health · Just for fun · top tips

How To Cope When Dealing With Hospital Administration Systems

Something that no-one realises about chronic illness, until they become ill themselves, is the sheer amount of extra life admin it generates. It’s simply incredible how much time can be taken up by what should be simple tasks – booking appointments, getting hold of medication, finding out test results, getting in touch with the right person if your symptoms change… It can actually become extremely stressful and difficult to cope with hospital administration systems and the issues they can create through sheer inefficiency.

I think the worst instance of hospital administration failure that I encountered was when I was telephoned by the hospital and told off for missing an MRI appointment after my first pituitary surgery. I had indeed missed the appointment, because the letter had got lost in the post. As I had been expecting a scan appointment, though, I had actually called the hospital two weeks earlier to chase up, and been put through to the MRI department, who had told me that I was not booked in for any scans. I later discovered the hospital for some mad reason has two MRI departments, so presumably my scan was with the other department, and at no point did anyone think to tell me to check with both departments. Well done, hospital. Good use of public money.

I was first diagnosed with my pituitary tumor aged 21, which means that I’ve been dealing with the hell that is hospital admin for 11 years, the vast majority of my adult life. And that means that I have a few tips to share!

I used to think that the difficulties I encountered in getting anything done was because I was dealing with the National Health Service. I’m so grateful for the NHS funding my treatment that I would just remind myself to be grateful for it, and put up with the terrible admin, endless phonecalls and feeling of being lost in the system. Then one of my friends developed a serious medical issue which they had treated privately… And they encountered the exact same problems! It seems that terrible admin may well be a universal healthcare experience. So here are my top tips for how to cope with hospital administration, without falling into a pit of total despair…

how to cope with inefficient hospital administration systems without giving in to despair

Top Tips For How To Cope With Hospital Administration Systems

1. Be Organised

You have to be organised. Just because your doctor tells you something will happen doesn’t mean it will, without your intervention. Keep a note of what appointments you’re due to have, and if you haven’t heard from the hospital or doctor’s surgery well in advance, get in touch to check what’s happening.

2. Get Ahead Of The Game

Try to get in touch with your hospital nice and early if you haven’t heard anything. It gives you the most time to get something sorted. There’s nothing more stressful than realising that, for instance, you’re going to have a gap in treatment because the hospital has forgotten to send you a prescription or order the right tests. So make sure you chase up on things sooner rather than later.

3. Remember it’s not anyone’s individual fault

When you’ve made six phone calls and still made no progress with getting an appointment sorted, it’s incredibly frustrating. Try to remember it’s not the fault of the people you’re talking to, who are mostly just human beings trying to do their jobs in an imperfect system. You’ll get better progress by trying to be friendly and build a rapport with the staff you talk to, rather than getting annoyed.

4. Think outside the box

Most hospital departments and doctors surgeries have a public number you can call, but of course when you do, you end up speaking to someone who knows nothing about you or your issue. As a result, you can find yourself explaining yourself over and over again to different people, and feeling like you’re getting nowhere.

It’s time to think outside the box! Firstly, get Googling. In hospitals, often the consultant or head of the department you’re under will have their own secretary and you may be able to find their contact details online, or even on the letters you’re sent from the department. You may have better luck contacting the secretary if you have specific issues with your treatment or new symptoms.

Over time, you may also be able to build up other contacts. Some hospital departments have specialist nurses attached to the department who run certain tests or follow-ups. If you can find the public phone number for the specialist nurses, they may be especially helpful in chasing up on things for you. I love the specialist endocrine nurses at my hospital, they’re so lovely and super helpful.

5. Take up cathartic screaming

Ultimately, despite all your best efforts, your encounters with hospital admin systems will likely still be frustrating and inefficient. At some point, it’s best to accept this and try not to let it get to you. All you can do is try your best to smooth the process, give timely reminders, and chase up on things that should have been organised for you.

Make sure you can have a good rant to a friend or family member about how frustrating it all is. If you find yourself getting too stressed out, try to take a step back and give yourself a break. You can always start making phone calls again tomorrow.

What are your worst experiences with hospital admin? Do you have any tips for how to cope with hospital administration systems? Let me me know in the comments!

baking · food · health · mental health

Baking For Mental Health

You may have heard of art therapy – but have you ever heard of culinary art therapy (or CAT)? Increasingly there’s a move to recognise that cooking and baking can be good for our wellbeing – and there is actual scientific evidence that baking is good for mental health. As you probably know if you read this blog regularly, I’m a big fan of baking (especially gluten-free baking!), so I wanted to explore this further in a blog post looking at why baking is good for our mental health, and sharing some top tips to help you get started with baking therapy…

Baking for Mental Health

Why is baking good for your mental health?

Firstly, let’s look at some of the reasons why baking is good for mental health…

Shifting your focus

Baking requires focus and concentration. You need to find the right ingredients, weigh them out, and run through the process of turning them into delicious baked goods. Baking is also often quite a physical process – activities such as kneading bread, or mixing together ingredients, get our bodies involved as well as our minds. It’s a great distraction that forces your mind away from focusing in on sources of stress and anxiety. It also gives you a sense of control and purpose, paying attention to the present and what’s going on around you. As such, it works as a form of mindfulness, which is a great way to manage anxiety and stress.

Taking Time For Yourself

Baking takes time – whether it’s fifteen minutes to whip up a quick batch of cookie dough, or four hours on a celebration cake. That’s time that you’re carving out of your day for yourself. Taking time for ourselves is an act of self-care that’s really important for wellbeing.

Get Creative

Baking is a form of creative self-expression. As such, it’s a way to release stress and an outlet for emotion. Baking can help us to express our feelings, and getting creative is a recognised way to manage mental wellbeing. Repetitive creative motions – like baking, knitting, or even DIY – actually help your brain release dopamine, the ‘feel-good’ chemical.

