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Ways You & Your Loved One Can Support You With Children & Fibromyalgia

ways-you-and-your-loved-oneOrdinarily, when your children are small you expect a certain level of sleep deprivation and fatigue. When this is combined with the moderate chronic insomnia, chronic pain and chronic fatigue of Fibromyalgia, it’s tough.

In addition to good self care habits, support from your loved one will be invaluable.

For the first few weeks with Nu, Husband stayed up for the last few feeds so that I could get a jump start on sleep, those precious four or so hours really made a difference. We will do the same again with this baby.Unfortunately, the recognition of my insomnia, pain and fatigue seemed to level off after several months and life intervened – Husband is a shiftworker and I had to work.

So I had to put some habits in place to protect myself:

  • I created a slow, gentle morning routine so we can transition into the day with less pain.
  • I began meditating most days for 20-30 minutes, at first it was hard to carve out the time, but during pregnancy number two it became necessary to survival.
  • I have made hard choices, I said no to travelling to India while Nu was 1 year and 9 months old – travelling to India would be a big deal alone, but with a small child it would be stupidity, especially if no one understands the impact of the pain, fatigue and sleeplessness. One gastro bug and I’d be wiped. I hate to think the impact of a severe gastro bug on a child so small.
  • I ask for the occasional morning off, I can’t necessarily sleep in, but I can take a break from getting Nu ready before I get to sit with my heatpack and coffee.
  • I’m very careful about the number of late nights we have, given that I’m exhausted by 9pm every night, that Nu gets up at 6.30am and I can’t nap, there isn’t much wiggle room. The nights we do stay out late or have people over late, I am always more sore and tired the next day and if I’m particularly sore I sleep even worse.
  • I utilise my in-laws offers to have Nu some days.

Some things your loved one can do to support you include:

  • Take turns getting up to small children/babies at night and early in the morning.
  • Take turns cooking dinner.
  • Not complain about the state of the house, notice what was done (and imagine how hard that was with a toddler and/or baby and chronic pain!)
  • Remind you of your self-care necessities and give you space to enact them (a 30 minute lie down, a gentle walk, a hot bath etc.)
  • Understand when you say you can’t do something.
  • Be open to modifications if you ask. For example, when considering travelling, support to put some mechanisms in place to make it less difficult (otherwise you’ll be miserable and potentially worse for several months), things like ensuring a comfortable sleep environment, not sharing a room with loud toddlers, access to food that won’t upset the tummy, not too many late nights and not going to the opposite side of the world for the first time with two very small children.
  • Support you with the amount of hours you can work, balancing the illness and family responsibilities. Including encouragement to take the full year off after baby (if possible).
  • Notice how hard you try and thank you for all you do (it’s not easy).

Of course, it’s always good to try to focus on your relationship too. I try to tell Husband how thankful I am for him and how much I love him every day. We kiss every day. We try to have regular date times – even breakfast alone counts! I also do my best to accommodate the things he wants to do that go against my energy levels as often as possible.

The most important thing to remember is that the children aren’t very small forever. Before we know it they will be 3, then off to school and then (eek) university! Once their demands on our nighttime hours decrease things will be infinitely easier.

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Fibro Mama Pregnancy Diaries Weeks 34-35

fibro-mama-pregnancy-diaries-34-35Week 34 was characterised by fatigue, pain, menstrual like cramps, many Braxton Hicks contractions and growing excitement. My body was definitely gearing up for the last weeks and delivery.

Pacing became necessary. 30 minutes of activity in exchange for a rest with the heat pack.

My neck, which had coped so well previously, started to get quite stiff and sore. After a day of doing too much on the computer (finishing two assignments for my bookkeeping course and scheduling two blog posts) I experienced pain levels of 7-8/10 with a severe headache causing nausea. I am quite proud of my coping mechanisms – once Nu was in bed I had a hot shower, used the TENS machine on my shoulders, and heatpack on my neck. After coming off my one Panadiene per night in preparation for baby’s coming (and wanting to avoid any potential breathing issues from the codiene, very low risk) I allowed myself to have one. This all enabled me to get to sleep. I did wake every half an hour at first, but then managed a three hour block in the middle of the night, before lapsing back to frequent waking. For me, for this pregnancy, this was quite good. I did have to take it quite easy for next few days.

