Posted on Leave a comment

Some Fun with the A to Z Survey

I found this on Counting My Spoons, who in turn found it on another blog; this survey seems to have done the rounds a fair way around the Internet world. So, just for fun, I have filled it in. 
 
A to Z Survey

A – Age: 29
B – Biggest Fear: Hopelessness and that my symptoms would worsen to the point that I couldn’t even attempt a “normal” life.
C – Current Time: 11.30am
D – Drink You Had Last: A coffee using my Nespresso machine with Chai spices thrown in.
E – Easiest Person To Talk To: My husband and the middle of my brothers.
F – Favorite Song: If That’s What it Takes by Celine Dion.
G – Grossest Memory: Fresh in my mind! My son and I are down with a bad cold at the moment and he keeps coughing until he gags. A few nights ago he actually vomited, over me, him, his cot and the floor. I took off his clothes, my dressing gown and then he puked again. Off went the last of the clothes and we had to clean up orange/red (he’d had pasta and sauce for dinner) vomit with a very upset baby.
H – Hometown: Born in Hamilton, New Zealand. We moved down to Hastings and then to Wellington for 20 years and then up to Auckland. I consider Wellington my hometown, despite never wanting to live there again!
I – In Love With: My baby boy. My husband. My dog.

J – Jealous Of: People who can go to sleep and wake up refreshed.
K – Kindest Person You Know: My husband.
L – Longest Relationship: My husband and I have been together for two years, this is the only relationship that counts, it’s forever 🙂
M – Middle Name: Nicole.
N – Number of Siblings: Four!
O – One Wish: To be healed of the pain and fatigue.
P – Person You Spoke To On The Phone Last: My mum.
Q – Question You’re Always Asked: “You don’t work full time?” Mostly by people who have no idea that chronic pain and fatigue make living tough enough, but to do it and be a good mama is even harder, then to add more than 20 hours of work – no thanks!
R – Reason To Smile: My baby. Even thinking about him makes me grin.
S – Song You Last Sang: “Here I am, Lord” the last of the four songs I always sing to my son when he is getting ready to go to sleep.
T – Time You Woke Up: 7.30am
U – Underwear Color: Black.
V – Vacation Destination: Doable and planned: Tauranga, New Zealand (my nana is there). Potentially doable but on the long-term list: Europe. Most dreamed of: Somewhere warm with a spa!
W – Worst Habit: Pushing on when I know my energy levels are gone and I’ll pay for it later.
X – X-Rays You’ve Had: Last, my back. Previously, pretty much everywhere, mostly my neck and back though.
Y – Your Favorite Food: Burgers. Mmm burger…
Z – Zodiac Sign: Libra, but I’m not really into that stuff.

Posted on Leave a comment

Spirited Toddler

My boy is 15 months old! I’m shocked at his growth. It seems like he is mastering new skills daily. He will babble to himself while turning the pages of his favourite books. He gets his shoes when we ask for them. His eating has finally gotten better, he is eating a lot more and more widely.

For better or for worse, there have been more than a few alarming signs that he’s turned into a high-spirited toddler:

*The plank when we try to put him into the pushchair or carseat
*The tantrum when he doesn’t get something he wants
*Only one nap
*Feeding time resembles the zoo more than a civilised dinner table – there is food on the floor, wall, table and down my sleeve
*He has more energy than me
*Toys hold appeal for about 30 seconds
*He gets bored when we go for a walk with the pushchair
*He is super excited by couch cushions on the floor

Here are some things I’ve found to help cope with a (super) busy toddler:

*Encourage physical activity – let them walk outside, take them to a park or find a cafe with a play area suitable for younger toddlers. My guy loves it when I put the couch cushions on the floor, he will throw himself on them and roll around happily.
*Take multiple things to keep hands busy when you have to go out (walks, lunches, supermarket) from food to toys.
*Preempt bad behaviour -notice what sets them off and avoid it, plan ahead and don’t give in to tantrums, even in public (we had a situation in the chemist but I held my ground and let people look while I strapped him in and distracted him).
*Have a safe zone, our lounge is almost “no free”, he has plenty of toys and there is little damage he can do while I go to the bathroom (if he doesn’t come too!) etc.
*Sensory play can be helpful. Water, bubbles, squishy balls, anything to utilise the senses.
*Take rest for yourself. It’s tempting (read: I always do) to squish the chores or things you need to get done into that blessed one hour or so of nap, but you’ll feel nicer if you rest. I also like to spend some time on the floor, letting him play around, while I read – mental time out.