Engage your Senses

Baking engages all the senses – sight, sound, touch, taste and smell. Engaging those senses is pleasant and uplifting, and can also reawaken fond old memories and associations – such as baking as a child. And of course, we all enjoy biting into a lovely slice of cake at the end of the baking process (and maybe licking the spoon beforehand as well!).

Share the Love

One of the aspects of baking that can be so satisfying is the opportunity to share what you make with other people, friends and family. Making other people happy is itself tremendously rewarding – and who doesn’t feel happy when they’re presented with a slice of homemade cake, or a cookie? Gift-giving is an important part of human cultures across the globe, and interestingly studies have shown that it is actually often the person giving the gift – rather than the one receiving it – who reaps the greatest psychological benefit from gifting. It helps us to feel valuable and experience a positive self-concept, increasing self-esteem – so it’s not surprising that sharing our bakes is good for our mental health.

Baking for Mental Health: How To

So, you’re convinced about the benefits of baking for mental health. You’ve decided to give baking therapy a go, and you want to get on with it. But how do you actually make it work? Here are some key pointers to get you started.

Low Pressure Baking

Baking is not going to help reduce stress and anxiety if it becomes a high-pressure situation. For instance – baking a birthday cake, or agreeing to create dessert for a large dinner party, or host afternoon tea, places a lot of pressure on yourself. That creates more stress and anxiety. Instead, keep your baking low pressure by baking for yourself, in situations where it doesn’t really matter if the outcome is wonderful or if you burn the brownies.

Keep It Simple

Linked to the above, following incredibly long and complicated recipes is only going to work as good therapy if you’re already a very advanced baker. Try to start with simple recipes, and learn new techniques one at a time rather than trying to take them on all in one go. When I’m feeling in need of a bit of baking therapy, I generally try to go for straightforward recipes that yield yummy, satisfying results, like these gluten-free oatmeal raisin cookies, these mochaccino brownies, or this delicious rocky road recipe. Let’s be honest – if baking therapy is a thing, then chocolate therapy is most definitely real as well.

Maintain A Sense Of Humour

Bakes go wrong. This can be really frustrating. The other day, I was planning on making raspberry macarons at home. I’ve made macarons a bunch of times, but this time it went horribly wrong (I still don’t really know why!) and I had to throw out the entire batch and start again. And, if I’m honest, it put me in a godawful mood. All the fun went out of it – especially when the subsequent batch I made were still not really up to scratch, even though they tasted pretty good. It was the ultimate baking therapy failure: I ended up in a worse mood than I started in.

What did I do wrong? Not maintaining a sense of humour! Bakes go wrong. It shouldn’t be a big deal. Try not to let it stress you out, and try not to go into each bake with super-high expectations. Take a picture of the horrible mess you’ve created, text a friend or post on social media, and have a good laugh at yourself. You’ll live to bake again another day, and if you find yourself getting stressed out by your bake rather than enjoying it – just stop!

Bake Vicariously

Okay, so baking may be great for your mental health – but let’s be honest, it’s not always practical to crack out the mixing bowl. Whether you don’t have the energy, the time, or simply the drive to actually get baking, there is a Next Best Thing. You can bake vicariously with the aid of The Great British Bake Off (known in the US for some reason as The Great British Baking Show).

Don’t get me wrong, other baking shows are available. But I haven’t found any that have the charm of Bake Off. There’s something very lovely about the camaraderie of the show, and it’s a great form of escapism that will get you weirdly involved in the process of creating types of cake that you’ve never even heard of.

Baking Therapy: Your Experiences

Are you a keen baker? Have you found baking to be a great form of expression and therapy? Let me know your thoughts in the comments!

baby · fatigue · health · pain · parenting · top tips

How To: Looking After A Baby When You’re Sick/Fatigued

Looking after a baby is hard work at the best of times, but when you’re sick it can be overwhelming. Whether you’re parenting with chronic illness, a bad cold or tummy bug, or fatigue (either from illness or too many sleepless nights!), it helps to have a plan for how you’re going to manage. So, based on my experience as a mama with chronic illness, I’ve pulled together my top tips on looking after a baby when you’re sick or fatigued. Read on to find out more…

looking after a baby when you suffer from chronic illness or you're sick top tips the sickly mama

Looking After A Baby When You’re Sick

Ask For Help

Whether you’re suffering from a temporary issue – a cold, a tummy bug, a flare up of your condition – or ongoing consistent symptoms from a chronic illness, ask for help. It’s okay! Even the healthiest, heartiest parents need help sometimes. It won’t do you any good to try to do everything yourself. And people love babies, so chances are you’ll have more people willing to help you out than you may imagine… But you do have to ask.

When you do ask for help, try to be specific about what you need – for instance, help around the house, fetching groceries or popping to the pharmacy, or just holding the baby. Most people will want to help if you let them know how. If people have popped over to see the baby, get them to help you out – for instance, they could hold baby for an hour so you can nap!

Do The Absolute Minimum

Again, might sound obvious. But if you’re feeling really unwell, do the absolute minimum you need to do. Things like the washing up, hoovering, tidying, even having a shower… You don’t absolutely have to do them. You need to feed yourself and baby, change baby, and sleep. Everything else is optional! So don’t force yourself to do anything unnecessary, if you don’t have the energy for it.

This may include cancelling on some guests, especially in the early days with a new baby. If people are planning to visit and you don’t think they’ll be helpful – or perhaps you know they won’t – and you’ll end up running around after them trying to be a good host and look after baby and yourself… Cancel the visit. You need to prioritise the well-being of yourself and your baby, and that’s okay.

…Except When You’re Okay

On the days or times where you are feeling better, that’s the time to prepare for the bad days! This may seem more obvious if you have a chronic health condition where the symptoms come and go – but even if you don’t, there will be good days and bad days. You never know when you might catch a cold or flu, or have an upset stomach, and even babies who are normally good sleepers will go through bad patches. So make sure that you’re prepped for bad days.

