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Running on Empty

I’ve been running on empty since my pregnancy with Nu.

Thinking that I was fighting Fibromyalgia, I actually engaged in a drawn out raid and burn on my body. Any leeway I made was immediately voided by my overreaching ways.

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Tired… Just tired

There’s no denying it, a family with a mortgage in a big city can’t live on one income forever. So I rushed back to work, not realising how deep the deficit caused by pregnancy and the first year of parenthood was. I thought that “only 20 hours” was a fibro friendly compromise. And I have managed, but at a cost.

My neck has deteriorated to the point that it stops me from obtaining many whole sleep cycle most nights (90 minutes, necessary to reach the deeper sleep state and repair). We’re meant to have about four a night. No pain relief can mute the pain and it’s always tight and stiff.

So, at the conclusion of my work contract, I have chosen to take a break. There are many things I need to do, but I will hopefully have the freedom to rest as well.

Here are the self care practices I plan to engage in:

  • Rest and meditation
  • Pacing
  • Swimming and spa soaks
  • Good, whole food

I’m really hoping I get another appointment with the pain clinic and that they might have something, other than medicines that don’t work or have severe side effects, to help. If I can control my neck, I can sleep. If I could sleep, properly, regularly, the possibilities are endless!

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The Current State of Things

With the end of the year at hand, I have been reflecting on where I am at and all of my experiments. I have learnt a lot through ever increasing threads of information.
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Me and my little elfie!


Sleep Experiments
I have taken 50mg of amitriptyline to help with sleep and pain for nearly ten years.

Earlier this year I got fed up with the fact that I take this medicine everyday and yet I still struggle to sleep well – loosing up to an hour a night to restless/awake times is not “good” sleep. So I have tried SleepDrops, chamomile tea and playing with the time/dose of amitriptyline (anything but a higher dose). Finally, after a lot of research, I tried melatonin and reported back on that here.

Research has confirmed my suspicions that the amitriptyline is not helping as much as I hope and any effects must have worn off. So I have slowly begun to reduce my dose. Currently, I’m on 20mg.

I found Curamin and report back on this here. With its help, I have managed to get blocks of sleep, longer than an hour or two! Before I ran out waiting for the new bottle to come, I was consistently sleeping for five or six hour blocks. This made a huge difference to my day and my energy levels were slowly picking up.

Sleep is a huge battle and has a huge impact on my day – but I’ll be happy when I’m not reliant on chemical manipulation to sleep.

Pain Musings

My neck has been hovering at 5-6/10 most days. It will reduce slightly after meditation and physio (acupuncture).

It did creep up to 6-7/10 for a good few months in a prolonged flare, but the Curamin helped bring it back.

My shoulders and back tend to be consistently tight and move from moderate to minor pain depending on sleep and the day.

My knees have been giving me a lot of trouble, the physio thinks it’s due to one of the quad muscles being lazy. The rheumatologist wasn’t bothered at all that I suddenly have joint problems (my index finger joints have become achy) after years of stable symptoms. The Curamin seems to have helped this. As does the yoga.

Fatigue

My fatigue levels have hovered at about 5-7/10, depending on a lot of factors, this year. First thing in the morning I feel really foggy. I crash late morning and mid-afternoon. And become too sleepy to hold my eyes open by 9pm.

But I am managing working 20 hours over four days far better. It’s difficult to come home with the toddler and not get a rest or time to meditate, and this has caused corresponding increases in fatigue and neck pain.

Well Being Practices

My staple supplements are Curamin and high dose magnesium.

I try to meditate (body scan or Yoga Nidra of varying lengths) most days, I feel like it really helps. As I said above, it can reduce my pain and fatigue levels, and, when done around mid afternoon, helps me cope with the evening routine better.

I see a physiotherapist who performs acupuncture about every three weeks. This is vital for my neck, the little needles in key points for 15 minutes allows them to release. They also do a neck traction which helps it to feel less compacted.

I try to be mindful of what I consume. I have a smoothie most days and adore salads with a  variety of veggies, nuts and seeds. I aim for more than five serves a day (which I don’t always hit, but its a good goal!)

My exercise levels have taken a hit with my knees playing up. I walk 20 minutes when I can and do yoga as often as my energy/knees/time allows.

