Fibro Mama Pregnancy Diaries: The Delivery

Fibro Mama Pregnancy Diaries Delivery
My birth story wasn’t exactly what I wanted but it was better than the first one.Fibro Mama Pregnancy Diaries Delivery
32 hours of extreme back pain and painful contractions produced a beautiful 3.1 kg baby.
I couldn’t get to 4 centimetres dilation at home like you’re supposed to. I managed to wait until 3 centimetres at which point I needed help. We found out in the end the reason for the pain and lack of dilation that baby had the cord wrapped around him three times, probably stopping him from engaging.
It took a lot of intervention to get him down and out, but I managed to do it without a cesarean.
While it was a long, hard, painful labour, I can clearly recall the care of the many professionals I encountered, my midwife being the lead. I felt looked after and that my baby was being carefully monitored. The after care, during which I haemorrhaged, was also spectacular. This is what I remember the most from my experience. And it was dramatically different from my first labour, for this I’m grateful.
We spent a night in hospital, where I had fluids and an iron transfusion, and a night at a maternity centre. My pain levels in my low back and glutes were through the roof until we got home and I could move freely from comfortable bed to comfortable chair (and take pain killers less rigidly, but still according to instructions). It wasn’t until I saw the physiotherapist at four weeks that we realised I had symphisis pubis disorder which meant my pelvis spread too far, presumably due to the prolonged back labour. This caused severe pain at first and gradually reduced to mild with reduced range of movement and lots of pelvic tilts.
As it is with childbirth, so it is with Fibromyalgia, we are all different and we can’t look for “normal” because there is no normal. There are patterns, but there’s no normal.
We must learn to listen to our body and trust that little voice that guides us. It can take some time to hear it, as there are plenty of louder voices itching to tell us what to do. But, if we pay attention, we will know what to do.
I knew I couldn’t cope any longer and that the pain was abnormal for so early in the labour. I will always be thankful that I pushed to go in and that the midwife listened.
Likewise, I am so thankful that I learned to hear my little voice and to regard myself as the expert with my experience of Fibromyalgia. And as the result of listening to this voice in labour is a healthy baby, the outcome of listening with Fibromyalgia is much better health.
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What It’s Really Like to Live With Fibromyalgia

what it's really like to live with fibromyalgia

I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue).what it's really like to live with fibromyalgia

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 traction 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 never-ending cycle of Fibromyalgia.

Here’s the thing – I manage this illness well.

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.

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Giant Meditation Post

I have been exploring the benefits of meditation for those with chronic illnesses recently. I am curious because Yoga Nidra, a guided meditation, makes a real difference to my day. After a 20 minute session my pain levels can drop to as low as 4/10 and decrease my fatigue levels to a similar place. The effects help me get through the busy evening period with my toddler.
Blue one way traffic sign

It’s not easy to carve out 20 uninterrupted minutes between work and the toddler. But when I see a gap, I snatch it up.

A theory about Fibromyalgia, is that the sympathetic nervous system (fight or flight response) may be stuck in overdrive. Meditation promotes a calming of this system, allowing the parasympathetic nervous system to activate.

The benefits of meditation are probably due to 20 minutes of:

  • Lying down
  • Using my heatpack on my neck
  • A break from noise
  • Time alone
  • Complete focus on my body, accepting it as it is
  • Not struggling to nap, which I can’t, so using the time calmly and effectively
  • The body’s response to complete relaxation, allowing the sympathetic nervous system to slow down

It is a tool for well being that I keep close, it is something that transcends simple pain/fatigue relief and gives me time to focus on myself as a whole – my san culpa (mantra/goal of practice) is, “I am well; physically, spiritually and emotionally.”

Elaine R. Ferguson, in her book on holistic healing agrees: “Practicing this [mindfulness] meditation affects your mind, brain, body and behavior in ways that promote whole-person health.” P83 Super Healing: Engaging our Mind, Body and Spirit to Create Optimal Health and Well-Being.

And it’s vital that we don’t neglect our spiritual and emotional components of self in the quest for relief from physical issues. I feel there’s a close tie between my emotions and my pain/fatigue levels – fear or sadness have an effect on my sympathetic nervous system, which affects the body physically. So I am researching both body and mind effects on Fibromyalgia.

Meditation and Me

It took me a while to appreciate meditation, years, in fact, for me to consider giving up precious reading time for it.

Suddenly, in 2014, I read a book about mindfulness meditation, found a YouTube video of a Yoga Nidra session that I particularly liked (avoiding the spiritual/religious aspects of it) and then I was away running.

I have meditations, body scans and Yoga Nidra of varying lengths that I switch between as I like. I also use the body scan technique most nights to relax into sleep. The focus on the breath is like second nature to fall into.

Funnily enough, when I am more fatigued, I need the short and sweet practices – to avoid falling asleep and feeling groggy and gross when I wake. When I have slightly more energy (and time), I opt for longer ones. My usual best length is 20 minutes.

20 minutes seems to be a good number for me, I respond well to 20 minutes of yoga or Pilates, 20 minutes of walking and 20 minutes of meditation.

Meditation provides true rest for body and mind and I think that is what I so desperately need in my day.

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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.

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.

Bonus Change – Meditation (2017)

Since I have learnt to meditate, therefore getting some real rest during the day and giving me the tools to cope with middle of the night wakings, life has been so much nicer. I am a big fan of meditation, find my giant post on it here for more!

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.

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

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