In Defense for Doing What Works For You

In Defense of What Works For YouI go to bed relatively early. I do this because I’m exhausted by 7pm and the last couple of hours of the day are a drag, because I sleep poorly (I lose at least an hour of sleep in the night and don’t stay asleep for longer than one or two hour blocks), Nu wakes about 6.30am and because I’m growing a baby.

Regardless of these excellent reasons, I shouldn’t need to explain myself.

I think many of us have encountered people who have an opinion about how we should do things, it’s especially frustrating when they do not understand our illness (or pretend it doesn’t exist).

But how about we let people choose what they need to do and leave them to it.

How about we acknowledge that, as much as culture and traditions and expectations, personal preference counts. I may not have strong cultural traditions, but I do have a way I do things. I have a valid opinion. And what I chose for myself and my son are the final decisions.

A lot of my lifestyle choices are influenced by how I cope with Fibromyalgia. My day to day choices dictate whether I’m miserably sore and fatigued, or whether I have a nice day – usually somewhere in between.

Sleep is very important. Rest is vital. Exercise, nutrition, supplements, heat, medicine and physio also form part of my coping mechanisms. And the only person that suffers when I am forced to overdo it, or let these coping mechanisms slide, is myself. And nobody should have to feel like they’re just treading water.
Fibromyalgia is an illness of self-management. We need the space to manage it.
And noone has a right to comment on this. Unfortunately we will find pressure to do more, to sleep and rest less, but we need to try to make it white noise. We need to keep our eyes fixed on what helps and walk forward with hope.

Fibro Mama Pregnancy Diaries Weeks 15-17

fibro mama pregnancy diariesI 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 and 11-14 here and look out for the rest soon!

Unfortunately side sleeping has become a necessity (thanks back) and my neck has not been very happy with me. Despite multiple pillow changes, tossing and turning all night and medicine at bedtime, I’m waking with a rather stiff and sore neck.

The first moderate neck headache occurred late in week 14 and was managed with repeated heatpack, panadol soluable and a relatively quiet day (I have a two year old boy, quiet is not a word to be applied to our days!).

The physiotherapist, who does neck tractions and places acupuncture needles in tight neck and upper back muscles, really helps me. Unfortunately this is not covered at all and private fees are not cheap, so I have to survive on one visit per fortnight. I highly recommend trying this for Fibromyalgia or pregnancy (just ensure they are trained in treating pregnant women as there are points to avoid and there is a slight risk, but they have to disclose this before they treat you).

I had some spotting as we headed into week 15 which gave me a little fright. It’s quite normal in the second and third trimester and is generally alright if it’s light, brown and not accompanied by pain. It would have been so great if I could feel baby move so I could double check!

Nu remained excited about baby, and often told me that he saw the baby on the TV and it was dancing (baby was busy in the scan and it took a while to get the measurements) – confirming it is a direct relation to Nu! He liked to say hi to baby -pat, kiss and do the sign of the cross (a Catholic blessing).

Somehow, while still in bed and having only been awake for a few minutes, I managed to pull a muscle in my neck while stretching out he stiffness from sleeping on my side. OUCH! I was in such agony. On the first morning I couldn’t move without severe spasms radiating down to the shoulder. Luckily, injuries heal, and by day three I could move a little better and had less pain. It took a week to get full movement back and I was rather nervous of moving from side to side in bed after that!

Despite the neck issues, I fully enjoyed the benefits of the second trimester. I relished food and our walks, I enjoyed all my projects and I managed to make a small dent in the tick list of items baby needs. I am determined to organise baby’s room and belongings before the third trimester hits so that I can focus on resting, exercising and generally trying to be well.

I was heartened to find a few blog posts by other expecting fibro/CFS/ME mamas (or mamas when they were expecting) that showed the 20-25 week area to be relatively cope-able too.

The absence of stress and too many work hours has really helped me to cope physically. Although the burden on my husband is not light. I’m hoping that by not getting so run down in pregnancy and having my husband home for six weeks after, that I’ll be able to enjoy (and remember my baby’s early days).

For now I’m enjoying my bump and feeling my baby move.

The Fibro Manual by Dr Ginevra Liptan

Dr Liptan is a doctor who has Fibromyalgia. She developed it while in medical school, with little recognition of it among those in the mainstream medical field at the time. Through research, trial and error, she has managed to recover from (not cure) Fibromyalgia.

26067567._UY116_Her book The Fibro Manual: A complete Fibromyalgia Treatment Guide for You and Your Doctor (2016) is a revelation. Not in that it has entirely new ideas for me, but her research coupled with her experience (personal and professional) has produced conclusions that resonate with me.

For example, she believes sleep to be a vital factor in treatment:

“Sleep studies show that Fibromyalgia subjects show abnormal “awake-type” brain waves all night long, with reduced and interrupted deep sleep and frequent “mini-awakenings” (Brandi 1994; Kooh 2003). This deep-sleep deprivation leads to pain, fatigue, and poor brain function (Lerma 2011; Moldofsky 2008; Harding 1998). Treatment focused on increasing deep sleep is the key to improving all these symptoms.” The Fibro Manual: A complete Fibromyalgia Treatment Guide for You and Your Doctor (2016) Dr Ginevra Liptan p25.

She has chapters dedicated to helping us achieve a whole night’s sleep. This includes a table of medicines that can help the different parts of the brain with sleep disturbances. (I always look up medicines online to check potential side effects etc.)

Once sleep is tackled, she explains how to approach the rest – nutritional imbalances, pain, fatigue and fibro fog.

