An ME/CFS Pregnancy

© 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!

Advertisements

Honouring the Egg: A Summer Quiche

My quiche in all its glory © Jess Bruce 2015

The egg. Perhaps the humblest food there is. A great source of protein and the foundation of so many quick and simple meals.

For nearly 18 months I didn’t eat eggs. Along with a host of other foods, following food intolerance testing, I removed egg from my diet. I embraced vegan baking using egg replacers such as applesauce, mashed banana, flaxseed and chia seeds to bind ingredients. Turns out eggs are fairly easily replaced in baked goods. An egg-less quiche even became a common lunch for me – intrigued? Mixing together gram flour and water, leaving it to froth for a few hours, once baked creates a texture amazingly akin to the egg filling of a quiche.

After seeing my digestion and overall ME/CFS symptoms improve over the year or so following my restricted diet, it was time to try re-introducing the banned foodstuffs. The theory goes that a 12 month absence from eating a food to which you were intolerant, will, in most cases, heal your gut to the point where you can reintroduce the food without reaction. It doesn’t work in all cases, it depends how severe your intolerance was to start with – I haven’t been able to successfully reintroduce gluten and dairy for example, as my last post shows.

The humble egg was the first food I reintroduced and I am very happy to say that it was successful. I now eat eggs two or three times a week. They make the perfect quick lunch – scrambled eggs with basil pesto on toast is my go to when I’m feeling  lazy tired.

Although I do still make the chickpea based egg free quiche – I like to mix up my proteins, and still eat plenty of plant based meals – an egg full quiche is firmly back on the menu.

Pastry case after blind baking © Jess Bruce 2015

Pastry Power

A quiche of course doesn’t just call for eggs. It calls for delicious pastry too; not an easy fix when it has to be gluten and dairy free. I have been gluten free for over 10 years now. I remember the first gluten free pastry my Mum and I made. It was my first gluten free Christmas and we tried to make gluten free mince pies. The pastry could have shattered glass. Or broken a tooth as you bit into it. It was very hard and totally unyielding.

Ten years on however, after much trial and error, my Mum has cracked Jess Friendly pastry. For lunch in the run up to the wedding, Mum made a quiche with a light, flaky shortcrust pastry that literally melted in your mouth. It had a lovely wholemeal flavour from using oat flour. You would never have guessed it was gluten and dairy free.

I have made the quiche twice since Mum’s wedding week one. And the pastry worked beautifully both times, even though the first time was my first attempt at making pastry ever. Gluten free or gluten full. Somehow, despite a love of cooking, I had reached the age of 31 without making pastry. It wasn’t perfect to look at, but it tasted very good which is all that matters in my eyes.

Some gluten free pastries suggest rolling out between two pieces of clingfilm, I didn’t need to do this with this pastry, but it may help. Pastry is a challenging friend, so do whatever helps you get it into the baking dish! I would say though do not chill the pastry in the fridge before rolling out. In my Mum’s (pastry chef extraordinaire) experience that just makes the pastry hard once baked.

Summer produce ready to be the quiche filling © Jess Bruce 2015

Back To The Egg

My quiche filling was less successful the first time around than my maiden pastry voyage. After blind baking the pastry, I followed the guidance of a famous British celebrity chef (who shall remain nameless) whose recipe said to bake the quiche for 15 minutes and then the egg mixture would be set. Erm no. I baked it for 25 minutes and then thought it was done. It was firm to the touch in the centre. But on cutting into it, there was still a steady stream of liquid egg. Although I definitely wouldn’t advocate eating semi cooked quiche, it did taste very nice! I can thank the pancetta and caramelised onion filling for the delicious flavour rather than the runny egg.

Second attempt at quiche making resulted in the recipe and photos that I am sharing today. Even if I say so myself, it looks mighty fine! This time I ignored Mr celebrity chef’s advice and asked my Mum – Mum’s know best correct? Correct! Mum advised a much longer cooking time and the result was a perfectly set egg filling to the quiche, moist but not runny. And the pastry again was delicious, light and flakey.

