Tag: pain

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

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!

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

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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.

Parenting With Chronic Illness – A Collection Of Articles
baby · fatigue · health · pain · parenting · top tips

Parenting With Chronic Illness – A Collection Of Articles

The Sickly Mama6 Comments
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Being a parent with chronic illness can be tough. It’s tiring enough looking after a baby or toddler without having to deal with pre-existing issues with fatigue and pain. When I started the Sickly Mama blog, one of the key things I wanted to do was write about parenting with chronic illness, and connect parents who suffer from chronic illness and disability to build a supportive network (you can join our Facebook group here if you’re interested!).

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

Parenting With Chronic Illness – A Collection Of Articles

Parenting and pacing yourself:

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

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

Coping with a newborn as a parent with chronic illness:

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

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

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

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

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

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

How to thrive as a parent:

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

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

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

How To Get Your Doctors To Listen To You
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How To Get Your Doctors To Listen To You

The Sickly Mama2 Comments
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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!

Fatigue vs. Tiredness (It’s Not The Same Thing!)
fatigue · hypermobility

Fatigue vs. Tiredness (It’s Not The Same Thing!)

The Sickly Mama1 Comment
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The other day, I was sat with Little Man on my lap I’m the evening. This is, of course, a common occurrence. He’d been very difficult all day with an upset tummy and teething pain. I’d just been playing on the floor with him to distract him, doing tummy time and walking practice and licking Mr Bun Bun (the best part of playtime, of course). I sat back down with him in the armchair, and five minutes later I completely ran out of energy. And I knew I’d overdone it.

I get tired like everyone else, but I also get fatigued, thanks to my medical conditions, and although they sound similar, they’re not the same thing. These days I’m pretty good at managing my activity levels to avoid getting fatigued, but being a parent creates a new challenge in that respect, as you can’t plan for when the little man decides to kick off! So, what are the differences between normal tiredness and fatigue? How can you tell them apart?

Fatigue vs. Tiredness

How is fatigue different from tiredness?

I think a lot of people who haven’t had a chronic illness think that having fatigue is the same as being tired. Which is understandable if it’s not something you’ve experienced! Fatigue does indeed involve feeling tired, but also often includes:

  • Aching muscles
  • Difficulty concentrating or “brain fog”
  • Feeling physically weak
  • Difficulty with decision making
  • Slow responses
  • Poor memory

Plus, the sensation of tiredness/exhaustion is often quite extreme.

As well as having more extensive and severe symptoms than tiredness, fatigue is different in terms of what causes it and how you fix it. It can be caused by long-term illness, including mental illness, or stress.

Most significantly, it often doesn’t resolve with sleep, and the feeling of tiredness is disproportionate to the level of activity you’ve been doing. As a result, it can be quite tricky to understand where your limits are and not go too far. In my case, the other day I was completely surprised that I had apparently overdone it and hit a fatigue wall. I felt like hadn’t had much more of a strenuous day than usual, but obviously it was enough to tip me over the edge.

My experience of fatigue

Firstly I should say that I’m fortunate because my fatigue has improved a lot over the past few years. I first experienced fatigue when I had glandular fever at university and afterwards was left with post-viral fatigue syndrome for a number of months. Then once that started improving, my pituitary tumour started giving me more symptoms…including fatigue!

It’s gradually improved since my second pituitary surgery, when I started taking medication to treat my tumour (lanreotide). The improvement has been so slow as to be imperceptible, but looking back five years it’s a huge change in retrospect. I think as well that I’ve got much better at managing my fatigue in general. I can usually do a busy day or a late night, as long as I have nothing to do the next day. I’m also fortunate that my husband is really helpful at understanding and helping me manage my symptoms.

