Image from GoodReads https://www.goodreads.com/book/show/32885166-the-whole-health-life?from_search=true
In The Whole Health Life Shannon Harvey shares her learning from a ten year journey as a 20-something journalist diagnosed with an autoimmune illness living a fast-paced life to a 30-something healthy mama of two.
Of course this appealed to me, it’s a blend of research and personal story. It is an easy to read, compelling, evidence-based case for following the steps in The Whole Health Life.
Being healthy in this crazy, busy, modern world is not easy.
For journalist Shannon Harvey, finding a solution to this problem became personal when she was diagnosed with an autoimmune disease that had no known cause and no known cure. After being told by her doctor that she could end up in a wheelchair, she realised she had to take action. – synopsis from Goodreads
I loved this book! As a person who has been fighting Fibromyalgia for over ten years and has done a lot of research, I had previously found most of the lessons outlined in the book, but also further avenues to explore.
The chapers are the key steps in the Whole Health Life, these are all the main concepts in coping with Fibromyalgia, other chronic illnesses or just living healthily in general.
Stress
This step discusses the effect that modern life has on our body, chronic activation of the fight or flight response, and how meditation and mindfulness can help counteract this. Like the author, I have found meditation to be enormously helpful in my journey, not only for catching up on some deep rest from lack of sleep, but for calming my nervous system. I used to get anxious so much more easily and it would be more difficult to relax. Now I have the tools to calm down – breathing, focusing on the moment, and checking in with my body.
Belief
This is an interesting area of study. Our beliefs, positive or negative can effect our physiology – if we believe a medicine will work, there is evidence that this enhances (or creates) the benefit. I firmly believe that a realistic but hopeful mindset is key for coping with a long term illness. If we were to have our hearts broken with every new change or medicine we tried, we’d become pretty hopeless and this would in turn effect our health. If we have realistic hope that we can change our life, that we have control, then we will get much further in our journey to wellness.
I love her suggestions such as set your mindset positively (for example, I can walk 20 minutes, rather than I can’t walk 30 minutes); pay attention to negative expectations and be wary of them; meditate to lessen the effect of worry about our illness; make a ritual around treatments to allow something called classical conditioning to take place (p93); adhere carefully to treatment plans as this aids the expectation response.
Food
Food is a minefield at the moment. There are many recommended eating plans – but research suggests the only “best” eating plan is one that we will stick to. Personally, I agree with the author’s conclusion that a diet rich in whole, plant-based foods is the way to go (p102).
Movement
We know movement had to be included, it is vital for good health. We also know we don’t need to run a marathon or climb a mountain, especially if we’d hate the attempt. Let’s chose something we can stick to. I choose yoga and, incidentally, it hits all the aspects that research identities as useful for us: “a vinyasa yoga class can get your heart pumping, your muscles stretching and strengthening, and your mind-body connected (that’s neuromotor exercise).” P131
Environment
This chapter delves into nature vs nurture and the idea of epigenetics (that your environment can change your genes). It teaches you some ways to set up your environment for better health. Can you cut the commute? I did and it saved two hours of time, energy and stress per day, Harvey writes of the same experience. Something as simple as putting a nice looking fruit bowl in a prominent place can assist you in your healthy eating goals.
Sleep
Ah sleep, the thing I try to get all night and spend all day trying to set up well! Yes the research shows how important sleep is for our health, yes there’s a heap of sleep hygiene that may help. I have ordered one of the books on her recommended reading list for sleep – Night School: The Life-Changing Science of Sleep by Richard Wiseman.
Emotions, Healthcare and Relationships are the remaining sections.
This is well worth the read if you are facing a chronic illness or just want to invest in your health – don’t get dragged into ill-health by our culture’s fast paced, burn out risking standards. Start meditating, prioritise sleep, go for a walk, have a snuggle with your partner or have an apple at morning tea time today, just start!
Like many areas of living with Fibromyalgia, I have found there to be little information on nursing with Fibromyalgia.