Have you got anything to add to this list?

Posted on Leave a comment

Wading Through the Options

Everyday we are faced with multiple choices. For people with limited energy (fibromyalgia, chronic fatigue syndrome and other fatigue inducing illnesses), these can take their toll.

I am faced with the best choice for work going forward. Balancing many factors, with my baby and my wellness being top, isn’t easy.

I live my life doing innumerable cost to benefit calculations. Is my energy worth that outcome? Sometimes it’s pure forecast, can I cope with that based on what I know?

They don’t need to be complex. Just a simple check in with yourself.

Do I think this is worth my energy? Is it making me feel well or less well?

Work has taken on a new definition since I went back as a mama. It’s the place I go when I’m not sick and I’ve juggled my baby’s sick care arrangements.

In two and a half months we have both had a bad cold, he’s had a gastro bug and we’ve both been hit badly by a major virus. I’ve had three days off work, my husband’s had the same and my mother and father in law have done a day each.

After much deliberation, I’ve decided to pursue some further study (by correspondence) and try contracting again. This way I have complete flexibility over my working hours while my little guy is young and I keep gently building my career.

There’s many other times when a check in or cost/benefit analysis can be beneficial.

For socialising it can be helpful to factor in social benefits (distraction and connection) to yourself, benefits to your partner (they get to have some fun) and your energy needs. Perhaps there could be a compromise.

It can be hard to ensure you weigh the options properly (scared of pain, seeing past the exhaustion, negative emotions). This will require some soul searching and some experimenting. But this approach can be a part of your patchwork quilt to living well.

I want to be wise in my choices (so as not to cause extra pain and fatigue) but I don’t want to miss out on life. Particularly when it comes to my son. So my weighting is usually bias in his direction, but that’s my conscious choice.

Work will always come second to him. And both will always be factored in my cost/benefit analysis.

Posted on Leave a comment

First Month

My first month in the new job is complete.

I’m exhausted.

Happy Mother’s Day to me, I’m alone with the baby/toddler in the lounge while husband sleeps after nightshift.

His nightshift is every second week at the moment. So every second week I am woken by my husband when he comes home (somewhere between 4-6am) and after finally getting my boy to sleep 7ish to 6ish, he has reverted to waking between 4-530 for a top up, then sleeping til 650.

On the weeks my husband does nightshift I have to keep our very active little guy quiet before we rush off to work/care. And he works Friday and Saturday nights so there is no respite on the weekend. On the days that I don’t work, my boy and I have to go and do something out of the house to keep us busy, which can be hard when I’m so exhausted that I can’t even talk coherently.

The weekend is a continuum of the weekdays. Even when I worked 3/4 time with no baby I had to completely rest on the weekend and sleep a whole heap more!

I wouldn’t say I’ve coped so much as survived for a lot of the days.

On a positive note, I’ve adored my Wednesdays with my little guy. 

Work has been mostly OK. I like using my brain in that way.

But I want to refuse the notion that I must now live with the physical symptoms that have been exacerbated or ones that have resurged. My neck, while mostly tolerable and hovering around 4-6/10 most days, has begun to keep me awake in the night when I get woken. It’s stiffer more than sore, making lying in bed uncomfortable. My shoulders are so tight I can’t lie on my side. My upper legs and glutes have become super tight again and ache, due to sitting for so long at the computer.

So long = 4.5 hours a day.

So I ought to be grateful I can work these hours. That it doesn’t have to be all or nothing.

I have begun to cling to my magic number of eight hours sleep. Treating myself gently on the days I have less (far too often) as I am usually miserable. Being really grateful on the days I get it.

Before the three month trial is up I have to decide if we can make this work long term.

Meanwhile, my husband will have another shift change – to one with no discernable pattern, so he won’t be able to help with our little guy’s care at all. Once we put him in with his carer for every hour I work (plus travel and lunch break) the cost:benefit ratio plummets. My energy for the money I get (after taxes and childcare), it’s a heavy balance.

