Tag: chronic illness

How To Manage Blood Test Anxiety
mental health

How To Manage Blood Test Anxiety

The Sickly Mama1 Comment
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I’ve never been a massive fan of blood tests, and my opinion of them hasn’t exactly improved with much closer acquaintance. And trust me, diagnosing a TSH-secreting pituitary adenoma involves a very close acquaintance with the phlebotomists (a.k.a. vampires, a.k.a. people who draw blood for testing) of your local hospital. People are weird, so there’s probably at least a couple of oddballs out there who positively enjoy having their blood drawn, but I am not one of them. In fact, needle phobia is really common – affecting perhaps one in ten people. So how do you manage blood test anxiety if you have a condition that requires lots of blood tests?

How To Manage Blood Test Anxiety

Try to understand your anxiety and symptoms

It may be helpful to consider if there is any particular source of your blood test anxiety or needle phobia – for instance, an upsetting experience as a child, or a fear of fainting, feeling sick, or the pain of the needle. Or it could be associated with the sight of blood, which many people can find to be a trigger for anxiety, a more general fear of medical procedures or hospitals – or even having a parent or caregiver as a child who exhibited anxiety about any of these things. Understanding the triggers for your anxiety doesn’t necessarily solve anything, but it can help you work out what parts of the blood test situation are a problem for you.

In terms of symptoms, anxiety tends to be linked to one of two things:

  • Often needle phobia or anxiety around blood tests is linked to feeling faint, or a fear of feeling faint. Fainting can occur as a result of a drop in blood pressure.
  • Otherwise, it may be linked to physical symptoms of stress or panic, such as a racing heart, sweating and/or feeling nauseous.

Understand what to expect

It’s helpful to understand what to expect in your blood test appointment, and prepare yourself for it. The unknown is always scary. Probably the most important thing to keep reminding yourself is that blood tests usually don’t take more than a couple of minutes! So hopefully you shouldn’t have to manage your blood test anxiety for too long.

Usually, at the start of your appointment you will be asked to confirm some details about yourself. Then the phlebotomist will disinfect the skin where the needle will go (you usually get to pick which arm they’ll target!) and wrap a tourniquet around your upper arm, to make the veins stand out more. They may ask you to make a fist or pump your hand – again, to make the veins stand out. Then they’ll put the needle in – usually they’ll warn you just before it happens, and ideally you want to keep your arm relaxed. They may need to keep the needle in while swapping over blood collection tubes, if they need to do a number of tests.

When your phlebotomist removes the needle, they may ask you to press on the vein, to reduce bleeding, and they’ll probably offer a plaster or cotton wool and tape to cover the cut.

Follow some key steps before your appointment

Eat and drink beforehand (if allowed)

Some blood tests require fasting, so if that’s the case, make sure you follow the rules – but fast for the minimum time allowed. It’s really important to stay hydrated, because dehydration lowers your blood pressure, which makes drawing blood more difficult and makes it more likely that you may feel faint after your blood test.

If, like me, you’re also a bit inclined to end up with low blood sugar, then making sure you’ve had enough to eat or a sugary drink beforehand (if allowed) may also help, as low blood sugar can also make you feel faint.

Wrap up warm

It’s helpful to make sure you stay warm. When your body is cold, it causes the veins near the surface of your skin to shrink down, making it harder to draw your blood.

Plan something nice for afterwards

Try to give yourself something to look forward to after your appointment; something that you can focus on as a pleasant experience. It can be something small, like a nice coffee from the hospital canteen, or something bigger like a trip out or exciting dinner plans. Try to focus on this as something positive to look forward to, rather than focusing on the blood test appointment.

Key steps to manage blood test anxiety during your appointment

Talk to your phlebotomist about your blood test anxiety

Make sure you tell whoever’s taking your blood that you’re anxious about blood tests. There’s no need to be embarrassed; they will have seen hundreds of people with needle phobia before. They can help ensure that you feel as comfortable as possible, and distract you from what’s going on. They may also be able to make other accommodations, such as allowing you to lie down if you’re concerned about fainting, or allowing you to bring a friend or family member with you for moral support.

Similarly, if you have veins that are difficult to find, make sure you warn your phlebotomist.

Remember to breathe

So far, so obvious. If you’re anxious, you may find yourself unintentionally holding your breath while you wait for the needle to pinch you. But that won’t help – in fact, holding your breath interrupts the oxygenation of your blood and may make you more likely to faint.

Instead, try using relaxation breathing techniques to help you get through your blood test appointment. 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 your brain from what’s going on.

Don’t look!

Try not to look at the needle. These days, I’ve had so many blood tests that they don’t really bother me any more, but when I did find them more stressful, I always found that it was best not to look at my arm or what the phlebotomist was doing. In fact, the sight of the needle or of blood may actually set off the anxiety reaction (vasovagal syncope) that can cause you to faint – so it’s best avoided.