Baby seemed to burrow himself lower in week 34. When I sat down it was like he was sitting in my lap. There were occasional stabbing pains down low and more painful Braxton Hicks contractions. One night I woke with one that required breathing to get through. Each afternoon and evening seemed to bring a flurry of them, whether walking or resting (though I was mostly walking at this time and herding the 2.5 year old through the evening routine).

With my Whooping Cough vaccine down, week 35 ticked over and the birthing centre tour taken, all that needed to happen before I was ready for baby was for two weeks to elapse. I wasn’t sure when to hire the baby carseat (I didn’t want it to sit in the car, unused for four or five weeks). But, apart from that, I had everything organised.

I found some relief with a lavender massage oil on my low back and glutes (and my whole back whenever I could talk husband into a massage) before bed. On the nights my neck was making it hard to lie down I used a menthol massage cream. My heatpack, pelvic tilts, child’s pose, meditation, stretching, resting, good food and lots of water got me through the difficulties of late pregnancy.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24, 25-29, 30 and 31-33 here and look out for the rest soon!

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Fibro Mama Pregnancy Diaries Weeks 31-33

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 I’m in a period of waiting. Of feeding my family, cleaning my home, organising my stuff. Of resting and stretching and trying to be well despite sleeplessness and the pain of carrying my extra 9kgs.

Despite all the difficulties of pregnancy and Fibromyalgia, I’m trying to mindfully inhabit the now. To enjoy the moments of sitting on my couch and hearing the birds play in the trees. To enjoy snuggles with Nu. To embrace this period of slow.

12 minute pregnancy yoga clips helped me to stretch and open my cramped back and hips. Meditation helped me to rest and relax and make it through the afternoon. My physiotherapy appointments became a little more frequent to help support my neck and shoulders.

Baby’s movements became more painful as he stretched the limits of his shrinking (relative to his size) home. He seemed particularly busy at rest time, bedtime and once Nu went to bed (and I sat down).

I was lucky enough to try biofeedback therapy after being on the waiting list since my pain clinic appointment earlier in the year. I love having tools that I can call on to help myself (stretching, meditation, trigger point work etc.) And so this furthering of my meditation work has been useful.

At week 32 my immune system seemed to go on hiatus, I got another bad cold that I couldn’t shake and turned into an infection requiring antibiotics.

As my sleep worsened further, I found it harder and harder to get up in the morning. Much of the day was spent dragging. Somehow I perked a little in the afternoon and after dinner.

I found myself getting really riled up when people suggested that my third baby would be a girl or that I “had” to have a third so I might have a girl. I cannot do this again. My back would probably commit suicide. My emotional well-being couldn’t survive it. I have plans for my health, for my work, for my life that are on hold. I can’t try any new medicines (herbal or otherwise) until I finish trying to nurse the baby.

In order to support my rest I finally started watching Grey’s Anatomy season 12 (not actually a good idea as I cried in most episodes) and rereading Middlemarch (George Elliot). I find comfort in rereading my favourite classics, soon I’ll get out my worn copy of Pride and Prejudice and begin my annual (sometimes biannual if I need the perking up!) reread of that.

Something about seeing my baby again and learning that he was perfectly average in size at week 33 enabled me to relax into the last weeks. The fundal height measurements had been placing him in the 20th percentile which was much smaller than his big brother and I had worried I had done something to cause this. Knowing he was 2.1kg made me feel proud and even more excited that my baby was growing and coming soon! With escalating back, neck and shoulder pain it was a nice reminder of why I was doing it all.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24, 25-29 and 30 here and look out for the rest soon!
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Helping Yourself with Fibromyalgia, Some Tiny Steps

helping-yourself-with-fibromyalgiaOne of the silver linings of Fibromyalgia is that there’s always something we can do for ourselves, and for too many of us if we don’t help ourselves, there is no help.
I tried biofeedback therapy recently (electrodes on my shoulders monitored muscle tension while I tried different relaxation techniques). The thing I loved about it was the opportunity to take the tool I’d been working on for a few years now, meditation, a little further. It supported me to keep helping myself.

I also talked with the health psychologist I’ve been lucky enough to see a few times and have one more session with, about the importance of my helping myself. I wouldn’t be where I am without my own research, trial and error. There just hasn’t been any real help.

