Posted on Leave a comment

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
Posted on Leave a comment

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!

Posted on Leave a comment

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

Posted on Leave a comment

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.

Posted on Leave a comment

Five Ways I Cope With Fibromyalgia: AKA Lifestyle Choices to Live Well

We all know the recommended steps for being well- eat healthily, exercise moderately and get plenty of sleep. I believe that people with Fibromyalgia need to adhere to the healthy living guidelines, augmented to their ability level, of course. But what happens if no matter what you do, you are exhausted and sore? There’s no escaping it, you have to do the work.

Here’s the five lifestyle choices I make daily to cope with Fibromyalgia and chronic fatigue:

1.       Healthy eating

Food is fuel, right? Everyone should eat healthily with a diet full of fresh fruit and vegetables and rich in whole grains and protein. When you are battling extreme fatigue and travelling muscle aches, what you eat can be of great help.

In my worst flair ups, my food diary used to become a love song to carbohydrates. I subconsciously craved fuel that my body could turn into energy; unfortunately, all those carbohydrates created the opposite effect. My already exhausted system was battling its way through the simple and complex carbohydrates I was throwing at it every few hours – it had no time to create energy. It took a few days of concentrated effort, but once I replaced a few of these servings with other foods, I began to feel the effects.

For me, eating a moderate diet rich in fruit and vegetables is a good start. Some people swear by Paleo, or Keto or gluten free or some such diet – it’s all worth a try.

2.       Exercise

Unless your doctor forbids it due to a medical condition, you should be exercising. A person with Fibromyalgia will work at a lower intensity and for a shorter period, but they should still exercise.

The amount of energy I have fluctuates, depending on many things, but I always go for my walk with my dog. Sometimes it is only around a 15-minute block, other times I will go for a course with a decent hill or will walk for a little longer. I have found 25-30 minutes to be ideal for me. I am always treading the fine line between proper muscle exhaustion and pain. This can be hard to monitor with constantly changing goalposts like fatigue and pain levels, but after two years, I have worked up to my current level.

Pilates is my favourite form of resistance exercise. I have done it faithfully for about ten years. Sometimes I operate at a beginner level and other times I can advance the exercises. When I was starting again after a bout of extreme pain, my physiotherapist created a 20-minute programme for me to follow. With my experience, I was able to advance the exercises as my energy levels allowed.

I have found it very important to keep the strength in my muscles with gentle activation. There is a strong correlation between less exercise and more pain.

lifestyle choices I make daily to live well with fibromyalgia

3.       A compassionate, knowledgeable physical practitioner

My physiotherapist is a valuable component of my healthy life. Someone you trust, who knows about Fibromyalgia and can bring about lasting changes with their treatments is vital to coping with long-term pain and fatigue. Someone who can come alongside you and take the burden of your body, even if only for half an hour is great for physical and emotional health.

My physiotherapist is the only person I can speak candidly to about what I have been coping with for the last 7-14 days (depending on how long I can stretch out the periods between treatment). After trying many of the different types of therapies, I have found acupuncture to be (one of) the least invasive and longest-lasting treatment.

Other posts you might like
Why I’m Treating the Fibromyalgia as Naturally as Possible
My Daily Log, Why I Track Fibromyalgia Symptoms
Free Printables from Melissa vs Fibromyalgia Book

4.       Sleep and rest

Sleep is my hardest battle. A full night’s sleep is the best way to cope with life. I try to go to bed around the same time every night and have a set routine that involves getting ready and reading before I switch off the light. I also try to get up around the same time every day. This helps, but I will not always sleep through the night, I will not always fall asleep straight away and I will often wake up at 4am (or every hour or two) with an incredibly stiff and sore neck. Since I began Low Dose Naltrexone in 2017, I have finally managed to sleep in blocks of more than an hour! I don’t sleep through the night, but I do sleep much better and this has flow on effects.

In order to cope on days when the kids have had me up in the night or the fatigue is just worse, meditation is a go-to. I can’t nap, so meditation is a way to get decent rest when I need it.

5.       A plan for the “hard” days

These are inevitable. Everybody gets sick from time to time. A person with Fibromyalgia will have some harder days. I have found a written list with suggestions for what to do on one of these days to be useful for pulling me out of the downward spiral of panic that accompanies intense pain.

Things like:

  • Specific stretches for my neck (tightness in my neck often causes headaches, nausea, dizziness and extreme fatigue)
  • Things I can do in descending order of ability (a gentle walk, gentle stretches, watch a DVD, read, lie down with an audio book on, lie down and do nothing else)
  • A reminder of the pain relief options I have at my disposal (wheat pack, icepack, heat cream, Ibuprofen, prescribed pain killers) – you would be surprised at how often I forget these things exist in the grips of serious pain.

All of these ways for coping should be underpinned by hope. Hope that your “hard” days will occur less often. And hope that you will be able to compile a life that is heading towards wellness, rather than just away from sickness. This is what I have experienced over the past two years as I have found more to help, particularly the low dose naltrexone, and it is what I hope for you too.

