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.
Amitriptyline is a tricyclic antidepressant that, when taken at a lower dose, can help with the sleep disorder and the pain associated with Fibromyalgia. I had been on it for nearly 10 years, since before I was diagnosed.
Struggling with restless nights (losing 50-70 minutes a night to awake/restless times), I asked my doctor what else may help and he suggested I increase my dosage. But I didn’t want to do this.
I also wanted to be sure it worked, I had a fear of being stuck on it forever, without really knowing it worked. It was also a scary proposition to go off it and not sleep.
I sucked up the fear and started my experiment in November 2015 and tapered off by 5mg at a time. In the reductions from 50mg down to 30mg my sleep actually improved. But the fatigue increased, I became very fatigued and struggled to stay awake during the day.
By the time I got to 10mg at the beginning of January 2016, I was sore, sensitive and (more) exhausted. My sleep was light and it was difficult to get to sleep and back to sleep when woken.
On my first night completely off it, it took a little while to get to sleep, I slept deeply (I think, I didn’t take my Fitbit on holiday) from 12-6.30am and then my son got up. I was exhausted and sore.
As I continued it took longer and longer to get to sleep, except for the few nights when I was so miserable and exhausted I fell asleep fast and slept like the dead.
I tried 5-HTP and SleepDrops and lavender massage oil. I tried keeping the same bedtime routine, hot baths and no caffeine after lunch. I tried meditation, yoga and any pillow set up possible.
I was experiencing more wide spread pain, near constant headaches and worsening fatigue. I wasn’t coping.
I went back onto 25mg of amitriptyline and had a big sleep on the first night. And a normal sleep, albeit with a six hour block on the second night.
Within a week I was back to getting to sleep well, sleeping restlessly (mostly due to pain), but getting (a broken) eight hours. This doesn’t seem like a win, but it’s the same situation as before with half the dose of amitriptyline, which is a win. The headaches have mostly receded and the generalised, all over pain has quietened. The fatigue is more manageable.
I can only conclude that amitriptyline is working for me at the moment and I am happy enough with that. It has a valid place as the base of my wellness plan.
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 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.
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!).
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.
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.
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.
A well designed research study tries to ensure results are attributable to the experiment and not something else.
But with fibro/CFS things change daily. There are a tapestry full of threads that make up my conditions and my context. I’m having a flare up, despite doing everything in my power to be well!
I’ve been taking D-Ribose for just over three weeks but I can’t tell you if it’s making me feel better.
My boy has finally started sleeping between 10pm and 6.30am for the most part. So that must help.
I’ve started meditating for 15 minutes a day, so that must help.
I’m also stressing about work and finding a job that fits with our schedule and doesn’t make me too sore.
My baby is getting more and more active each day!
I’m finding that not only is pain and fatigue subjective to each person, but it can be within a person. I know that I’m far better than when I was working full time or was pregnant. But I can’t tell you how I feel relative to three weeks ago.
I can’t even tell you if that’s my fogged memory or an inability to distinguish between the pain and fatigue I was experiencing then and now!
So now I don’t know whether or not to continue taking D-Ribose. Or whether it’s time to try something else. And if I do, unless there is a magical result, I may not know!
I just keep wishing for that one thing that makes a real difference. That I’ll KNOW works.