For me, it’s about ensuring enough downtime around periods of activity. It doesn’t need to be sleep necessarily, but just rest time without much physical or mental exercise. For instance, if I’m doing housework, I need to make sure I sit and have a short break every 15 – 20 minutes or so. If I don’t, I can end up so exhausted I’m useless for the rest of the day. When I got married, my husband had to act as a consultant for my bridesmaids organising my hen do, to ensure that it was enough of a balance of things that I’d be able to make it to the end!

When I’m tired, I can usually power through. Also, even severe tiredness tends to come and go over time, so I’ll feel better for half an hour before the tiredness hits again. When I’ve got to the point of being fatigued, though, there’s no powering through. I am completely useless.

What’s your experience of fatigue? Let me know in the comments!

My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy
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My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy

The Sickly Mama5 Comments
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I thought it might be useful to write a post about my experience of Hypermobility Spectrum Disorder (formerly known as Joint Hypermobility Syndrome, apparently rheumatologists like renaming stuff) during pregnancy, as I would have found it helpful to read something like this when I was pregnant!

What is hypermobility spectrum disorder?

Basically it’s an overarching term for a group of conditions relating to joint hypermobility – i.e. in simplest terms, your joints extend more than they’re supposed to. I was diagnosed with it when I was 17, although at that point they called it joint hypermobility syndrome.

I actually meet the diagnostic criteria for a condition called hypermobile Ehlers-Danlos Syndrome (hEDS) although I’ve never been formally diagnosed with it. I did once see a dermatologist about something totally unrelated, and as it turns out he specialised in the dermatology of hEDS and was very excited to run a bunch of tests on my skin.

Hypermobility Spectrum Disorder and Pregnancy

How can hypermobility affect pregnancy and birth?

I was referred to an obstetrician once I was pregnant, thanks to all my stupid medical conditions, and she discussed the key potential issues from my hypermobility spectrum disorder and pregnancy, which basically are:

  • Risk of the birth progressing quite quickly once you reach 4cm dilated.
  • Risk of poor or slow wound healing.
  • Risk of resistance to local anaesthetic.
  • Risk of waters breaking early.
  • Risk of additional pain during pregnancy due to the extra weight and hormone changes placing stress on the joints.

So which of these issues did I actually encounter? I’ll go over them in order…

Increased joint pain during pregnancy

Oh boy did I get this one. It actually started very early too, around week 12 or 13 – well before any significant weight gain, so I assume the issue was caused by the hormone relaxin, which your body produces during pregnancy and causes joints to loosen. If you already have loose, hypermobile joints, that’s not great.

You’re recommended to sleep on your side during pregnancy, but I found that when I slept on one side, the hip on the bottom would gradually partially dislocate during the night and it would eventually wake me up with the pain. Then I’d swap sides, and it would repeat on the other side. By the end of the night I would only be getting maybe half an hour on each side before the pain woke me up, and my joints were so sore and stiff in the mornings. It was not fun, and it got worse as my baby bump got bigger.

I did, however, find that physiotherapy really helped. I saw a great NHS physio who have me exercises to strengthen the muscles around my hips and it made a massive difference to my pain levels, although it didn’t cure it completely.

I’m now four months out from the birth and I would say that although the sleeping pain resolved basically as soon as I have birth, I can feel that the pregnancy has had a lasting effect on my left hip joint, which feels noticeably less stable and more often painful than previously.

Premature rupture of membranes

My waters broke at 36 weeks and 5 days, which is technically premature, but only just (37 weeks is technically full term). Premature rupture of membranes (waters breaking early, if you’re not a doctor) is a risk of hypermobility, so it’s possible that it was related.

Hypermobility and rapid labour

I didn’t go into labor naturally but was induced due to my waters breaking. I was put on the syntocinon drip and told to expect to progress by dilating about half a centimetre per hour. The midwife said she would check on my dilation at about the four hour mark, and that she expected me to progress about half a centimetre dilation per hour.