What does being prepared look like? Here are some suggestions:

  • A stash of easy emergency meals in the freezer – things you can just pop in the oven/microwave and leave.
  • An upstairs and downstairs nappy change station with everything you need for changing, so you don’t have to carry baby too far for changes.
  • A small stockpile of key items for baby (nappies, wipes, formula etc.) that will last for at least a week, so you’re not going to run out and need to go to the shops urgently when you’re feeling sick and/or exhausted.
  • Similarly, try to ensure you have a good stock of spare clothes for your little one, so you’re not going to end up in a pickle if you can’t do laundry for a few days.
  • Talking to your partner, friends and family about how you will manage childcare on sick days, in advance. Have a back-up plan if you are just too poorly to look after the little one – and ideally have a back-up back-up plan just in case!

Practice self-care

Just scraping by will do for a few days here and there when you’re feeling especially dreadful, but it’s not sustainable for the long term. You need to take care of yourself and your mental and physical health.

So, once you’ve worked out what the absolute minimum is, have a think about the next step up – the minimum things you need in order to feel reasonably content. For instance, in my case, I absolutely hate not having a nice hot shower in the morning. Even if I feel rubbish, I know a shower always helps me feel better. So I really prioritised ensuring I got my morning shower every day, as far as reasonably possible. Little Man would be on the bathroom floor in his Moses basket when he was really small, or crawling around with a few toys and a baby sensory video once he was a bit bigger.

Work out your key self-care priorities – perhaps it’s having a shower, listening to music or watching a show, reading a book or getting outside for some fresh air once a day. And make sure you find time to do the things that help you feel okay, even if it’s at the expense of other day to day life admin.

Rest as much as possible

Before you have a baby, everyone tells you to “sleep when the baby sleeps” which in my experience is much easier said than done. If you can get some sleep when baby is napping or someone else comes to help out, then obviously that’s the best thing you can do. But even if you can’t sleep, you can try to rest up. Set up a comfortable spot in the house to have as your base for the day – an armchair, sofa, bed, whatever suits you – and collect as much stuff as possible that you’ll need for looking after baby to keep nearby. Not just obvious things like nappy change supplies, but also toys, books, whatever you’ve got to keep the little one entertained. Try to sit and chill as much as you can.

And when baby goes to bed for the night – go to bed too! It’s tempting to stay up and take some time for yourself, but you’re better off going to bed and getting as much sleep as you can before your next wake up call.

Let go of the mum/dad guilt

When you’re ill, you will not be winning any parenting awards, and that is fine. You need to keep baby safe, clean and fed. If they miss out on a few sensory play sessions, or they spend a bit more time watching YouTube videos to give you a break – it really will not matter in the long run. They need a parent who takes care of him/herself, and if you don’t do that then sooner or later you will crash and end up much worse than before.

No parent is perfect, whether they suffer from chronic illness or not, so just do your best to let go of the guilt about what you can’t do because of your illness, and focus instead on all the positive things you can do, however small, to help your baby feel loved and cared for.

Your tips for looking after baby when you’re sick

Do you have any experience of looking after a baby while ill? What are your tips for others? Let me know in the comments!

looking after baby when sick parenting with chronic illness the sickly mama blog newborn
baby · health · parenting · teething · top tips

How To Brush Baby’s Teeth (Without Losing A Finger)

It seemed like Little Man was teething for forever before his first tooth appeared! He started teething around three months, and he didn’t get his first tooth until he was gone six months old. It wasn’t until a little while after his first tooth arrived, though, that I realised… Hang on, we need to brush it! But how exactly do you brush a baby’s teeth without losing a finger? Wee Man’s first teeth are like tiny razors, and he once notoriously bit his dad so hard on the toe that he drew blood. We were not looking forward to trying to brush his teeth…

how to brush baby's teeth without losing a finger toothbrush baby the sickly mama blog parenting top tips

How To Brush Baby’s Teeth (Without Losing A Finger)

When should you start brushing?

As soon as that first baby tooth appears, it’s time to start brushing (oops! Took us a few weeks to realise). The NHS recommends brushing twice a day, including before bed in the evening, with a smear of baby toothpaste.

What makes baby toothpaste different and do I need it?

Baby toothpaste has less fluoride in than adult toothpaste. Swallowing a lot of fluoride may upset baby’s stomach in the short term, which is why it’s recommended to use only a smear of toothpaste on the brush.

Over the longer term, swallowing large amounts of fluoride toothpaste in early childhood could cause something called dental fluorosis, which can affect the appearance and strength of teeth. However, it is rare in the UK for dental fluorosis to be anything other than very mild, appearing as some white patches on the teeth which may or may not be visible to the naked eye. It is still recommended that children and babies do brush their teeth with a fluoride toothpaste, because it’s the best way to prevent tooth decay. Just don’t let them eat toothpaste straight out of the tube!

Baby toothpaste also often has a milder flavour which children may find easier to get used to, compared to the strong mint flavours of adult toothpaste.

How do you brush baby’s teeth?

And so, to the practicalities… How do you actually brush baby’s teeth?

Firstly, sit baby on your knee, with their head back against your chest (I got this tip from the NHS website!). We use a bamboo baby toothbrush, to try to reduce our plastic waste.

Brush baby’s teeth using circular motions, just like you would an adult’s teeth. Don’t restrict yourself to brushing the teeth they actually have, but brush their whole mouth and gums gently, to get them used to the idea.

Making tooth brushing fun for baby

Obviously tooth brushing is a bit strange for baby when you introduce it, so I think the best approach is to really try to make tooth brushing fun. We sing a little song to our baby while we brush his teeth and that seems to be a really good way to distract him! In fact, he enjoys it so much that he now looks forward to having his teeth brush and co-operates with opening his mouth, handing over his dummy etc.

Ideally if both me and my husband are free, one of us brushes his teeth, and the other one dances Little Man’s hands around to the song, as otherwise he tries to grab the brush. We sing the following song, to the tune of ‘Row Your Boat’:

Brush, brush, brush your teeth
Brush them nice and clean
Scrubbly-bubbly, bubbly-scrubbly
Brush them nice and clean

We actually got the idea from the Peppa Pig handwashing advert from the World Health Organisation, if you’ve seen it! We sing through the song three times and the last time we slow it right down so he knows we’re nearly done. After a couple of months of this routine, brushing Little Man’s teeth is not just easy, it’s actually quite a fun thing we do as a family.

