Newly Diagnosed? What I’d Tell Myself

By the time I was diagnosed, I had already been on amitriptyline (a tricyclic antidepressant taken at a lower dose to help with sleep and pain) for a couple of years. A doctor prescribed it for my extreme struggle with sleep.

So I already had a base when I was diagnosed, which was lucky because I got no other information, advice or help when I got the word.

If I could go back in time and help myself out, here’s what I would say:

Research, research, research. Back then, there wasn’t much information around, but there was some. Our own research is what will help us the most. It will eventually lead to the best pain management options which are:

  • Heatpack
  • Hot bath
  • Stretching
  • Yoga
  • Acupuncture by a physiotherapist
  • Panadol and nurofen taken together for a few doses
  • Trigger point release, both for yourself and by a physiotherapist or massage therapist
  • Meditation – a guided meditation called Yoga Nidra will be one of the most amazing things you will find, much too late to benefit from it in the miserable “full time work” years or the early baby days.
  • Nutritional supplementation – high dose magnesium is super important. Along with iron supplementation – the doctor will say it’s “normal” but it’s at the end of a super long range – aim for ferritin levels of 60. Research and experiment. There’s D Ribose, Acetyl L Carnitine, COQ10, B complex, vitamin C and more.
  • Keep walking, one good thing you did was keep moving. Just go a little more easy, it’ll reduce the tightness in the muscles. Pilates and yoga are king.
Some other key things that help:
  • Learning to rest.
  • Prioritise yourself.
  • Believe in yourself, sometimes you’ll be the only one and that’s OK.
  • Don’t let yourself fall down the rabbit hole, allow yourself time for grief and then carry on.
  • Always hope for better, it’s attainable.
So this is what I would tell myself. Perhaps it is of some use to those who have been recently diagnosed.

 


sign up to newsletterI created an updated version of this as a free PDF printable in my resources page and it is a chapter in my book Melissa vs Fibromyalgia.

Invisible Boxes

Chronic illness is like having an invisible box surrounding your life. Noone can see the confines, not even you at times. Yet they are all too present. Constricting when you least expect it. Never seeming to widen.

You can see others and what they can do, but you can’t keep up. And they can’t see why you can’t.

Your significant other’s (and children’s) life becomes constricted also. So that you must fight your own box and theirs.

Your guilt over the effect of your illness on them can eclipse even your grief of what illness has taken from you.

It can be a double sentence.

The only way out is through. Some days are harder than others, but you have to keep going. Because there’s no other way, and noone can truly help. It’s you, your body and God.

When you’re having a tough day (week/year/life) it’s useful to rememeber to seek fellowship (I belong to two fantastic Facebook groups and have a few key people) and gratitude. Try to remember the things you are thankful for. Because pain and fatigue and fog and headaches (the list goes on) cannot take that from you.PhotoGrid_1446180811994

I’m thankful for my son, my husband, my family, my dog, my home. I pray these will never be taken from me by my invisible box. That my people will bear with me and endeavour to help me reach outside of the box.

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!).

I Don’t Want to Feel Like That

Recently I’ve been called upon to make a big decision, to go to India for two weeks with my husband and not yet two year old baby.

I’ve been asked to explain myself. Told my reasons against going are invalid.PhotoGrid_1445107463651

But I don’t want to feel like that.

I don’t want to be in so much pain that I wonder why I haven’t collapsed, why I’m not in hospital, why no one realises how bad it is.

I don’t want to be so very alone and have no control and feel like that.

I have just pulled myself back from that after pregnancy and the birth of my son. I crawled my way through, existing, waiting for it to get better. For sleep to come, for pain to reduce. And it has just recently become more like a life, not a struggle.

After several awfully unwell years in my early to mid twenties, slogging my way through progressing symptoms, feeling worse and worse, I pulled myself out. But it took two years of working 3/4 time, doing little else, working my way up to tolerating 30 minutes of walking and being able to reduce physio appointments from weekly to three weekly. I can’t go back to feeling like that.

I know in my soul that going on a long plane journey, to a hot, dirty, noisy place where there will be many social expectations and food that will upset my sensitive stomach – right after having people staying in my house for a few weeks and going to the social obligations of a wedding at home – won’t work. Going to a place like that with people who ignore or don’t understand Fibromyalgia is not a good idea.

I don’t want to feel like that, vulnerable, alone, sick, scared and unable to look after my baby.

My baby is my first priority. He doesn’t sit still for more than one word per page books, he needs to run and climb and wriggle. He doesn’t yet understand. When his routine gets upset and he goes to sleep late, he wakes early and has a miserable day after.

I’ve said when he’s 3 we could go, it would still be hard, but by then he’ll have less of a baby routine, he’ll understand and hopefully he’ll sit through a movie!

