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

Parenting With Chronic Illness – A Collection Of Articles

Being a parent with chronic illness can be tough. It’s tiring enough looking after a baby or toddler without having to deal with pre-existing issues with fatigue and pain. When I started the Sickly Mama blog, one of the key things I wanted to do was write about parenting with chronic illness, and connect parents who suffer from chronic illness and disability to build a supportive network (you can join our Facebook group here if you’re interested!).

But of course I’m not the only one writing about this, so I wanted to do a post featuring articles from other blogs about parenting with chronic conditions, to bring together a range of advice on the subject from people who aren’t just me…

parenting with chronic illness and disability a collection of advice and articles the sickly mama blog

Parenting With Chronic Illness – A Collection Of Articles

Parenting and pacing yourself:

When you have a chronic illness, pacing is so important! I remember when my hen do was being organised, my husband was basically a consultant to my bridesmaids about how much I’d be able to do before I’d need a break. He did a great job, as did they, and I had a fab time (and then a really, really long sleep lol). But how do you manage pacing yourself while looking after a tiny, unpredictable bundle of energy (or two? Or three?).

I liked this blog post, which gives key tips on pacing yourself as a parent with chronic illness.

Coping with a newborn as a parent with chronic illness:

The newborn period is notoriously an exhausting and difficult time for all new parents. If you already have chronic illness, it can be quite scary wondering how you’ll cope with the newborn phase, especially if you suffer with fatigue under normal conditions. How much worse will it be when you’re woken up constantly by a baby who needs feeding every couple of hours? Will you be able to cope?

I’ve found a couple of articles that give tips for new parents with chronic illness, on how to manage that difficult newborn phase. This blog post covers tips for managing a newborn with chronic pain and chronic fatigue. And this post covers taking care of a newborn and yourself when you’re chronically ill.

I think the best tips for looking after a newborn when you’re chronically ill are about determining the things you absolutely must do each day (feeding baby, feeding yourself) and identifying the things which perhaps are good to do but not essential (giving baby a bath, doing the washing up). That way when you’re having a bad day, you can stick to just doing the essentials without feeling guilty, and on a good day you can aim to get a bit more fine. Oh, and asking for help is important. Always ask for help if you can!

Helping your child cope with having a parent with chronic illness:

When your child is still a baby, it’s not really something you have to worry about. But I’ve already started wondering – when Little Man is a bit older, how will we talk to him and explain things when I’m having a flare up of my symptoms? This is a really special article, which is actually written both from the perspective of a parent with chronic illness and her grown-up daughter, looking back.

I think the key thing I took away from the article was the reassuring sense that it’s totally possible to have a great childhood even with a parent who clearly suffered from very severe illness. Even totally healthy parents tend to suffer from the mum/dad guilt that they’re not doing enough for their children, so naturally the same guilt is there when you also suffer from a chronic illness that is sometimes limiting. But treating your child with respect, honesty, and trying to maintain a stable routine is what they need.

How to thrive as a parent:

So far in this blog post, I’ve used words like “coping”, “managing” and so on to describe being a parent with chronic illness. But that seems to be setting our sights a bit low. What about thriving as a parent with chronic illness? After all, none of us goes into parenting with the intention of just ‘getting by’ – we want to enjoy the experience!

I like this blog post which focuses on thriving as a parent with chronic illness. It includes some general tips on managing your days and practicing self care.

parenting with chronic illness a collection of articles and advice for parents

What are your top tips or best pieces of advice for others who are parenting with chronic illness? Let me know in the comments!

health · top tips

Coronavirus Second Wave: Surviving Lockdown 2.0

2020 has been a pretty crazy year. I can’t say it’s been a bad year, because my lovely son was born in January, but it’s definitely been a mad year. And now it seems that we’re heading for the second wave of coronavirus… and another lockdown. The first lockdown back in March was a bit of a shock. None of us had been through anything like that before. Will surviving lockdown number 2 be easier, because we know what to expect, or will it be harder – for the same reason? It’s difficult to know, especially as we don’t yet know what a second lockdown will look like.