I let Little Man take over the toothbrush after I’m done brushing, and he enjoys chewing on it. Then when it’s time to finish, I distract him with a dummy while I take the brush away, and we both watch as I clean the brush under the taps.

So for us, this approach seems to work pretty well. Little Man likes to feel involved and he seems to enjoy the flavour of the toothpaste and chewing on the brush is nice when he’s teething. He does often bite down on the toothbrush while I’m trying to move it, and he also often tries to grab the brush from me, which can be tricky! But in general, starting to brush his teeth has not been as horrendously difficult as I expected!

Your Top Tips For Brushing Baby’s Teeth

Do you have any great tips for persuading a reluctant baby to let you brush their teeth? Let me know in the comments!

how to brush baby's teeth without losing a finger toothbrush baby the sickly mama blog parenting top tips
health · top tips

How To Cope With Having A Mystery / Undiagnosed Medical Condition

I’ve previously written about how it feels to have a mystery or undiagnosed health condition. This post follows on from that, and looks at tips and strategies for how to cope with undiagnosed illness or while managing an unknown medical condition.

tips for how to cope with undiagnosed illness the sickly mama blog

Tips For How To Cope With Undiagnosed Illness

1. Acknowledge and talk about your feelings

Having a mystery health condition is really hard and stressful. It’s completely natural and normal to feel sad, frustrated, angry, stressed out and more. Trying to keep your emotions pent up isn’t healthy. It won’t help you cope with undiagnosed illness, and it won’t help you feel better in the long run. Give yourself a chance to feel those emotions, and accept the way you’re feeling.

Ideally, talk to someone – a friend, family member or partner – about how you’re feeling. Not only will it help you deal with your emotions, but it will also help them to understand what you’re going through.

2. Communicate your needs

One of the most common complaints from people with chronic illness is that other people don’t understand what you’re going through. It can be especially upsetting and frustrating when it seems that the people closest to you don’t understand – or worse, that they’re not even trying to understand how you’re feeling. You can end up getting that your needs are sidelined or ignored, or that no-one is prepared to help.

Remember that the only way that people will understand is if you tell them. Try to be proactive about communicating and give people a chance to listen to how you’re feeling and what you need from them. I remember a few weeks after my first brain surgery, I had to travel across London. I was very wobbly and it was my first time out on my own, but outwardly I looked like a normal 21 year old.

At King’s Cross station, it was very busy but thankfully I got lucky and found a seat while waiting for my train. Everyone else with a seat in that area was middle aged or older. An elderly woman walked up and stood nearby, and started giving me angry looks and clearing her throat. Clearly she expected me to give up my seat for her, as the youngest person there. But she never actually asked for it.

If she had asked, I would have explained that I really needed the seat, and probably someone else nearby who wasn’t in such need would have offered her their seat. But she never actually asked, so I never explained, so she never got to sit down. No doubt she thought I was incredibly rude, but she didn’t communicate her need, so no-one accommodated it. This really drove home to me the importance of asking for what you need. You might not get exactly what you’re going for… But if you don’t ask, you’ll get nothing at all.

Be specific if you can – for instance, rather than saying “I get very tired and need to rest”, you’ll get better results from saying “I get very tired and can’t be on my feet more than about ten minutes at a time. Then I will need to sit down for half an hour”. You may think that your emotions and needs should be blindingly obvious to anyone with half a brain… But it’s not always the case.

3. Be kind to yourself

Remember to be kind to yourself. When you’re frustrated and stressed and finding it hard to get things done, it’s easy to push yourself too hard and forget to give yourself a break. But it’s important to look after yourself and your mental health. Don’t spend all of your available energy doing life admin – make sure you occasionally have time to have a bath, read a book, chat to a friend, or whatever it is that you enjoy.

But being kind to yourself isn’t just about having a spa day. It’s also about listening to your body and believing in yourself. When you’re experiencing medically unexplained symptoms, it can be easy to start worrying that they’re all in your head. When there is no label that explains the symptoms you’re experiencing, you may feel that people don’t take your illness seriously – or that you shouldn’t be severely affected by it. Try to remember that a diagnosis is not a permit to be ill. You don’t need permission to be sick. Your experiences – your pain, fatigue, whatever other weird and wonderful symptoms you’re experiencing – are real. And you need to listen to your body and its needs, and take care of yourself.

4. Be your own best advocate

It’s a hard truth that when you have a chronic illness, the one who cares most about finding a diagnosis and a treatment is YOU. Yes, it’s your doctor’s job to work out what’s going on, but no matter how committed your healthcare providers are, at the end of the day it’s just that – a job to them. Whereas to you, it’s your life.

Don’t be afraid to advocate for yourself. That is likely to mean different things to different people. It might mean chasing up those appointments that are slow to arrive, or those test results that no-one seems to want to discuss. Or, it might mean having the persistence to keep going back with the same symptoms that no-one seems to want to investigate, or pushing for a second opinion . It might mean using these techniques to get your doctor to listen to you. Whatever you need to do to push your best interests.

5. Seek out support to help you cope with undiagnosed illness

You don’t need to do it alone. Don’t be afraid to ask friends and family for support. It can be difficult to find external support networks, because most charities and support groups focus on specific illnesses… Which is difficult if you don’t know what illness you have. But support is out there for the undiagnosed.

You can join Facebook support groups such as Undiagnosed Illness Support Group or Undiagnosed Chronic Illnesses… And many more. Equally, you may wish to look online for ways to connect with people who experience similar symptoms to you, even if you don’t have a diagnosis yet.