Posted on Leave a comment

24 Weeks

Time is disappearing at an alarming rate. I am just three weeks out from the third trimester and from what I have read, I don’t want to get there too quickly!

image

My little boy has become more and more active as the weeks go by. My little tenant loves to let me know he is there, especially when I have just lay down or started attempting to meditate after yoga.

As much as it has made me more in awe of this process I am going through, and reinforced why I am doing it, his little movements have also helped him start his bond with his father. My love likes to sit or lie with a hand or his head on my belly when we are relaxing together in the evening. It is the most amazing thing to see his reaction when baby prods at him.

Pregnancy is simultaneously tiring, painful, scary, awe-inspiring and ultimately bringing me around to a fuller sense of the world and my part in it. 

When I see tiny baby clothes I get such a sense of excitement for when I can snuggle with my little boy! When I see other babies, I get a tingling sense of joy for the fact that I will soon have one of these!

I have had some of those excruciating calf cramps that have woken me up in the early hours of the morning, the first one panicked me and I was practically hyperventilating as I tried to remember how to relieve it!

I have been super hungry. Super tired. Struggling to sleep comfortably for more than one or two hours at a time. So I am trying to actively remind myself to take it easy and rest more frequently. This is hard to do when I am getting married in three weeks, but I am trying!

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

Posted on Leave a comment

19 Weeks…It’s a Boy!

I fell down.

One Sunday morning, a few weeks ago, I woke up to pain in my left side and lower back. As the day wore on it became intense. In tears, on the phone to my midwife, I was told it was probably a pulled muscle. I took a Codeine and lay on the couch, vaguely watching TV.

After a painful physio visit the next afternoon, it was confirmed, I had pulled muscles in my lower back and left hip, which in turn had tripped my very tight glute muscles.

Since then, I have recovered slowly, but in dealing with the extra pain and resulting fatigue, I have fallen down. I haven’t been coping. Between the pregnancy and those injuries, sleeping is very difficult. I can only walk the dog for around 15-25 minutes at a time and have had to give up my mat Pilates routine.

In addition to this, I have been planning my wedding, for February 2014.

So I am planning a wedding, working, gestating, attempting to be healthy and am desperately, soul-achingly exhausted – and no one seems to get it.

Meanwhile, my baby has been growing furiously! I felt my little flutter ball the other day for the first time and then saw him yesterday in the anatomy scan.

Yes, we have been blessed with a baby boy! Feeling and seeing him makes it feel worth it! It is so amazing. I can’t wait to meet him.

I just wish I could focus all of my limited energy on preparing for him. He is my priority.

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

Posted on Leave a comment

Week Ten, Blessed

We now have a fetus, rather than an embryo! It is very exciting to be past the critical development phase. Now that we are on the downward slide to 12 weeks and our next scan, I am getting excited to tell people and to start buying the many things we need.

I really hope the fatigue will drop off enough to allow me to do some gentle Pilates again. My neck is really struggling without it, to the point of keeping me awake and waking me frequently in pain. I am off to the physio today, so I am pleased about that.

It is rather shocking that I have a baby growing inside me. It is something I have always dreamed of and known I’d do, but to actually be pregnant is something else. Despite being earth-shatteringly exhausted, sore and the rest of it, it somehow feels, deep in my core, worth it.

Of course I am nervous about a great many things. Number one is how I am going to manage physically with fibro/chronic fatigue, baby and a job. Though, I do know the number one priority will be baby and then my health, the rest has to fall into line. For now, I have to focus on continuing to grow her/him and keep her/him safe.

 

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

Posted on Leave a comment

What Fibromyalgia Taught Me: My Journey so Far

what living with chronic pain and fatigue taught me

This is an old post but all of it is still true today. I stand by all of the things I had learnt back then. This is the story of how I went from miserable to thriving, before I fully knew what thriving was.

My story of happiness and wellness didn’t begin until a few years ago. Prior to that, I coped, but only barely.

what living with chronic pain and fatigue taught me

The pain began when I was a young teenager and grew over a period of around 10 years. By 17, when I was at university, my shoulders would ache and burn so much at the end of the day that I usually ended them in tears.

No one knew why I had this pain. Some of the doctors intimated that they thought I was making it up.

I was struggling through university, in my final year, when I was hit with an extremely bad bug. Profound fatigue and flu-like symptoms descended upon me like a ton of bricks. There are 9am tutorials from which I can only recall my near inability to keep my eyes open. After a few weeks, I saw a doctor and they gave me antibiotics. It took a further few weeks for the symptoms to recede but the fatigue had made a permanent home.

Doubly burdened, I struggled through the remainder of university, graduated and entered the workforce.

I have since realised that my inability to do, and care about a job for long is related to my illness. I need a lot of passion to drive me through the fog, pain and fatigue to complete my work.