Experiments

  • Acetyl L Carnitine – meant to increase energy and repair nerves. I did this for two months and upon stopping couldn’t ascertain a change. There was too much going on.
  • Melatonin – after 16 days of awful sleep I aborted the mission.
  • D Ribose and CoQ10 also weren’t for me.
  • Probiotics were really useful when I was beset by gastrointestinal symptoms and infections.
  • Iron supplements and B12 injections monthly, I have a month to go on a three month experiment, but the iron levels have already crept higher than I’ve ever seen them!
I’m so grateful that I’m in a far better place than I was a few years ago or when I was pregnant. My passion for finding better options for me and for sharing them with others is not diminished, so I’m looking forward to continuing in 2016.
I want to wish you all a happy New Year. Thank you so much for reading my little blog and sharing my journey with me. X
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The Perils of Pacing

When you have chronic pain and fatigue, you get used to doing what you can. Using the energy you have. When the goalposts change it can be hard to figure out where you’re at.

You are so used to pushing, that you push right past what is a sensible limit.

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Nu having a rest

Yet, if you don’t push, you are accused of limiting yourself – creating your own box. And you don’t get any further.

I can be my own worst enemy, no one pushes me further than I do. But my husband and son are a close second.

Mounds of literature on Fibromyalgia include pacing as a core non medicinal treatment. A part  of what you can do in cognitive behavioral therapy (another prominent Fibromyalgia treatment) is to keep a diary of your activities for the purposes of finding limits and trying to stick to them.

But my energy and pain levels change so often, I couldn’t tell. Last year, a long walk would have caused a great deal of pain afterward. Last week, I did a 50 minute walk with my husband and son. The only side effect was “normal” muscle tension the day after.

The part after learning your limits isn’t so easy either. I know that I need to rest around 3pm – after work and before the evening. But on the weeks when my husband works day shift and when there’s a lot on, I can’t. So I deal with increased pain and fatigue.

It’s this proximity to normal we’re expected to live at. Where noone else sees or feels the consequences of normal activity.

Working until 3pm seems a luxury on its own, how can one need a rest?!

You just got into the habit of going to sleep at 930. (Like it can be changed when you’re absolutely struggling to keep your eyes open)

How hard can it be getting up with the toddler at 6 or 630am?

Sometimes I wonder the point of learning to pace myself. It’ll never be enough.

But then I rememeber my key principle for this life – I don’t have to live like that. I have tools and knowledge for a reason!

Some tiny steps to helping:

  • Keep to your desired bedtime, no matter what others may say.
  • Take a 10 minute Yoga Nidra or body scan meditation in the car after work and before picking the child up.
  • Find a stretch that you always find particularly delicious and do it a few times a day.
  • Utilise pacing tools when doing computer work (and good ergonomics always!)
  • Create an exercise plan and slowly work up, allowing for extra tired/painful days.
  • Learn that you need to look after yourself. Put that oxygen mask on yourself before you help others with theirs!
  • Grab any opportunity to do a meditation/hobby/exercise you love.
  • Try to listen to your poor body when it screams “no!” But always expect slightly more.
Do you have any other tiny tips for helping with pacing?
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“Normal,” Relatively Speaking

I thought I was relatively “normal,” physically speaking. Just with some extra pain and fatigue.

But as I have come back into the workforce (physically) after Nu and two years of contracting, I have realised that it’s not so.IMG_20150927_145928

I can’t sit still. My neck begs to be stretched so regularly but I fight it in order not to stand out in meetings. I have to stand for some periods of time. I have to stretch. I get up often.

At a physical job it’s not as easy to take breaks at odd times because you just need to. You can eat at random times, you just look like you are always eating.

You can’t lie down with your heat pack as you need.

On frosty mornings I need gloves to cover sore, cold fingers.

Sometimes, when I am very sore and tired I am Emotional. With a capital E! I have been so tired that I just want to cry and crawl under my desk more than a few mornings recently.

After work I am wiped. I need to sit with my heat pack before I can keep going. A 20 minute walk, dinner and getting Nu to bed is all I am capable of. No ” school night” outings!

Despite all this. And more. I do it. Despite a bad back and neck, intermittently aching knees and fingers, tight, over reactive muscles, extreme exhaustion, fluctuating emotions, high energy needs, dizziness and nausea – I DO IT.

I spend a couple of hours with Nu, an hour travel time, six hours at work and several more hours with Nu each day. Except Wednesday and the weekends when I get to take work out of the picture.

People with fibromyalgia work so much harder than others to live “normally” (and we are expected to live “normally”, forever competing in an endurance race we just can’t win) and I’m so damn proud of myself for what I accomplish.

