.

Gretchen Rubin’s Happier at Home: Kiss More, Jump More, Abandon a Project, Read Samuel Johnson, and My Other Experiments in the Practice of Everyday Life has been an excellent addition to my reading list.

Happier at Home by Gretchen Rubin a book review by Melissa vs Fibromyalgia

She has studied happiness extensively and has a blog and another book dedicated to it. Her bibliography reads like my new to-read list.

Synopsis from GoodReads:

Starting in September (the new January), Rubin dedicated a school year—September through May—to making her home a place of greater simplicity, comfort, and love.

In The Happiness Project, she worked out general theories of happiness. Here she goes deeper on factors that matter for home, such as possessions, marriage, time, and parenthood. How can she control the cubicle in her pocket? How might she spotlight her family’s treasured possessions? And it really was time to replace that dud toaster.

Each month, Rubin tackles a different theme as she experiments with concrete, manageable resolutions—and this time, she coaxes her family to try some resolutions, as well. 

More posts you might like:

Free Printables from Melissa vs Fibromyalgia Book
Yoga for Chronic Pain by Kayla Kurin Book Review
High Energy Happiness – A Book Review

Rubin combines personal anecdotes and thorough research as she outlines her monthly experiments. Being somewhat nerdy, nothing excites me more (in a non-fiction book) than a sentence that begins – “research suggests…”

“Research suggests that mindful people tend to be happier, are more likely to feel self-confident and grateful and less likely to feel anxious or depressed, and have heightened self-knowledge.” P41

She’s not selling a universal prescription for happiness. She’s offering her experience and research so that we can find our own keys to happiness. Rubin writes in a genuine, easily accessible manner. I find her writing a joy to read. All non-fiction writers ought to be able to weave a story in the same way a fiction author does -and Rubin does this beautifully.

You can find for yourself Gretchen Rubin’s Happier at Home: Kiss More, Jump More, Abandon a Project, Read Samuel Johnson, and My Other Experiments in the Practice of Everyday Life. If you’re curious about her first book The Happiness Project: Or Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle and Generally Have More Fun you can get that here. I highly recommend them both, mouthful titles that they are.

Nerdy note:

If you read a lot, like me (I read around 100 books per year), then you might like Amazon Kindle Unlimited! Just sign up here. Amazon Kindle Unlimited gives you unlimited reading (say what?) and unlimited listening to their audio books. If brain fog is an issue and you need to re read over again, it’s all there. Happy reading!


For more information about being well with Fibromyalgia:

Sign up to my free eCourse You vs Fibromyalgia

Winter

Our home is feeling the grip of winter. The grey, the wind and the rain pull me down. The cold seeps into my centre and even my bones are cold and tired.
pivotcon.com
pivotcon.com

I’m finding that the sleep deprivation that comes with the mama territory, plus the fullness of the job of keeping my little being, and the cold of winter are conspiring to bring me down.

The fatigue and lethargy I’m experiencing is even chipping away at my goals and desires.

In my years battling fibro/chronic fatigue, I have (proudly) managed to accomplish much. The secret is passion, huge amounts of passion.

Now I am consumed with my boy. He is a challenge, he is tiring, he is the most exquisite creature I have ever laid eyes upon – but he is all-consuming.

Added to this, my husband is working 10 hour shifts on a rotating cycle of nights, days and weekends (in a fairly physical job). So he is exhausted.

So my most immediate goal is surviving winter. Keep warm. Retain energy. Love my boys. Spring will soon be here.

Experiments

I have previously mentioned my renewed enthusiasm for achieving a higher state of wellness, since I had my baby. I have been thinking, reading, talking and generally mulling over what I’ll do.

I met a friend yesterday who had chronic fatigue for about a year after having glandular fever. She posited an interesting idea. She found that taking an immune system support supplement (with olive leaf, echinacea and vitamin c) helped dramatically reduce her fatigue. When she stopped taking it for a time, she found she got more bugs and higher levels of fatigue.

Her theory is that, while she takes the immune supplements her energy levels are supported. She’s not expending energy to keep her immune system firing.

This makes sense to me. I had just purchased high dose olive leaf and magnesium tablets. I planned to “hit” for one month and see how I felt.

The magnesium is supposed to help my muscle pain and the strong reaction my muscles have to my trying to rebuild my tolerance for exercise. During pregnancy I had fallen to only 20 minutes of walking and no pilates or yoga by the last trimester. The olive leaf was to help me kick the cold that’s been hovering, taking hold and backing off in turns for the last few weeks.

When I have completed this month, I’m going to try the immune support idea. This will be my last trial before I go ahead and get testing for potential vitamin/supplement deficiencies and treat these specifically.

It’s quite exciting to be actively trying to combat my pain and fatigue rather than just trying to get on with my moderated lifestyle!

from www.canstockphoto.com
from www.canstockphoto.com

Jobs

Being a mother is a job. A challenging, exhausting, 24/7 job that pays only in smiles.

My baby is 9.5 weeks old and I have been asked many times already if I am back at work yet! It’s also been assumed many times that, because I work from home, I don’t need childcare.
I’d like to set two things straight. First, work at home is still work. Second, the baby needs so much care there is no way I could get any work done.

My baby sleeps very little during the day. If he does sleep it is in my arms or in the pushchair – continually being pushed. In the night I am still being woken every three hours for a minimum of 45 minutes at a time, if I’m lucky. If not, like last night, we barely slept from 1am.

I’d like to encourage mums to stand up for themselves. As the amount of pressure I’ve already begun facing is huge. And I already have chronic pain and fatigue to deal with.