So in preparation, I’ve pulled together a round up of some of my favourite blog posts about surviving lockdown with your well-being intact…

Surviving Lockdown 2.0 And Maintaining Wellbeing

1. Coping with social isolation

One of the most difficult things about lockdown is the social isolation. It’s particularly tough if you live alone, but even those of us living with family, friends or housemates can struggle not being able to see the people we’re closest to, or even have those everyday interactions with other people that you don’t even notice under normal circumstances – a chat with a friendly check-out clerk, a quick gossip in the office, even just a smile in the street. Humans just aren’t made for social isolation.

This blog post gives some great tips on coping with social isolation, and the impact on our mental health. Check it out!

2. Creating a wellness retreat at home

My idea of maintaining wellness at home is agreeing with my husband an evening that I can have a bath while he feeds Little Man and puts him to bed (Little Man’s room is next to the bathroom and our pipes are super loud, so I can’t bath after he’s gone to bed!). I run a hot bath, add some bubbles, make a mug of herbal tea and grab a book to read while I soak. Luxury!

But this blog post made me realise I was aiming wayyyyy too low. You really can create a luxury wellness retreat at home – it just requires a bit of planning! Even if your family commitments mean you can’t quite clear your schedule for a while day of home spa relaxation, the links at the bottom of this post give some great ideas for lovely ways to boost your wellness when you have less time available. During coronavirus lockdown when you can’t go out or meet friends, it’s so important for your mental health to carve out some time for yourself, and this post is great inspiration for your next block of me-time.

6 ideas for surviving lockdown 2.0 coronavirus second wave mental health and wellness

3. Mindfulness meditations to combat Covid-19 lockdown stress and anxiety

Linked to the above, lockdown is inevitably stressful. Not being able to go out and spend time with friends and family is stressful in itself, let alone worries about catching coronavirus, managing food and medication shortages, employment issues and more. Mindfulness is a great way to combat stress and anxiety, and even as little as a ten minute mindfulness session every day can make a real difference to your mental health and wellbeing.

As we go into Lockdown 2.0, I’m going to be proactive about using mindfulness to manage stress, and working my way through this list of 10 minute mindfulness meditations.

4. Managing lockdown food shortages and limited shopping trips

If the newspapers are to be believed, panic buying has already started in advance of the second lockdown. Back in April, I set out some of my top tips for managing with lockdown food shortages and limited shopping trips. I’ll be revisiting some of those tips, and trying to make sure we have a well-stocked freezer before Lockdown 2.0 hits!

5. Improving Wellness At Home

I like this round-up post about improving your wellness at home. Some things are so simple and yet they do really make a difference to how you feel… Like making sure you get outdoors every day if possible. During the first coronavirus lockdown, we always made sure to pop into the garden every evening with Little Man, to spend a little time with nature, and it always really lifted my mood. Unless it was raining, of course!

6. Tips for mamas to survive Lockdown 2.0

Of course a huge focus of this blog is on parenting and being a mama, so I loved this blog post about how mamas can beat the lockdown blues. Of course a lot of the tips will be great for dads too (although probably not every dad will want a mini makeover). There are benefits to being locked down with kids – at least the time goes quickly as you’re caught in the constant whirl of feeding, naptime, playtime and tantrums – but there’s no denying it can be stressful and exhausting.

What are your top tips for surviving lockdown… again? Let me know in the comments!

coronavirus covid 19 second wave surviving lockdown 2.0 with good mental health and wellness
coronavirus · health

Please Become A Blood Stem Cell Donor

Normally when I write my blog, I just hope that my readers take time to read my posts and enjoy them. Today’s a bit different, because today I’m asking you to do something. Please, please, please sign up to be a blood stem cell and/or bone marrow donor.

Why am I asking you?

This is Adeline

She’s nearly four years old and was diagnosed with a rare form of bone marrow failure almost two years ago. Ever since, Adeline has been waiting for a lifesaving bone marrow transplant. Recently, it seemed a donor match had been found, but her family have now heard that this has fallen through, and once again no matches are available.

adeline davies bone marrow failure become a blood stem cell donor the sickly mama blog

This is what Adeline’s mum has to say:

“One 3 minute phone call, I expected to get a date for transplant but instead heard the words: ‘The donors we have are not an option any longer,’ and ‘there are currently no matches for Adeline.’ It felt like a dagger in the gut and in the heart. Back to the start, just with far less hope.”

