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The Whole of Life Change Anniversary

Five years ago I left a stressful, full-time, computer based role that I spent an hour each way on the bus commuting to. I moved back in with my family and we relocated to a warmer city.

Once here, I took up a position that was challenging and fulfilling, but sliced a third off my work day.

I had been really struggling. The pain had been building to the point that I awoke in pain, spent the day in pain and tried to sleep in pain. It dominated my life. I was so sore that it made me want to vomit.

The fatigue was another story. After a debilitating bug at university I became progressively more exhausted. By that time, four years later, I was dragging. I needed a coffee first thing in the morning, an espresso on the way to work and an energy drink in the early afternoon just to keep my eyes open.

I could do little in the weekends. On Sundays I was barely able to leave my bed.

It was only in my dreams that I thought life could get any better. I was hoping that I’d get to a point in my career where I could reduce my work hours and still afford to live. I dreamed of warmer weather, of no busses and a little four legged love to potter around home with me.

Then the opportunity came and my whole life changed.

I’ve been meditating upon the components of my whole of life change that actually made a difference.IMG_20150927_145928

Change One – Reduce Work Hours

I reduced my time sitting at the computer by a third. Also, by finishing at 3pm I created two hours for other things without cutting into the evening (when I’m too exhausted to function).

Change Two – Cut Commute

I drove to work, half an hour each way, no sitting on a bus trying not to vomit, fall asleep or both.

Change Three – Love

I surrounded myself with people who loved me and who I enjoyed being with.
And then I met the love of my life and the human I most cherish (my husband and son). This has perhaps been the most instrumental thing to increasing my functionality, my hope and my reason for fighting the Fibromyalgia.

Change Four – Reduction in Activity/Pacing

The amount of walking and sitting and activity required of my whole life back then caused a lot of tight, sore muscles and worsened the fatigue. I cut everything right back. This made a huge difference in the wrench tight muscles in my lower back, glutes and legs. The fatigue has reduced dramatically.

Change Five – Passion

With the reduction in work hours and a year of rest and rejuvenation, I felt able to commit to a writing course that I had always wanted to do. I created energy to follow a passion. The reduction in fatigue enabled me to take back my love of reading – I began to read voraciously.

Change Six – Exercise

I met my four legged love (Coop the dog) and embarked upon a gentle exercise plan. I worked my way up from a meandering 15 minute block to an average 30 minute walk per day plus 20 minutes of Pilates three times per week. After the baby this changed, but exercise is super important.

Change Seven – Acupuncture

Quite by accident, I stumbled upon a fantastic physiotherapist who was experienced with Fibromyalgia. I found that acupuncture needles in key muscles, including neck trigger points, make a big difference for me.

Change Eight – Knowledge

With a reduction in pain and fatigue I was able to move from just surviving to living. I was able to begin researching. This one took the entirety of the last five years. With the most change happening in the last two years.

It’s still hard, I’m still in pain and I’m still exhausted. But I have enacted a heap of changes and won’t stop trying new things.

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I’m living my happily ever after, Fibromyalgia and all.

 


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Turning 30 and a Trip

To celebrate my thirtieth birthday, my husband, son and I went away to Hamilton (New Zealand) for a few days. It was something I have been looking forward to for months.

Hamilton is an inland city surrounded by many farming areas with warm days and cold nights. I was born there and my family lived there for about two and a half years. It feels a bit like an anchor point for me. My Maori mihi grounds me in my land (Hamilton), my mountain (Taupiri) and my river (the mighty Waikato river).

Me at the Hamilton Gardens
Me at the Hamilton Gardens

On the way down we visited my Dad’s oldest brother and family. Once we arrived we explored the stunning Hamilton Gardens. My husband loves taking photos, so we posed for a fair few.

On our second day we were at the Hamilton Zoo bright and early, my son and I adore animals so we had a blast. With the animals fresh from a night away from the humans, we were lucky to see most of them wandering about. Nu especially loves birds.