Two hours later I was in massive amounts of pain, they weren’t letting me have gas and air (because they said you had to be 4cm dilated first) and I felt that I definitely couldn’t cope with another 12 hours or more of it, so I asked for an epidural. The midwife put in the request, but the anaesthetists were in theatre so it wasn’t going to happen any time soon. Shortly afterwards, I got the very distinct feeling that my body was starting to push. I told the midwife but she didn’t seem that bothered. Fortunately, my husband then insisted that she check how dilated I was. She had a look, realised I was fully dilated and that I was indeed pushing.

Then it was panic stations! The midwife apparently had to write loads of stuff on the computer at this point, and thus had to call in a second midwife to take over with me.

Although the dilation stage had happened really quickly, the pushing stage did not. Fortunately they did let me have gas and air at last, which helped a lot with the pain.

They wanted the baby out within two hours of starting pushing (not sure if this is standard or due to the fact my waters had broken a long time before and they were worried about infection). At some point, a doctor appeared and said that if I didn’t make good progress in the next two pushes, they were going to do an emergency caesarian. Seemingly I did make enough progress, because she went away again. Then, some time later, a couple of other doctors appeared and said I had two pushes before they would do a ventouse (suction cup) delivery.

Resistance to anaesthetic

In order to get the baby out, they had to do an episiotsomy, which then needed stitches. They gave me local anaesthetic before the stitches, but it really didn’t work, I kept telling the doctor doing the stitching that I could feel it. So I guess I did have the resistance to local anaesthetic issue.

They didn’t seem to be clued up on my hypermobility and the plan to manage it during the birth, because they also used the normal dissolvable thread for the stitches, instead of the silk sutures I was supposed to have, to assist in case of poor wound healing. The dissolvable stitches were okay for me in the end fortunately. One stitch broke, but that could have been because I did so much walking to and from the neonatal intensive care unit in the week after Little Man was born (he developed a very serious case of jaundice and had to go into NICU). I didn’t notice any issues with healing, thankfully.

To be fair, the mess up with the stitches and the insufficient local anaesthetic may have been due to the fact that after Little Man arrived, I had a big post-partum haemorrhage. The alarms went off and lots of doctors and nurses suddenly appeared in the room, luckily I didn’t need a blood transfusion but was put on a drip and super woozy. So it was all a bit crazy in the delivery room, and I can see how things were missed. But I did think it was disappointing that, despite having flagged a lot of these potential issues well before the birth, we were still left with them not being managed very well – especially the rapid labour. Looking back I am annoyed that I was in so much pain with no pain relief and they didn’t even think to check my dilation to see whether things had progressed further than they were expecting.

What advice do I have for other hypermobile mamas-to-be?

If you’re pregnant and have hypermobility or hEDS, I recommend flagging it early to the hospital, but being prepared to advocate for yourself in the delivery room. It’s hard to do when you’re actually in labour yourself, so make sure your birth partner knows about your hypermobility and how it can affect pregancy and birth, and that they’re confident to advocate for you. I dread to think how long I would have been pushing before they thought to check my dilation, if it hadn’t been for my husband advocating for me.

I also highly recommend physiotherapy, as early in the pregnancy as possible. A lot of hospitals have long waiting lists for physio, so try to get on the list as early as possible.

Are you a mum who’s hypermobile? Let me know about your experiences with pregnancy and birth in the comments!

Hypermobile Mama
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Hypermobile Mama

The Sickly Mama1 Comment
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I thought it might be good to write something about my experience so far of being a mama with hypermobility. I have hypermobility spectrum disorder, which basically means rubbish joints that bend too far and hurt, and technically I meet the diagnostic criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS) although I’ve never formally been diagnosed with it other than by a random dermatologist at an appointment about something else (long story).

My worst joints are probably my hips and knees, although I also get pain in my shoulders, elbows, ankles, hands and feet (so basically everywhere other than my spine!). So what is my experience so far of parenting with hypermobility spectrum disorder?