“The only way of saving Adeline’s life is a bone marrow transplant. So we need all the help and all the sign ups we can get!
Please register with DKMS, Anthony Nolan or any stem cell/bone marrow registry. All it takes is a few mouth swabs and you can save a life like Adeline’s.”

You can follow Adeline’s journey here.

Did you know?

Because of Covid, nearly 19,000 fewer people joined the stem cell register this year. That’s a massive drop, and given that many people struggled to find a donor match even before the current crisis.

Already, only 60% of transplant recipients receive the best possible stem cell match, and that drops to just 20% for people from black, Asian or ethnic minority backgrounds. More donors from black, Asian and ethnic minority backgrounds are desperately needed.

What does blood stem cell donation involve?

90% of blood stem cell donations are done by Peripheral Blood Stem Cell collection, a straightforward process similar to donating blood, although you will need injections in the days leading up to your donation. There’s no need for an overnight stay in hospital.

10% of donations are done via bone marrow transplant. This requires a general anaesthetic and a couple of nights in hospital. You can find out more about each method of donation here.

What if I can’t donate?

Not everyone is a suitable donor due to age and/or health conditions. Unfortunately, I’m not eligible to donate due to my pituitary tumour, which is why I’m trying to help out by spreading the word and encouraging others to become a blood stem cell donor if they can. If like me you can’t donate, please share the word on social media and in person to encourage others to sign up, and consider making a financial donation to the charities that run the donor registries.

Plus, remember to wear your masks, wash your hands, and social distance to limit the spread of coronavirus. A Covid infection could be the difference between life and death for someone waiting for a blood stem cell transplant.

Please, if you can, become a blood stem cell donor

So please do consider signing up to the donor registry today. You might just save a life.

health · medication · top tips

How To Decide Whether To Have Surgery/Radiation/Take the Medication…

I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.

I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.

The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:

  • Benefits – what are the possible benefits of this treatment?
  • Risks – what are the risks of doing this?
  • Alternatives – what alternative options are there? Why are they not the recommended option?
  • Intuition – what does your gut feeling tell you?
  • Nothing – what would happen if you don’t do anything?

I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.

I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.

birth · health · post-partum · pregnancy · thyroid

Could You Have Post-Partum Thyroiditis? I Do!

Any regular readers of this blog will know that for a few months now I’ve had some mysterious medical issues that my doctors have been somewhat baffled by. I’ve had blood tests, an MRI of my pituitary, and a scan of my thyroid with radioactive technetium. Despite being told at the hospital that the results of my scans would be available within a couple of days, it took a month before anyone actually got back to me with the results. I tried to take that as a sign that it wasn’t anything incredibly serious, but anyone who’s had extensive dealings with my hospital’s admin systems would know that you wouldn’t want to stake anything particularly important on their effective functioning (like, say, your long term health…)

Anyway, I finally heard from a doctor, and he confirmed that they believe I have a condition called post-partum thyroiditis. Even though I already have a pre-existing thyroid condition, I’d never heard of this quite common post-pregnancy thyroid illness. So what is post-partum thyroiditis?

Post-partum Thyroiditis

What is post-partum thyroiditis?

Long story short, this is caused by your thyroid gland going a bit haywire due to a rebounding immune system after pregnancy. It typically starts with having thyroid hormones that are too high (hyperthyroidism) for a few months. Then it either just returns to normal, or the thyroid hormones dip too low (hypothyroidism) for a few months – or even permanently.

How would I know if I have it?

Post-partum thyroiditis is actually quite a common condition with around 5 – 10% of women experiencing it, although a lot of the time the symptoms are just ascribed to normal post-pregnancy recovery. Most women initially experience hyperthyroidism – symptoms can include a racing heartrate, anxiety, tiredness, difficulty sleeping, achey muscles, twitching or shaking, feeling hot or sweating a lot, and weight loss. Obviously most of those could easily be ascribed to the post-birth recovery period and/or sleep loss thanks to your new baby.

The only way to know for sure if you have post-partum thyroiditis is to have blood tests to check your thyroid hormone levels. So if you’re concerned that you may have this condition, please make sure you speak to your doctor about it.

How is post-partum thyroiditis treated?