Do you have any tips on living with an undiagnosed medical condition or mysterious unexplained symptoms? What are your recommendations for how to cope with undiagnosed illness? Let me know in the comments!

food · health · Just for fun · Seasonal

Brussels Sprouts: A Festive Safety Warning

Now, there are apparently some people in this world who actually enjoy Brussels sprouts, and they will insist on saying things like “it’s not Christmas without sprouts!” and “they’re incredibly good for you, you know!” BUT ARE THEY? I have always believed that Brussels sprouts are the work of the devil, and now it turns out I may well be justified in that belief. So I’m sharing this festive Brussels sprouts safety warning with you: these little green vegetables are dangerous…

brussels sprouts safety warning festive christmas hospital blood thinner vitamin k sickly mama blog

Brussels Sprouts: A Festive Safety Warning

Brussels Sprouts Overdose: The Facts

Back in 2011, a man was hospitalised at Christmas after overdosing on Brussels sprouts. Yes, really. You see, sprouts contain vitamin K, which the body uses to help with blood clotting. This can be a problem if you’re on medication to stop your blood clotting (a.k.a. blood thinners or ‘anticoagulants’ – like warfarin, which you may have heard of). All the vitamin K counteracts the effect of this medication.

The man in question suffered from chronic heart failure, and had been fitted with an artificial pump in his heart, while he was awaiting a heart transplant. It’s normal for patients in this situation to take blood thinners, and he was prescribed warfarin and his blood was monitored to check it wasn’t clotting too easily. All was well for four months, when the festive season approached. Suddenly, blood tests indicated that the man’s blood was clotting much too quickly. The doctors increased his warfarin, but it kept getting worse and worse. They told him not to eat too many leafy green vegetables due to the vitamin K content. But nothing seemed to help. Three days after Christmas, he was admitted to hospital.

While in hospital – eating hospital food – things started to improve. Eventually, under (presumably) intensive questioning from his doctors, he finally admitted that he’d been eating Brussels sprouts three or four times a week during the festive period. But not just that. Oh no. He’d been eating 15 – 20 Brussels sprouts at a time. That means he was munching down around 45 – 80 sprouts PER WEEK.

Now, I have some sprout fans in my immediate family, and they’ve long tried to convert me to eating this appalling vegetable. But I have never met anyone who loves them so much they’re guzzling down 20 sprouts a day (unless they’re so rightly ashamed of this sick behaviour that they’re hiding it from me, I guess). Anyway, the point is: not only are sprouts gross, they’re also potentially little green balls of death, so heed my festive Brussels sprouts safety warning and steer well clear.

Why do I hate sprouts so much?

Random side note: the the hatred of Brussels sprouts is, in fact, genetic (or at least, probably genetic). Those people who have this gene can taste the bitter and hideous taste of a chemical called phenylthiocarbamide, which is extremely similar to a chemical found in brassicas, like Brussels sprouts. And cabbage, broccoli, cauliflower… pretty much all the vegetables I and so many other sensible people hate. So if you’ve ever been sat around the Christmas dinner table, watching your family guzzling down sprouts and wondering: why do I hate Brussels sprouts so much? Now you know!

health

What It’s Like To Have A Mystery/Undiagnosed Illness

Today I’m going to be talking about coping with having an undiagnosed illness – one where the doctors can’t work out what’s wrong (or may even not believe that anything is wrong at all).

I think I’m pretty well equipped to write about this subject; it took years for my brain tumor to finally be diagnosed, including almost a year where I had a resting heartrate of 140 beats per minute (for context, about 60 – 100 bpm is normal, so that’s pretty darn fast) for no reason that anyone could explain. Then, more recently, after I gave birth to my son I experienced unexplained thyroid issues that took a number of months to diagnose.

What it feels like to have an undiagnosed illness

what it feels like to have a mystery undiagnosed illness the sickly mama blog

Having an undiagnosed illness is really stressful (unsurprisingly). It can be helpful to break down and acknowledge some of the key reasons why that is the case, and you may find this list helpful to share with family and friends if they’re struggling to understand what you’re going through. I’ve also written a follow-up post with tips to cope with having a mystery health condition.

The uncertainty is frightening

Often the options for what’s causing your symptoms may include life-changing and/or life-threatening illnesses, such as cancer. It’s very scary to live with the threat of that hanging over you, and it will affect those closest to you as well. It can be difficult to carry on going with your day to day life with that fear constantly in the background.

It’s surprisingly busy and tiring to manage healthcare tests and appointments

It is stressful, unpleasant and often exhausting to go through repeated sets of diagnostic tests. Not to mention that it can feel like a full time job to be constantly chasing up the hospital for test results, next steps plans, and appointments.

It’s hard and depressing having to adjust to having to change short and long term plans

You may have to make changes to your life or future plans based on your symptoms, with no idea whether you will ever be able to go back to how things used to be, or whether your plans will ever be achievable. It can be depressing feeling “left behind”, especially when new symptoms that you initially hope will clear up quickly seem to be sticking around indefinitely. You may feel like you’re mourning the loss of long-held ambitions or dreams.

It’s tiring to keep people updated

Friends, family and employers expect regular updates and it can be difficult to keep telling people that you still don’t know what is wrong.

You can end up minimising how sick you really are

In the absence of a diagnosis, it can be easy for other people to (purposely or unconsciously) minimise or be dismissive of how sick you really are. It can be difficult to get enough support, and it can be frustrating and upsetting to find that people close to you don’t seem to be taking your illness seriously, or even forget about it at times.

Linked to the above – it can be easy for YOU to underestimate your illness. It’s easy to beat yourself up for not getting things done or not keeping up with your normal routine, when there’s nothing “officially” wrong with you. You may worry that nothing is really wrong, that you’re just lazy, or weak.

what it feels like to live with an undiagnosed health condition or mystery illness the sickly mama blog

You can feel like no-one is listening

You may feel that friends or family members don’t understand what you’re going through, but it can be even worse if you feel that your doctors themselves don’t take your symptoms seriously or are not listening. It can be very depressing and stressful to keep going back to your doctors trying to get them to investigate your symptoms.

l’ve written previously about techniques you can use to get your doctors to listen to you, which you may find helpful.