The Research
There are a few articles, like this one on Fibromyalgia Symptoms that mentions research but provides no links, “Numerous studies have been done evaluating how fibromyalgia influences breastfeeding. These studies all indicate that it is very hard to breastfeed with fibromyalgia.”
The Fibromyalgia Health Center on WebMD posted an article in 2004 referencing a new study about nursing with Fibromyalgia. This study was very small, with just nine mothers included:
“All nine women felt that they were not successful in their attempts to breastfeed, and felt frustrated,” Schaefer writes. Difficulties included muscle soreness, pain, and stiffness; fatigue; a perceived shortage of breast milk; and sore nipples.”
The article lists a few tips from the study which includes good nutrition, proper rest and paying attention to where and how you are nursing.
Please do remember that we are all unique, how we experience fibromyalgia and how we experience pregnancy or nursing. My story will not reflect yours. Before I give you my experiences, I’d like to show you some information from a survey I undertook when I was writing my book Pregnancy and Fibromyalgia.
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In response to the question, did you manage to nurse? 40% responded that they did for 12 months or more! 20% managed for both 12 month and 6 month periods (that’s 40% for 6-12 months!). 15% didn’t manage to nurse. 5% exclusively expressed. There were 20 respondents, so the sample size was small, but these are encouraging results.
Survey results: How long respondents with Fibromyalgia nursed
Some advice from a respondent about nursing:
“The two hardest things for me have been lack of sleep, and being forced to sit in the same position for long periods of time while nursing, or while my son slept. I kept five different pillows on the couch, and used them to prop myself and him up at every angle. Really helped.”
My Experiences
Having had three children now, I thought I would share my experience. As with all areas of this illness, my experience may not be the same as another’s with Fibromyalgia, so my difficulties do not translate to all women with Fibromyalgia.
I found nursing extremely painful with my first two children, I had cracked and sore nipples from the second day cluster feeding with both babies. Both times, it took a long time for them to recover. Expressing was less painful, but still resulted in sore breasts.
The differences in situations were extreme.
Baby One
With Nu, we found he was excessively windy and by week two we were going back and forward to doctors at the after hours centre. At last, at week three, we were sent to the hospital and there they found that he had pyloric stenosis – a thickened sphincter that wouldn’t let food out of the stomach to be digested, so it was forced back up and out of his mouth in projectile vomiting. After several days in hospital and a small operation, we came home and found that he doubled the amount he was taking at each feed. My supply couldn’t keep up, despite pumping three hourly the entire time he was in the hospital, my supply decreased in real numbers and relative numbers. I managed to keep him exclusively on breast milk until eight weeks. At this point whenever it was time to express, I would cry, so I knew it was time to finish up. I was just tired and sore and Nu was not a very settled baby and so cried the entire time I tried to express.
I was so relieved when parenting no longer needed to include my breasts. I am proud that I managed to give him such a good start in life, but I also wish I had given up sooner, but the pressure on mothers to breastfeed is enormous, even my expressing rather than feeding directly was seen as failure. My doctor and my Plunket Nurse were both supportive as they understood the Fibromyalgia and how hard I had tried.
Baby Two
With W I managed to persevere a little longer. My right breast got so sore and cracked from the second day cluster feeding that when I first tried to express, I expressed blood in the milk, it was a frightening sight! I persevered with the one side for another week before that became too sore (this guy is a rough feeder and liked to pull away with it clenched between his gums). I expressed four hourly during the day and once in the middle of the night (that was hard to leave baby sleeping after giving him a bottle and stay awake). My supply stayed static no matter what I did to try to increase it, so by week four, I was only just producing enough from both breasts for one feed. Luckily I had a lot of frozen milk from the first weeks of expressing.
This time I knew it didn’t have to be all or nothing (this is an important message for all mamas, you can mix feed!), I had more knowledge and therefore more power. I also ignored any messages of my being deficient or not trying hard enough. I managed to add in a physical feed each evening after he had spent the previous few hours having more regular bottles in his nightly cluster feed, this meant I didn’t have to worry about him not getting enough and he got some comfort from it at the end of a long day. It hurt, but swapping which breast I gave him each night helped me to cope. I worked with my midwife to reduce to a few feeds a day of my milk and add in formula for the shortfall. My plan was to give him whatever breast milk I could, for as long as I could.