Hyperthyroidism as a result of post-partum thyroiditis (let’s just call it PPT) is not usually treated beyond beta blockers to reduce the impact of the symptoms of fast heartrate, anxiety, etc. Conveniently, I’m already taking beta blockers as my doctors tend to prescribe them at the first sign of hyperthyroidism, as my heart loves to go too fast and will take literally any excuse to do so.

Hypothyroidism might need to be treated with replacement thyroid hormone if it becomes severe enough. I’m hoping we don’t have to go there.

How long does postpartum thyroiditis last?

How long is a piece of string? Unfortunately, it seems that postpartum thyroiditis is a very variable condition and each woman has a different experience, so there’s no way of saying how long my postpartum thyroiditis will last. It could be a few months, a year, or even longer – sometimes the side effects are permanent.

What are the risk factors for postpartum thyroiditis?

The big question for me was whether my existing pituitary condition (which affects my thyroid) creates a risk factor for postpartum thyroiditis. A quick Google indicates that I’m not the only person with a TSHoma to go on to develop post-partum thyroiditis. But because my pituitary tumour is so rare, when anything out of the ordinary happens the doctors don’t really know what to expect. However, previous history of thyroid issues is a known risk factor for post-partum thyroiditis, as is a history of auto-immune illness.

What are the implications for me personally?

It’s just a case of wait and see, and hope I don’t end up with low thyroid levels, as that could make things complicated in terms of treating it and my pituitary tumour. So please keep your fingers crossed for me!

In the meantime, I’m back to monthly blood tests to monitor my thyroid level and regularly checking in with the hospital.

Are you a postpartum thyroiditis patient in the UK? I’d love to hear about your experience! Let me know in the comments.

health · top tips

How To Get Your Doctors To Listen To You

It took me about five years to get diagnosed with my pituitary tumour. That’s a guess, really – looking back, the first symptom I had was my hair starting to fall out, which started when I was around 16 years old. I didn’t get a diagnosis until I was 21, and I spent so many years wondering: how do you get your doctors to listen to you?

Now don’t get me wrong, my illness is super rare, but five years is still an incredibly long time to wait for a diagnosis. For the majority of that time, I had steadily increasing symptoms of hyperthyroidism, and was consistently told it was all in my head. I went to the doctors numerous times about:

  • Hair falling out
  • Heart palpitations and fast heartrate
  • Fatigue
  • Getting ill all the time – I caught every cough and cold going, and half the time it would turn into a chest infection or sinusitis or tonsillitis

My GPs pretty much just kept doing the same blood tests, which came back fine, or simply suggesting I was stressed and asking me how things were at home. I actually got to the point of wondering whether it was possible to be so stressed that your hair falls out without actually feeling stressed out about anything at all (other than the fact that your hair is falling out, ironically).

It was only when my resting heartrate suddenly jumped to 140 beats per minute (a normal heartrate is 60 – 100 bpm) and there was something unambiguously WRONG with me that they started taking me seriously and sending me for more tests and scans, and eventually worked out what was going on. I’ve since experienced, both with my own medical problems and those of others, numerous other occasions of feeling not believed/not listened to by doctors. So, I wanted to share my best tips for getting your doctor to listen to you and take you seriously.

5 Ways To Get Your Doctor To Listen To You

1. Be Organised

When you’re on the spot with a busy GP who you feel is being dismissive of your concerns, it can be difficult to remember everything you wanted to say or all the questions you wanted to ask. Write your key points down in a notebook or on your phone before you go, and take it with you to the appointment. You can also jot down the key points the doctor says during the appointment, to ensure you don’t forget anything.

Stick to your guns and make sure you say everything you wanted to say at your appointment (but make sure you get straight to the point and don’t waffle – doctors are busy people!). If your doctor interrupts you, you can go back to what you were saying later on (easiest if you have a list of your key points). If your doctor asks you only closed questions (yes/no questions), you can expand on your answers and give more detail.

2. Be Specific

If you are experiencing symptoms which concern you, write down:

  • How frequently they are occurring
  • How long they last
  • The impact this has on your daily life
  • Anything you’ve done to try to treat the symptoms and how successful this was

And tell your doctor this specifically. If you say something like “I’m getting quite a lot of bad headaches”, this is open to interpretation. How bad is “bad”? How often is “quite a lot”? On the other hand, if you can say “I’ve had five headaches in the last two weeks. They lasted between three and six hours, and I had to go to bed every time because paracetamol didn’t help. I’ve had to take three days off work because of it”, that helps your doctor to gauge exactly how serious your symptoms are.