It can be hard to manage existing responsibilities

It may become hard to manage your existing responsibilities – not just work, but parenting or caring responsibilities, or even smaller things like managing bills, life admin and keeping the house clean. Tasks that haven’t been done can build up, causing a high level of background stress and/or guilt about not doing a good enough job.

Money worries with undiagnosed illness

Chronic illness often brings money worries with it. Depending on where you live, you may be dealing with stress and worry about medical insurance and whether it is likely to cover the cost of your diagnostic investigations and subsequent treatment. But sickies everywhere will worry about employment, having to take time off work, and whether continuing to work is realistic in the long term, given your symptoms.

Your Experiences of Mystery/Undiagnosed Illness

Phew! That’s a lot to deal with. Have you experienced living with an undiagnosed or mystery health condition? How did it make you feel? Let me know in the comments! I’m planning on following up this post with a look at coping strategies for mystery conditions, so let me know your thoughts.

baby · coronavirus · health · parenting

Getting A Covid 19 Coronavirus Test For Your Baby

So the other day, when Little Man came home from nursery, he had a bit of a runny nose. He was unsettled overnight, and in the morning was very snotty – like a fountain with a bad algae infestation – but seemed happy enough, so he went off to nursery in the morning as usual. Then, just after 10am, the nursery called to say that as he’d been coughing, they needed to send him home. And we needed to get a coronavirus test for our baby.

Nursery weren’t really worried that he had coronavirus; his main symptom was a runny nose, which isn’t usually a symptom of Covid – but as he’d been coughing of course they had to play it safe. My husband booked Little Man in for a Covid-19 test, and I took him off to the testing site in the afternoon. I thought it might be helpful to share our experience, because I really didn’t know what to expect with getting a baby tested for coronavirus, and to be honest some aspects of the process were a little baffling! It would have been helpful to read about someone else’s experience before we went. So here goes…

SPOILER ALERT: As we suspected, when the results came back they showed that Little Man did not have coronavirus, just a nasty cold.

getting a covid-19 coronavirus test for your baby in the UK my experience the sickly mama blog parenting

Getting A Covid 19 Coronavirus Test For Your Baby

Booking the test

You can’t just turn up to a Covid testing site and expect to be seen. Instead, you have to book a testing slot in advance, which you do via the .gov.uk website. Testing is free on the NHS if you have one or more of the main symptoms of Covid-19.

My husband actually booked our test slot while I was off picking up Little Man from nursery. You can book up to three household members in together for testing, and the process is pretty straightforward. After giving your postcode, you’re informed of your nearest coronavirus testing site – we were lucky to have one very close by. You could select a drive-through test or a walk-in test, and I went for the latter as it seemed more practical with a baby. You can pick a half hour long time slot for your test, and they tell you that it shouldn’t take longer than an hour. Fortunately for us, there were lots of free timeslots, so we could select a time that suited us right after Little Man has his lunch.

The website tells you that at some sites, you have to do the Covid swab yourself, while at other sites people do it for you – but it doesn’t tell you which one it’s going to be, based on the location you pick. We were also told to bring photo ID, although in the end no one actually asked to see it.

covid test site sign coronavirus UK testing site qr code drive through walk in the sickly mama blog

Finding the coronavirus testing site

I didn’t have a problem finding the test site itself – the problem came after we arrived. The testing site was set up in a car park. Not especially surprising for a drive-through testing centre. However there was no signage to indicate where to go for a walk-in test. I wandered around a bit, looking for a sign, being completely ignored by the staff there, and eventually gave up and just walked into the drive-through test entrance.

This attracted enough attention that someone finally came over to help. They seemed surprised to see someone coming for a walk through test, but took me to a table to one side of the car park, and told me to wait…

The Covid-19 Self Test Pack

I was given a sealed pack that contained various items – a swab (basically a cotton bud or Q-tip), tissue, plastic tube, two sealable plastic bags, and a set of instructions for how to conduct a Covid-19 Self Test.

The instructions were fine, but they’re not designed for getting a Covid-19 coronavirus test for your baby. In fact, all the instructions said on the matter was: “Children aged 11 and under – Adult to test child. Use the supplemental instructions to help you do this“. Fine… Except that I wasn’t given any supplemental instructions. Hmm.

I asked a member of staff, who said that he thought that you just needed to swab one nostril for young children – grown-ups have to swab their tonsils and nose (in that order, fortunately). I’m not sure whether the “supplemental instructions” on swabbing young children would have gone into more detail, but I do think it seems daft to have a separate set of instructions instead of just printing them all in one place.

I also think it would have been helpful not only to have actually had a copy of specific instructions of how to administer a Covid-19 coronavirus test to a baby, but to have had them in advance of going to the test site. If you knew what you were going to be asked to do, you could plan better how best to bribe/trick/otherwise deceive your baby into complying with the test. As it was, when we went to the site I didn’t even know that I would be asked to swab Little Man myself, let alone the details of what that would involve.

covid-19 self-test step by step guide UK government instructions coronavirus leaflet the sickly mama blog

Conducting A Covid 19 Coronavirus Test For Your Baby

What I had to do:

So, I had to sanitise my hands carefully, swab my baby’s nostril – according to the adult instructions, ideally for 15 seconds and quite deep into the nostril until you feel resistance… It didn’t sound super achievable, when you consider that Little Man screamed, cried, grabbed my hands, and sometimes tried to bite me most times I just attempted to wipe his runny nose with a tissue.

Then I had to break off the long end of the swab, put it into the plastic tube without spilling any of the liquid in the tube, put that and an “absorbent pad” into a Ziploc bag, put that bag into a sealable biohazard bag, and put that bag into a box. Yay.

The Complications:

Did I mention the fact that it was a windy day? And that I was sat at a trestle table in the middle of an exposed car park, with nothing to provide a wind break, and handfuls of plastic bags, loose pieces of paper, and other objects that seemed designed to fly away at any moment. Oh, and nothing to weight them down with.

