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?
During Little Man’s night time feeds, we try to keep the room as dim as possible, to encourage him to stay sleepy and go back to sleep as soon as possible afterwards. We have a very faint bedside table lamp which is perfect for the job. However, even this is frequently enough to send Little Man into full-blown Moth Boy mode. He loves to just stare at the light, sometimes arching himself backwards almost out of my arms in his desperation to gawk at it. A straw poll of mums from my NCT classes suggests I’m not the only one with a moth baby. Apparently, lots of babies stare at lights!
In their first month of life, babies are much less sensitive to light than adults. 50 times less sensitive, in fact.That’s why they like to look at high-contrast black and white shapes in their first couple of months of life. In fact, research has shown that very young babies recognise their mother based on high-contrast stimuli such as the shape of their hairline on their face. If this is obscured e.g. by a cap or scarf, tiny babies aren’t able to recognise their mothers – so don’t change your hairstyle too much when you have a newborn (as if hairstyling will be remotely on your mind).Lights are obviously about as high-contrast as it gets, so they are naturally very appealing to babies!
Can staring at lights damage babies’ eyes?
Well, yes and no. Exposure to light is an important part of the development of normal visual function, and influences the development of neural connections. However, overexposure to high-energy visible light, particularly blue light and UV, can be damaging to eyes of all ages.However it’s not particularly likely that your baby is staring at the sun; it’s usually dimmer indoor lighting that catches their attention. Where artificial lights have the intensity of sunlight, damage can occur from brief exposure. Based on studies in mice, it’s believed that longer term exposure to less intense light can also be damaging. In general there’s no recommendation to stop children from staring at lights, but it’s probably not a bad idea.
How can I protect my baby’s eyes?
It’s recommended to protect your baby’s eyes from bright sunlight just as you would your own – with sunglasses. The possible effect of exposure to blue light from screens is not yet fully understood, so limiting screen time is recommended (and not just to protect your child’s eyesight!).
When do babies stop staring at lights?
It seems to be common behaviour for babies to be attracted to high contrast objects for the first six to eight months, as it helps their eyes to focus. But there’s no set time to expect babies to lose their interest in lights. Like everything else, they’ll get there in their own time.
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 Fascinating History Of Teething
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.
The History of Teething Treatments – 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. Not sure that one would have stood up to a peer review process…
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. Little Man still has so many teeth left to go, and everyone has their own opinion about which teeth are the worst to cut – I can’t exactly say I’m looking forward to it!
So after much chasing of the hospital, finally they have agreed that I should go back on my medication for my pituitary tumor. The tumor is a very rare kind, which produces thyroid stimulating hormone, and in fact is so rare that there are no medications which are certified for treating it. Therefore, my endocrinologists use medication for other types of pituitary tumor, off-label. It’s called cabergoline, and it has some pretty niche side effects… As you may have guessed from the title of this post. I’m going to write about cabergoline side-effects, but first: why am I on this medication in the first place.
When I wanted to try to get pregnant, the doctors tried taking me off medication completely, but the symptoms of high thyroid levels came back after a couple of months. So they tried me on cabergoline (Dostinex for any Americans reading), a dopamine agonist which is usually used for treating a much more common type of pituitary tumor called a prolactinoma. And – surprisingly – it worked! I was delighted, because the doctors had suggested there was only a one-in-five-ish chance that it would actually work to treat my condition – thyrotropinoma, a.k.a. a pituitary tumour which secretes thyroid stimulating hormone.
The thing about cabergoline though, is that it has some particularly weird possible side effects…
Possible side-effects of cabergoline…
All dopamine receptor agonist drugs come with a risk of impulse control disorders. That means compulsive gambling, compulsive shopping, hypersexuality, binge eating and really any form of addictive or impulsive behaviour. As well as prolactinoma, cabergoline is prescribed for Parkinson’s Disease, often in much higher doses. Here’s an article about a Parkinson’s Disease sufferer who experienced extreme impulse control side effects from taking the drug. It’s from the Daily Mail but well, what can you do. Reputable newspapers don’t usually go for true life scandal about medication that turns you into a transvestite con artist.
