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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Big News

11 Jun

This post has been a long time coming. I’ve written it so many times in my head but somehow not managed to get pen to paper, or fingers to keyboard as it is. Some fear or suspicion has stopped me from sharing until now, hence the radio silence on my blog over the last few months.

But I’m delighted to tell you that I am pregnant, 22 weeks no less! We had our anatomy scan this week and all is well. I am carrying a beautiful bouncy baby girl! Mr B and I are so happy and can’t wait to meet our daughter. She is due on October 12th, the day after Mr B’s birthday. He is hoping she is early and arrives in time to share his own birth date, though I’m not sure we have any control over that!!

Being pregnant is incredibly special for me as back when I was so ill with ME/CFS, as close friends had babies, I was often brought to tears over whether I would ever be well enough to have a child or whether my body would behave and allow me to conceive. I have always known I wanted to have children and be a mother. That feeling has only become stronger, the older I have become. So it was with immense joy and relief that we found out I was pregnant.

Being pregnant is helping me to rebuild trust with my body, something that I lost through the worst years of ME/CFS. Pregnancy is magical and leaves me in many ways in awe of my body, I am after all growing a little person inside me!

So how has my pregnancy been so far? In some respects I’ve been really lucky and am having a really easy pregnancy – no morning sickness just nausea for the first couple of months but in other ways it has been pretty challenging – I suffered with a lot of bleeding weeks 7 – 15 which naturally caused a lot of worry and stress which in turn exacerbated my ME/CFS symptoms. I had a month or more of really not feeling very good and not being up to doing much at all. Now things, touch wood, have settled, my only real complaint is fatigue. It is hard to tell if this is ME/CFS fatigue or pregnancy tiredness, probably a combination. I’m dealing with it by resting a lot and taking much needed afternoon naps. So mostly I’m doing really well. Touch wood, long may it continue.

In the hope that my experience can help others, I plan to write more about my pregnancy and how my ME/CFS is reacting to it. But for now, I’ll leave you with a first photo of our Little Miss!

© My Journey Thru ME 2016

© Jess Bruce 2016

See The Colour

4 Mar
© Jess Bruce 2016

© Jess Bruce 2016

If you worry or suffer with anxiety or get nervous (don’t we all from time to time?) then this post is for you.

I’m going to share today a really simple technique for calming and quietening your mind.

I used it a lot when I was first starting to recover from ME/CFS and was starting to push my activity boundaries by going out more. I needed a way to silence the noise in my head, the automated subconscious, but very loud voices, telling me ‘you’ll do exhausted in bed for the next week by going out’, ‘you’re going to do a migraine whilst you’re out’, ‘you can’t cope with this’….

By using this technique I was able to shut out all the negative, stress inducing mind noise.

© Jess Bruce 2016

© Jess Bruce 2016

But this technique has a much broader application than just in a chronic illness scenario.  If you’re nervous or distracted, or worried about something or just want a few mindful minutes then try this colour spotting technique.

I like to do this as I’m walking up the street but it could be done anywhere. If you’re at work, sat at your desk, anxious before a big meeting, you could take a few minutes out, it really can take just a few moments, and do this.

So what do you need to do?

Firstly choose a colour. Any colour. The first one that pops into your head or one that resonates with you. I like to use yellow as it’s bright and positive.

Then look around you and notice everything that is your chosen colour. Focus purely on that one colour and mentally note as many things as you can see.

So as I walk down the street, I see yellow daffodils, the yellow light on top of a taxi, the yellow shop sign, the yellow amber traffic light, the poster with yellow lettering at the bus stop, the little girl’s yellow wellington boots, the young boy’s yellow hat, the cyclist’s high-vis yellow vest….and so on. And before I know it, my mind is quieter and clearer, the stress or fear has fallen away, the negative voices subsided, having been crowded out and replaced by a much more positive and calmer frame of mind. I’m more mindful and present in the moment, focused purely on walking up the street and what I can see around me.

© Jess Bruce 2016

© Jess Bruce 2016

So easy, so simple and yet incredibly effective. If you find your mind has wandered off, then just bring yourself back to your colour and what you can see around you. You can repeat this technique as many times and as often as you need. The more you do it, the more positive synapses in your brain you build and the weaker the negative ones become.

Incidentally, after you have done this exercise, without actually looking again, try and recall what you can remember of a different colour. So if I’ve chosen yellow, I can reel off a whole host of yellow objects that I’ve noticed in the street. But what about red? Pause and try and name a red object. Don’t think about it too hard. Don’t look around you again. What can you remember? You’ll most likely not remember any colour other than the one you originally chose. Try it and see. This is a good lesson in you only see what you look for. As in, if you look for the negative in the world, then you will miss the positive. A good little life lesson I think.

So go forth, choose a colour and look around you. Take a few mindful moments out to calm yourself. And then get on with your day in a more positive state of mind 🙂

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