Tag: treatment

Why You Should Always Find Out Your Surgeon’s Birthday
Just for fun

Why You Should Always Find Out Your Surgeon’s Birthday

The Sickly MamaLeave a comment
Advertisements

Today is my birthday! How old am I? Fortunately that’s not relevant to this blog post. Because today, we’re going to be talking about the most important birthday you need to add to your calendar. And, hard though it is to believe – it’s not my birthday… It’s your surgeon’s. Because a study in the British Medical Journal (BMJ) has found that patients who underwent surgery on the surgeon’s birthday exhibited higher mortality than patients who underwent surgery on other days.

Wait, what?

Yes, that’s correct. Your surgeon is more likely to kill you if they’re operating on you on their birthday. How’s that for a crazy fact – and a completely inappropriate topic for a light-hearted celebratory birthday blog post? In my defense, the study was published as part of the British Medical Journal’s fun and festive Christmas edition, so I’m not the only one completely misjudging the suitability of the topic for light entertainment.

It’s my surgeon’s birthday. How worried should I be?

The study looked at almost a million surgical procedures performed by 47,489 surgeons, and found that mortality rates were 6.9% on surgeon’s birthdays, compared to 5.6% on other days. That’s a pretty noticeable difference – but there are, of course, a few “buts”…

The study looked at 17 common emergency surgical procedures, performed on patients aged 65 – 99, at US hospitals from 2011 – 2014. The fact that these were emergency procedures performed on older people means the expected mortality rate for the first 30 days after surgery was already quite high. Unless you’re a 65+ year old undergoing a common medical emergency, even if it is your surgeon’s birthday, you’ve probably not got a 6.9% chance of dying. Good news for anyone getting an ingrowing toenail removed (or having pituitary surgery).

Additionally, apparently it’s actually comparable to the kind of increase in death rates that is seen at other times – including Christmas, New Year and weekends. So that’s… not at all reassuring, actually, now I think of it.

Why does it happen?

Well, the study was observational, meaning that the authors couldn’t establish the reasons behind the ‘birthday effect’ they observed, or exclude the impact of other, unmeasured factors. But they suggested a number of factors that could be at play:

  • Surgeons rushing to complete procedures on their birthday if they have plans to celebrate later on.
  • More distractions from birthday phone messages or conversations with team members, which could lead to more errors.
  • Surgeons being less likely to check up on patients following surgery, if they are busy with birthday plans.

They all sound totally plausible, although I’ve also thought of a few of my own that the researchers somehow missed:

  • Surgical staff suffering from a sugar rush and subsequent drop in blood sugars after eating birthday cake, impairing surgical performance.
  • One or two evil surgeons intentionally killing patients as part of some kind of sick annual birthday ritual. It’s probably a whole conspiracy, guys. I wouldn’t be surprised if it turned out Bill Gates was involved.

How reliable is the study?

I’m not a statistician, so I’ll leave that question to more experienced maths jockeys. I will say, however, that the letters section of the British Medical Journal website contains a number of letters on the topic from some very disgruntled surgeons, and is well worth a read. To quote one letter from neurosurgeon Steven A. Reid: “One wonders about the intrusion of errors on the part of statisticians on their birthdays — I’m certain the outcome isn’t as dramatic. More speeding tickets perhaps?”

And in conclusion…

Well, I’m not a surgeon, but you’ll be glad to hear I’ve booked my birthday off work anyway. You can’t be too careful, right? And if you’re reading this while in the office, well… play it safe and go read about my experience of transsphenoidal pituitary surgery rather than doing any more of that dangerous work stuff…

Top Tips For Having Transsphenoidal Pituitary Surgery
Uncategorised

Top Tips For Having Transsphenoidal Pituitary Surgery

The Sickly Mama2 Comments
Advertisements

Now, I fully recognise that this is a bit of a niche blog post, one which is principally going to be of interest to anyone about to have pituitary surgery. But hey! Pituitary tumors are actually surprisingly common, so there’s a lot of people out there who might be awaiting surgery. Maybe one of them is your, dear reader.