The inevitable did of course happen, and half my Self Test Pack ended up scattered across the car park by the wind while I was trying to unpackage the swab. So then I had to scurry around trying to collect them all up in one hand without contaminating the swab in the other, which was super fun.

How it worked in practice:

I distracted Little Man with a toy he hadn’t seen for a while, which got his attention enough that I actually managed to wiggle the swab around fairly deep in his nostril for about seven or eight seconds before he started protesting.

When the swab came out it was very snotty (eurgh, sorry). I wasn’t sure if this would be an issue, as the instructions for adults tell you to blow your nose beforehand so that the test won’t be ruined by too much mucus. The guy at the test centre said it wouldn’t be a problem though, and we got the test results fine so I guess it wasn’t!

Getting your Covid-19 test results:

The results took just under 24 hours to arrive. My husband was sent the Covid test results by text message and email, which was handy as we had to send the nursery a copy of them. Happily, as we had suspected, Little Man’s test came back negative – he’s just had a nasty cold, not the ‘rona.

UK coronavirus covid-19 test site drive through walk in tests car park centre the sickly mama blog

My tips for other parents getting a Covid-19 coronavirus test for your baby

I think that the drive-through test option is probably easiest if there’s two parents on hand, but the walk-in test was much easier for me to manage with Little Man on my own. You’re not supposed to leave the car during a drive through Covid-19 test, and I wouldn’t fancy clambering into the back of the car to try to swab a baby in a car seat that’s facing the wrong way.

BUT. The wind did make the walk in test way more challenging than it needed to be, and it would have been even less fun in the rain, so check the weather forecast before you decide! If you do go for a walk in, expect to be outside the whole time, and take enough warm clothes for you and the baby.

If you’re getting a Covid-19 coronavirus test for your baby, I would take along some form of guaranteed distraction for the actual swabbing process – either a favourite toy they’ve not seen in a while or a favourite item of food. If you go for food though, make sure it’s something that will take them a little while to eat, like a breadstick, because the process is fiddly and takes a little while. If you’re in a car I guess you could even try to distract baby further with a baby sensory video on YouTube or similar.

getting a covid-19 coronavirus test for your baby in the UK my experience the sickly mama blog parenting

Your experiences of getting a Covid-19 coronavirus test for your baby or young child

Have you had to get a Covid-19 coronavirus test for your baby or young child in the UK or abroad? What was your experience? Let me know in the comments!

baby · health · hypermobility · pain · parenting · top tips

Looking After A Baby When You Have A Joint Condition

As a mama with hypermobility spectrum disorder, I have rubbish joints! How rubbish they are tends to vary from day to day and even hour to hour. Some days I don’t notice any problems – other days when my hands are very stiff and sore, I struggle to open jars; or I’ll find that my hip or shoulder keeps popping out of the socket, or everything will just be very achey and stiff. But how do my rubbish joints affect looking after a baby? I’ve written a little about being a hypermobile mama previously, but it seems time to do something a bit more comprehensive on parenting with a joint condition…

And so, here are my top tips, focused around looking after a baby when you have a joint condition, from the newborn stage through to when they start toddling. Hopefully this guide will be useful to other parents with hypermobility spectrum disorder, EDS, arthritis and other joint conditions. If you have any tips you think I’ve missed, let me know in the comments!

Looking After A Baby When You Have A Joint Condition

Feeding your baby comfortably

Whether you’re breastfeeding or bottle feeding, especially during the newborn days you tend to spend an awful lot of time feeding and burping baby. Spending a lot of time in the same position is often uncomfortable if you have dodgy joints, and the limited range of feeding positions – and the fact that you don’t want to disturb a baby who’s happily feeding, by having to move them – can also be an issue.

Tips: Have a comfortable chair or spot in your house for feeding, which is set up just for you. I had a cosy armchair with a couple of cushions for back support, a footrest for my feet, and a spare cushion nearby which I could put under my arm or under Little Man to get us both comfortable. Having my arms supported definitely helped me. If you’re breastfeeding, there are different positions you can try to see what’s easiest for you. If you’re bottle feeding and struggling with holding a bottle, there are devices you can use for hands-free bottle feeding which clip on to a car seat or bouncer.

Poppers or buttons on baby clothes

Okay if you have terrible hands, these are THE WORST. I know lots of people hate poppers, and I know I’ve written about how I hate buttons on baby clothes previously; but as I love to labour a point and we have moved into the colder weather – which always makes my joints get even more stiff and achey – I just have to say it again. THEY SUCK. It’s hard enough to get my wiggly Little Man to stay still long enough for a nappy change, let alone while mama struggles to undo and then do up 5,000 poppers on the legs of his suit. Poppers/buttons are no good if you’re parenting with a joint condition!

Tips: All baby clothes should be mandatorily done up with zippers or, at a push, velcro. Obviously, I have yet to succeed in getting this written into UK law. And unfortunately it turns out that for some reason baby clothes with zippers are both hard to find and often really expensive. So my tip is: before the baby arrives, tell everyone who might buy you a gift that you want ZIPPERS damnit, and let them pay for it!

Alternative tip: Ask your husband/wife/partner/friend nicely if they can help with the damn poppers.

Hanging out on the floor all day

Turns out, having a baby means a lot of time spent hanging out on the floor. For me personally, getting onto the floor is fine, but it tends to be when I try to get up that I suddenly discover that I’ve been sitting with my joints in odd positions without realising it, and everything hurts. Oops. And the older Little Man has grown, the more time we’ve ended up spending crawling around together on the floor.

Tips: There’s not really much to be done about this one, unless you can persuade your baby to learn to fly! I tried bringing a cushion on to the floor with me, but once Little Man started crawling it was too much bother to keep moving the cushion around with both of us. My best advice is to think about specific activities that can be done away from the floor. For instance, a tabletop changing table might help for nappy changes, or bathing baby in the sink rather than in a tub on the floor. You can also look at getting a raised Moses basket and/or cot, so that you’re not having to stoop to and from the floor at nap time or when baby is very small and spends most of his/her time dozing.

