I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue).
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.
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.
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.