Time Flies

9 Jul
Time may fly but always remember you are the pilot

© Jess Bruce 2016

Time seems to be disappearing at an incredible pace at the moment.

Do you ever get overwhelmed by how busy life seems to be? By how little time you seem to have?

I get a feeling that I can only describe as claustrophobia, of being trapped, when our calendar fills up and there seems to be too much going on and not enough time to get everything done.  I feel out of control and that induces a feeling of anxiety and panic.

To help combat this, I took to Google for some reassuring words. The idea that time flies past but that we are each the pilot of our own time helped me feel back in control.

I also like the idea that time only passes quickly when we are happy. Have you ever noticed how slowly time drags when you are bored or sad? So the fact I feel that time is playing a vanishing act on me at present must mean I am very happy, which in itself is a very uplifting thought.

Our minds are, as always, guiding our experience. The apparent speed at which time passes is merely a trick of our wayward minds.

A week today, Mr B, bump and I are off on our holidays, two weeks relaxing in the South of France. I can’t wait. For those two weeks, time will stand still.

Growing In Confidence

2 Jul
Standing tall, (sycamore not an oak) tree © Jess Bruce 2016

Standing tall, (a sycamore not an oak) tree © Jess Bruce 2016

I seem to have more pregnancy related symptoms creeping in this week, namely heavy feeling wrists, calves and ankles and a numb bum when I sit for any time! All part of the normal course of pregnancy according to my midwife, who I saw this week for my 25 week appointment. Both bump size and baby’s heartbeat are doing well. And I am now toting a step stool and tri-pillow around with me as apparently sitting firmly upright and with your legs at a right angle to your hips helps combat the butt numbness. And, I have to say, it does seem to be working which is good.

On to today’s topic, self confidence….

As odd as it may sound for someone who writes a blog, I’ve always been someone who has struggled with self confidence and valuing my own opinion. It is an issue that has plagued me for most of my life and has caused me a great deal of stress and anxiety over the years. It probably won’t come as any surprise that pregnancy has brought a whole world of new possibilities for feeling stressed by other people’s opinions. When it comes to pregnancy and baby bumps, everyone seems to think they’re an expert and to want to share their experience and advice with you; often in a fairly dogmatic way. Or at least that’s how it can come across to someone who takes what others say as fact at the expense of her own feelings and desires a lot of the time.

Now I know these friendly comments are only shared with the best of intentions. But it can be quite anxiety provoking. Take one trivial example, I went for a pregnancy massage, which was lovely and I can’t wait to have another, but the therapist commented more than once how small my bump was and how she couldn’t believe I was 5 months pregnant. Cue me then spending hours examining my bump in the mirror comparing it to pictures on Instagram; worrying that I was too small for my stage and that the only natural conclusion must be that baby wasn’t growing correctly and that something was wrong.

The apparent smallness or otherwise of my bump, except when measured by the midwife with her special tape measure, is merely a matter of opinion. It is a belief.  And not, most importantly, a fact. Every woman carries their unborn child differently. The massage therapist was merely expressing her opinion which does not, and should not, be binding or persuasive to me. It is merely her perception and I can take it or leave it depending on whether it is helpful to me.

I try and deal with other people’s opinions and advice in two ways: 1) remembering an opinion is not a fact and; 2) by building my self confidence so my own opinions carry more weight in my mind.

Remembering the distinction between fact and opinion has been important as I have felt at times a bit bombarded by negative messages from well meaning friends and medical professionals alike. Just because a friend wanted an epidural to reduce the fatigue of labour does not mean I will necessarily need one. Just because a doctor thinks breastfeeding and ME/CFS are incompatible, does not mean I shouldn’t breastfeed (which incidentally is not something I am willing to give up on without trying). Here I give just two examples, there have been many others. All these nuggets of information – negative messages so to speak – clog up my brain and rapidly eat away at my original thoughts and desires, demoralising me and stressing me, which of course does nothing to tame my ME/CFS.

I don’t pretend to know everything and I don’t flippantly disregard the advice of others and especially not those of medical professionals, but as fellow ME/CFS sufferers will attest, so often the medical profession is found lacking regards care management of our condition leaving us feeling that we know our own bodies best. I am not arrogant and believe I know best. In fact I think that the fear of coming across as arrogant (fear of what other people think) has worked to quash my self confidence for so long.

My aim, now more than ever, is to cultivate a mindset of quiet confidence so that I can internally review advice that I receive, do my own research where necessary and ultimately make a choice, that feels right to me, with a cool calm head rather than acting out of fear or in a haze of self doubt.

And so I have worked to build my own self confidence using simple techniques. The easiest for me is a visualisation. When I become aware of a negative voice reverberating around in my head I stop it by pausing and breathing. I make a conscious choice to change the voice.

When I’ve been feeling overwhelmed and disheartened by other people’s comments, I have felt the need to exert myself – not literally in their face, they are nowhere near at this point, but instead I want to radiate a calm confidence and to me, confidence is about standing tall with your head held high.

The image I create in my mind that encapsulates this tall confidence is a wise, old oak tree in a forest. He who stands so tall, strong and sure of himself. I see myself standing so tiny at the foot of the tree, looking up in awe at its great height; the breeze fluttering its green leaves, the sunlight filtering through its canopy way above, its rough trunk so strong and safe, its roots burrowing deep into the earth holding it steady. I can smell the crisp fresh dewy air of the early morning forest, leaves crunch under foot as I walk and the oak tree is cool, calm and confident.

I see myself grow and morph into the tree, taking on all its characteristics, feeling myself grounded by deep roots and enlivened by the sun’s energy on my face as I stand tall above other trees in the forest. I am strong and steady as birds fly by and perch on a branch but I remain true to myself. I am strong and confident, yet open to possibility.