Just Nu, me and some birdsTwo lovely ladies that I worked with a few years ago live in Hamilton now, so we visited them after Nu’s nap. I felt so special, they had prepared afternoon tea, dinner, dessert and a cake!

On the last morning, I did something very special, I made myself ride a horse. I have been scared of these giant, mostly gentle, creatures since an incident at a petting zoo in preschool! I met the most fantastic horse and his team at the Pirongia Clydesdales and we took a few turns in the garden. Me and my new friend

While we were away, we kept to usual (early) bedtimes due to Nu and I performed a body scan meditation each day. On the way home I was not feeling particularly well, so I performed a body scan meditation and sat quietly with my eyes closed for most of the trip.

The fatigue flared up and I had to leave work early on the first day back. Each day since, I have progressively become a bit less fatigued. It is different for the fatigue to be the most dominant symptom, though my neck joined in on the third day. I have mindfully taken it gently.

I am feeling spectacularly blessed, it was an ideal way to sail into my thirties. I look forward to many more experiments, more fun, more challenges and more love. x

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The Big Three O

I’m turning 30 this week.

I have no trepidation about it, because I feel like I’ve achieved a lot. I’ve come a long way. A lot of it was in the last two years.

I have accomplished some of my key life goals: I have a degree (and I’m pretty proud of that), I have amassed some great work experience, I have a home, a (hunky) husband, a delicious baby, a four-legged love and I have developed and followed my passions.

I’m still working on my health and wellbeing. But even that has come so far in the last three years alone.

I’ve been slowly embracing some big lessons this year, they are:

1. Being me is mandatory. We are not meant to fill an identical mould, differing experiences, skills and attitudes make a well rounded team. It’s perfectly OK that I am a voracious reader, prefer to meet people in smaller groups, need time alone, prefer walking and yoga to sports, prioritise my energy levels, protect myself from extra pain, love to know why and am obsessed with Nashville!

2. Let others be themselves. While you’re being you, respect others for who they are. And sometimes that means accepting that they’ll never accept you for who you are.

3. Passions are the foundation for a life well lived. As I look back on my journey so far and think of what keeps me going, it’s passion. I look forward to a lot. I have phases as well as some long loved passions such as reading and writing. Knowing the things that make me happy in ascending order of energy required has helped me get through many a flare up.PhotoGrid_1445107463651

So as I turn the big Three O I will be spending the day with my son and mum. I’ll have dinner with my parents, brothers, husband and son. My husband, son and I will be going away for the weekend for a tiny getaway. It’s a perfect way for me to celebrate, the only shadow will be that I won’t see my sister.

And I’m not the least bit sorry for not throwing a party (see learning one!).

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The Definition of Successful

I think I lost sight of what is important. I lost sight of my definition of the term successful.

I got sucked into the idea of “rising”, of the point being to earn more and more and be “business minded” (read: work lots and have heaps of money).

But that’s not me. My goal has been to build myself a permanent part-time career. So that I can always chase the intersection  of my work life balance. So that I can be well, so that I can be a good mama.

My body and energy levels are unique. Prepregnancy I knew this to be 25-30 hours per week of work. Now, I plan to begin the experiment at 20 hours.

But I was looking for the wrong things.

If the goal is to have a permanent part-time career, then the actual job is going to be a bit different to what I have been thinking. Unfortunately, the business world hasn’t caught up to the idea of meaningful part-time work. So I need to aim at administration level roles.

If I’m being honest, that is a sticking point. I like to think of myself as “past” admin, I have done some amazing roles in the non-profit sector, there is such opportunity there, so I did far more than just administrative tasks when I was EA. Other administrative roles just don’t seem to cut it, challenge-wise.
But what is important is the ability to work part-time. And to be as close as possible to my baby’s care so that I spend as little time away from him as possible. I need to re focus on what’s important to me. Not get lost in the world’s definition of successful.
I am successful. I am good at my work, am married to the love of my life, have been given the joy of my life (my baby), know and follow my passions, live well with a chronic illness and love, A LOT.
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5 Things That Keep Me Sane

Having a chronic illness is hard. So is having it while trying to raise a baby.
In addition to coping methods and lifestyle changes, the following things help keep me going:

  1. A close family. We’re all pretty close, but my sister and second brother, Luke, are my best friends. My mum helps me with the baby often and Luke keeps me company a lot. My other two brothers will often watch the baby so I can go for coffee with mum and Luke. My dad also regularly calls to see how we’re doing. If I need them, I know they’ll be there.
  2. My faith. I know there’s Someone bigger than me keeping everything together, so I don’t have to. Prayer, hope and grace are super important mechanisms I use to cope.
  3. Reading. I love to read. It’s my favourite. I usually read a few books at a time, have multiple requests with the library and a giant to read list on Good reads. Getting lost in a good book with a hot coffee is perfection.
  4. Passion. I am passionate about many things. This keeps me putting one foot in front of the other. Currently I’m in love with scrapbooking my baby’s first year and our wedding.
  5. My husband, baby and dog -my little family. They are why I am so fixated on trying to be well, why I push myself, why I smile every day.IMG_20141029_141835-EFFECTS
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Letter To My Husband

I have made no secret of the fact that I wouldn’t have survived the delivery of our son or the last 10 weeks without you. I have told anyone who will listen.

You were the one who got me through the most intense pain of my life – you were with me through 19 hours of the most torturous back pain I had ever experienced (and I’ve experienced a lot!) and all of the other tortures that make up labour and delivery.

It wasn’t so much what you did or said (but your coaching at the end was one of the most helpful things anyone did that day, besides the numbing injections!). It was your presence.

Your presence makes everything better.

A screaming baby, a persistent neck ache or lack of sleep all seem more bearable with your company.

Thank you. I thank God for you every day. 

I am so thankful that I got to meet you, that I got to marry you and that I get to raise this precious baby with you. 

Please always remember to pause and take in these moments. They will never happen again. Please remember to invest in our relationship. Please remember family is more important than money. Please remember I will always love you.

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28 Weeks and a Wedding

The 28th week has ticked over! In fact, tomorrow I am 29 weeks! Time has started to blur past.

My wedding came and went just over a week ago, the day, like the preparation, whizzed by. It was a whole lot of heat, fatigue, fun and love. I was more focused on, and more excited about, the baby. I also didn’t think I was a wedding person. But it was the most beautiful day. There is nothing in the world like telling the love of your life that you will spend forever loving them in front of your friends and family.

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I have the most precious memories from this day. The first was walking down the aisle toward my love. He looked gorgeous and I just couldn’t believe I was there, getting to marry him.

The photo shoot was exhausting in the heat, but it was also a fun time. We got some beautiful shots. It was really fun to play model for a day!

Unfortunately I was well and truly out of energy by the time we arrived to the reception. After our entrance and the cutting of the cake, we had the speeches. Wow. I was particularly touched by my mother-in-law’s speech. My sister, father and brother-in-law gave great speeches also.

But the one that took my breath away (and nearly made me cry in public, from which I fear I wouldn’t have stopped being the exhausted, pregnant woman that I am) was my husband’s speech. I haven’t the words to describe how much I love him or how much I appreciated his precious words to me. I stole his notes for my memory box!

We have been told how much people enjoyed our wedding, there was a lot of dancing! So, the last hours of the wedding were characterized by some excellent dancing. Not mine, besides being tired, it was really hard to dance in the big, heavy dress! Our first dance didn’t go as practiced, as it was too hard to do the turns with the train. I am already planning an easier, shorter dress for our first anniversary so that we can recreate that dance properly – it was to Celine Dion’s If That’s What it Takes, sung by my brother! That was pretty special.

And then, all of a sudden, it was done. We are married! We are now making our home together, carrying on as usual and preparing for our baby to join us in the next 10-14 weeks!

I am supposed to be working and organizing a whole heap of things, but between the pain (hips, lower back, glutes, neck), the fatigue and the daydreaming of what my baby will be like, I haven’t done as much as I’d like yet.