As we know, plans do not always work out. Little W developed reflux and vomited my milk and got very sore. Through long weeks of trial and error we found that I could feed him directly (my measly 40 ml or so) followed immediately by a bottle of thickened formula, reducing the vomiting to spills and the gas pains greatly decreased. At seven weeks I was still managing to mix feed, with the miniscule supply I produced.
Due to the very different positions in my health and a lot more knowledge and confidence, I believe it was slightly easier the second time around. However, by 12 weeks my supply had completely dried up. I was really happy that I had been able to provide him with these vital nutrients for that long. I was also happy to not have to deal with expressing, feeding and bottles – it had begun to feel like my whole life revolved around his feeding. And at this time my life turned to revolving around his sleep, or lack of!
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Pumping
One thing that helped me both times was my breast-pump. I used the Unimom Hospital Grade Double Expressing Machine (not currently available in US or UK Amazon) for these two. With my third, I have decided that I will not be able to express more than once or twice a day given that I have two other children four and under so I have the Avent Electric Pump (single, but you can get double) on my Amazon Baby Registry. FYI: Did you know that Amazon has a baby registry? You can sign up here Shop Amazon – Create an Amazon Baby Registry It’s basically a mobile registry (available anywhere!) and you will be eligible for discounts and rewards. If you’re going to purchase some of your items from Amazon, you may as well sign up (I did).
I also only used Avent bottles because I liked the teat shape (it mimics the breast-shape) and found that helped my boys to avoid nipple confusion. We introduced bottles of expressed milk very early, so please don’t worry when people talk about waiting until breastfeeding is “fully established” – because of all the women I have heard of who have done this, they never got their baby to take a bottle. This may be alright for you, but for me, I needed that ability to leave someone else to do a feed.
Baby Three (2019 update)
I have finally got a more successful story for you! After a much more comfortable pregnancy (even with severe pelvis issues that resulted in my being put off work at week 23 and on crutches and is still causing trouble at nine months postpartum) nursing was not such a kick in the pants. I had gotten my health into a much better place prior to pregnancy and reaped the rewards in pregnancy and nursing. This was due to low dose naltrexone and my ability to sleep in more than one hour blocks. You can find my post here about LDN.
My doctor and I agreed I would stay on it because the potential risks were minimal and the benefit of my sleeping and managing my pain were astounding. That was a personal decision, made by reading the research, listening to other women’s experiences and talking with my doctor.
We did have a bumpy start with the nursing. For three months we battled thrush and it was so distressing as in those early months every time I nursed I would have to stomp my feet and grit my teeth with the initial pain. I had to really push for people to take me seriously and realise it was not just me (or the fibromyalgia). So please do explore continued pain when breastfeeding. If I weren’t so committed to my personal goal of three months (at that stage) I would definitely have given up in those early weeks. I also got mastitis. I felt suddenly worse and I thought the fibromyalgia was just catching up with me, thankfully I went to the doctor and realised I had a bad case and needed antibiotics immediately.
We got through all of this and at about four months I realised that there was no trepidation about having to feed him and no pain! We nursed exclusively until he started solids and were still going at 9.5 months (August 2019). I have no end date in mind. We will see how it goes.
My tips for nursing with Fibromyalgia are what most nursing women are told:
Try to rest as much as you can
Eat as well as you can
Drink lots of water
Make yourself as comfortable as possible when you feed
Know that whatever you manage to give your baby is awesome and that you cannot fail. You will be a great mama whether you feed physically, by expressed breast milk or by formula. A fed baby and a happy mama are both minimum requirements. (Your well being counts as much as baby’s and don’t let anyone tell you otherwise!)
Advocate for yourself – check out any pain (do not just chalk it up to the fibromyalgia – sure, it might be, but check it out)
I’d love to hear about your experiences with nursing with Fibromaylgia, if only so that others have something to read when they Google about it.
