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.
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:
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!
I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue). Usually my writing is very positive and I try to look at the bright side – what I can do, not what I can’t. Today I am going to share what it’s really like to live with Fibromyalgia, as someone who has lived with it for more than ten years.
The definition of Fibromyalgia, chronic widespread musculoskeletal pain, chronic fatigue and sleep disturbances, doesn’t convey the depth of the impact of this illness. In addition, the body is a whole – therefore one system acting up has effects on others, for example my tummy tends to get upset when I’m very sore.
Could a person imagine that they had one or two hours less sleep than their body needs, never sleep in a block of longer than one or two hours (that’s rarely completing a whole sleep cycle), spend some time awake (alone, in the middle of the night) in too much pain to sleep, need a medicine to help them get to sleep but still struggle to do so, and never wake feeling well or refreshed (whether they’d had four or nine hours sleep) EVERY DAY for ten years, they may understand my illness.
People who are just tired don’t get this level of exhaustion. This level of fatigue causes brain fog – loosing words, swapping words, memory problems and clumsiness.
I do everything possible to maximise sleep. It just doesn’t seem possible for me to sleep well.
In addition to the sleep problems and soul crushing fatigue that accompanies this, there is the pain. Chronic pain seems so tidy a term. What it means is that I have pain levels of 4-6/10 every day.
My neck takes the centre stage, interrupting sleep, being extremely stiff in the morning and generally tight and sore. When it gets worse it causes secondary symptoms – severe headaches, dizziness, nausea and vomiting. I have to see a physiotherapist every three weeks for neck tractions and acupuncture to keep it away from the worst end of the spectrum. Working at a computer, sitting still, and moving too much aggravate it.
My back is a close second, it often feels two moments away from spasm – like the back of the ribs are electrocuting it. When my lower back gets sore it radiates down into my glutes and upper legs. All down the spine are tight, angry muscles. I have to put a pillow under my legs in order to lie down.
There are more transient pains that come and go, such as my wrists and lower arms when I’m at work. My upper arms always feel bruisy, if I bang into a door frame (brain fog steals spacial awareness) it can hurt for ages, people grabbing my arm hurts far more than it should (hyperalgesia). Severe period pain for a week every month (dysmenorrhea). My knees have recently decided to join the party and have caused some problems – on some days the pain gets so bad that I can’t walk and walking is one of my daily pain management techniques.
Fibromyalgia also causes flare ups – a temporary exacerbation of one or more symptoms lasting from a day to several months. My entire pregnancy and my son’s first year were a giant flare up, all of my symptoms were wildly worse (pregnancy symptoms are like mild to moderate Fibromyalgia symptoms – so I had a double dose).
Sleep deprivation doesn’t help pain. There’s been studies on this – healthy subjects subjected to minor sleep deprivation develop Fibromyalgia symptoms. Luckily for them they could have a few good night’s sleep and recover. Severe sleep issues has been widely researched and is extremely detrimental to health .
Every day requires multiple pain management techniques. Including stretching, meditation, resting, pacing, walking, trade offs and judicious use of pain medicines. My pain specialist has recently made me see that by not controlling the pain as well as I can I am causing physiological damage – chronic pain changes the body – and I am leaving myself susceptible to more pain and fatigue. The neverending cycle of Fibromyalgia.
I, mostly, kick fibro’s butt. I work 20 hours per week, have a toddler, a hunky hubby and hobbies. I do a lot while in a lot of pain. There are people far worse off than me. There are people with milder symptoms than me. But for my level of symptoms I cope remarkably well. The pain specialist, my doctor and the rheumatologist are impressed with my progress. The pain clinic has nothing but medicines to offer me because I do everything else they suggest.
I wish, with all my heart, that I didn’t have these limitations. I fervently pray for healing. I feel more guilty than anyone could know about the effects of these limitations on my family.
So when I make a call to miss out on something, to go to bed or ask for help – I’m far past the point I can push through.
I have exhausted every avenue I have and know I can’t afford the consequences coming to me if I don’t rest. I’ve been doing this for ten years. I have lived it, researched it and constantly push myself. So all I ask of the people around me is to respect it when I say I can’t do something or that I need help. Trust that I am just trying to live well. It’s incredibly hard and I survive only by my faith in God and incredible willpower.
Coping with a toddler when you have fibromyalgia – this needs to be part of the parenting playbook when you embark on your fibro parenting career!
This post has been a long time coming. I haven’t felt like I was coping these past few months. But we’re here, so that’s winning.
Toddlers seem to have an abundance of energy that I could only dream of. If only Nu would lend me some, maybe it would be easier.
The big thing for me (on the days I’m not working) is to get him active in the morning, when I’m most able and he’s not so tired either. This way the afternoon can be a more relaxed affair.
I am slowly learning that I’ll never feel like I’m coping if I’m putting too much of my energy elsewhere (like work), so my balance needs to be kept in check.
Note: This post was written when my first son was a toddler, I have since had more boys and all of this advice still stands!
Here’s a few tips I’ve gleaned in coping with a toddler when you have fibromyalgia:
Accept help – my husband takes a turn in the morning when he’s not at work, I never get back to sleep, but it’s a break. If grandparents want a visit, give them the toddler and run away!
Enjoy them – this may be the sweetest age, Nu says things like “want some mama hug”.
Play dough, stickers, colouring in to keep them occupied for 10 minutes.