Parenting with Hypermobility Spectrum Disorder

The Advantages

I always like to try to stay positive and actually, as it turns out, there is at least one advantage to having hypermobility with my baby! His dad always complains that the little dude pinches and claws at his hands and arms when he holds him in his lap, and I was wondering why he didn’t do it to me… Except actually he does! But because I have skin that stretches more than it should, it doesn’t bother me when he grabs handfuls of it. This is the same superpower that led me to be immune to Chinese burns when I was in primary school…

The Disadvantages

The main disadvantage so far is just the ability to treat pain when it arises. I normally try to avoid taking medication for my joint pain unless it’s really bad, and I like to manage it using heat – hot water bottles or baths especially. But you can’t put a hot water bottle on a sore hip when you have a baby in your lap, and my opportunities for taking baths have been significantly reduced! Plus even when it’s bad and I want to take painkillers, if Little Man has just fallen asleep in my lap then I’m not going to go moving him.

For the first time the other day, when I was feeding Little Man and he was quite fussy with teething pain, he was pushing back against my arm so hard that it was making my shoulder partially dislocate even with me trying to brace the shoulder against a cushion. By the end of the feed, my shoulder was so sore!

He’s still only four months old, so I’m definitely worried that as he becomes stronger, it will become easier for him to accidentally injure me. All I can really do is try to build up the muscles around my joints which helps to hold them in place better. So I’m currently doing a tonne of yoga to try to strengthen my joints as far as possible.

Are there any other hypermobile mamas or papas out there with tips for taking care of your joints and a baby at the same time?

Coping With Pain When You Can’t Use Painkillers
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Coping With Pain When You Can’t Use Painkillers

The Sickly Mama2 Comments
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Firstly, I want to make it totally clear that I’m not advocating that people shouldn’t use painkillers to manage pain. But thanks to the current coronavirus lockdown, I’ve had a couple of situations where I couldn’t use my normal painkillers, and it got me thinking about coping with pain when you can’t use painkillers.

I have chronic pain from my hypermobility spectrum disorder that flares up now and then, especially when the temperature changes rapidly from hot to cold or vice versa. Usually if it gets particularly bad, I take ibuprofen (Advil, for any Americans). However, since France issued a warning about using non-steroidal inflammatory painkillers during the covid 19 pandemic, I’ve tried to avoid taking it even though the evidence is not really clear either way.

Then I also have an issue with very bad sinus headaches, which is a hangover from two lots of brain surgery done via my nose (transsphenoidal surgery). They get so bad that they also have the fun side effect of making me very nauseous, to the point that I have actually thrown up from them several times. They are aggravated by pollen/hayfever, so tend to get worse at this time of year. Normally, I would take paracetamol because ibuprofen doesn’t work for them… But we don’t have much paracetamol in the house, and it’s been hard to get hold of lately with the coronavirus panic buying. So again, I’ve been trying to avoid taking painkillers.

And so, I thought I’d write a post about some of the ways that I find helpful for coping with pain (especially joint pain, because that’s my most common issue). They probably won’t work for everyone, or every type of pain, but I hope you might find it useful anyway.

Coping With Pain When You Can’t Use Painkillers

1. Heat

I find that heat is so great for managing my joint pain. Pre-baby, I would often try to have a bath or at least a hot shower if they were playing up, as it helps the pain so effectively that I often wouldn’t need to take painkillers at all. Now I have a three-month old baby, I can’t just run off for a bath at the drop of a hat (sadly). So I use a hot water bottle or (preferably) a microwaveable wheat bag. Extra layers also works, but while it’s easy to put extra pairs of thick socks on if my ankles or feet are hurting, it’s not so easy to layer up and warm up a hip joint.

Conversely, ice can also help certain types of pain, especially sports injuries.