We don’t have to enact grand sweeping changes, unless there’s something glaringly obvious that needs to be done. Many tiny things lead to a whole lifestyle. So here are some tiny things we can do to help ourselves:

  • Stretch your body
  • Eat two more servings of vegetables
  • Take a moment to sit, or walk for some time in the sun
  • Make a goal to aim for
  • Do something nice for your other half/kid/parent/bff
  • Brainstorm about your income situation, can you reduce your hours, work from home, find a way to make extra money etc.
  • Cut one serving of packaged food/something you know you shouldn’t eat
  • Learn from other spoonies
  • Read a book about managing Fibromyalgia
  • Take ten deep, gentle breaths
  • Explore relaxation techniques such as meditation
  • Try yoga or Tai Chi
  • Go for a swim or a walk in the water
  • Sit quietly and listen to the birds
  • Research and try a supplement that may help Fibromyalgia (magnesium can be a good place to start)
  • Ask the Dr to check your iron levels
  • Try one sleep aid (chamomile tea, Valerian, other sleepy herbals, essential oils, a prepackaged one – please check with your Dr that these won’t impact anything you’re currently on)
  • Try acupuncture
  • Give pacing a go, alternate rest with activity
  • Find a safe person to chat with, Fibromyalgia is a tough illness
  • Let yourself be a safe person for someone else to talk to
  • Try a new doctor (if you feel yours isn’t helping you move forward)
  • Try a naturopathic doctor
  • Learn self trigger point massage
  • Buy a new pillow if yours isn’t ideal
  • Write in a journal, it doesn’t have to be exclusively about Fibromyalgia but it can help to write through it and maybe brainstorm things you can try
  • Cut out that toxic person/situation

This list is obviously only the tip of the iceberg, but if you’re feeling like you just want to try something there may be a tiny step for you. Do you have any important tiny steps that you do?

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Fibro Mama Pregnancy Diaries Week 30

I can’t believe my baby is coming sometime in the next 7-10 weeks! fibro-mama-pregnancy-week-30

This pregnancy has been such a different experience to the first one, for which I am so grateful. It’s challenging and I’m pretty sore and tired (and am sure there’s more to come) but I’m trying to savour the good bits. To remember the feeling of my tiny baby moving within me, to know I’m growing a human life. It’s amazing.

A lot of my to-do list has been ticked off for baby. I’m not prepared to go out for long shopping trips anymore. Most of what’s left will be to prepare what I can in advance to make life easier.

I have been daydreaming/visualising about how it will be better than last time, without a prolonged labour experience, without being left without my husband in the first days, without my son being sick and needing to be back in hospital after three weeks…The difference this could make. I also have a list of the things I can try while nursing and after that in order to support my health – including rhodiola rosea for energy and adrenal support.

Nursing has been occupying my thoughts. With Nu I really struggled, he was sick and a lot of problems arose with that, it also hurt (my nipples were ruined and my actual breasts ached so badly – I cried when I had to go and express). I hated it. It did not help my experience of the first six weeks of motherhood.

This time I’m hoping that a better start, the baby being well and a different baby will make a difference. I’m hoping that baby will latch well, drink well and not be resolute about going to sleep after one minute! I’m also hoping that the entirely different situation will give me some leeway in the pain and energy levels. I have my double expressing machine, nipple cover, cream and ice packs ready. I am going utilise the six weeks my husband is home to really make a luxury out of feeding – go and lie down comfortably with my heat pack and potentially a guided meditation to try to make it a rest at the same time.

My lower back/hips have continued to feel rather sore, almost like they’re being sawn off. I have found that not taking a walk (in addition to my 8000 incidental steps per day), doing pelvic tilts and yoga stretches on all fours can make a difference. As does lying on my side but leaning slightly back on my maternity pillow when in bed. Heat pack, warm showers and arnica rub help.

Meditation continues to be a life raft. 45 minute body scans with my heatpack about lunch time makes a huge difference to my pain and energy levels. The days I can’t lie down are quite difficult.

From the day that 30 weeks ticked over, all of a sudden, I felt blinded by exhaustion. By the evening I was in a lot of pain and so tired I felt ill. I had to crawl into bed as soon as Nu was in bed to lie down. Lying down helped, but being in bed for so long made my low back and hips very sore by the early hours of the morning. Being proactive (and knowing at 27 weeks my iron levels had been at the bottom of the normal range) I scheduled an iron injection for a boost. This wasn’t without troubles, it is painful to get the injection and for the day after, and it also leaves a bit of a stain (I still had a stain from where I got it last December). But it actually made all the difference in the world.

I am simultaneously counting down, taking it one day at a time and enjoying my time with Nu.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24, 25-29 here and look out for the rest soon!

