Books, Fibro

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’ve just managed to finish reading The Busy Woman’s Guide to High Energy Happiness by Louise Thompson.
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Rating: *****
Recommended for: Anyone who has a fatigue-based illness or who is interested in learning the basics to living well.

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.

Fancy, Fibro

Delivered and Some Health Issues

We were blessed with our beautiful baby boy on 19 April, born after 37 weeks and 3 days.
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I awoke with a shock at midnight on Good Friday with severe back pain and contractions. To cut a 19 hour story short, the extreme back pain lasted the entire labour, the epidural failed, he was the wrong way round and had his head in an awkward position. He was born weighing a healthy 7 pd 7oz.

Unfortunately he had a problem with wind from the beginning, which degenerated into severe vomiting by his 18th day. On his third week anniversary he was admitted into hospital for tests that eventually revealed he had pyloric stenosis. An operation to trim the muscle in his stomach that had gotten too thick enabled food to pass from the stomach to the intestines again.

At last, just before his fourth week began, we took him home and effectively met him and learnt all about him again. He was like a new baby.

I am so in love with this little being!

My pain and fatigue levels were doing rather well up until our second hospital stay. With the stress of my precious baby being sick and sleepless nights ensuring he didn’t choke on his vomit, a flare up has ensued. But, thank God for my husband! He did most of the night shifts at the hospital so I could sleep and express breast milk for baby. I never could have survived if not for him. He has been AMAZING!

The combination of my husband’s help, choosing to express and then feed via the bottle and my mother-in-law cooking our meals enabled me to survive and enjoy my baby. I am so thankful, so blessed, so happy.

Fibro

Struggle to be Well While Pregnant with Fibromyalgia

440778-Cartoon-Tired-Woman-Waking-UpThere is more than a little vulnerability involved when you have a reliance upon a certain treatment in order to maintain wellness.

I have experienced this many times over in the near decade in which I have been trying to live well with fibromyalgia and chronic fatigue syndrome. I have had to gather information, learn about my condition, and learn to advocate for myself.

I have tried many of the physical therapies available. My heart has been broken a few times by enthusiastic practitioners who believe they can cure me.

In the last two years, I have found an amazing physiotherapist who combines acupuncture with deep tissue work, specifically for patients with fibromyalgia. She armed me with things I could do to help myself, supported me to adapt a Pilates routine to help strengthen my back and neck and we managed to reduce my visits to two-weekly (from weekly). At the same time, I had been making changes to my lifestyle and taking my battle for wellness in hand.

Little did I know that last year, there was something around the corner to throw me off balance.

I became pregnant.

Pregnancy has had huge physical implications for me. In the first trimester I was beset by worse fatigue than several years of chronic fatigue syndrome could prepare me for. In the second trimester I pulled a muscle in my hip and lower back. As the third trimester has dragged on, my physical limits are being severely tested.

Luckily, I have many coping mechanisms in place. But nothing could prepare me for the emotional impact of several weeks of deteriorating sleep, increasing fatigue and increasing pain. Unfortunately, this has been coupled with needing a new physiotherapist, due to mine also becoming pregnant.

I began my search by Googling those that say they do acupuncture and calling them to confirm. I turned up to an appointment with a physiotherapist, whose receptionist told me she does acupuncture, only to find she does dry needling instead. In desperate need of treatment, I continued with the appointment. But, in comparison to the whole-body, gentle effect of acupuncture, dry needling a couple of muscles did little for me.

The day before an appointment with a different physiotherapist, with whose receptionist I explained my situation and stressed that I needed acupuncture, I received a call from that physio telling me that she didn’t actually do acupuncture, it was dry needling. I cancelled the appointment.

Trying a different tact, I Googled physical treatments specifically aimed at pregnant women. And the prices alone were enough to deter me. Being on maternity leave with my family on reduced income, I cannot justify these prices – especially as I need treatments at least once a fortnight.

One of the organisations I spoke to said, “we do do acupuncture, but we call it by a different name, dry needling.” This made me angry. If I didn’t know exactly what I need, if I hadn’t already been through the dry needling phase, I might have been sucked in.

And that is one important finding of having fibromyalgia and chronic fatigue syndrome – I have to continually be my own advocate. Which is somewhat tiring when you are so sore and so tired that you want to give up!

Fibro

The Label Problem

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 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 exponentially increased – that day becomes a day that I am not living but merely coping.

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.

Fibro

Five Ways I Cope with Fibromyalgia: Aka How to Live Well

We all know the recommended steps for being well- eat healthily, exercise moderately and get plenty of sleep. 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 ways I use to cope with my Fibromyalgia and chronic fatigue:

1.       Healthy eating

From; http://systemaxonline.com/clipart/original2.htm
From; http://systemaxonline.com/clipart/original2.htm

Food is fuel, right? Everyone should eat healthily with a diet full of fresh fruit and vegetables and rich in whole grains and protein. If you’re looking for more pointers try this Health Eating Plan for the Rest of your Life. When you are battling extreme fatigue and travelling muscle aches, what you eat can be of great help.

In my worst flair up last year, my food diary became 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.

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.

As my pregnancy has advanced, I have had to drop most of my Pilates routine and have begun to favour yoga. I have found it more important than ever to keep the strength in my muscles with gentle activation. There is a strong correlation between less exercise and more pain.

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.

4.       Sleep and rest

From: http://www.itworksforbobbi.com/2011/02/cathing-some-zzzs-photoshop-brush.html
From: http://www.itworksforbobbi.com/2011/02/cathing-some-zzzs-photoshop-brush.html

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.

To counteract these things I adjust my daily schedule as necessary and, when I am being good, I will lie down at some stage during the day to read. Yoga stretches and meditation are things I do regularly and these help with sore muscles and fatigue.

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.

P1000247All 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.

Fancy, Fibro

What Fibromyalgia Taught Me: My Journey so Far

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A funny set of learning from a journey filled with pain and fatigue, but these are things I’ve gradually learnt living with a chronic illness.

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

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 the love 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 no 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.