I am still trying to keep myself on the journey to wellness. We are purchasing a smoothie maker soon so that I can supercharge my afternoon tea and increase my fruit and vegetable intake. I have managed a 20 minute walk most days. I’m trying super hard to get as much sleep as I can.

It’s just slower at the moment.

Posted on Leave a comment

How I Decided to Have a Second Pregnancy with Fibromyalgia

Having a baby is a tremendous (and rewarding) undertaking, particularly when you have chronic pain and fatigue. My first pregnancy with fibromyalgia was extremely difficult. It was so hard that I really didn’t think I would have a second (let alone a third baby!)
This post was written prior to having my second baby and I have since had a third, I have edited it a little but it retains much of it’s original text.
how i decided to have a second baby: pregnancy with fibromyalgia

There are plenty of things I want to do before I consider trying again:

  • I want to conduct some research and find some professionals who know about pregnancy with fibromyalgia.
  • I want to go to a new doctor and ask for a proper diagnosis process, just to be sure.
  • I’d like to write about all this here on the blog and potentially put it into an e book to get the information out there.

I totally managed to write about it all on the blog and put it into an eBook! Pregnancy and Fibromyalgia book is now available! Affiliate notice: This is an affiliate link and I will make a small commission at no extra cost to you if you make a purchase using my link. All of my tips for coping in the first, second and third trimester, along with delivery and the early weeks are in there!


IF I decide to have another baby I will be making my physical decisions.

I need to be free to make the decision to have a second baby myself. Pregnancy, labour and sleepless nights are physically harder for someone with fibromyalgia and chronic fatigue. So I need to be trusted to make the decisions that will help me cope.

Why should I just cope with life? Can’t I enjoy my babies? I don’t understand the rationale of “getting it over and done with” and I don’t hold with it for my situation. Two (plus) super hard years are still super hard years, whether I give myself enough time to recover or not!

There are a few guidelines (pre research) I will follow if I go ahead with another pregnancy with fibromyalgia:

Pregnancy:

  • My boy will be at an age where he is more self-sufficient, preferably in preschool (at least three years old) so that he will get enough attention and stimulation and I would get time alone with the baby. I can’t imagine anything worse than trying to deal with another baby while my boy is still a baby himself. He has been a pretty challenging baby!
  • Feel somewhat physically prepared, I would have the ability to plan and get my body into a place where I am more prepared than last time. For example, I would build my iron levels and keep an eye on them so that I don’t run out of stores at week 28.
  • Keep up a core few resistance based exercises throughout the pregnancy to keep my strength up.
  • Stop working in the third trimester, if I am struggling like I was last time, and I would need at least six months off afterwards.
  • Attempt to find a team, or at least a few health professionals who understand both fibromyalgia and pregnancy. After a pregnancy with only a physio (who was pregnant herself and unable to treat me in the last trimester) who understood, I need people to support me.
  • Utilise acupuncture for morning sickness in the first trimester and general wellness during pregnancy.
  • Get more done in the second trimester, so that the third trimester could be more restful and I could rest in the fact that we are prepared.
  • Do my absolute best to avoid stress throughout the pregnancy.
  • Take the belly support belt if I needed it, I avoided it last time at the advice of my physio, but I think it would have helped more than it would have hindered. The pain was too bad to endure again.
  • Use an obstetrician, barring complications, my husband would be my key coach. My husband would know and (better) advocate for me. I would try to avoid an epidural.

After:

  • I would plan a babymoon, I would try to make the first month after labour a time for me and baby to just be, together.
  • This follows from the above guide, but I would treat the first three months like the “fourth trimester” as I have seen written about. I’d want the baby to be close to me, I’d utilise a sling and, especially in the first days, have baby mainly held by my husband and myself.
  • Plan and enforce the visitor rules and how to schedule family support. For example, I would have the immediate family there for only short times in the first few weeks. I wouldn’t invite other visitors for a few weeks.
  • Definitely make use of the organic cotton swaddle blankets again (our favourite brand was Aden and Anais).
  • I would purchase a portacot with the built in bassinet– we made do with a carry cot last time, but I have often wished we had invested in the portacot.
  • Purchase a proper pushchair, I would invest in this key piece of baby ware, a swanky, comfortable, convertible infant seat, carry cot, baby seat combo. We actually ended up purchasing a City Mini Jogger when my first was 12 months old and used it through our second and third babies, it is my favourite and I recommend it to everyone! See my post Essential Baby Items.
  • My husband would be just as involved as the first time. He would stay with us from the beginning (unlike the first time, when I was abandoned from 9pm – 9am) due to the rules of the birthing center. He would take turns with me, he would feed baby (hence the bottle use) and he would bond with baby, as he did with our boy. Their relationship is beautiful and it creates a sense of space for me. It’s parenthood, it takes two, especially when one has chronic pain and fatigue.
  • Be more gentle with myself and advocate more strongly for myself, particularly in the babymoon phase.
  • Document and enjoy it as much as the first. I don’t want a marked decrease in pictures and scrapbooks because I have double the children taking up my time.
This list is long but not exhaustive, I just thought that I could share it, in case my hard gained knowledge helped another in their pregnancy and/or planning. Also, because this has become a place in which to express my views and not deal with people, who don’t understand the fibromyalgia/chronic fatigue element at all, commenting.

So what did I end up doing?

We ended up having our second baby at the end of 2016 and our third at the end of 2018. I had a much better experience both times for all of my knowledge and experience. So please do search the category bar for “pregnancy” posts. I have shared my whole experience with you. You can find it succinctly in my book too.

Posted on Leave a comment

Six Months of Awesomeness

I’ve had my precious boy for six months.

So I think it’s time to take a minute and recognise how awesome I am for getting here.

I survived pregnancy with symptoms wildly exacerbated by the fibro. I also got married and found out I was severely iron deficient at week 28. The entire third trimester in which my back hurt so much that I couldn’t sit down for long periods of time.

I endured the labour and delivery, which included 20 hours of the worst back pain I’ve ever known. And the physical recovery that spanned further months afterward.

At week three, when my boy went back into hospital with an unknown problem that ended up requiring a minor operation, I coped. The nights that I stayed with him, not sleeping because he was vomiting so forcefully and so regularly. The nights that I stayed at home and expressed every three hours so that I would have food for him when he was ready.

Everything that is part of the new mama experience, not sleeping and not resting enough.

I’ve done it. I’ve conquered it. For many of those days I had a sore neck, headaches, nausea, aching legs and back and shoulders. For more still I was tired right down to my bones. For some I had an upset stomach,  if my neck was super bad I’d also be dizzy.

I am so unbelievably proud of myself.

I’ve also learnt so many things and developed as a person.

If you’re in that battle that is a new baby or pregnancy, know that you can do it. One day at a time, one step at a time. You will get through it. Remember to look after yourself, you need your strength to look after your beautiful baby.

Mama’s who have done the baby journey with additional issues are AMAZING!

X

Posted on Leave a comment

A Letter to Midwives

I remember it vividly. Sitting in a low, grey chair, behind a curtain with a double breast pump at work, tears streaming down my face. I started crying that morning and couldn’t stop.

It was three days after a hard pregnancy and delivery, and I’d had very little sleep.

The midwife said my fibromyalgia must be pretty bad.

I didn’t say anything at the time, but I can’t stop thinking about it.

I want to tell her that it’s not.

I usually cope very well. But she saw me on one of the worst days of my life. After a pregnancy of increasing pain and decreasing sleep. After a hard labour. After three days of very little sleep, with a baby who couldn’t get enough food from me. Hideous pain in my breasts and in my stitches. To top it off my husband wasn’t allowed to stay. So I was alone with this baby from 9pm to 9am.

The midwives on the nightshift didn’t help very much. They latched baby on and left. They didn’t see the pain caused by his latch becoming shallower as he drank. If I took him off to try to re latch, he’d refuse it.

On that last day the best things happened. And only because I couldn’t stop crying.

They taught me to express milk for my baby to drink via the bottle. This meant I was able to see that my baby had enough food, that I could bother my very sore breasts only three-hourly and that I had an element of control.

This enabled me to give my baby breastmilk for eight weeks, instead of just that first week.

We need options. I was committed to feeding my baby, but I needed the option to help me do that. I am so thankful for this, so thankful that they were not judgemental. Cos damn, breastfeeding hurt me!

They also let my husband stay on the final night.

He is why I managed. We took turns feeding, so I got some sleep. I also had a person to experience it all with me. Alone, in pain, with a screaming baby is not a key for coping.