3. Bring A Friend

Having someone else there (partner, parent, friend, housemate) can also be helpful, especially if that person can attest to the impact your symptoms have had. When my husband was quite poorly with his gluten intolerance, he kept going back to the doctors about his symptoms and getting fobbed off. When I went with him to one appointment and also talked about how he had lost a lot of weight and wasn’t himself, we finally got the doctors to listen and refer him to the hospital for proper investigation of his symptoms. I think if you’re relatively young and fit-looking, it helps to have someone else back you up when explaining how I’ll you’ve been.

4. Ask Questions

If you feel like you’re being fobbed off or you’re not getting the treatment/investigations you expected, asking questions is the way to go. Questions like:

  • “I thought you might want to do some blood tests. Can you just explain to me why you’re not doing that?”
  • “If you’re not concerned at the moment, are there any particular symptoms I should look out for that would be more of a concern?”
  • “If my symptoms don’t improve, how long should I wait before I come back to see a doctor again?”

Asking questions can help to open up more of a dialogue between you and your doctor, and also give you more reassurance about why the doctor is making certain decisions.

5. Remember Your Options

Ultimately, if your doctor isn’t listening to you, you can always ask for a second opinion from another doctor. Although the ideas listed about should help to get your doctors to listen to you, they won’t always work and not all doctors will be interested in listening. Changing doctors may be a better option than feeling like you’re banging your head against the wall with a physician who isn’t taking you seriously.

What are your top tips for getting the most from your interactions with doctors and healthcare staff? How do you get your doctors to listen to you? Let me know in the comments!

how to get your doctors to listen to you sickly mama blog graphics
health

Going To Hospital During Covid-19 Lockdown

I recently had to attend hospital for an MRI scan and scan of my thyroid gland, as my doctors try to work out why I’m experiencing high levels of thyroid hormones at the moment. Although the UK has started easing Covid-19 lockdown measures, obviously in hospitals they’re still very strict about the lockdown rules, so I thought it might be helpful to write about my experience, to help ease your mind if you do need to attend hospital at the moment.

Going To Hospital During Lockdown

28 Days Beta

The hospital seemed very quiet and empty. I’m used to going there regularly with all my health issues, and it’s always a bustling place. Not currently! There were whole corridors completely devoid of human life. It was like being in a really boring zombie movie, where the zombies are quite neat and tidy and make sure to mop the floors once in a while.

photo of hospital corridor during coronavirus lockdown 2020
I am legend(ary with a broom)

In waiting areas, chairs had been moved to a distance of 2 metres apart, and where there were fixed groups of chairs, they taped off every other chair to create gaps. In one department, they had actually zoned the waiting area and each person was directed to their own personal zone! It did mean there was less capacity for waiting, and I saw one guy who turned up very early for his appointment being turned away due to lack of space, so that’s worth being aware of if you’re usually an early bird.

Everyone’s An Expert

Everyone is required to wear face coverings in the hospital at the moment. I brought my own mask (sparkly face mask by the amazing Velvet Jones Bespoke), but they were handing out free paper masks at the main entrances, and most people just seemed to be taking the free masks… Not sure that’s great for our cash-strapped NHS, but there you go.

wearing a sparkly sequin face mask at hospital during the coronavirus lockdown 2020
If you’re going to wear a face mask, it might as well be sparkly!

As a result, walking around the hospital you get the impression that everyone you see is a surgeon, because they’re all wearing surgical masks. There are a lot of sloppily dressed surgeons out there, I can tell you.

Visitor Free Since ’93

Now all hospitals are different at the moment, my hospital has started allowing some limited visiting of inpatients, but if you’re attending as an outpatient you’re not allowed anyone with you, unless they’re your carer or you’re a parent accompanying a child.

Break It Off

The food halls, shops and coffee outlets at the hospital were mostly closed. There was one coffee shop, the canteen and one mini supermarket open, both using social distancing rules. Everyone behind the counters wore masks and were behind plastic screens as well.

