let’s talk about smears

With cervical screenings hitting a 20 year low in the UK, I thought I’d offer my ramblings on the subject.

Having fallen a little behind with mine with being pregnant when I was last due, I plucked up the courage and booked myself in with a (lady) gp (yes, I know most people see a nurse, but I’m not most people and have my reasons for having a gp do it).

Let’s face it, it’s not a nice prospect. Nobody goes along thinking “how lovely, booked myself in for a right little treat, I shall look forward to this”. Nope. It’s blooming embarrassing, slightly uncomfortable/ bordering on painful. Having a cold, plastic implement inserted into you vagina is never going to be a pleasant experience.

But it is quick. And it could just save your life.

That friendly nurse isn’t going to judge you on your choice of socks, compliment you on your fuzz free legs or even notice if you’ve never been to the salon for a ‘tidy up’. Not at all. They have seen it all and in all honesty, won’t even notice. They will just be really pleased you attended.

It’s two minutes. It could save your life. Surely that alone is enough to get you to book yourself in?

Only 4 out of 5 women will get their cervical screening done this year. So ladies, to put it crudely, spread your legs (!) and spread the word.

Check your mates haven’t shoved their reminder letter in their ‘to do’ list and forgotten all about it. Book yourself in today at your usual surgery and get yourself checked. 💞

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Baby sleep training. It’s not for the faint of heart

It’s 1.33am as I lie here jotting down notes for this blog and I’ve had around an hours sleep tonight so far. My youngest is currently being taught that breast feeding is not a substitute dummy and mommy cannot continue on a two hourly waking routine.

If got him into bed around 8.30 and spent an hour on my own watching telly, before realising I was too tired to waste precious sleeping time just sitting around enjoying both children being in bed. I was probably asleep by 10pm.

11.18pm my baby woke. He doesn’t do it quietly. There is no gentle rustling of covers, or slow movement of body as he rouses. This boy bellows. From his boots! There’s nothing like being woken with a start. Worse so when it feels like you’ve been asleep hours, to realise it’s probably only been an hour!

So I lie there, disoriented for a few moments, trying to decide whether he will go back to sleep and how I need to play this. I hate the idea of cry it out method, but I’m fairly desperate now and nothing else has worked. I’ve got chronic fatigue, made worse by lack of sleep and these things combined are having an affect on an autoimmune neurological disease I have, called myasthenia gravis (or MG). To cut a long story short, the going in and out of his room over the next hour to comfort him drives him to tantrum point so I just go and lie on my bed and listen to the sobbing, not really having a clue what to do. I want to break his habit of breast feeding to sleep (my own fault as I’ve done it for the easy life whilst I’ve been struggling with the fatigue), but I hate to hear him like this. It’s heart breaking.

1am I go and scoop him out if his cot. Instantly his wailing stops…and I’m greeted with the biggest smile, a little “hmmmpft” noise of triumph as he pulls his head back to look at me and flashes him famous big grin – and I realise I have just successfully been played by my 9 month old. A Bart and Homer Simpson scene is playing in my head, as I’m pretty sure I muttered “ooh, you little bugger” to my grinning baby.

I spend a few minutes stroking his gloriously soft hair, humming the Mary popping lullaby “stay awake” to him, telling him he is going to have to go back to bed and get some sleep, dreading the fact he will instantly cry when I lie him down. I pop the white noise on, set his little light up frog toy in the cot and lie him down on his tummy. He instantly draws to his knees and throws a deafening wail. I straighten down his legs and start to stroke his back and gently rock his body, stroking his hair. He’s finally relaxing and I’ve not had to give in and feed him yet. Don’t get me wrong, I’m not withholding milk from him, I am still night feeding, I just don’t want to do it every two hours. Once (maybe twice) a night should be enough.

1.28am his little body is drifting to sleep. I can hear his breathing slowing, his little chubby fingers stroking his comforter. He’s asleep. I keep out that bedroom like a ninja. I practically glide across that room, avoiding every creaking floor board and gingerly pull open the door that drags on the carpet. I’m gone free and my bed is a cosy, safe haven. But now I can’t get to sleep! 2.24am is the last time I look at my clock and I’m awake some time after this point, but the baby sleeps…

He woke, all smiles at 7.50!