Instead, I would pick something else to look at – there are often posters or notices on hospital walls, so pick one and focus on that instead.

Distract yourself

Anxiety can increase when you focus on the source of your anxiety, so distracting yourself is a helpful way to manage blood test anxiety. You can try counting in your head, trying to remember or run through song lyrics, or chatting with the person who’s drawing your blood. You could even watch a video or listen to music on your phone during the blood test, to keep your mind off what’s going on.

Use the Applied Tension technique

If you tend to faint during blood tests, you can use something called the ‘Applied Tension Technique’ to help. This aims to help maintain blood pressure and prevent the sudden drop in blood pressure that can lead to fainting (or just feeling faint), through undertaking some physical exercises. It’s a straightforward technique, which simply involves tensing the muscles in your body to increase your blood pressure. You can read more about this technique and how to use it here.

Consider professional help

If your blood test anxiety or needle phobia is very severe, it can interfere with your medical treatment if it results in you avoiding blood tests. If the steps outlined above don’t help you manage your blood test anxiety, consider whether it could be helpful to seek professional help. You should be able to find a therapist who can help you address your anxiety over time.

Your suggestions to manage blood test anxiety

Have you suffered from needle phobia or blood test anxiety? How did you learn to manage your fears and get through blood tests? Please share your experiences and suggestions in the comments!

How To Get Exercising With Chronic Illness
fatigue · lifestyle · sport

How To Get Exercising With Chronic Illness

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Getting regular exercise is important for everyone, but when you have a chronic illness, or if you’re recovering from an illness or surgery, it can feel like a potential minefield – there’s the risk of hurting yourself, impacting your recovery… and to be perfectly honest, it might just feel like too much hard work. But appropriate exercise can help with a lot of health conditions, by managing symptoms, improving sleep, and increasing strength. So how can you get into exercising with chronic illness? I’ve pulled together my thoughts and top tips based on my own experience (which has included recovering from brain surgery twice, post-viral fatigue syndrome, exercise-induced asthma, hypermobility spectrum disorder, and more!).

Exercising With Chronic Illness

Recognise what you’re already doing

First things first. It’s important to acknowledge the exercise you’re already doing. Whether that’s walking to town to buy shopping, or cleaning the bathroom, or just getting up and having a shower, chances are you’re already doing some exercise. Understand what you’re already doing on a regular basis, how difficult you find it and the impact on your body. That should give you an idea of your current ‘baseline’ level of fitness and exercise, and how variable it is. Then you can use that as a starting point to build up from.

Do your research

Next, you need to ensure you understand your health condition(s) and the kinds of limitations they may place on your ability to exercise or the type of exercise you can do. For instance, because of my hypermobility spectrum disorder I should try to avoid high-impact exercise and instead focus on low-impact exercises such as swimming. I also need to be extra careful about ensuring I have good form and don’t over-extend my joints when I’m doing yoga.

Try talking to your doctor, and make sure they approve of the exercise you’re planning on doing. You could also be asked to be referred to a physiotherapist, who may be able to recommend specific exercises that will help your condition.

But also – have a research online for advice on exercising with your specific health condition or chronic illness. Often you can find very detailed information online (for instance, this article on exercising with hypermobility) which your doctor may not be familiar with. Of course, it’s important to be careful to use reputable sites and look for advice which is backed up by peer-reviewed scientific research (quick rule of thumb: if the site you’re looking at is trying to get you to buy something, be a bit more sceptical of its health advice…). And, of course, check any proposed new exercise regimen with your doctor.

Set realistic targets for exercising with chronic illness

If you’re currently struggling to get into the shower in the mornings, it’s probably not realistic to set yourself the target of running a marathon – and it probably won’t do your body much good to try. Set yourself realistic targets, which are in line with the advice for your condition and which permit time off for rest. For instance, rather than saying you want to do a certain type of exercise once a day, you could set yourself a target to do a certain number of minutes of exercise (or steps, miles etc.) in a week. That way, you can do more on days when you feel good, and take a break on bad days. Start small, and aim to build up over time, so that it’s not too much of a shock to your body.

If your health condition tends to be quite variable, you could also think about giving yourself workout options which you can select from depending on how you’re feeling each day. For example, aiming for ten minutes of gentle stretching on a bad day, twenty minutes of yoga on an okay day, and a short run on a good day (or whatever works for you!), will mean that you’re flexing your workouts around your chronic illness.

Work with your body, not against it

Following on from the above, the most important thing when you’re exercising with chronic illness (or when recovering from surgery or illness) is to listen to your body and work with it, not against it.

There’s a culture in some fitness circles to “push yourself to your limits”, that “pain is temporary” or something to push through. That kind of attitude is not going to help you develop a good relationship with exercise in the long run (no pun intended…), if you’re suffering from chronic illness. If your body tells you to stop – stop! You can always do more exercise when you’re feeling better.