I use this in the context of the Lightning Process, but visualisation is powerful and can easily be used on its own and it definitely works for issues other than pregnancy. It can be used any time you feel you need a little boost in confidence and self esteem; to stand a little taller as it were.

My mind can be my greatest ally through this pregnancy journey, in the same way as it became my greatest tool in combatting my ME/CFS. But it’s not easy and it will take awareness and perseverance.

For now, I will simply go back to my oak tree.

ME/CFS Maternity Care

25 Jun
© Jess Bruce 2016

Bump at 24 weeks © Jess Bruce 2016

It has been quite a week here in the UK with apocalyptic rain storms and shock referendum results. I’ve been at my parents house avoiding the fallout of the Brexit vote and also the paint and decorating dust of our home improvement works.

I saw my tummy move for the first time this week from the baby’s movements which was so weird but also amazing! It really is incredible, feeling the baby move more and more inside me. I can’t wait for the movements to increase that bit more so Mr B can see and feel them too.

I just wanted to say following on from my post last week, that although my ME/CFS is certainly more active with increases in symptoms at varying points during my pregnancy, it is still totally manageable and I still consider myself very lucky and am very grateful that my body is coping as well as it is with my pregnancy. I’ll save pregnancy symptoms for a separate post, but I am getting off pretty lightly (so far at least) compared with many other entirely ‘well’ (i.e. without a chronic illness) women in terms of the typical symptoms of pregnancy.

So anyway, onto today’s post. Despite my medical history, I am classed as a low risk pregnancy – hurrah! Though there are some extra considerations that have been raised that I will share now.

Pregnancy

In terms of pregnancy care, due to my medical history I was referred to an obstetrician consultant by the midwife at the start of my pregnancy. This served to give an overview of the issues we needed to consider due to my ME/CFS.

I am having extra growth scans to keep a closer eye on the baby’s progress and having my thyroid function checked every 4 weeks. I came off my thyroxine before conceiving, and so far my levels are within the normal range but if it drops too far I will have to go back on it. Thyroxine is  safe to take when pregnant and as your thyroid is vital to a baby’s growth in the uterus it is important to have it monitored when there is a history of underactive thyroid as there is with me.

Beyond that I am having standard maternity care, having been seen by the midwife at 8 and 16 weeks so far, with my next appointment this coming week, at 25 weeks. In my area you are not assigned a specific midwife and instead they operate as a team. Some of them seem very clued up on what ME/CFS is whereas others it is less so -‘so you’re just extra tired then?’ was what the midwife at 16 weeks said…. But that sadly is often the greeting you get in mainstream medicine about ME/CFS so it wasn’t a massive surprise. The other midwives and obstetrician have been much more informed.

Birth

The obstetrician consultant explained that where fatigue is in the mother’s history, they tend to advise earlier admittance to hospital during labour so that pain relief can be administered earlier as pain is obviously highly depleting in terms of energy and if fatigue is a concern then extra measures need to be taken in order to conserve energy for the actual delivery stage of labour.

That said, my preference is for a natural birth. Mr B and I attended a Hypnobirthing workshop last weekend (more on that in a future post). We both found it very empowering and informative (I think Mr B was surprised by how useful he found it, he was pretty sceptical beforehand). Hypnobirthing comes from the same science and neurology as the Lightning Process, which has helped me so much with my ME/CFS recovery; so it is something I feel very comfortable and confident using.

Adrenaline and cortisol are highly depleting in terms of energy and also inhibit cervical dilation, so I will be aiming to use all the tools I have learnt to keep my stress levels (and consequently pain and fatigue) as under control as possible.

But we will see how things go – everyone says it’s important to not be too tightly set on a certain birth plan as birth has the tendency to go its own way and do the unexpected.  So if an epidural is necessary due to my fatigue levels or otherwise, then so be it.

The obstetrician also advised against an elective c-section. Given labour is called labour for a reason – it is not exactly a walk in the park – I had thought perhaps an elective c-section would be recommended. But whilst this would obviously help with fatigue management at the actual birth, it is major surgery and relapse rates of ME/CFS following surgery are far higher than after a vaginal delivery. A woman’s body, even one with ME/CFS, is designed to deliver a baby, it is not designed to be cut open through major invasive abdominal surgery, and as I am learning through my pregnancy, my body is amazingly resilient and adaptable.

Post-Partum

Regardless of the type of birth, a new mum who has ME/CFS may need more help post birth in order to pace herself and to cope with the ‘normal’ post delivery fatigue and of course the tiredness of having a new bundle of joy to care for at home.

It is that first month or so when the mother is most depleted and vulnerable to ME/CFS resurfacing that extra support needs to be considered. Prevention and pre-emptive action is very much key here.

In our case, Mr B may take extended paternity leave, my mum is lined up to help and we are looking into post-natal doulas and sleep nannies. We will have to keep our inner circle pretty small, limiting social visits in the early weeks/months, both in frequency and duration, to keep my activity, fatigue and stress levels at the lowest level possible.

Again, a newborn is unpredictable so our approach is to have different plans in place as options and then to do what feels right and necessary at the time, and to adapt as we need to.

I think that covers most of what we have discovered so far. I’ll update this post as we learn more. If anyone has anything to add in terms of pregnancy, birth or life with a newborn, from an ME/CFS perspective or otherwise, please share in the comments below.

If you would like more information, you can order information leaflets (which I have found very helpful) from the U.K. M.E. Association. They also run online forums for parents with ME/CFS and have a helpline.

To read more about how being pregnant is affecting my ME/CFS, see this post.

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