Let’s just stop pretending our kids are perfect. They are, in fact, little rotters.

If you know me, you know I enjoy using social media. It helps me stay connected with friends and family around the world, snapshot special moments and generally just be a little nosey (admit it, you all do it!).

I love seeing other people’s children, the development as they grow, the many achievements and even the dreaded start of year obligatory new school uniform photos.

I love announcements – babies, engagements, weddings… I’m right there celebrating with you. I really enjoy your weight loss and fitness journeys, high-fiving your weekly lb loss and extra few seconds you knock off your run or add to your distance. Good grief, I even like your food photos and shots of your mugs as you enjoy your daily brew.

But the one thing that really cheeses me off? Pretending you have a perfect child. Seriously.

Yes, yes I get it we are super proud of our tiddleywinks. I love every milestone mine get to, and have the photos (and Facebook posts!) to prove it. But children are not perfect. In fact, most of the time they are little rotters.

For example. This morning I got up late. Shocker. I’ve got a baby that wakes every two hours (you lot who have sleepers, I’m so jealous I don’t even know if we can be friends). Today is my first solo school morning since before Christmas as my husband went back to work today and has done the last two mornings school run for me. I hate morning school runs. Nothing leaves me in a bad mood and screaming like a fishwife like a solo school morning.

So there I am, flying out of bed 30 minutes late, tearing down the stairs yelling for my oldest child to get up. He’s so fast asleep he doesn’t hear me. I’m in the kitchen now, throwing bread at the toaster, kettle goes on and I’m yelling “come on Joe, we’re going to be late”. Nothing.

Tea is made, toast is buttered, baby has marmalade of toast thrown at him in his high chair. “JOSEPH! GET UPPPPP!” *Sleepy head appears at the top of the stairs. “What’s up Mom, I’m sleepy”. Grr.

Anyway, I race the baby upstairs. He now needs a bath as marmalade is in his hair, down his ears, up to his elbows so I do a ‘mini bath’ in the bathroom sink. I have to shower the oldest as I stupidly decided I was too tired last night to do anything so hadn’t bothered putting him in the bath. Can not tell you how much I regretted that at this point. Baby is dried and lying on the floor in the boys bedroom. I turn my back for about two seconds to grab a clean nappy and I the minuscule amount of time he has rolled over, stood up against the bed… and poo’d on the carpet!Flipping poo’d! No warning. None of the usual grunting and winding up, just noiselessly gone about his morning business on the carpet!

More yelling ensues as I bark orders for the other boy child to grab sanitising wipes as I now have to clean the carpet. I then dump the poo covered baby in the (empty) bath so I can refill the sink to re-bath him. I’m not even dressed at this point and I’ve now got to clean a carpet and a bathroom. Through all of this, my happy little chappy is cooing and smiling at me, totally unaware we are certainly anything but friends.

This is the truth. Warts and all and I’m sharing it in social media because I just know that some of you will find it funny and hopefully some of you will laugh about this. Kids are great. And I’m fairly sure it’s the poo stories, the temper tantrum stories and the getting covered in vomit stories we’ll carry with us into our old age and not the ones where we bought them this or took them there… this, yes THIS is real life with kids.

Oh and I did get to school on time. My car wouldn’t start first time and I did consider having a mini melt down, but since then I’ve eaten cake, and my world is rosy again. I will never take for granted those mornings Mr M sorts the biggest boy out and takes him to school. Never.

Now please excuse me as I have to dash off and go and get a clean top on. My perfect little cherub has just thrown up all over me and it’s time to leave the house to collect the biggest boy from school. Here we go again.

Best ever recipe to stop the mid-meal snacking

If you follow me on social media, you’ll know I recently joined slimming world. I’ve put on weight from pregnancy but also the lack of mobility due to my current health means I’m not walking (at all). I also developed a really serious case of sugar addiction during pregnancy. I’ve never had a sweet tooth, but during pregnancy I got rather fond of Greggs donuts (or more specifically, Greggs custard filled, caramel covered donuts), peanut m&m’s and chewy sweets. I couldn’t kick the habit and my sister even joked my baby would be born with foetal sugar syndrome!

