Tag Archives: ME/CFS

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.

An ME/CFS Pregnancy

18 Jun
Baby grows

© Jess Bruce 2016

Thank you so much for all your lovely comments on my last post about my baby news. It was so nice to hear from you both here on my blog and via social media.

This week I am 23 weeks pregnant and loving feeling our baby girl move more and more inside me. Whilst I was watching the England football game on Thursday she was going mad, not sure if this means she is a footie fan or not!

The big milestone this week was purchasing our first baby clothes which you can see in the picture, just so cute 🙂

Today I thought I’d write an overview of how my pregnancy has been in terms of my ME/CFS so far.

First thing to say is that ME/CFS is very much an umbrella term and very different for each sufferer and I have quickly learnt that pregnancy is equally unique and individual. No two pregnancies are the same. So if you’re reading this as a fellow ME/CFS sufferer who is pregnant or hoping to become so, don’t take what I say about my pregnancy and ME/CFS as a given, your experience could be totally different.

Before trying to conceive, as my ME/CFS was relatively stable and no longer severe, I was advised to gradually reduce my medications over 4 months. I wanted to do this anyway to see how well my body actually was without the medication masking symptoms. Despite some teething problems with withdrawal symptoms, I didn’t suffer a resurgence of symptoms and haven’t had to start taking anything again. (Please though, don’t reduce or stop medication without speaking to your own doctor first).

I had been told by my neurologist that some women with ME/CFS do really well during pregnancy, with  the surge of hormones meaning they feel better than ever with far fewer symptoms and much more energy; others however struggle with the impact of the growing baby depleting their body to such an extent that they deteriorate and relapse and for some there is no real impact with their level of functioning remaining the same. My consultant advised me to be prepared for the worst and then anything else would be a bonus.

For myself, I’m glad to say that, touch wood, so far so good and there hasn’t been any major relapse. I would however say that it has been a combination of the above, with my level of functioning varying at different stages of my pregnancy.

At the start I felt pretty good, with more energy and very little to complain of for the first 8 weeks or so. Even the bleeding I had at week 7 didn’t trigger more than a week of increased fatigue. Sleepy tiredness and fatigue (there is a definite distinction between the two) began to creep in towards the end of the first trimester but to begin with things were good.

As the first trimester turned into the second, things deteriorated both in terms of ME/CFS symptoms and issues with my pregnancy. And the two were most definitely linked. With all the bleeding and accompanying abdominal and back pain that I suffered weeks 12 – 16,  my fatigue and myalgia levels greatly worsened. I suspect this was due to the enormous stress and worry I felt about the bleeding and my ME/CFS wracked nervous system went into overdrive.

Time helped heal all of this, but there was a lag effect on the fatigue and myalgia with it lasting beyond when the bleeding stopped.

And to be honest, the fatigue, although improved and now not day in day out, is very much still worse for me than it was pre pregnancy. But that is a small price to pay for growing a little babe inside me and something I’m more than capable of adapting my life around. After 5 + years of ME/CFS I’m very used to it.

Leaving aside my pregnancy specific symptoms for a later post (there is of course overlap but clear differences too), here is a quick synopsis of the impact being pregnant has had on my ME/CFS symptoms:

Energy – better initially, then worse

Fatigue – worse as pregnancy has progressed

Myalgia – much worse weeks 11 – 18, now it’s about the same as pre pregnancy levels, probably slightly more prevalent as my fatigue is worse and the pain always spikes when I’m more tired. I suffered quite a bit with pain during our holiday to South Africa in March (11 weeks pregnant) but as I was doing more it was to be expected I guess

Sleep – good despite more wake ups during the night needing the bathroom and to change position / rearrange support pillows, most days I wake up feeling rested, some not so much

Headaches – worse until 16 weeks but settled touch wood, they were pretty bad and without being able to take painkillers really depleting on my energy levels, these cooling forehead strips are amazing

Dizziness – worse on getting up from bed and out of chairs until 20 weeks but better now

Anxiety – worse

Gastro – worse initially (iron in pregnancy vitamins did not help ) but now much the same as before i.e. my usual combination of regular and under control most of the time – provided I stick with my restricted diet and take my soluble fibre supplement (which I am still taking having okayed it with my GP) – and then unexplainable blips where bloating and constipation take over for a few very frustrating days.

So that’s my whirlwind tour of how I’m coping with ME/CFS and pregnancy so far. Next post I will talk about some of the extra maternity care and birth advice I have received as a result of having a medical history involving ME/CFS.

Do you have ME/CFS or another chronic illness? Are you, or have you been, pregnant? Please share your experiences in the comments below, I am very much learning as I grow!

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