I had a big gap between my first and second appointments, so I was relieved that the main food hall was still open. Tables had been moved two metres apart and there was a man with a disinfectant spray constantly on hand, swooping in and cleaning tables when people left. It was very quiet though, only a few people in the whole place. You were allowed to take your mask off to eat and drink in there!

hospital dining hall during the coronavirus lockdown 2020
Table for one

One MRI, No Waiting

From talking to staff, it sounds like they’re doing fewer procedures and seeing fewer patients than usual, which is good news if you’re one of the patients they are seeing! The MRI scan lady proudly informed me that they no longer have a backlog (because they’re doing fewer scans than usual) and the technician who did my thyroid scan said it was the first time they’ve done that type of scan in three months.

That was my experience of attending hospital during the coronavirus pandemic. Hopefully it’s useful if you need to visit hospital as well. Or if you’ve had experience of going to hospital during lockdown, perhaps you can share your experiences in the comments below!

health · top tips

How To Manage An MRI Scan If You Have Anxiety Or Claustrophobia

Having an MRI scan is a really important diagnostic procedure. If you have a pituitary tumour, chances are that the diagnosis was confirmed via an MRI scan, and there are lots of other conditions that require you to be scanned as well.

I’m an old hand at MRI scans, I’ve lost track of how many I’ve had to check on the pituitary tumour in my head. I just had a scan on Monday, to try and work out what’s going on with my current raised thyroid levels.

Having your head scanned requires your whole body to be inside the MRI scanner, which can be especially daunting if you suffer from claustrophobia or anxiety, and other people usually aren’t allowed to be in the room while the scanner is on.

So how can you manage anxiety or claustrophobia if you need to have an MRI?

How To Manage Anxiety During An MRI Scan

Talk to Your Doctors

The most important thing is to discuss your claustrophobia or anxiety about your scan with your doctors as early as you can, before the day of your scan if possible. They may be able to make special arrangements for you or help to allay your fears!

Sedation During An MRI

You may be able to discuss your anxiety with your doctors, and either your GP or hospital staff may agree to prescribe a mild sedative to help you manage the MRI process. If you think this may help you, it’s important to raise it with your doctors as early as possible before your MRI scan, as it can take time to discuss, arrange and agree.

Open or Upright MRI Scanning Machines

Now, if you’re lucky enough to have private health insurance or a big wad of cash stuffed under your mattress, you may be able to access different types of scanners through private providers. There are upright and “open” MRI scanners available, which are designed to reduce claustrophobia, but these are not normally accessible on the NHS. In some areas, these types of scans may be available if a formal application is made by your doctors, but funding these types of scans is not usually considered a priority.

You should also be aware that these types of scanners usually use lower magnetic fields and thus give lower resolution images than traditional MRI scanners, so they may not always be suitable for the type of scan you need.

tips and strategies to manage anxiety and claustrophobia in MRI scans the sickly mama

Know What To Expect During An MRI Scan

If this is your first time having an MRI, it’s really helpful to know what to expect, so you can prepare yourself mentally for the experience. Most of us have seen an MRI scanner on TV, but that doesn’t give you much of a picture of what will happen to you when you go for your scan.

Some key things to be aware of:

  • MRI scans can take a while! 20 – 40 minutes is completely normal. If they have difficulty getting a clear picture (for instance, if you move during the scan), it can take longer if they have to re-do scans.
  • Linked to the above, you will need to stay as still as possible in the scanner while the pictures are taken.
  • MRI scanners make very loud, jolting whirring and metallic noises which can be a little overwhelming and don’t follow any sort of pattern or rhythm so are hard to predict. You will be given ear plugs. The sudden noises can be stressful and make you jump, which obviously makes it hard to stay still!
  • You will be in the scanner in a room on your own, however you will be able to hear the staff through an intercom. You will have a panic button to press at any time if you need it, and they will come and get you. In some scanners I’ve been in, you can see the staff via a mirror, which I think is nice.
  • You may need to have an injection partway through the scan if your doctor has ordered an MRI “with contrast”.
  • If you are having an MRI scan of your head, your head will probably be placed inside a mask, with padding, to make sure it doesn’t move during the scan. It’s not uncomfortable but can feel claustrophobic.

Non- Medical Ways To Manage Anxiety During An MRI Scan

There are ways to manage anxiety during an MRI scan without sedation or alternative scanners. Here are my top tips!