In the 5 weeks running up to Christmas, I lost 11.5lb. I even lost half lb Christmas week without feeling like I’d missed out on the treats. One of my ‘go too’ recipes has been a really easy lentil soup. It’s low fat, tastes great and as an added bonus I hardly have to chop or prepare any veg (great for fellow myasthenics who might also struggle peeling and chopping veg) and can have it cooked and eaten within half an hour. Bonus!

Recipe

1 celery stick, chopped

1 onion, chopped

1 carrot, chopped

1/2 tsp garlic powder

1/2 tsp ginger powder

1/2 tsp paprika

150 g dried, red lentil

1 litre stock

Veg stock (I use two veg stock cubes)

Method

Gently fry onion, celery and carrot until softened

Add lentils, powdered ginger/ paprika and garlic and stock. Gently simmer about 20 mins (until lentils are cooked)

That’s it!

Sometimes I add tinned chickpeas, or add frozen, cubed Swede just to bulk it out or slightly change the taste and texture. Super easy.

It’s a really thick, comforting soup, so you feel like you’ve had a nice, filling snack (or meal). It tends to be my ‘first lunch’, which comes after elevenses, but before main lunch, because actually I’m just a really tall Hobbit. A really tall breast feeding hobbit who is never not hungry!

Enjoy.

If you’d like more easy, myasthenia friendly, low fat recipe ideas, join me on my Facebook group – Make a Change.

As one year closes…

I enjoy reading social media posts as we close of another year – some motivational, lots of inspirational posts, some reflecting, the promise of hope for the year… A time to plan and make changes.

For me, this year has seen huge changes. From our family growing with the birth of our beautiful second son, to having to stop working due to the decline in my health, to my eldest starting ‘proper school’. It’s been eventful.

I’m not one for making resolutions but events this year have made me think about things I’d like to do differently, so here’s the list I’ve come up with so far:

1- Read more.

As I was driving with the kids in the car, I heard someone on the radio saying something like ‘read more. It makes you smarter and is the most powerful weapon you can have to make a change’. I think it was a take on a quote attributed to Nelson Mandela about education being the weapon that can change the world. And let’s face it, reading has been shown to be so good for us, in so many ways – increased intellect, escapism, reduces blood pressure and stress, gives us time to just breath… I’ve already got my first two books sorted. I’m going to finish ‘Girl on the train’ as I started after the baby was born and half way in lost track and gave up, so I’ll start it again and complete it this time! I’m also going to read my friends book, ‘Khaos Theory’. I did read his first edition but he’s updated it recently and I need to have a catch up with that. By the way, it’s available on Amazon (and no, I don’t benefit from plugging it, I just think it’s great and more people should read it!)

2- Health

This past 2 years has been a shock to say the very least. Since the miscarriage December 2015, my health has taken a sharp decline. I’m currently registered as disabled – a far cry from where I was at the peak of my health in September 2015. I know there is nothing I can do holistically to improve mg, but I do know that since I’ve changed my eating habits, I’ve lost a good portion of the weight that I piled on in the last 18 months and that helps mentally, along with ridding myself of that horrible sluggish feeling. I can’t do the walking I did previously, so weight control has to be diet lead for now. I do have to be aware of certain food affecting warfarin too, so it’s a little trial and error right now, but I’m 12lb down and feeling motivated to continue. I’m also due to discuss immunosuppressant therapy with my consultant following the recent positive blood test I had for mg. I’ve got high hopes that these drugs can make a huge difference to my daily living.

3- try to get out more

I’ve found I’m going out less and less. It’s getting too easy to just stay home. Partly because the whole getting ready to go out/ wrestling a baby into a car seat/ doing it all in reverse at the other end of the journey and repeating to come home is just too exhausting, but also because I’m very limited on how far I can walk/ how fast/ how safely and I suppose a little embarrassed by it all. The limp, the droopy face, the exhaustion that shows on my face just puts me off facing people and I need to get over that as it’s all to easy to become reclusive. I used to love little walks with my oldest and taking him to visit places and I’m very aware I haven’t done that with the newest Millard. I need to find new ways to do things so we don’t miss out. It’s about making those adjustments, even if it means hiring a wheelchair and not feeling self conscious about doing so.