For more information
It has been updated August 2019!Come and join the conversation, we talk trying to conceive, pregnancy and nursing every day.
I love research and reading about potential treatments for fighting Fibromyalgia. But there are so many options and so many variabilities that it’s hard to have a sense of what may work for me. I have managed to glean a list of what works for me and of things I would like to try. There are also some great blog posts outlining what other chronic illness fighters do. In this post, I wanted to share a few examples.
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I have written extensively about my experiments, my whole of life change and what I hope to try.
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Essentially, I have found that in order to be well (or the most well I can be) with Fibromyalgia is what any good health guidelines advocate:
Donna Gregory Birch at Fed Up With Fatigue wrote about her Six Favourite Things For Fibromyalgia Relief (this blog is where I first read about low dose naltrexone, which I’m currently trying).
There are some serious struggles involved with having a chronic illness, especially one that heavily impacts your energy levels.
I have struggled with body issues for forever (don’t most women?). Before I was struck by the chronic fatigue syndrome in in my last year of university, I exercised a lot. I walked everywhere and I went to the gym. Sometimes I walked to the gym (20 mins each way).
Before I left my full time job I was forcing myself to walk as much as possible and do one Pilates class each week. But my legs, glutes and lower back were ALWAYS tight and sore.
When I changed my lifestyle, I allowed myself to find the balance between enough exercise but not so much that it hurt. I walked 20-30 minutes each day and did a 20-30 minute Pilates or yoga routine three times a week. But I was less rigid on “bad” days.
Due to my body type and my previous levels of exercise I have very muscular legs. So when my pregnancy forced me to slow down (a very slow 20 minute walk by my last day) my legs became less defined.
As I progress further from pregnancy and my baby sleeps a bit better, I am able to pick it up a little. I have been able to do more walking and exploring which I love to do. I love finding a new walkway or beach and I love sharing this with my boy and husband. Numerous family adventures include walking in new places.
With the tremendously low levels of energy and high levels of pain that I have experienced since I had my boy, I have come to look at food more as fuel. I am more relaxed about it. My husband loves that I am not super finicky about food (as I’d have to be to maintain a tiny figure). Though, he does love the idea of my having a flat tummy!
I have a better understanding of food and exercise for fuel and survival, rather than aesthetic reasons. But I still struggle with my body image and that is a work in progress. I am learning to be thankful for what my body can do. That it carries me through each day, even if some of those days are slower than others and all of them are slower than most people’s. Having chronic pain means that I am more aware of my body and all of the work it does to keep me alive. And for this, I am thankful.
One of the things that I struggled with when the baby was small (and rarely sleeping), was to fuel myself right. It seemed that only unhealthy foods were suitable for one-handed eating.
Here are a few ideas to help get food into the cupboard or fridge when you have a moment:
Pressure cooker – I love my pressure cooker! I use it for beans, meat and grains.
I cook up a pot of quinoa (in around eight minutes) and leave it in the fridge for a few days, I eat it in place of rice as it’s a super load of good nutrients.
I also like to keep a container of beans or lentils in the fridge for quick go meals.
http://fastcooking.ca has a great guide for how long to cook each type of food and many recipes you can try.
Tasty tips: include tumeric, cumin, green herbs, a pinch of cayenne pepper, garlic and/or ginger and you’ll be boosting the goodness in your food!
Cook semolina or oat porridge ahead of time, up to three days in advance and keep it in the fridge. Add some nuts, seeds and fruit at serving to pump up the nutrients.
Keep the fruit bowl topped up.
Keep a container of nuts and raisins in the cupboard.
Make or buy yogurt and store in serving size containers.
For a while there (it’s moving into summer here now) I kept a bowl of soup in the fridge too. I cooked up any vegetables we had in the fridge and added chicken stock, tumeric, cumin, salt and cayenne pepper. This way I managed to get silver beet and other vegetables I tend to struggle to add I to the diet.
I hope some of these are useful, I have really been focusing on nutrition and the effect this has on my body at the moment, being well fuelled certainly makes the difference!
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