Quiche comes in hundreds of different guises. My recipe here is for a vegetarian filling. I used a bounty of summer produce – sautéed courgette, slow roasted tomatoes and caramelised red onion. If you don’t have to avoid dairy,  feta or goats cheese would be an amazing addition. Or if you’re an avid meat eater then smoked ham or bacon would be delicious too. The pastry recipe is the star here, beyond that go forth and be adventurous with your choice of filling!

Here’s the recipe:

A Summer Quiche

• Time: 30 mins hands on + 40 mins baking
• Difficulty: moderate
• Print

Gluten, dairy, nut and soya free

Ingredients

For the Pastry:

• 100g rice flour
• 100g oat flour (I grind my own from gluten free oats) + extra for rolling
• 1/2 tsp xanthum gum
• 80g solid vegetable fat (I use Trex)
• Pinch of salt
• 6-8 tbsp of cold water (I chill a jug in the fridge to ensure the water is cold before use)

For the Summer Quiche Filling:

• 6 eggs
• 5 slow roasted tomatoes (I used a recipe from the Intolerant Gourmet‘s first book)
• 2 red onions
• 2 tbsp balsamic vinegar
• 1 tbsp coconut sugar
• 1 courgette
• rapeseed oil
• Salt and Pepper
• Sesame seeds

Steps

For the Pastry:

1. Preheat your oven to 220ºC (fan oven 200ºC)
2. Line the base of an 8 inch round shallow dish with baking parchment and grease the edges of the dish with rapeseed oil
3. Sift the flours into a large bowl, add the xanthum gum and salt, stir to mix together
4. Cut the vegetable fat into small pieces and add to the bowl
5. Rub the fat into the dry ingredients with your fingers until you have a breadcrumb type texture
6. Gradually add the cold water, 1 tbsp at a time,  mixing with a metal spoon as you go. You need enough to bind the crumbs together but you do not want it too wet or sticky
7. Once the crumbs have started to come together, gently kneed the dough with your hands for a couple of minutes until it forms a ball
8. Place the ball on a floured surface and gently roll it out into a thin circle (mine was about 1/2 cm thick I think) and then, the trickiest part, place it into your prepared dish. Do not be afraid to patchwork your pastry if there are any cracks or holes. The egg filling will seal it all together later
9. Lightly prick the base all over with a fork
10. Place a piece of baking parchment paper over the base and cover with baking beans
11. Bake blind for 10-12 minutes.

For the Summer Quiche Filling:

1. Whilst the pastry case is baking, prepare the filling by cracking the eggs into a basin and lightly whisking with a fork
2. Slice the onions into half moons and add to a frying pan with a little seasoned rapeseed oil. Once the onions have started to soften and brown add the vinegar and sugar and stir well. Cook for 5 minutes until nicely caramelized.
3. Slice the courgette into thin strips, cut length ways. Heat a little rapeseed oil in another frying pan and sauté the strips for a few minutes until softened
4. Once your pastry case is cooked, remove from the oven and allow to cool slightly. Reduce your oven temperature to 180ºC (fan oven 160ºC)
5. Arrange onions, tomatoes and courgette slices in your pastry case before pouring over your whisked eggs. Finish by sprinkling sesame seeds over the top
6. Bake for 40 minutes or until firm in the centre (I used the clean tooth pick test to be sure), allow to cool slightly before cutting into slices.

Do you have a favourite quiche filling? Or any tips for working with pastry? Don’t be shy, please share in the comments below!

Jess’ Theory: Digestion is King

Digestion is King. Photo credit Morgue Filer User naama

So I have a theory. A theory about the connection between the food I eat, my digestion and subsequent fatigue and migraine headaches.

It is only a theory, not backed up by any precise science or medical research.

It is a theory based on the solid evidence that my body has presented to me time and time again. My body the great scientific experiment 🙂

My theory goes something like this:

(I warn you it is not a particularly pretty theory..)