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

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Week 14

My neck has been uncomfortable for my whole pregnancy (yes, 14.5 weeks of 5-7/10 pain every day). So on Friday I went for a massage, unfortunately they thought that due to my pregnancy they shouldn’t use the usual pressure. Needless to say, I went away with almost as tight shoulders and neck as I went with. With chronic pain and fatigue, caused by chronic tightness in these muscles that I use frequently (especially for work), the only method to release the muscle (and therefore gain some respite) is deep tissue stimulation.

Due to my increasing pain over the weekend, last night I slept very poorly. I do have an appointment with my physio on Wednesday and I am counting down to it. Also, I am counting down to the end of the pregnancy, when I can have something stronger than paracetamol again!

I confess, I had been hoping to keep the maternity clothes at bay with belly bands (that cover my open pants button and keep my pants up). Most of the time, I am more bloated than pregnant, so I prefer to have nothing around my waist. It feels rather early to contemplate maternity clothes though…I am so pleased that I mostly work from home, so I can sit here with my pants wide open or live in tunic tops.

In unbearably cute news, I bought my first item that wasn’t a big-ticket, budgeted one…a tiny hat! It is mint green with a knot at the top, I can’t believe my baby is going to fit into that little thing.

We met the midwife this morning and heard the heartbeat. Due to belated shifts in timings for the scan (by the radiology company), my partner hadn’t made the scan appointment, therefore he hadn’t heard baby’s heart beat yet. That tiny, rhythmic beating, engenders such hope, such happiness, such contentment. I was so glad to share that with him. We are now on the countdown to the anatomy scan in four or five weeks!

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

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So Much Has Happened!

The last week and a half have been massive! I was awed by seeing my baby by my 12 week scan on the Thursday before last. Then on the Saturday, as a birthday present from my love, we went over to Kawau Island (off Matakana, North of New Zealand). The water was deliciously blue as we were shown around the edges of the island by boat, before being dropped off by the Governor’s Mansion.

We walked through a track in forest land to a remote beach…where my love proposed!

It was the most beautiful, romantic proposal I could have imagined. I was blown away. Of course, I said yes!

We then spent the week touring the upper parts of the North Island, as I had never been past Matakana previously. It was beautiful. A whole week, mostly alone with my love, to be calm and just enjoy. We experienced the richness of New Zealand’s history in Russell, at Waitangi and in various historical properties around the areas we traveled.

In the middle of our trip, the pregnancy clock ticked over to 13 weeks. Over the past week, I have noticed an improvement in my fatigue. I am still tired, but then I have chronic fatigue so that’s usual, but I am no longer desperately tired from the moment I wake. I no longer crave a nap at 10am or in the afternoon. I am back to afternoon rests (with a book or an episode of a TV series) and I can read before bedtime again! My eating has also settled down. I am still hungry regularly, but I am closer to my usual eating habits, which is great as I have put on a bit too much weight with the fatigue, pain and nausea.

So it is all very exciting!

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Post-Exertion Wipe Out

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

With the high levels of fatigue and struggle to sleep, my body is struggling a little. I have found that post-exertion I am wiped out. Walking up the stairs can leave me a little breathless. But my 25-30 minute walk with the dog can leave me flat for a good half an hour. 

I was finding the level of fatigue after yoga or Pilates unbearable, which is why I have done neither in a few weeks. I was feeling wiped, to the point of feeling faint, so I’ve had no inclination to force myself again yet.

However, I want to try to do a gentle session of Pilates tomorrow, to get back into it again. I want to reclaim my little schedule as soon as possible. I am determined to help my body prepare for the endurance race ahead, with pregnancy, labour and then caring for a tiny baby.

Meanwhile, I am so pleased it is time for another weekend. Tonight my love is coming over for the evening. Tomorrow I shall meet a friend, do some exercise and otherwise potter around home. On Sunday we are going back down to the little town we have found for another round of house hunting. This time we are taking my mother, so she feels included and realises it is not so far.

Feeling so blessed to have my mother onside. She came with me as I met my midwife for the first time today and she is already talking about the things to buy me for when I get bigger (thanks, but I’d like not to think about that for a while yet)!