After four years, I was barely coping, feeling just a step away from fainting at every moment. I was sleeping terribly and waking unrefreshed. With nausea and levels of pain at 6/10 by 10am. By 3pm pain levels rose to 8/10, the caffeine needed to keep me from falling flat on the desk caused further nausea; the jaw and temples felt as though someone has a wrench and was turning them constantly tighter. Minutes crept by until 5pm, cue an hour-long bus ride on which to keep from vomiting, falling asleep or crying (or all of the above). The evening was a blur of lethargy, waiting until bedtime.

That was my life. Yet, I managed to look normal (albeit a little paler), complete my work and occasionally force myself to socialise.

After many years of struggling and of tests and regular blood tests revealing nothing, the doctor was able to check the 18 tender points and confirm that I had fibromyalgia. That was all that they did. There was no medicine, no advice, and no referrals. There weren’t many books or websites yet either.

Coop is gorgeousThe turning point came when my parents invited me to move to Auckland with them. I was able to put the changes into place that I’d been dreaming of, starting with slightly reduced work hours. Working 3/4 time, in a warm climate helped immensely. So did meeting one of the loves of my life – a ruby Cavalier King Charles Spaniel named Coop!

In the first year in Auckland, I didn’t do much more than recover. I worked until 2.30 each day, utilising my skills to support an organisation that worked with vulnerable families. I rested in the afternoons and gradually increased my evening walks with Coop.

The second year was more eventful. I began a writing course (I’d always wanted to do one) and I found an excellent, caring, knowledgeable physiotherapist who introduced me to acupuncture – the only treatment that isn’t akin to torture, and the effects last. Perhaps most importantly, she was the first person ever to understand the extent of what I had been dealing with.

This year, the most exciting things have happened. I started a blog and my own business – these have enabled me to do what I am passionate about. Also, I met a man who not only loves me as I am (for all my quirks) but also wants to understand my fibromyalgia, who wants to help me with this burden. The enormity of this cannot be appropriately articulated.

Melissa Gershwyn Aug 13

Some of the things I’ve found that help are:

  • Working 3/4 time
  • Eating healthily
  • Yoga, Pilates and stretching
  • Walking my dog daily (for the exercise, the time out and the pleasure of being outside)
  • Resting
  • Seeing my physiotherapist every couple of weeks
  • and following my passions

With the ability to look back, I’ve become very protective of my new life. I hardly ever lose words anymore, my memory is improving and so is my spacial awareness. The nausea is far less frequent and headaches only tend to bother me every couple of weeks – and they don’t drive me to bed so often. My neck still causes me trouble, but the extreme tightness, dizziness, nausea and faintness is much rarer.

Most importantly, I am living life, not just coping.

I have a larger capacity for empathy. I have been forced to work only enough to live, in a job I am passionate about with little stress, and I love it. Seeing friends bust their guts working 40-50 hours per week in jobs they don’t love makes me thankful that I have learnt that I don’t need the money or the prestige. I’ve gladly skipped the year living in London, buying fancy cars and clothes – because my dreams lie elsewhere.

I hope I make a difference in the lives of those that intersect with mine. I hope I always know what’s important.

If you liked this, you may also like these posts:

Fibromyalgia: Definition, Symptoms, Diagnosis and Treatment

9 Inexpensive Items I Use to Fight Fibromyalgia

My Top Three Treatments to Fight Fibromyalgia

Posted on Leave a comment

It’s a Boy! 19 Weeks

This is an old post when I wrote diary-like entries during my first pregnancy when I found myself alone with not even doctors who understood what might happen to me. One doctor suggested I ought to be feeling better (which I most certainly was not) but what an odd, uninformed thing to say! For the most recent pregnancy diaries from pregnancy number two and three see my Pregnancy and Fibromyalgia resources page

I fell down (not literally).

One Sunday morning, a few weeks ago, I woke up to pain in my left side and lower back. As the day wore on it became intense. In tears, on the phone to my midwife, I was told it was probably a pulled muscle. I took a Codeine and lay on the couch, vaguely watching TV.

After a painful physio visit the next afternoon, it was confirmed, I had pulled muscles in my lower back and left hip, which in turn had tripped my very tight glute muscles.

Since then, I have recovered slowly, but in dealing with the extra pain and resulting fatigue, I have fallen down. I haven’t been coping. Between the pregnancy and those injuries, sleeping is very difficult. I can only walk the dog for around 15-25 minutes at a time and have had to give up my mat Pilates routine.

In addition to this, I have been planning my wedding, for February 2014. So I am planning a wedding, working, gestating, attempting to be healthy and am desperately, soul-achingly exhausted – and no one seems to get it.

Meanwhile, my baby has been growing furiously! I felt my little flutter ball the other day for the first time and then saw him yesterday in the anatomy scan.

Yes, we have been blessed with a baby boy! Feeling and seeing him makes it feel worth it! It is so amazing. I can’t wait to meet him.


This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.