1. I eat a food that is technically ‘Jess Friendly’ (a technical term meaning gluten and dairy free)
2. Sometimes immediately, though often up to day or two later, I have a severely bloated and distended abdomen, I suffer with spasms of cramping pains and most significantly to this little theory of mine, my digestion grinds to a halt. No pooping. My body has firmly dropped anchor at constipation-city.
3. I can’t stop yawning. I have a never ending need to rest and when I do I fall asleep. My energy is drained, reaching new lows.
4. My head is filled with haziness for a day. And then a dull ache builds up on the left side of my forehead. It creeps up gradually, often so slowly I don’t always recognise what’s happening. But the pain always starts on the left side. It spreads down behind my left eye and inches across my face and down my nose. I feel nauseous, dizzy and generally spaced out. Bright lights and loud noises are horrible. On the worst occasions I end up in bed horizontal and not moving with a cold compress over my eyes.
5. I take co-codomol, the pain reducing drug, which, if I’m lucky hits the spot and gives respite for a few hours. The side effect of this glorious drug…constipation. A classic catch-22. Either, a) I try and relieve the pain by taking the drug and thus exacerbate the constipation, which caused the headache in the first place or b) I just suffer in agony, waiting for the pain to pass.
6. Once the acute pain is passed, usually after a long sleep, I’m left with a head that feels physically battered and bruised. I feel fragile and very sore, as if someone has been pummeling my head with their fists. This gradually subsides over a day or two.
7. Slowly after 3-4 days the cogs of my digestive system slowly begin to grind into life once more and things begin to return to normal.
8. Oh and to top it all off, around stage 2, a giant spot (or three) forms on my chin, huge, red and very painful. The toxins literally popping out to say hello any way they can.

This was the story of last week for me.

I ate a, supposedly, gluten free and dairy free pizza whilst at a friend’s house. I suspect the base was gluten free (it was too hard and tasteless to have been wheat filled) but the toppings (despite pertaining to be Jess friendly) most likely were not, or at least had been contaminated in some way. I reacted immediately with bloating and stomach pains and then as the week progressed, the full theory played out.

This is not the first time this pattern has happened for me. A few months ago, Mr B and I ate dinner at a (new to us) local pub. I was ecstatic that this place served gluten free dairy free fish and chips! And the main course was, and has been on numerous occasions since, fine. When I’ve only had the fish and chips I’ve been fine. No reaction. But that first time in my over eager state I ordered the gluten free crumble for dessert. So overjoyed that there was a gluten free dessert, that I forgot the key ingredient to a good crumble topping is of course butter. Dairy. It wasn’t until several spoonfuls down that I made the connection. Oops. And the next day I paid the price with the above theory cycling into action.

There was another time involving sausages at a friend’s BBQ. And another involving crème brûlée (yes I know it’s dairy laden, I was so brain fogged at the time I stupidly thought it was just made from eggs) and another after eating pâté. These are just the incidents that I have recognised and remembered as preceding a severe headache.

The fact it is not usually an immediate reaction is my excuse for why I have not joined the dots before. It was a real light bulb moment when the penny finally dropped last week. ‘I’m so tired, I have a huge spot, I haven’t been to the toilet properly all week, my head is so sore, yesterday I had a migraine’ I complained to my Mum and Sister over Skype. My Mum (always the wise one 🙂 ) asked, ‘what have you eaten?’ And then after a few moments of back peddling through my memory in search of a ‘bad’ meal, I realized. The pizza on Sunday. I bet that will have been it.

I’m not a doctor. And medically what I’m saying may make no sense. But I think from the research and reading I have done on the topic, our digestion is at the heart of our health and when it fails to function optimally, negative consequences show up across our bodies. It may not be headaches and migraines for everyone. But for me I clearly have a vulnerability in that area and too many times now my body has followed this pattern. So for me and my body my theory makes sense. Digestion is clearly the king for me and when he decides to have a day off, it has as huge knock on effect, with the rest of the kingdom going down with him.

Through having ME/CFS I have had it drummed into me to ‘listen to my body’. One of the causes of the severity of my illness was me ignoring all the warning signs that my body gave me. Now ‘listen to my body’ is my mantra. It helps keep ME/CFS at bay. It is not full-proof but it helps most of the time. And now it has helped me identify another symptom inducing pattern at work.

I’m not sure what the solution is to my theory, other than to be uber cautious (even more than I already am) of everything I put in my mouth and perhaps to never eat out again (which is just too restrictive and dull to be a viable option), but now I can clearly see the problem, I’ve got a better chance at finding a solution.

What about you? Do you suffer from headaches and migraines when you eat something wrong?

Do you listen to your body? What does it tell you?