Over time you’ll probably get the feel for when your body is saying no as a result of your health condition, and when it’s just saying no because you’re giving it a good workout. But it can take a while to get to know what you can handle, how to recognise when your body’s had enough, and how a workout will impact you the next day. You may also start to notice other patterns that you hadn’t picked up on previously, in terms of how activity affects your condition.

Measure progress against yourself – not other people

As the old saying goes: comparison is the thief of joy. If your friends are comparing notes on the 5k they ran at the weekend, don’t let that make you feel bad about the fact that you can only run 1k, or that you were proud of managing a five minute walk the other day. Even comparing yourself to others with the same health condition is not helpful. Remember that your body is unique, and everyone responds differently to illness (and to exercising with chronic illness!). Focus on your progress by comparing yourself to your previous achievements and your baseline ability to exercise. That way, it’s a fair comparison and you can celebrate your progress, instead of feeling like you’re not doing enough.

Cut yourself some slack

This is probably the most important point on the list. You need to cut yourself some slack. Things won’t just go smoothly. There will be times when your health condition probably means that your progress goes backwards for a while. You may feel frustrated that you’re ‘back where you started’ (or even further back), as a result of a flare up in your illness.

That’s okay. It’s okay to go backwards, and it’s okay to be frustrated by it. But try to be kind to yourself. If you need a break, have a break. If you need the day off, take the day off. If you need the week off – likewise. Remember that it’s okay to find things difficult, or need to rest. The whole point of exercise is to look after your health and wellbeing.

Don’t be afraid to give up and do something different

With exercise, there can be a culture that it’s bad to be a “quitter”. Well, that’s true – if you stop exercising completely. But if you’re just not getting on with a specific type of exercise, then there’s nothing wrong with quitting it in order to try something else. For instance, if you’re finding running too difficult, you could try swimming or yoga instead. The point is to find something that you actually enjoy doing, and build it into your routine, so that it’s sustainable for the long term.

Build a habit again… And again… And again.

One of the most important things when you’re trying to improve your fitness is to get into a routine with your exercise. Then, it just becomes part of your day to day life. And the tricky thing when you’re trying to exercise with chronic illness, is that the routine tends to get broken. For instance, I remember a couple of years ago when I’d got into a really good routine with dance classes and rock climbing, and had gained a lot of strength and fitness… And then randomly had a really bad asthma flare up that meant I struggled just walking around for weeks and weeks. I lost the habit of going to class, I lost a lot of muscle mass. It was totally disheartening.

It can be hard to force yourself to get back into a routine one it’s been broken, but the only advice I can give is to persevere and be patient. Chances are, you’ll have to keep re-starting your routine as time goes by. But I think it helps to focus on the positives. For instance, even though I had lost a lot of strength and fitness, when I restarted dance and climbing, I hadn’t forgotten the theory and skills I’d learned. Although I felt like I was back to square one, in fact I was still a couple of squares further along the board, compared to when I originally started. And the second time around, it didn’t take quite so long to get back up to speed.

How to get into exercising with chronic illness… Your tips!

Have you managed to develop a good exercise routine with chronic illness – or while recovering from surgery or illness? What are your top tips? Let me know in the comments below!

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

Why You Should Always Find Out Your Surgeon’s Birthday

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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
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Top Tips For Having Transsphenoidal Pituitary Surgery

The Sickly Mama2 Comments
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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
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Best Ways To Relax And Enjoy Life When You’re In Pain

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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
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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!

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

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

Looking After A Baby When You’re Sick

Ask For Help

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

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

Do The Absolute Minimum

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

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

…Except When You’re Okay

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

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

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

Practice self-care

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

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

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

Rest as much as possible

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

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

Let go of the mum/dad guilt

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

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

Your tips for looking after baby when you’re sick

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

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

The Sickly Mama1 Comment
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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!

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

The Sickly Mama3 Comments
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Today I’m going to be talking about coping with having an undiagnosed illness – one where the doctors can’t work out what’s wrong (or may even not believe that anything is wrong at all).

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

What it feels like to have an undiagnosed illness

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

The uncertainty is frightening

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

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

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

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

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

It’s tiring to keep people updated

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

You can end up minimising how sick you really are

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

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

You can feel like no-one is listening

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

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

It can be hard to manage existing responsibilities

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

Money worries with undiagnosed illness

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

Your Experiences of Mystery/Undiagnosed Illness

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

Looking After A Baby When You Have A Joint Condition
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Looking After A Baby When You Have A Joint Condition

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

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

Looking After A Baby When You Have A Joint Condition

Feeding your baby comfortably

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

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

Poppers or buttons on baby clothes

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

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

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

Hanging out on the floor all day

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

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

Lifting and moving baby

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

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

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

Taking ages with tasks….

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

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

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

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

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