Whatever your normal looks like right now, you should be proud of what you accomplish. One foot in front of the other.

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Five Reasons Working From Home Can Help with Fibromyalgia

Energy conservation and the ability to administer self-care are two very important elements of living well with Fibromyalgia.

Working from home, while a little isolating, is a great opportunity for Fibromyalgia/Chronic Pain/Chronic Fatigue fighters.

When I was contracting it was a fantastic way to be flexible around my husband and baby. When I was based in an office, it was a nice change of pace to utilise the option to work from home.

Other posts you might like

9 Inexpensive Items I Use to Fight Fibromyalgia

Why I’m Treating the Fibromyalgia as Naturally as Possible

My Daily Log, Why I Track Fibromyalgia Symptoms

I still had to transport my boy/s to care and back again, so I didn’t save much travel time, but eliminating transport time and energy is super helpful in managing fibromyalgia.

Audio video of my five reasons it’s good to work from home with Fibromyalgia

Here’s my five top reasons why it’s good to work from home with fibromyalgia:

  • You can administer your heat pack without looking like a granny. (Heat is my favourite pain management technique.)
  • You can use your breaks to lie down and pace the day as you need. (Eating is easier too -I’m a grazer, so rather than eat a big lunch, I break it down into smaller meals.)
  • You can do yoga stretches without poking your butt out or getting on all fours in the office. And stretch your neck a lot without looking odd.
  • You have more control over your working area – temperature control, lighting, windows etc. My home desk is set up perfectly for me and I have my Swiss ball if I get sick of my chair. This often means the difference between able to work and not. Some days, I am capable of work but physically being present in the office would push me off the edge of coping.
  • You get heaps done without constant interruptions and without the little stressors the office provides. (Research suggests it takes something like half an hour to settle back into a task with each interruption.)

Five reasons working from home can help you manage fibromyalgia

2018 update: Now that I have a third baby on the way it has become abundantly clear that I will need flexibility and efficiency in order to continue working, so working from home will be the way to achieve this. Probably as a freelancer, but I’ll let y’all know how that goes when the time comes.

Do others with Fibromyalgia/chronic illness find working from home useful?

For more information about fighting fibromyalgia:
https://youtu.be/CHNH7glJFI8
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Managing Brain Fog at Work

Starting a new job is both a time of increased fatigue and an opportunity to begin good habits for managing yourself.

In my first few weeks of a new job that bears more responsibility and has required a lot of fast learning, the fatigue levels have increased.

I have been experiencing some of the old brain fog side effects such as loosing words (they’re right there but you just can’t reach them -so frustrating and really obvious!), muddling things up and just plain forgetting things.

Luckily there are a few ways to work with this:

  1. Plan. I make sure I have a master list of the key projects, a date schedule for key tasks/deadlines and a daily to-do list. I work off this through the day and spend 10 minutes before I leave writing the next day’s to-do list.
  2. Prioritise. I have had a few pressing projects that I didn’t feel I could prioritise yet in hindsight I see one that could have waited a little longer!
  3. Rest. This is a hard one with the baby, my morning is rushed and there isn’t much time for an afternoon rest. The weeks that my husband is on nightshift I try to take advantage and have him pick up baby so I can rush home and actually lie down with the heatpack. The weeks he is working until 6pm I just have to try to grab snippets of time to sit down.
  4. Sleep. Sleep is a problem for most people with Fibromyalgia, and it is a big struggle for me. If I’m lucky, I can spend about 9.5 hours in bed and achieve 8-8.5 hours of sleep. I have been making a point of getting to bed by 9.30 as often as I can to maximise sleep opportunity. I have found a relaxation technique where I imagine warmth and relaxation creeping slowly throughout my body starting at my toes, I rarely get to my head, and I find it really useful when I’m starting to get frustrated by my awakeness or discomfort.
  5. Exercise. It can slip when you’re  exhausted, learning a new routine and it’s cold. My knee problem hasn’t helped. However, even a 15 minute walk is counted as success at the moment. Keep it managable and positive (build yourself up for what you do, don’t beat yourself up for what you don’t.)

Do you have any other suggestions?

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Three Good Things August 17 2015

I’m a member of a Fibromyalgia support and information group on Facebook with an amazing administrator. She introduced me to the concept of Three Good Things.