The structure is such that it is designed for us to gain an understanding of our illness and the ways forward (vital as we are often our own advocates) and also to share the information with our doctors (who, as a profession, like evidence-based treatment).

There is a handy appendix with a useful treatment plan that you can show your doctor. Liptan also provides tips for how to effectively work with your primary physician (who sees many patients a day in 15 minute slots and doesn’t necessarily have time to read all the research on Fibromyalgia) including to break up your issues (ie. fatigue, then pain, then other) and how to approach treatment ideas.

I’d wholly recommend reading this book. I had marked several pages to show the doctor at the pain clinic at my follow up, however the doctor I saw was not interested at all. I’m hoping my GP will be more receptive.

It has solidified my mission to work on sleep and I intend to follow this up when baby is out and sleeping in longer blocks at night. I feel so strongly that sleep will make a huge difference to my life (not cure me) in so many ways – getting quality sleep must decrease pain and fatigue, and efficient sleep will help a mama with two small children. I just can’t afford to spend nine or 10 hours in bed just to achieve eight broken hours! I will, of course, update you on my experiment outcomes.

Fibro Mama Pregnancy Diaries Weeks 11-14

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 and 7-10 here and look out for the rest soon!

weeks 11.14In week 11 I went away for my sister’s graduation, that meant planes (always mess me up), long days and a different bed.

Surprisingly, my morning sickness flared up the day before 11 weeks and stayed while I was away (I slept poorly and was quite sore). I was also hungry every two hours, I really got tired of figuring out what to eat.

My back was not a happy camper. The entire spine seemed mad at me! My neck was it’s normal, stiff and sore self and my low back was intense. I experienced a burning sensation along the lower back most of the day and night and needed to lie on a double folded winter duvet to be comfortable. My upper back went into spasm semi regularly. My usual physiotherapist suggested I see a physio who specialised in women’s health.

Our nuchal scan (assessing the risk for some genetic diseases) was scheduled for week 13, as this week enabled my husband to make it. He got to see the baby for the first time.

I met the second of the team of two midwives who will look after me, filled in many forms and heard my precious baby’s heartbeat.

My energy levels did get a little better as week 12 progressed toward week 13, but I was still super tired and struggling with sleep. The nausea receded and the hunger became less of an issue, which was a big relief!

As my pregnancy would span winter and spring, and the baby would arrive in summer, I had quite a few seasons to address for my maternity wardrobe. I purchased three maternity/nursing bras, two pairs of maternity jeans, two tops with long sleeves and a coat. I intend to buy a few nursing tops in summer.

It has gotten more exciting and more calm now we made it to the second trimester.

Creating Space

Creating Space, Self-Care Mechanisms for New Baby

Becoming a mama for the second time has some extra logistics to navigate. I have to consider Nu, baby, husband, the dog and myself!

I’ve noticed that I’m pretty good at naturally following cues and finding a rhythm IF I have the space and quiet to do so.

So I’m putting somethings in place to gift myself as much space as possible.

Creating Space

Nu’s care

I’m keeping him in his little routine of three school hour days of care. For pregnancy that gives me space to try and fit in some rest around the other stuff. For after babbageddon drops on his life, it will simultaneously give him his sense of normalcy, his routine and for me it will create space to create a routine with the baby.
It will cost more than half of my parental leave payment to do this, but I think he will need the stimulation. I don’t think he’s going to be a happy camper if he is housebound watching a zombified mama try to feed the baby.

A feeding plan

I had a hard time for multiple, complex reasons with Nu, but I managed to feed him expressed breast milk exclusively for six weeks and mix fed for two further weeks. I should write a post about my breastfeeding experience with Fibromyalgia! Needless to say, I have created some contingencies. The only thing I’m guaranteeing is that we’ll mix feed. I’m committed to feeding my baby. I’m hoping to give breast milk for at least six weeks. But I have so much more information now that both enables me to do it and reduces the extreme pressure to do it against my self-care prerogative. Essentially, I’m putting on my own oxygen mask first – I have two children I am responsible for, which makes self-care super important.

A sleep plan

I am fortunate that my husband is a superstar. We plan, for the weeks he’s home with us, to split up the night. Given the moderate to severe sleep issues I have, a jump start on healing is necessary. So I’ll go to bed around 9 and husband will take care of the last two feeds. Then I can be on call again. The night is pretty much my only chance for sleep, I could not nap at all even when I was too miserable to be alive when Nu was small, so the night has to count! I also have meditation this time around so I’m going to build Yoga Nidra/hypnosis/body scan meditation into the days for body and mind rest.

A pain plan

In the earliest weeks, where there is less time, less sleep and more pain, I already know the way to manage my pains.
1. Take the after-baby medicine offered properly – I stopped far too soon because I was a weirdo about medicine back then, to the detriment of myself!
2. Create a plan for Fibromyalgia medicines – know what I can use when and what is safe for breastfeeding.
3. Sit or lie down with the heat pack multiple times a day.
4. Take a hot shower (bath as soon as the bleeding stops!)
5. Begin pelvic floor exercises ASAP and gentle walking as I can – this is twofold, it encourages healing blood flow and reduces pain – my body needs gentle exercise to keep it going.
6. Arrange Physiotherapy appointments, once Nu is back in care and on a day that husband can be home with baby I’ll add physiotherapy back into my routine.

A dog plan

My brother, Luke, will be in charge of all things Coop so that I know he’s taken care of and I don’t have to do it.

Is there anything else you did to buy yourself space/time after a new baby? Anything I should add to the list?