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Fibro Mama Pregnancy Diaries Weeks 25-29

fibro-mama-pregnancy-diaries-weeks-25-29Following the onset in week 22 or so, my low back and hip pain became worse as these weeks wore on. Sleeping was difficult, I had to start the night with a hot water bottle and as the night progressed it got harder to ignore. By 5am I wriggled around trying to get comfortable more than I slept. The morning was spent trying to mobilize and push through. My midday lie down became challenging for relaxing enough through the pain to rest and as the afternoon and evening wore on the pain became worse.

I tried third trimester yoga videos on YouTube (this one’s a goodie), used my heat pack religiously, took Panadol and Panadiene as sparingly as possible and attempted to pace appropriately. It felt like the business end of pregnancy came far too early!

I tried to really focus on eating nourishing food such as Bircher muesli, soups and salads. I also took a pregnancy multivitamin and probiotics to support my body.

The fatigue was reasonable (but difficult) given the battle that sleep had become. My body was heavily exhausted but I woke every one or two hours, sometimes more. Getting up was hard, but toddlers wake when they wake and you can’t ignore those loud “mama, mama” calls!

My tiny passenger seemed to make use of his growing space, simultaneously kicking and punching high and low. He always let me know he was there, growing nicely, getting ready to come.

The short Gestational Diabetes test was not as awful with better planning this time. I ate a proper breakfast and took reading materials. Though the sugary drink made me feel dehydrated all afternoon!

Unfortunately the results were not good, so I had to do the glucose tolerance test…I had to fast for 10 hours and go to the lab at 8am (with no breakfast or coffee!), have a blood test, drink the same sugar drink, sit for two hours and have another blood test. I was quite unwell with it and so had to lie on the bed in fetal position to stop from vomiting, but I made it! I was pretty wiped afterwards and so hard a very quiet afternoon.

I was super pleased to find the results were “perfectly normal”!

At 28 weeks I crossed into the third trimester. With midday naps, pacing, good food, good supplements and regular physio I felt like I was coping quite well despite the battle that the nights brought (including dead arms every hour). The low back and hips were not so bad when I didn’t overdo it, the upper back was not so forgiving and I did get some regular spasming which wasn’t fun. Lying down with the heat pack, taking Panadiene and meditation helped.

By week 29 I was focused on organising the last of baby’s things so that I could rest more later, reading up on labour and enjoying my last weeks with Nu as an only child. This child brings me such joy and I really revel in the fact that he’s super rough and tumble but always has a kiss and a cuddle for his mama.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24 here and look out for the rest soon!

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Silver Linings and Space

silver-linings-and-spaceIf we could make the space, perhaps things would not be so difficult. If we could slow down enough, the two year old might not seem so challenging, the assignment not so daunting, the marathon training not so epic. This is completely counter to the pervading culture of rush and busy-ness. Of doing, not being.

But I’m trying to give my body some space to do this miraculous thing it’s doing. It’s growing a brand new baby. At 25 weeks I began dramatically reducing work hours as my back could no longer tolerate sitting at a computer, I was too fatigued and sore to take care of my family. With a husband who works shift work (on very long, changing shifts, day or night), that’s not on. I put mechanisms in place to save energy where it could be saved and expend it where necessary.

Next year, I’ll be trying to create the space to be a mama with two small children. I’ll lay the foundations for my new baby’s life while recovering from pregnancy and coping with even worse sleep deprivation.

After that, I’ll be trying to wedge jigsaw pieces together in hopes that I can find the right pieces of Work, Family and Wellbeing (for me) that fit together with all the others.

As a mama with Fibromyalgia I already know that my concept of space needs to be a bit bigger than those without this illness. My Work puzzle piece may not look the same once I have two children, until they are at school. My Family piece will grow. My Wellbeing piece cannot shrink if I expect the whole puzzle to work.

Fibromyalgia has made creating space a necessity.

I cannot function without eight hours of sleep, I need rest and meditation, healthy eating is important and my body pays much sooner if I am not fueling it right, it needs gentle exercise and regular physio trips, some medicine and supplements.

This is the silver lining of Fibromyalgia, I cannot become one of those people who survive on limited sleep, food, no exercise or time to themselves. My body simply won’t allow it. If I want to look after my kids, I have to look after me first. It’s not a new concept, and everyone should be adhering to it, but I have the inability to ignore it. For this, I am grateful.