Outside – even checking the mail and watering the garden can seem exciting.
Park – even if you need to drive there, the park is a great and free way to burn off toddler energy.
Routine – my son is a routine boy and we have a loose but similar routine for each night, this helped when bedtime got foggy at the sleep regression.
Setting -first thing, before I get him up, I set up some of his toys seductively. This may buy 10 minutes of independent play! I also swap toys around regularly.
Rest when the toddler rests (if you’re home with them) – on the days I’m home I will do Yoga Nidra meditation before anything else when he naps.
Library, zoo, beach, local attractions – there are options for all energy ranges. Nu loves animals, so we’ve been to the zoo a few times.
Read – when you’re super exhausted and sore, lie or sit down (surrounded by cushions if need be) and read all of their books.
Movies – my guy won’t sit through anything longer than a minute, but if this diversion works for your kids then lie down immediately!
Play dates – another energetic creature can occupy yours! Mamas can chat. Win-win.
Pick your battles. Save your energy for the ones that count.
Consistency, set boundaries and always stick to them.
Don’t forget yourself, keep experimenting and keep practicing your wellness techniques.
The last few are the result of a thread on my Facebook page, some amazing fibro mamas gave me some advice:
17. Educational games on a tablet – lie down and rest while they sit with you and play. 18. Have a bath together – get some toys or bath paints and let them play while you enjoy the warmth on your muscles. 19. Create a toddler-proof room that you can let them free and self-direct their play, sit back and enjoy their gorgeousness (do you do that? I’ve been known to stare at my boy and just grin lol) 20. Don’t always tidy up. The toys will be back out! Sometimes let the laundry and dishes be. 21. Take time out. Go for a coffee alone. Or a massage. Or a walk. Do your yoga. Just go!
Mostly I think having a toddler is a bit like a newborn, in that you might need to just put your head down and push through, however there are definitely more tools in the arsenal to keep them occupied now.
Just because the things I can do must be smaller, simpler and quieter – it doesn’t mean the joy I experience must diminish.
On the contrary, I think it means that I experience my joy more potently.
I am thankful for more and more aware of my blessings.
I am joyful in the smaller, but by no means less important, things. A hug from my son, a smile from my husband, a helping hand from my brother, a word of kindness…the list goes on.
My hobbies had to become flexible and gentle, but I prioritise them. I always have time to read, write, colour or scrapbook a little.
I find joy in nature, animals, babies, pretty books, and accomplishments (however small).
Yes, my life must seem smaller to those with normal energy levels. But it is abundantly joy-full (despite the grief and pain and fatigue).
When I chose to focus on what I can do, rather than what I can’t, I am choosing joy. I hope that those in my life, and in yours, see this. I hope they can respect that it’s not always easy. Sometimes we will slip and think of all we wish to do, especially for the sake of those closest to us.
We may not have much choice about the pain and fatigue and symptoms that accompany these, but we can choose joy.
The best, biggest, most beautiful thing our closest people can do is to recognise, witness and support this.
It’s 2016! That happened quickly. There are more than a few things I’d like from this year, from the profound to the trivial. A sort of goals list. I’ve compiled them below and will come back to them throughout the year when I need a reminder of my intentions.
I’d like to challenge the perception that one must just “do their time” when they have kids, that sleep deprivation and self-denial is some sort of rite of passage.
I’d like to find a way of socialising that doesn’t involve my pain and fatigue levels spiking. We could have rocking lunch parties.
I’d like to be unashamed of my preferences and needs and wants. Especially when it’s contrary to those around me.
I’d like to stop feeling guilty for what I’m not doing for my family’s sake. Especially when I’m already suffering the consequences of overdoing it for their sake. I’m always going to feel bad when I hold them back, but it costs me so much more when I push myself too far than it does for them to compromise. Which leads to the next one:
I’d like to get a better balance of overdoing it and not pushing it (in the right direction) enough. Enacting my cost/benefit analyses better.
I’d like to create a toolbox of options to help me sleep well. This doesn’t include permanent medicine, if I can help it, I plan to be off amitriptyline by next week.
I’d like to lose a few kilograms and increase my exercise tolerance.
I’d like to go to Fiji. This is a few hours of flight time from here and a different climate, a toe in the water for further afield.
I’d like a regular date night with my husband. This has been an aim since we were married, but between his shift work, the baby and other commitments, it gets shoved aside too easily.
I’d like to get my B12 and iron levels to a better level.
I’d like to keep learning.
The list isn’t exhaustive, but enough to keep me moving in the right direction. Do others have a similar list? What sort of things are on it?
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.
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 onthis 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.
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.
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.
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
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.
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.
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.
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.
Freeman speaks of fighting the city builder within and nurturing the bench sitter instead. The bench sitter is the one who sits in the moment. Who sits with others in their moments, a witness, not a fixer. Who allows themselves to process their own moments.
Frequently I’ve had to combat my runaway desire for achievement, to reorient myself to what success means for me.
More recently my challenge is to accept things as they are. Accept my body as and where it is. Accept the day as it is. Not to stress over it.
The yoga instructor who helped me to create a sequence reminded me of it, accept your body where it is. (Not where it used to be).
I’ve been trying to take stock of my actions and reactions. Just notice.
And to increase my time to relax and release.
No Tiny Mission here, just an attitude adjustment and a commitment to take all practicable steps to reduce stress in my life. And to try to be more accepting.
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.