What I want to tell all midwives is that my fibromyalgia isn’t so bad. But there are people who have it worse.

Please educate yourselves so that you can help. Even if you know enough to know that the husband or a support person needs to stay to help.

A person with fibromyalgia is likely to have a higher perception of the pain.
They are more likely to have had a very painful pregnancy.
They are more prone to emotional changes – when you’re in a lot of pain and so tired you can’t think straight, you can’t keep your emotions on an even keel.

So please know this. Please be aware. We need a little extra help.

Posted on Leave a comment

Simple Things That Help Me Exercise

When your muscles are clenched, with some muscles screaming louder than others and you’re so tired that bedtime is all you can think about, exercise isn’t your top priority. But, ironically, light exercise can help with fatigue. It also helps to strengthen the muscles that so desperately ache.
Here are the simple things that help me exercise:

  • My dog – he needs a walk most days, knowing that’s his favourite time of day encourages me to go.
  • Knowledge of my body – if I don’t keep it up I slip backward in my progress. In a surprisingly short amount of time, how far I can walk without too much pain in my legs afterward, can decrease.
  • Willpower – anything I achieve with fibro/CFS takes a lot of willpower. It’d be easier to let myself lie on the couch more often than not, but if I (gently) push myself, while respecting my limits, it’s worth it. 
  • Enjoyment – I enjoy the type of exercise I do, mostly walking and Pilates or yoga, so I want to do it.
  • My baby – my little buddy likes walking as much as I do. He enjoys watching the new sights and then being lulled to sleep by the motion. Sometimes it is the longest break I get from having to hold him – which helps my back!

I have to remind myself regularly, even if the baby is fussy when we get home, to stretch. Stretching is very important as I think that my muscles are super prone to clenching and getting tight from use. 

Posted on Leave a comment

A Real Account of a Flare Up

In an effort to be real, and to share the real depths of what I’m coping with to someone, I thought I’d share an account of my current “flare up” – a period where my symptoms increase temporarily.

My current context is making it a little harder to cope. I’ve lost some of my oomph.

For about a year I’ve been dealing with the (sometimes) extreme side effects of being pregnant, giving birth and looking after a tiny baby, while dealing with fibromyalgia and chronic fatigue. This has chipped away at my reserves and I’m now emotionally and physically near bottom.

A few weeks ago I got a bug that required antibiotics to kick. Then my baby got it. Combine the sleep deprivation that comes with a sick baby and the increase in fatigue after illness, and you also score and increase in pain symptoms.

My neck has been so bad that two nights ago, when I got up to my baby to feed at 2am, the pain caused me to throw up.

Since then I’ve managed to keep going (barely) with the help of ibuprofen,  paracetamol and my wheat pack.

My stomach has also decided to join in. I’m hungry, but too tired to eat. It’s also hard to eat when the baby demands to be held right when you’ve managed to heat up the food. So I’ve been eating soup, sometimes cold.

My shoulders and back have been more tight, causing the occasional stabbing pain. The type that causes you to stand still for a few moments to ensure you won’t be beset by a raft of stabbing pains causing a day in bed and very strong pain killers.

The silver lining is that I know it will end. I know I’ll cope. I also know I’m doing well, considering this is new to cope with the pain and fatigue with a baby – I can’t go to bed and rest til it’s over!

It’s hard. And there is so much more I haven’t shared. But it’ll end. And I’ll be OK.

Posted on Leave a comment

Letter To My Husband

I have made no secret of the fact that I wouldn’t have survived the delivery of our son or the last 10 weeks without you. I have told anyone who will listen.

You were the one who got me through the most intense pain of my life – you were with me through 19 hours of the most torturous back pain I had ever experienced (and I’ve experienced a lot!) and all of the other tortures that make up labour and delivery.

It wasn’t so much what you did or said (but your coaching at the end was one of the most helpful things anyone did that day, besides the numbing injections!). It was your presence.

Your presence makes everything better.

A screaming baby, a persistent neck ache or lack of sleep all seem more bearable with your company.

Thank you. I thank God for you every day. 

I am so thankful that I got to meet you, that I got to marry you and that I get to raise this precious baby with you. 

Please always remember to pause and take in these moments. They will never happen again. Please remember to invest in our relationship. Please remember family is more important than money. Please remember I will always love you.