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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!

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Changes and a Family Home

We have been looking for a house for a while. We have tried different neighbourhoods and different counties. We even considered buying a house for someone else to live in, as an investment, in an area we couldn’t live in.

But we have finally found a house in an area close enough to where we currently live and work. It has plenty of indoor and outdoor space for our growing boy. The neighbourhood is “up and coming”. But there are good schools around.

Now I’m excited to get to work with “cheap chic” decorating ideas. I’ve been waiting to decorate baby’s room and have made do with his scrapbook so far.

Of course, my first stop was the library. They have some great books on the subject. The next will be scouring the internet for ideas.

Last week baby started three short days per week with his in-home carer. I’m so thankful for this option of childcare. He will know and bond with his fully qualified early education teacher/carer, who will have no more than one other baby and no more than four children total at a time.

So the time has come to get back into my business and set up some work. Which is a bit exciting and scary at the same time. Will I have enough energy for work and my baby? Will I be able to find a good balance, physically? Will I have the energy to do other things? Will I be able to generate enough work to help is pay this mortgage? Will my neck pain skyrocket?

These questions can only be answered with experience. Please send positive thoughts my way!

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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.

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Ways to Cope in the First Trimester: Pregnancy with Fibromyalgia, Chronic Pain & Fatigue

The first trimester can be hard for anyone, let alone a woman with fibromyalgia, chronic pain and chronic fatigue. Pregnancy with fibromyalgia is not a picnic, although some women do experience a remission from their symptoms. I was so wrong when I thought that several years of fatigue and a decade of chronic pain could prepare me for this whole new level of fatigue, nausea – and by extension, pain.
For ease of language, I refer to fibromyalgia most often, but this incorporates chronic pain, chronic fatigue and insomnia. I personally have the chronic pain condition myofascial pain syndrome as well, so my experience between the two is indistinguishable.
I had to learn the hard way, through personal experience, how to manage pregnancy with  fibromyalgia before I found enough research to be useful, so I share everything on this blog so it isn’t as hard for you.
pregnancy with chronic pain, chronic fatigue, fibromyalgia, ways to cope in the first trimester

Here’s my tips for coping with the first trimester:

  • Acupuncture for nausea I found this to be a total lifesaver, my physio knew the right spots for hitting that nausea caused by the whirling hormones in my body. She also gave me a pressure point stimulator on my wrist that I could press when I needed. Unfortunately, my existing conditions mixed with the pregnancy problems and I couldn’t separate them, I had no idea how much was “reasonable” or “normal” for pregnancy. Try also: ginger and peppermint.
  • Rest when you can – this is something I couldn’t ignore. There were days when I got up at 7 and needed a nap at 10. I was so lucky to work from home! Rest, rest, rest. You won’t get much when the baby comes. I wasn’t able to, but make a rule of not going out after 7 too often, that would have been so awesome. (I haven’t yet learnt to properly stand up for myself, maybe one day I’ll master this). Since I wrote this article, I have profoundly benefited from meditation, see more about meditation here
For a sneak peek into the third trimester when pregnant with chronic pain see here
  • Keep walking – I did my absolute best to keep exercising. Sometimes I couldn’t, other times I managed 20 minutes (something I continued until my last day of pregnancy, and for which I’m thankful for). If walking is out of reach, a bed yoga routine could be an idea.
  • Eat little and often – this is something that’s natural to my metabolism, but I found that eating less amounts, more often helped. If I had food in my tummy, but not too much, I was less prone to nausea and I had more energy. Yes it is best to focus on vegetables, fruits, protein and healthy fats. But if carbohydrates are calling you and you can’t stomach anything else, go for it! Just try to stick with wholegrain rather than refined flours.
  • Find your Shapes – find that food that helps your tummy when you’re nauseous. At first, what helped changed weekly. But after a while Shapes (small, flavoured crackers) became my go-to. I must have gone through a dozen boxes in my first trimester!
  • Manage your pain as best as you can – Ideally you will have previously discussed what medicines you can and cannot continue to take while pregnant with your doctor. If not, make an appointment as soon as possible to discuss it with a knowledgeable (and compassionate) practitioner. Also utilise all the natural pain management mechanisms possible. Rest, sleep, warm bath, heat pack, stretching etc.