2. Breathing Exercises

When I was pregnant, I did an online hypnobirthing course with The Positive Birth Company. Well, actually I did about 60% of the course, because I was totally caught out by Little Man arriving three weeks early. One of the big aspects of hypnobirthing is using breathing exercises to manage pain. I found this really useful when giving birth; I think it’s particularly good for pain which is severe but comes and goes – like, say, having a baby…

3. Distract, Distract, Distract

I always find my joint pain is worst at night, when I’m in bed and trying to sleep. But actually, chances are that it’s not any worse then than it is any other time; it’s just that there aren’t any distractions to take my mind off my poor sad joints. Even something as simple as listening to music or reading a book can help take your mind off ongoing low-level pain. For worse pain, something interactive and requiring concentration is better as it forces your attention away from what’s hurting – like playing a game or reading aloud.

4. Movement and Massage

Probably depends on what’s causing your pain, but for my joint pain, gentle movement is really helpful to take the pressure off my joints. The other day, I was holding Little Man, who was finally sleeping after a very grumpy day (he didn’t poop for three days! Enough to make anyone grumpy I’m sure), and my hips were playing up so badly but I didn’t want to move him! When he eventually woke up, I went to do some chores in the kitchen and the pain in my joints improved significantly just from the movement.

Linked to this, massage can be really great for pain – although obviously some pain locations are more accessible than others.

5. Physiotherapy

Following on from the above, in the longer term, physio can help with some forms of chronic pain. I always assumed physiotherapy wasn’t really very effective, because I’d known a lot of people complain that it didn’t work for them. But when I was pregnant with Little Man, I actually tried physiotherapy for the first time, and I found it incredibly effective.

My hip pain got a lot worse very early on, from the pregnancy hormones (which make your joints looser) and extra weight. It was so bad that I was waking up constantly throughout the night in huge amounts of pain from my hip partially dislocating in my sleep. Then I would swap sides and sleep on the other side for a bit, until that one started hurting and woke me up to swap sides again. It wasn’t fun, although I guess it was great practice for waking up constantly at night with the baby once he arrived! In fact, even on bad nights when he was teeny tiny, Little Man woke me up significantly less frequently than my hips had done throughout my pregnancy.

It took a number of weeks to get an appointment with a physio, but I got there, did a full assessment and got several exercises aimed at strengthening the muscles around my hips, to hold the joint in place better. It was about six weeks of religiously doing the exercises before I noticed results, but the improvement was really noticeable and made such a huge difference to the rest of my pregnancy. So, if you haven’t already – I recommend giving physio a try.

6. Check Skeletal Alignment and Muscle Tension

If this one sounds super hippy-dippy, bear with me. A few years ago, I realised that my headaches (normal headaches, as opposed to sinus headaches where the pain is in the front of my face around the nose and eyes) are often either caused or at least aggravated by tension in my neck and shoulders. It could be from sleeping funny, being crouched over a laptop, or just being stressed and tensing up. Making a conscious effort to relax my neck and shoulders (maybe coupled with a gentle massage) can really help relieve those headaches.

Similarly, with my joints, I’ve realised that when I’m experiencing joint pain the first thing to do is check the alignment of the joint, i.e. are the bones lined up straight or am I sitting, moving or tensing in a way that sends pressure though my joints in an unnatural way. Because I have hypermobility, it’s easy for my joints to partially dislocate or just misalign without me actually noticing, and that can unsurprisingly cause pain.

7. Keep Active

When I was first diagnosed with hypermobility spectrum disorder (as it’s now known), the rheumatologist told me that the most important thing to keep pain at bay was to keep active and build up muscle to support my joints. At the moment, on lockdown, I’m doing yoga pretty much every day with my husband and it’s great exercise that’s very low-impact and thus kind on your joints. I definitely recommend it, and you can find specific yoga flows online that are tailored to particular issues, such as lower back pain or crappy hips (technical term).

Your top tips for coping with pain when you can’t use painkillers:

Do you have any tips or techniques for pain management/coping with pain without medication that work for you? Let me know in the comments below!