Just because I have Fibromyalgia, doesn’t mean I should have to feel so miserable, I don’t have to feel so bad that I wish I were not alive, I don’t have to feel like that. That’s what all my experiments have been about.

It’s not acceptable to have to feel like that. And I shouldn’t be forced to be. People in my life should be happy I don’t have to feel like that. And that I know how to avoid it.

Tiny Mission Sleep Update 1

After declaring war on my sleeplessness, I have formulated a new series of Tiny Missions to attempt to get some sleep. To get 8-9 unbroken hours per night with as few restless/awake periods as possible.

This would be the first time in well over a decade.

It would appear that I have stepped into an experiment on how I cope with less sleep! For the last week I have really struggled to get eight hours of sleep, broken or blocked.

It’s been a mixture of internal and external factors. The baby has decided he gets up at 6am, despite being exhausted and fussy all morning. It’s been taking me a while to get to sleep and I’ve begun to struggle to get back to sleep if I am woken after 4am (bathroom, husband, neck etc.)

After I tried the chamomile and then the Sleep Drops (I’m waiting for the opportunity to use this for a nap to decide how useful it may be to me going forward), I started taking my amytriptoline half an hour later, at 8pm. I also started taking my magnesium supplement in the evening.

The combination of these things seemed to reset my body a little bit. I started to experience blocks of sleep. For about a week I had up to five hour blocks of sleep – no restless or awake lines on the Fitbit sleep chart! Previously my chart looked like I never had blocks of  sleep, there were so many restless and awake lines it looked like they crowded out the sleep almost completely.

Unfortunately, it didn’t last. My neck is in a flare up due to my new job, dealing with a busy toddler and my husband on long, alternating shifts.

For the last three days I’ve had less than eight hours of sleep. A lot more restless and awake times because of my neck and then woken at 6 by the baby. Usually when I’ve had a bad night from 6-7am has been where I catch up.

So I have a few learnings to report so far:

  • Magnesium taken in the evening seems to help with relaxation.
  • Taking the amytriptoline slightly later may help.
  • The 6-7am slot is usually where I catch up on much needed sleep.
  • I need to get my neck under control.

Sleep, The Quest For

Does anyone else find it ridiculous that many millions of people are exhausted; struggle to get to sleep, to stay asleep, to wake feeling refreshed, to have sufficient energy to live; yet their doctors are not (generally) working their butts off to help find a solution?

I had one GP, several years ago, give me the diagnosis of Fibromyalgia, with no other help. Another GP who I saw once, about the same time, put me on amytriptoline. My first GP in my new city had no further suggestions.

My most recent GP seems open to helping and has referred me to a rheumatologist (who’s done nothing so far).

Yet I am still struggling with sleep, a most basic survival need. I am expected to live like everyone else with a third of the energy.

Sleep is an elusive beast. I long for bedtime, my body will tell me I’m too tired to be awake, yet I wake multiple times in the night. I NEVER feel refreshed or well rested.

I have spent much time awake at 5am wishing and hoping I could get back to sleep, only to still be awake when the baby peeps somewhere between 6-7am.

My Fitbit sleep tracking has shown that it takes at least nine hours in bed to attain eight hours of sleep. Usually more like 9-10 hours. There are many awake/restless periods every night. It is uncommon for long periods of sleep.

And this is while I’m on 50mg of amytriptoline!

So my Tiny Mission (or giant mission!) is to tackle sleep.

Thank God for the internet. Seriously. I have found more useful information there than in real life.

Some things I’ve found to look into further in a preliminary search:

  • L-theanine
  • Tryptophan
  • Hops
  • Valerian
  • Magnesium plus calcium
  • Melatonin

I have found the Treating Chronic Fatigue and Fibromyalgia: An Integrated Approach website and i am looking forward to working my way through it.

A sign that made me comfortable with their approach was that they acknowledge that there is no cure. But there are many treatments to help us.

The site suggests some over the counter, natural and prescription medications that can help sleep. They also suggest that some working together, at lower doses, work well.

I have seen the light, I need to try some other tactics to get some sleep. (Always with my GP’s advice, no mixing medicines unsafely!)

My biggest wish is to be able to spend 8-9 hours in bed and actually get a similar amount of decent sleep. That would be amazing!

And so the experiments begin.

Do you have any suggestions or any experience with the above supplements?


This is an old post, but I have done a lot of research about sleep, find some resources below:

Graphic printable sleep with templatesI created this series for those of us who want to take one subject at a time in this printable there is the chapter from my book about sleep and templates for making your own sleep hygiene plan and tracking your sleep.

 

 

 

 

 

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A Whole Person

It’s a funny thing, blogging. I invite you into my life – my life distilled into a post by post basis, with a tilt toward health and mamahood.