This post was written after my first pregnancy and before my second two (when I really refined what helped!) so do check out “pregnancy” category in the category box for more articles to help. 

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Head Pain

I got stuck a few weeks ago.

I kept recycling some stressors around in my head. With the negativity came a boost in pain and fatigue. I felt awful.

Now that I’m out of it and have some distance, I was able to recognise it for what it was. Unnecessary fear and anxiety.

If only I could learn to be more hardy about my limits and not get so down when other people the fibro relief bookdon’t get them. (An ongoing point of learning)

I’m reading The Fibromyalgia Relief Book: 213 Ideas for Improving the Quality of Your Life by Miryam Erlich Williamson. I’ve taken many notes, including some exercises to do at work for my neck. This quote spoke to me:

“…fear and anxiety accentuate pain. If you can get your emotions under control, you will have taken a giant step toward controlling your pain.” P108

It’s so true, yet I constantly forget. When I can maintain a positive mindset, I’m doing my body a favour. Also, it makes a life that’s already hard nicer.

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Awesome Website Resource

t’s hard enough to live with pain and fatigue every day of your life. Without people claiming you can be cured of you do the right thing.

The reality is that the spectrum of these illnesses are so different that some things work for others and some don’t. Some swear by chiropractic care, I choose acupuncture provided by a physiotherapist. Some people can work full time and cope, I found that reducing to 30 hours a week dramatically improved my life.

I’ve read about an approach that recommends the eradication of salicylates, which is hard because they seem to be in just about everything.

Another recommends a specific drug. Another detoxification.

But the most recommended approach, the one that I take, is to try to live as healthily as possible. The way we are all supposed to live.

I recently came across a fantastic website resource for a guide to a way of living as healthily as possible – 

This person has fibromyalgia and works with clients who have fibromyalgia, she’s compiled a website with a whole range of useful tools to consider trying.

I knew she was the real deal when I read:
I do not endorse a cure. However, it has brought my severe fibro pain from a 7, 8 or 9 level to a 2, 3, or 4  level.”

She shares a great “protocol” that she follows.

Essentially it is healthy eating, gentle exercise, supplementation of vitamins or minerals you’re short of, meditation and good sleep.

It is worth a squizz as I found it encouraging. She affirms many of my approaches. Including things I’m trying to be firm on after realising they’re so useful -honouring your body clock and resting enough.

While it’s not good to dwell on your symptoms, it is good to research and try positive ways to be well. This is one resource I will go back to again and again.

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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. 

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Jobs

Being a mother is a job. A challenging, exhausting, 24/7 job that pays only in smiles.

My baby is 9.5 weeks old and I have been asked many times already if I am back at work yet! It’s also been assumed many times that, because I work from home, I don’t need childcare.
I’d like to set two things straight. First, work at home is still work. Second, the baby needs so much care there is no way I could get any work done.

My baby sleeps very little during the day. If he does sleep it is in my arms or in the pushchair – continually being pushed. In the night I am still being woken every three hours for a minimum of 45 minutes at a time, if I’m lucky. If not, like last night, we barely slept from 1am.

I’d like to encourage mums to stand up for themselves. As the amount of pressure I’ve already begun facing is huge. And I already have chronic pain and fatigue to deal with.

It will get worse. No wonder there is a vast (and growing) number of women dealing with chronic fatigue and other lifestyle related illnesses.

I will be trying to fight for balance. But gosh it is hard! In a world simultaneously dealing with increasing lifestyle related illness and increasing expectations – how have we not learnt? And how do we expect mums with tiny babies to be doing double shift? Even if the child is at daycare during work hours, the woman is still working two jobs!

So, mums, please fight for yourselves. Dads, please care for the mother of your children and help them to balance the responsibilities wisely. Families, support your mums and help them fight for balance. Let’s fight for new norms!