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

Parenting With Chronic Illness – A Collection Of Articles

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

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

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

Parenting With Chronic Illness – A Collection Of Articles

Parenting and pacing yourself:

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

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

Coping with a newborn as a parent with chronic illness:

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

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

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

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

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

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

How to thrive as a parent:

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

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

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

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

birth · health · hypermobility · pain · pregnancy

My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy

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 spectrum disorder 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, basically:

  • 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 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.

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 pregnsncy 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.

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 for it, 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 condition and how it can affect 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!

baby · health · hypermobility · pain · parenting

Hypermobile Mama

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?

hypermobile mama my experience of parenting with hypermobility spectrum disorder the sickly mama blog
baby · health · history · Just for fun · pain · parenting · teething

Teething Sucks, But It Won’t Kill You (Unless You Live In 1842)

Little Man is FINALLY asleep in my lap for his after-lunch nap, having missed out completely on all naps this morning due to his stomach playing up. Then once his stomach settled, he immediately moved on to having issues with his teeth, so he is way overdue a sleep and has big bags under his eyes. Oh boy, teething is fun.

So obviously, it’s time for another post about teething. This time with a focus on the history of teething (or rather, the history of how humans have thought about teething) through the ages…

The Jaws of Death

Did you know that in the past, teething was often actually considered to be a cause of death? In fact, in 1842 in London, almost 5% of deaths of children under one year old were registered as being due to teething. This was probably due to the fact that children died at the age when they were teething, and doctors didn’t understand the actual cause of death. Children who are teething often have an elevated temperature, which is not actually a fever, but again in the past fever was considered to be a part of teething – as were fits, convulsions and diarrhoea. These beliefs go back to Hippocrates in Ancient Greece.

This all seems pretty strange to us now, when teething is regarded as an unpleasant experience for babies, but hardly a serious condition.

Flossed in Time


Poor teething babies in the past probably weren’t helped by the range of “treatments” used to help with their pain. Here are a few of my personal favourites (seriously don’t try this at home, although if I really have to say that then god help us all):

  • In 117 AD, Soranus of Ephesus suggested using a hare’s brain to ease teething pain (you rub it onto the gums, obviously)
  • In 1545 the English doctor, Thomas Phaire, advised hanging red coral around the child’s neck to prevent teething pain. It also had the handy side effect of helping the child to “resisteth the force of lightening“… So that’s good.
  • In 1575 the French army surgeon Ambroise Pare advised lancing (cutting) the child’s gums, an idea which proved very popular right through to the nineteenth century. In fact, in 1850 Francis Condie even wrote of a case where a dead child was supposedly revived by having his gums lanced.


Hmm. I think I’ll stick with Little Man’s teething monkey. Although admittedly, it doesn’t give him the power to resist lightening (as far as I know, I’ll check the box).

Telling the Tooth


Humans aren’t the only animals who have trouble teething. Other primates and mammals in general also have baby teeth (also known as milk teeth) which are then replaced by adult teeth. In fact, elephants and walruses which grow tusks (basically just massively overgrown teeth) apparently also experience pain when their tusks start growing in, and try to rub them on things just as a baby tries to bite when it’s teething. Which sounds adorable.

It’s a strange thought that parents throughout the ages have all had to deal with teething. And given the crazy remedies that have been suggested throughout history, we’ve all wished it was easier to soothe our teething babies.

coronavirus · health · pain · pituitary · top tips · Uncategorized

Coping With Pain When You Can’t Use Painkillers

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!

coping with pain when you can't use painkillers strategies and tips for chronic pain without medication the sickly mama blog