And before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. However, I should note that many of your questions will already have been answered on legitimate medical sites elsewhere on the internet. So instead of regurgitating the same old advice (“Don’t sneeze after surgery or your brain will shoot out of your nose”, “Warning: after they’ve drilled through your head, it may be a little sore”), I have decided I will go down a different route, and write down the more obscure things that I wish I’d known before heading into hospital for transsphenoidal pituitary surgery…

Top Tips For Having Pituitary Surgery

Let me present my top tips for people about to have pituitary surgery:

1. Shave your inside elbows.

“She’s gone mad,” I hear you cry. “She’s raving. It was probably the brain surgery that did it.” In fact, this is an entirely logical step, because of all the blood tests you’ll undergo after your pituitary surgery; you’re basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. And I mean VERY ClOSE. Both times I’ve had pituitary surgery, I’ve had blood tests every two hours for the first twelve hours after waking up, and then they gradually reduce in frequency… But not fast enough. You will literally be woken up through the night for blood tests in hospital.

This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you’ll be wishing you had taken my advice and shaved your inside elbows. I did this for my second surgery (having learned this lesson the hard way after my first pituitary surgery) and it made all those bloody blood tests just a little bit easier.

2. Drink enough.

If this seems obvious to you, then presumably you’re a normal person who gets thirsty when you haven’t drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really notice I’m thirsty when it’s hot or I’ve done exercise (or, for some reason, when I’m pregnant!). Otherwise, I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.

This was slightly problematic in hospital. Because of the risk of surgery damaging your pituitary gland and causing a condition called diabetes insipidus, your fluid balance is monitored carefully. If they believe you’re becoming dehydrated, they will put you on a drip. This is rubbish. Therefore, drink lots of water. And if you don’t like water, keep a supply of tastier drinks at hand. And by “tastier drinks”, I mean Ribena.

3. Always eat the custard first.

Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason, the dessert was often served before the main. If you waited for your main meal to rock up before eating dessert (like any normal person would), your custard would congeal disconcertingly by the time you got to it.
So remember: you’ve just had brain surgery. Screw societal norms regarding the “correct” order in which to eat sweet or savory comestibles. Don’t let that custard go to waste!

4. Make your visitors play musical chairs.

Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital after each pituitary surgery (thank you guys!), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed. Consequently, by the end of my stay in hospital I had done my neck in, from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides. I did for my second surgery and it was much easier on the neck.

5. Get wheeled out in a wheelchair.

Because a) you’ll be feeling rubbish and won’t want to walk, and b) it’s fun!

6. Steroids + morphine = surprisingly fun.

After waking up from my first surgery, initially I felt rubbish. It was very, very painful. Fortunately, the nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.

7. Play your “brain surgery” card.

I regret not doing this more, in retrospect. When you’ve had brain surgery, you should be able to really milk that fact for all it’s worth. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.

I remember speaking to one friend a few weeks after my first brain surgery, and I mentioned that I was always forgetting where I’d left my books. She gave me a sorrowful look and whispered, “Is that because of the surgery?”It was disappointing to have to confess to her that no, I have in fact always been that stupid.

8. Get a free pill slicer. They are awesome.

After pituitary surgery, you’ll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body’s ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.

I managed to lose my pill slicer after a couple of months, and I was pretty cut up about it. …Geddit? Cut up?

Your top tips for having pituitary surgery

Have you had transsphenoidal pituitary surgery? Do you have any top tips you think I’ve missed? Let me know in the comments!

Best Ways To Relax And Enjoy Life When You’re In Pain
Uncategorised

Best Ways To Relax And Enjoy Life When You’re In Pain

The Sickly MamaLeave a comment
Advertisements

I’ve written previously about alternative ways to cope with pain when you can’t (or don’t want) to use painkillers. I thought it was time to follow that up with a post about ways to relax, and even try to enjoy your time, when you’re in pain.