This concept has really inspired me. On days when I’m past exhausted and in a lot of pain and can’t see beyond that, I force myself to write my Three Good Things in my diary. 97882024561081

This week I want to share Three Good Things as a kind of round up:

1. I’ve settled into the routine of my new job with the baby and conquered the week of my husband’s nightshift. I’ve been exhausted, but I’ve done it!

2. Something I’ve wanted to do for a while, but always found too extravagant, was to have a private yoga session. A very experienced, very excellent yoga teacher helped me to create a modified sun salutation sequence to build my strength and ability back up. I want the stretching, the breathing, the calm and the exercise of the practice. I’m looking forward to fitting it into my week, hopefully three times per week so that I can build up to a whole class. I also got the Yoga Girl book from the library today.

3. Food experiments! I bought a whole free-range chicken on Sunday and roasted it in white wine, salt, pepper, vinegar and paprika. I served that with roast vegetables I cooked with it. On Monday I had a sandwich for lunch with sliced chicken meat. On Monday evening I put the rest of the chicken into the pressure cooker with water, salt, pepper, cumin, tumeric and coriander for an hour. After that I de-boned the chicken and put the meat, stock and vegetables into a saucepan for another hour. I’m feeling very virtuous eating my soup!

I’m mindful of these things to be grateful for (and passionate about). 

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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.

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Naming It

The sad truth of having fibromyalgia is that another health burden can throw you off.

Intestinal Candidasis is wreaking havoc in my life right now. Months of infection after infection and super bloated tummy and extra fatigue.

I’m on prescription antifungals and probiotics. I’m not eating gluten, I’ve reduced dairy and sugar.

Still I’m struggling. I’m back on regular pain killers and waiting for bed all day.

So when changes come I freak out. My husband taking on an extra shift this weekend nearly made me bawl my eyes out. I’d been waiting for the weekend!

I have been offered a job opportunity that I should be chuffed about, instead I am scared. My boy is busy! I’ll be going back to rushing us ready, getting him to care and me to work (feeling over the day before I even start working). And then dealing with my boy in the troublesome 4-7pm timeslot. Presumably I’ll need to resume going to bed by 9 and feeling awful and waking (more) frequently due to the neck pain. Yet I can’t not work and I may as well try something I will enjoy.

Today I am naming it. Today I am sad that my fibromyalgia limits me, that it makes me scared of a good job opportunity, that it makes life so damn hard. I am also naming my frustration with comparisons to all the other working mamas, I have some extra burdens. (And just because a great many people deal with the same thing, doesn’t make it any less real or hard for any individual.)

So I’m going to be gentle with myself. Hope will return to the usual abundant levels. My bubbly nature will peek back through the fatigue cloud.

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Wading Through the Options

Everyday we are faced with multiple choices. For people with limited energy (fibromyalgia, chronic fatigue syndrome and other fatigue inducing illnesses), these can take their toll.

I am faced with the best choice for work going forward. Balancing many factors, with my baby and my wellness being top, isn’t easy.

I live my life doing innumerable cost to benefit calculations. Is my energy worth that outcome? Sometimes it’s pure forecast, can I cope with that based on what I know?

They don’t need to be complex. Just a simple check in with yourself.

Do I think this is worth my energy? Is it making me feel well or less well?

Work has taken on a new definition since I went back as a mama. It’s the place I go when I’m not sick and I’ve juggled my baby’s sick care arrangements.

In two and a half months we have both had a bad cold, he’s had a gastro bug and we’ve both been hit badly by a major virus. I’ve had three days off work, my husband’s had the same and my mother and father in law have done a day each.

After much deliberation, I’ve decided to pursue some further study (by correspondence) and try contracting again. This way I have complete flexibility over my working hours while my little guy is young and I keep gently building my career.

There’s many other times when a check in or cost/benefit analysis can be beneficial.

For socialising it can be helpful to factor in social benefits (distraction and connection) to yourself, benefits to your partner (they get to have some fun) and your energy needs. Perhaps there could be a compromise.

It can be hard to ensure you weigh the options properly (scared of pain, seeing past the exhaustion, negative emotions). This will require some soul searching and some experimenting. But this approach can be a part of your patchwork quilt to living well.

I want to be wise in my choices (so as not to cause extra pain and fatigue) but I don’t want to miss out on life. Particularly when it comes to my son. So my weighting is usually bias in his direction, but that’s my conscious choice.

Work will always come second to him. And both will always be factored in my cost/benefit analysis.