4- journal. That’s all I’m going to say about that for now.

5- take more holidays. We’ve just purchased a new tent and lots of equipment. I really want my sons to experience new places and enjoy the great outdoors. This year is going to be our adventure.

What about you? Any reflections or plans for 2018? It’s been said you’re more likely to make a change and stick to it if it’s written down. Nows your chance! Happy New Year. I pray it’s a good one x

The Myasthenias – Christmas Wishes for snowflakes

SORRY, NOT SORRY……. many of you know I’ve spent quite a lot of time over the last few years raising awareness of a condition I have called Myasthenia Gravis. You may also know it’s taken until this year to gain a confirmed diagnosis, after initially being diagnosed in 2004.

Today, I, along with over 60 of my fellow ‘snowflakes’ from some of my fb support groups sent an en masse email to the THIS MORNING TV SHOW in an attempt to try and raise awareness of this horrible potentially life threatening disease!

If you’re interested you can read my email below…..

IF YOU WANT TO HELP, PLEASE SHARE THIS TO SPREAD THE MESSAGE! Or email thismorning@itv.com yourself to help us get mentioned on television!😉

Thank you 😊

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The Myasthenias – Christmas Wishes for snowflakes

My name is Amy and I have very rare neurological autoimmune disease called Myasthenia Gravis.

The condition is so rare and misunderstood that it has taken me since 2004 to gain a confirmed diagnosis. There are only 10,000 – 15,000 people in the UK with myasthenia and they are dying due to the lack of awareness and correct treatment from our medical teams.

Myasthenia Gravis means ‘grave muscle weakness’, typically the muscles affected are those used to control the eyes and other facial muscles, the muscles within our arms and legs, and those that control swallowing, breathing and speaking.

I am a 38 year old mum of two young children, my youngest being 8 months old. Two months ago I became registered as disabled due to the massive and rapid decline in my symptoms. I’ve gone from walking 5 miles three days a week too not being able to walk 100 meters unaided – within two years. I’ve had to fight every consultant along the way to gain my diagnosis. And my fight still isn’t over. I am still not in a medication regime that controls my symptoms.

My Christmas Wish is that something can be done to make people aware of these complex, potentially life threatening, illnesses.

Thank you for taking the time to read this email. Please contact me if you would like more information.

Celebrating being ‘positive’

🙌🏽 C E L E B R A T I O N 🙌🏽

I’m giving myself a little high-5 tonight after receiving a letter from the consultant at Birmingham, stating I am positive for an antibody that confirms a type of myasthenia called seronegative myasthenia (I may even be double seronegative, I’ve not got my head around all this new info yet!). It’s a very new test in the U.K, I believe it’s less than 2 years that it’s become available (and is currently only done at Oxford, hence the wait for results), but this is a huge step!

If you remember my last blog, I had pretty much been told by my new neurologist that my symptoms were psychological and he said I didn’t show symptoms of MG. He had suggested I needed counselling, graded exercise therapy and possibly had ME (CFS), rather than the MG I’ve been treated for, for the past 13 years. The whole event had left me feeling completely lost as I struggled to get my head around the idea I wasn’t MG and that it is even possible a traumatic event in my past could be manifesting as a physical issue. I felt no one believed me and started to suffer a slight anxiety at the thought that people thought I was making something up. This new test has put me firmly back where I need to be – fighting for the correct treatment for a form of myasthenia!

His newest letter states he is keeping me on my current treatment regime until he sees me after my CT scan (which I won’t be able to have until I’ve finished breast feeding my son, which is at least April of next year).

We will be pushing for treatment to be reviewed before then as my current state of health (possibly due to poor management) has left me disabled. I believe I could have a treatment called IVIG even when breast feeding, as it is seen as ‘safe’, although I will need to confirm this with the consultant. Again, it’s all new too me.

I’m really interested to find out what my ct scan reveals in the future. I realise it may mean I face surgery, but I’ll deal with all that when we need too. For now, we’ll just tackle getting the treatment I need and rest in the knowledge I’m not actually going crazy!