I’m writing mainly from my perspective as someone who’s had chronic pain from my hypermobility spectrum disorder throughout my life. My joint pain tends to come and go – sometimes it’s really bad, sometimes it’s just an annoying backnote. This post is focused around things you can do to relax and distract yourself from pain – perhaps when you’re waiting for pain relief to kick in, or if your normal treatment hasn’t got rid of the pain entirely. There is a strong connection between mental health and pain; stress exacerbates pain, so by using these ideas to help relax, it may also help to reduce your perception of the pain. You might find it useful if you suffer from chronic pain, or you have a current injury that’s bothering you…

Best Ways To Relax And Enjoy Life When You’re In Pain

1. Take a bath

Heat can be a great way to treat pain, so a warm bath is a great way to treat pain but also to distract yourself from it and have an enjoyable time. I always love having a bath with nicely scented bath products – there are plenty of bath soaks on the market which are specifically targeted at soothing sore muscles or relaxing you. You can take a cup of herbal tea and a book, or play some relaxing music, and just chill in relative comfort. There’s also the benefit that the water takes some of the weight off your muscles and joints.

2. Yummy smells

I guess technically the word I’m looking for is ‘aromatherapy’, but that sounds very formal for the kind of thing I’m talking about. When you’re in physical pain, it can be difficult to focus on anything other than the pain, but strong comforting scents can be a really good, pleasant distraction – especially if they come with comforting memories or associations attached. You can try using an oil burner, reed diffuser or wax melts that scent your whole house; scented massage oils or moisturisers; or you can use essential oils on a handkerchief or on your pillow at night.

3. Gentle Exercise

It depends on the cause of your pain as to whether this one is likely to help – obviously if you have a sports injury that needs resting up, or a condition that means your pain worsens with exertion, then this is not the suggestion for you! But gentle exercise can really help with some joint and muscle pain, which can actually be exacerbated if you stay still for too long.

I love taking a walk when my joints are painful, because not only does the exercise help to reduce stiffness and ease the pain, but also just being outside is a lovely distraction for my mind, and it gives me something else to focus on. Since having Little Man, I’ve actually discovered that walking with a pram is especially nice if my hips and leg joints are playing up, for some reason.

Alternatively, light stretching, yoga or tai chi can be really good for pain as well. Yoga With Adriene has free online videos including this yoga routine for chronic pain, and other yoga flows aimed at targeting different types of pain including migraine, sciatica, back pain and more.

4. Mindfulness and Meditation

Mmm it’s time to get hippy dippy! Meditation has also been shown to be effective in reducing pain, and it’s believed this is because it reduces the stress response in the body. I find it’s especially helpful at bedtime if you’re trying to go to sleep while you’re in pain. Personally, I enjoy guided meditations where you visualise peaceful locations like a beach or a forest, but there are lots of different styles of meditation around, so keep looking until you find one that works for you. There’s loads of free guided meditations online – try experimenting to find a meditation style you enjoy.

5. Get Closer to Nature

Spending time in nature is inherently relaxing. Walking, gardening, or going foraging are all great ways to relax and gently distract yourself; but even if you’re not up to doing anything too physical, just taking some time in the great outdoors is a great way to feel better. On a sunny day, a spot of sunbathing can boost your mood (obviously use sunscreen and limit your time in the sun!) but as long as you wrap up, even on colder days the sight and sounds of nature are really soothing.

Your tips for relaxing and enjoying life when you’re in pain:

Do you have experience of managing a chronic pain condition, or pain from an injury or illness? What are the ways you try to relax and chill out even when you’re in pain? Let me know your tips in the comments!

How To Cope When Dealing With Hospital Administration Systems
Just for fun · medication

How To Cope When Dealing With Hospital Administration Systems

The Sickly Mama1 Comment
Advertisements

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…

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 For Mental Health
baking · mental health

Baking For Mental Health

The Sickly MamaLeave a comment
Advertisements

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!

How To Cope With Having A Mystery / Undiagnosed Medical Condition
Uncategorised

How To Cope With Having A Mystery / Undiagnosed Medical Condition

The Sickly Mama1 Comment
Advertisements

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

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!

Please Become A Blood Stem Cell Donor
Uncategorised

Please Become A Blood Stem Cell Donor

The Sickly Mama1 Comment
Advertisements

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.

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.

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

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

The Sickly Mama4 Comments
Advertisements

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.

Could You Have Post-Partum Thyroiditis? I Do!
medication · thyroid

Could You Have Post-Partum Thyroiditis? I Do!

The Sickly Mama1 Comment
Advertisements

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.

How To Get Your Doctors To Listen To You
medication

How To Get Your Doctors To Listen To You

The Sickly Mama2 Comments
Advertisements

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!