Distract Your Brain

Give your brain something to do to distract it from what’s going on. I learn poetry before a scan and then during the scan I challenge myself to remember the poems! It’s a great way to make the time go faster and take the focus away from what’s going on around you. If poetry isn’t your thing, try:

  • Mental maths puzzles – practice your times tables up to really high numbers or try long division in your head!
  • Remembering lines from your favourite TV show or film.
  • Navigating a familiar journey – give yourself a destination and visualise yourself travelling the route of that journey from your home.
  • Remembering names – people in your primary school class, old teachers, university classmates or work colleagues.
  • Anything else that challenges your brain to remember or complete a difficult task.

Breathing Exercises

It’s easy to dismiss breathing exercises as hippy nonsense, but they really can help you manage stress and anxiety. Slow, controlled breathing has been proven to affect the nervous system and brain activity, and to increase sensations of comfort and relaxation. So it’s definitely worth a try!

The NHS provides basic online guidance on breathing techniques for stress that are simple and easy to do. You can also easily find guidance and videos online via a quick search. Breathing exercises usually involve counting patterns of breath, which also works to distract you just like the suggestions above!

Close your eyes

This one seems too simple to be true, but I know lots of people swear by it! Close your eyes when you’re being put into the MRI machine, and don’t open them again until you’re done. This strategy seems to work especially well for people who struggle with the claustrophobia aspect of MRI scans.

How Do You Manage Anxiety During MRI Scans?

Do you have any other suggestions for how to manage MRI scan anxiety? Let me know in the comments!

health · thyroid

My Experience Of Having A Radioactive Thyroid Scan With Technetium

My doctors told me they wanted me to have a scan of my thyroid to try to help work out why I’m currently experiencing hyperthyroidism. I had a letter inviting me to a technetium thyroid scan, which also specified that I was not allowed to eat seafood or take vitamin supplements containing iodine for 48 hours before the scan. Easy enough! But what is it like to have a radioactive thyroid scan? I’ve written about the whole experience below…

Radioactive Thyroid Scan – My Experience

Before The Thyroid Scan

I arrived at the Department Of Nuclear Medicine at 8.20 on Monday morning, and my immediate thought was that they probably have the most badass name of any hospital department. I got signed in, and waited for my name to be called. The chairs in the corridor were all arranged at two metre intervals, with tape marks on the floor to show safe distancing.

The Technetium Injection Process

Predictably, when my name was called it was pronounced wrong, but that broke the ice with the technician doing my injections, who was lovely. I was taken to a side room to have an injection of a radioactive isotope called Technetium, which sounds like a made-up element from the Marvel universe, but is apparently a real thing. They used to use radioactive iodine for these kinds of scan, but this has now been mostly replaced with technetium, which gives a lower radiation dose.

Before the injection, I was asked some questions. The technician checked whether I have claustrophobia and whether I was able to get up and down from a couch, which I thought was good practice checking for hidden disabilities. Then there was the usual “you’re a woman so please sign on the dotted line that you’re not pregnant” and they checked my identity one last time.

The injection itself was nothing at all! They jab you with a tiny needle, flush the line with saline solution, then give you the technetium injection. Because it’s radioactive, the needle has a little tungsten jacket to protect the technician’s eyes and fingers from the cumulative effect of giving multiple radioactive injections every day! Then they flush the line with saline again.

Before The Gamma Camera Scan

Once you’ve had your injection, you wait about twenty minutes before your scan. I was put in a little side room for radioactive people to wait, because you’re actually emitting gamma radiation during this time. You would never know it at all – you honestly can’t feel a thing! The effective radiation dose of a technetium thyroid scan is about 3.2 millisieverts (mSv) – the average annual dose from background radiation in the UK is 2.7 mSv. So it sounds like a lot, but actually if you live in Cornwall, your average annual dose of radiation is 6.9 mSv, due to the high levels of radon in the ground in Cornwall. And the annual limit of radiation exposure for nuclear industry workers is 20 mSv – so when you put it in context, it doesn’t sound so bad. None of us would worry about spending six months in Cornwall! (Unless you’re a city kid, I guess…)

After twenty minutes, I was called in to have my scan, in a machine called a gamma camera, or scintillation camera. Here’s a picture of the one I was in:

gamma camera scintillation camera machine radioactive thyroid scan with technetium experience sickly mama blog

The Technetium Thyroid Scan Itself

I was asked to have a couple of sips of water, take off my necklace and face mask, and lie on the bed part of the gamma camera machine. Then the panels that you see on the left in the picture above swiveled so one was above my head and one below. They lower the panels until they’re very close to your head – the one above me was almost touching my nose!