Lifting and moving baby

I’m fortunate that although my joints are often painful and stiff, I tend to be okay with lifting and moving Little Man, but of course there are lots of joint conditions that could make it much more difficult to lift and move your baby around the house.

Tips: Using a sling or baby carrier is great, especially for the newborn phase, as you can take baby with you around the house without having to do lots of lifting, and spreading the weight evenly across your shoulders and back. Be careful though with using these aids if your joint condition makes you more likely to trip or fall – if that is the case, it may be safer to avoid using carriers. Make sure you follow good lifting technique to support your joints and minimise the risk to you and baby.

Related tip: Have a couple of stashes of key items around the house e.g. a couple of stations with nappies, wipes, a change of clothes etc. That way you’re not constantly having to carry baby up or downstairs or around the house if you need to change his nappy, clothes etc.

Taking ages with tasks….

One of the issues when your hands are stiff and uncooperative is just that things can take a long time, which is difficult for things like nappy changes when baby may just try to wiggle away.

Tips: My top tip is baby sensory videos to distract your little one! If you go on YouTube and search “baby sensory videos”, you’ll find loads of free videos that feature simple images and jolly music which will help distract baby while you get stuff done. Little Man loves the fruit and vegetable videos!

Your tips for looking after a baby when you have a joint condition

If you have experience of looking after a baby when you have a joint condition, I’d love to hear your tips. Let me know in the comments!

I also love this article about parenting with arthritis, which has lots of great advice that is transferable to other joint conditions as well.

baby · child development · health · parenting

Why Does My Baby Shake With Excitement?

Recently I’ve noticed that when Little Man gets excited, he goes through a very specific set of behaviours. He will raise both arms up and out wide, lean in with wide eyes, and start shaking. This could happen over a new and exciting toy, a new experience (such as when we first took him to the seaside and dipped his toes in the ocean), or even a new food. It’s such a rapid shaking, it’s almost like he’s vibrating with excitement. This got us a bit worried… Why does my baby shake so much when he gets excited?

Shaking when excited

We’ve all heard the phrase “shaking with excitement”, but I have to admit I assumed it was a metaphor until I had a baby. It’s almost as if he gets so excited that he just can’t contain himself! Now, I know that babies do lots of things that seem weird (like staring at lights, or crawling backwards) but are actually totally normal. So, is it normal for babies to shake with excitement?

Is it normal for babies to shake with excitement?

Yes! It’s very common. It’s to do with baby’s immature nervous system. Their developing nervous system sends too many electrical impulses to the muscles and they get all twitchy. It’s normal for babies to shake with excitement, when they see someone they know or a favourite toy. This can present in lots of different ways – for instance, full-body shakes, or baby may clench his fists and shake, or tense up his whole body when excited.

Some babies may also display shuddering or shaking at seemingly random times, when there’s no particular reason for them to be excited, and sometimes it can last for a few seconds. No-one really completely understands the cause of this infant shuddering, but it’s not harmful and usually goes away by the time they’re four years old. Sometimes it’s referred to as infant shudder syndrome, shuddering attacks, or shuddering spells.

If baby is otherwise healthy, developing well and meeting his or her milestones, then there’s probably nothing to worry about if he or she tends to shake with excitement. Life is just that exciting when everything’s new! There’s no treatment for infant shudder syndrome, because it’s not an illness – it just goes away over time.

However, of course it can look a bit peculiar, and as a parent you may worry that it looks like your child having a short fit. If you’re worried, it’s always best to err on the side of caution and speak to a medical professional.

When to get worried about baby’s shaking movements

Of course, as parents it’s natural to worry. Shaking can be evidence of a seizure, but there are some specific seizure warning signs to look out for:

  • If shaking continues for over 20 seconds
  • If the shaking movement is accompanied by vomiting, unusual eye movements, or loss of consciousness
  • If it’s associated with illness or injury, or if baby sleeps for a long time afterwards

If you notice any of these signs, you should seek medical help urgently.

Ultimately, you know your baby best, so even if you don’t spot any of the warning signs, if you think it’s time to call the doctor or NHS 111, then do it. It may help (if you think of it at the time) to take a video of the shaking behaviour that’s worrying you, to show your health professional.

Is baby shaking when excited a sign of autism?

When I got onto Google and started researching about babies shaking with excitement and infant shudder syndrome, it was clear to me from the Google search bar that lots of parents who are researching this subject are worried that their baby’s shaking or shuddering could be a sign of autism. This is probably because some people with autism use repetitive or rhythmic movements to soothe themselves, and this can take the form of shaking or hand flapping.

However, these kind of behaviours are also common with neurotypical children, so just because your baby or toddler shakes with excitement or flaps his or her hands, doesn’t mean that it’s a sign of autism. There are other early markers of autism which are more reliable as red flags that something could be wrong, such as a lack of eye contact or smiling. Again though, you know your baby best – so if you’re concerned that something is wrong, talk to your doctor.

Other causes of shuddering or shaking in babies

There are other reasons that babies may display shaking or shuddering movements, beyond excitement, infant shudder syndrome, or epilepsy. Babies and toddlers often shake their heads from side to side when falling asleep – it can actually be a motion they use to help themselves fall asleep (not that it looks very restful, especially when they start head-banging!), or a sign of teething or even an ear infection.

There’s also some suggestion that infant shudder syndrome could be an early sign of vitamin d deficiency in very young babies, so if you’re exclusively breastfeeding make sure that baby is getting their vitamin D drops in line with NHS guidance (babies who are formula fed get their vitamin supplements from the formula, so they don’t need any more).

In conclusion…

So, in conclusion… there are loads of reasons your baby may shake or shudder, but if he or she is specifically displaying this behaviour when excited, it’s probably nothing to worry about. In some situations, continued shaking or shuddering could be a cause for concern though, so exercise your best judgement as a parent, err on the side of caution, and check with a doctor if you think you need to.

why does my baby shake with excitement is it normal