You could be forgiven for thinking I spend my whole day fixated on my health.

I am passionate about a great many other things, reading and writing are high on the list. I read a great deal more than I share on this blog, because of the health tilt.

This blog functions as a partial diary, to share my hard earned knowledge, to write through and explore some parts of my journey and inner landscape, and to keep myself writing.

With the baby, work, the house, reading, the (attempted) healthy lifestyle, writing has had to fall down the list a ways. But this is my place to put (metaphorical) pen to paper. I’m practising for the day I have spare time and energy to write properly again. 

Looking after my health is a lifestyle. I choose to focus on all the ways I can be healthy (modified for the lesser energy and extra pain). A lot of what I do is what everyone ought to do to look after themselves.

Keeping up what your passionate about, in whatever way available to you at the time, is a very important part of a healthy lifestyle.

So, if there is a message to this pensive post, it’s an encouragement to keep up your passions despite your pain levels. Because I am, despite what it looks like on my blog 🙂

The Power of Planning

Boundaries are a difficult business to negotiate when you have chronic pain and fatigue. But when you’ve spent the better part of a decade battling against your own body and managed to make some headway, you need to hold on to them tightly.

It’s me who pays when I overdo it.

I try to prepare for the fact that my new job will make me more sore and tired. It’s taken two weeks to come back from an intense flare after three months at an unsuitable job. And that job was easy.

My new job will be more intellectually demanding. I can’t even find the vocabulary to adequately explain the pain that will come from the physical situation an office job requires, the fatigue, and the cycle of pain and fatigue boosting one another.

The other day, I knew that I could manage walking to and from the park or walking around in it. After some negotiation with the husband, we walked to a closer park. Upon reaching it we decided to explore the walkway as we hadn’t been there before. It was a nice, ambling wander that turned out to be an hour long by the time we got home. My legs ached that night, which was a bad sign as I usually pay for things the next day.

And I did. My legs were so tight by the following evening that I had to sit with my heat pack on various parts of my legs, my knees were aching to a point where I wanted to cry and couldn’t put weight on them. I spent 15 minutes stretching them out gently. Then sat with my legs up for the rest of the evening, when I had to get up I had to hobble. The morning after it had receded back to a slight ache and tightness level.

I am trying to build my new (hard earned) awareness into my thought patterns. I can make a difference with forward planning. When I try to talk it through with my husband, it is part verbalising and working through it and part getting him on board.

Being able to plan, feeling in (some level of) control is an amazing feeling. I love it!

So what I ask, and what I hope for for anyone else with fibromyalgia or any other illness that imposes limits, is that people will accept our boundaries. Especially when they know that they are carefully considered.

I can guarantee you I have thought about the costs and benefits of a decision. I can guarantee I have included my baby and my husband (and my responsibilities to them) in my decision making. I can guarantee I have included some boundary stretching (on my terms) into my process.

This is my life, my consistent struggle against pain and fatigue, all I ask is that my boundaries are respected.

What I Learnt About Fibro While on Maternity Leave

I have learnt a perhaps unsurprising fact in the year since I have either not worked, or worked less than 10 hours a week. Despite the challenging role of mama to a sometimes stubbornly-against-sleep baby and everything that the first year of motherhood entails, my body responds well to not working. Presumably, more specifically, not working at a computer. And the variety of physical positions in my day. In the stop/starts in the day with a baby.

The key to my physical wellness, sadly, involves not working, or working rather little while also being a mama. Two things that are not possible with a mortgage in Auckland and a baby to raise. Plus, I rather miss going to work.

It’s just sad, beyond belief, that there is no cure for fibromyalgia and that one thing that helps me reduce the all day, every day pain and fatigue of it is more rest than one can afford.

I can write all the things I like about coping. But the crux of the matter is, we can’t afford to rest enough or to purchase all the necessary medicines/treatments etc. to be well without the income. Or, at least, I can’t see how.

Imagine the loss of power, of hope, one feels when they realise that any move that they make will almost certainly result in additional pain and fatigue. Staying up late to do something fun with your husband/partner/best friend. Walking the extra block. Working enough hours to pay the bills.

Part of seeking to live well with fibro, is to find the balance in these things. To decide what you won’t let fibro take from you and to cope, stoically (heroically), with extra (MORE) pain and fatigue.

I am doubling my working hours this week, to 15. Within two weeks, I will be working 20 hours, predominantly at the computer, because that is where my skills lie. So my mind has been full of questions: Will I cope? Will I still be a good mama? Will my fatigue worsen? Will my pain worsen? Can I counteract the consequences somehow?

But I go in with many tools to support me. Fibro is not taking my energy for my baby away from me.