The process of taking the pictures was weird because you can’t actually tell that anything is happening at all. There’s no noise like in an MRI scanner – you literally just lie there feeling a bit silly. Each picture took 1 – 5 minutes and at one point they reconfigured the scanner to get a close up of my thyroid gland. Then it was done!

My Experience Of Technetium Thyroid Scan

Overall, this was a really easy procedure. Anything that involves radioactive material can feel a bit scary, but it was totally painless, easy, and comfortable. If you are claustrophobic, you may not enjoy the experience of the scan itself as the machine gets so close to your face, but it’s better than an MRI scan because the machine is open at the sides, so you’re not trapped in a tube, it’s much quieter, and the scans are taken much much more quickly, so you don’t have to spend much time in the machine at all. Plus the staff were very aware that it could be uncomfortable for claustrophobic people and asked if I was okay with the scan etc. while it was ongoing.

What happened after my thyroid scan?

It took a long time to get the results of my technetium thyroid scan and get a diagnosis, but I did eventually get there… Click here to find out what happened next.

health · medication · pituitary

Medical Mystery: An Update

So alas, I am once again in the position of being a medical mystery… Now, I love a murder mystery, preferably an Agatha Christie. But the only medical mystery show I’ve ever watched was House M.D., in which the patients invariably had to almost die before their doctors worked out that they did not, in fact, have lupus. I’m not so keen on the near-death approach to diagnosis, if I’m honest.

So back in early April, I re-started my medication (cabergoline). I had stopped it in late pregnancy in the hope of breastfeeding, but the symptoms of my TSHoma tumour returned after a few months, so I had to start taking it again.

As per usual, the doctors wanted to monitor my thyroid levels. My tumour produces Thyroid Stimulating Hormone (TSH – hence why it’s called a TSHoma), which causes my thyroid gland to over-produce thyroid hormones. So as the medication works, you would expect my TSH levels to reduce, and my thyroid hormone levels to reduce too.

Because my health issues relate to the endocrine system, all the twists and turns of this mystery thriller basically just involve different blood test results. For some reason no major TV networks have shown interest in picking up a pilot based on this concept.

So: my TSH levels have indeed been reducing since re-starting my medication. But my thyroid hormone levels have actually been increasing. Quite a lot. I now have thyroid levels way above the normal range. This makes no sense if the high thyroid levels are caused by the pituitary tumour.

Cue dramatic music. Dr House gives the camera a quizzical look.

Interchangeable Hot Younger Doctor 1: “Could it be lupus?”

The other interchangeable hot young doctors smile and roll their eyes. They don’t know much, but they know that, for some reason, it’s never lupus.

Instead, it looks as though something else is causing the raised thyroid levels. This could potentially be a thyroid condition like Graves Disease, which is an autoimmune illness that causes the body to over produce thyroid hormone, or potentially a growth on my thyroid gland itself. We don’t know. At first, I think the doctors hoped it was just a weird blip on my blood test results, but repeat testing has shown the same pattern.

So my doctors have put me on a higher dose of cabergoline, to make sure that the TSHoma tumour on my pituitary gland is definitely being treated, and ordered some more blood tests to see if it could be Graves Disease. I’m hoping to hear from them this week to find out what we know and what other testing needs to be done. I’m guessing they’ll want to rule out lupus.

A quick search online shows there are only four known cases ever of someone with my condition (TSHoma) also having Graves Disease. One of the trickiest things when you have such a rare condition is that when something out of the ordinary like this happens, you’re just flying blind. No-one really knows what’s going on. Sadly, it seems unlikely that a grizzled, curmudgeonly doctor will reveal he’s known what’s going on the whole time and has just been holding the information back for 50 minutes in order to build dramatic tension.

So please keep your fingers crossed for me, and I’ll update you as soon as we start to unravel this medical mystery…