It will get worse. No wonder there is a vast (and growing) number of women dealing with chronic fatigue and other lifestyle related illnesses.

I will be trying to fight for balance. But gosh it is hard! In a world simultaneously dealing with increasing lifestyle related illness and increasing expectations – how have we not learnt? And how do we expect mums with tiny babies to be doing double shift? Even if the child is at daycare during work hours, the woman is still working two jobs!

So, mums, please fight for yourselves. Dads, please care for the mother of your children and help them to balance the responsibilities wisely. Families, support your mums and help them fight for balance. Let’s fight for new norms!

High Energy Happiness – A Book Review

There hasn’t been much time or brain power to read recently. So I’ve been choosing what I read (of course I’m still reading something!) wisely. I also love to read books by fellow kiwis!

High Energy Happiness Book Review

Affiliate notice: Please note that some of my links are affiliate links and if you make a purchase using this link I will make a small commission at no extra cost to you. It all helps me keep making these resources. 

 

I’ve just managed to finish reading The Busy Woman’s Guide to High Energy Happiness by Louise Thompson.

Rating: Five stars
Recommended for: Anyone who has a fatigue-based illness or who is interested in learning the basics to living well.

Blurb:

In this practical self-help book, life coach Louise Thompson shares her secrets for achieving wellness, balance and fulfilment in this fast-paced world. A former corporate executive, Louise was once bedridden with extreme fatigue – but now she has energy to burn! She has written this book so that you, too, can be buzzing with energy. With Louise’s practical tips, exercises, worksheets and with real-life stories from clients, you’ll be inspired to take control of your life and lead a more energetic and rewarding existence.
You CAN have the life you want, and The Busy Woman’s Guide to High Energy Happiness will show you how.

This book has really resonated with me because the birth of my son has renewed my passion for getting well. I have so much I want to do with him, with my husband, for my work and in my life.

It is written conversationally and is easily accessible, but it is still backed by research and experience.

There’s a multitude of suggestions that I intend to follow. Including fighting for my right to rest, my right to follow guidelines that enable me to live well (including being in bed by 9.30pm, when I’m usually over the day) and my commitment to healthy living.

Other posts you might like

My Favourite Five Books About Fighting Fibromyalgia
Yoga for Chronic Pain by Kayla Kurin Book Review
Living the Best Life with Fibromyalgia: A Book Review

If you’d like to purchase your own copy of this fabulous book you can head on over to Amazon here.

Nerdy note:

If you read a lot, like me (I read around 100 books per year), then you might like Amazon Kindle Unlimited! Just sign up here. Amazon Kindle Unlimited gives you unlimited reading (say what?) and unlimited listening to their audio books. If brain fog is an issue and you need to re read over again, it’s all there. Happy reading!


For more information

Sign up to my free You vs Fibromyalgia microcourse

The Label Problem: Balance and Self-Perception with Chronic Pain and Fatigue

This is an older post but still so relevant. As I have become even better and am able to let my guard down in some respects, I still have to tow the line and balance the cost vs benefit analysis. Recently, we went away for the weekend and the baby slept poorly (as in worse than his usual multiple wakes) and I was in a massive flare. It was interesting to think through whether going away was worth the feeling I ended up with (you know, profound fatigue, nausea, pain etc.).

It’s the age-old question of functionality vs symptoms. Are we willing to suffer the symptoms in order to do the thing?

balance and self-perception with chronic pain and fatigue

I have just read the blog post, Seeing Yourself as Healthy, by Danea Horn of Chronic Resilience. In it, she talks about self-balanceperception – about choosing to see herself as healthy and remembering all the things that bring us joy. And it got me thinking.

For years, I have waited for someone to truly understand what it is I deal with on a daily basis. I have also spent more years than not ignoring it and carrying on (because I had no label and no idea it was reasonable – or preferable – to go a little easier on myself).

For the last three years, I have acknowledged my illness and my limitations and worked to both learn about them and conquer them.

But there is a tricky balance here. You don’t want to dwell on your pain and fatigue (or whatever symptoms you deal with), you don’t want to stop doing things you want to do and you don’t want to be seen as the “sick” person. You do, however, want to know your boundaries.

I acknowledge and respect my boundaries as best as I can, because I have found that I can often overexert myself – and I then pay for it. As my only advocate, I have to do it. Because it can be hard for other people to grasp what it is to struggle through a day or, worse, to be stuck in bed in extreme pain, fatigue and panic.

Everything I do, I do to stay away from being unwell. I guess, because I look healthy and because I achieve so much, it is hard for someone (even someone who witnesses my everyday life) to grasp the fact that I could be one bad call away from a flare up. So when I compromise and stay out late, I am compromising my energy and my experience of wellness. Even if I am not in bed the next day, my pain could be worse, my fatigue will probably be increased – that day becomes a day that I am not living but merely coping.

So when I compromise and stay out late, I am compromising my energy and my experience of wellness.

On the flip side of that however, I do tend to protect myself a little too much. I appreciate it when my husband can remind me to do something I think may be a little too out on the cost/benefit scale – because, I can get it wrong. I can overestimate the cost and underestimate the benefit. But there needs to be recognition that I can’t stockpile energy and it takes more than one night to make up depleted energy levels.

So it comes back to a tricky balance. You need to acknowledge your illness/boundaries but you also need to try to learn where you can push back. This can be difficult with an unpredictable illness like Fibromyalgia and Chronic Fatigue, but when your pushing back includes achieving something you’re passionate about, it is so worth it. Then, maybe you’re not the “sick” person, but the “wise” person.