Taking A Gamble
Some patients won lawsuits against the companies who manufactured these drugs, for failing to provide a warning about these side effects, because of the effect the medication had upon them and the impact on their lives. There have been other cases where people have escaped prison sentences after committing crimes, by successfully evidencing that their behaviour was caused by the medication – although that argument doesn’t work for everybody.
These side effects aren’t especially common in pituitary patients, but my endocrinologists warned me about them before I first started on the drug. Every time I go to the hospital with my husband, they check in with him that I haven’t started gambling or compulsively shopping. Obviously they check in with me too, but they like to get his more unbiased view!
Other Side-Effects (It’s Not Just Gambling Addiction)
More common side effects of cabergoline include possible cardiac effects, low blood pressure and dizziness, nausea and vomiting, and hallucinations. Other less common side effects include psychosis and delusions. It’s really a list of side effects that makes you think twice about taking the medication. I’m a member of several Facebook groups for pituitary patients, and there are often anxious posts from patients who have been prescribed cabergoline who are concerned about the possible side effects.
Ergot-ta Be Kidding Me
So why all the crazy side effects? Well, cabergoline is actually derived from ergot. Ergot is a kind of fungus which can grow on grains and, if ingested in large amounts, will make you crazy – hallucinations, delirium, psychosis and mania, among other things. It’s even been suggested that ergotism might have been the root cause of the Salem witch trials, with ergot poisoning causing symptoms of “bewitchment”. So perhaps it’s not surprising that cabergoline can have some pretty crazy side effects too.
My Experience Of Cabergoline Side-Effects
Last time I started the medication, I got on with it pretty well. I did experience some dizziness and low blood pressure – I tend to have somewhat low blood pressure anyway – but the longer that I took the drug, the more my body adapted to it, and the blood pressure issues resolved. So I’m hoping that I won’t have any major problems this time… Fingers crossed! But if you see me in Ladbrokes, maybe let my husband know.
Little Man is in the unenviable position of having colic and starting teething, which means he is a mega grumpus on a regular basis. Something that has always seemed particularly unreasonable about his behaviour is that he will regularly stop crying and chill out if he is picked up and walked around the house (especially if he goes on his dad’s shoulder, which is good absolute favourite place to be), but the second we sit down with him, he starts crying again.
Up until now, I was under the impression that this was because he is a deeply uncooperative child, but I discovered entirely by accident that THIS IS AN ACTUAL THING THAT ALL BABIES DO BECAUSE OF SABRE TOOTHED TIGERS.
Why do babies stop crying when they’re being carried?
It’s proposed that this reaction has the evolutionary function of increasing survival chances if the mother needs to escape from a situation with her child.
Unfortunately for parents with grumpy babies, the soothing effect only works for as long as the baby is being carried around. So if baby is grumpy because he was upset by a loud noise or sudden pain (like immunisations), then carrying them around will soothe them. But if the reason they’re crying is something that’s still ongoing when you try to sit down or put them down (such as hunger or painful wind), they’ll just start crying again straight away. Great.
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.
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!
Did China have a moral responsibility to warn the international community sooner about the threat of the emerging coronavirus? Well, some people think so. But China disagrees. Perhaps because they were ON A BREAK.
Like that time where Ross decided not to tell Rachel they were still married, China kept Covid 19 on the down low, presumably hoping that the problem would somehow just go away of its own accord. And, just like Ross and his history of unwise marital choices, China too has previous for this kind of behaviour (cough cough SARS cover-up, 2002).
2. South Korea – Monica Geller
China’s little sister used to be much bigger, but lost a bunch of weight landmass to the Communists at the end of the Second World War.
South Korea has kept its coronavirus death toll low through a rigorous programme of testing, treating and tracing contacts, plus social distancing measures. This is exactly the kind of country that’s obsessed with hygiene and has 11 categories of towels.
3. United Kingdom – Chandler Bing
No-one knows what Chandler’s job actually is, and similarly no-one really knows what the UK government was doing with all the time it had to prepare for the impact of coronavirus. Even the Prime Minister treated Covid 19 as an opportunity to crack tasteless jokes… How very Chandler Bing. Many experts now believe the UK will be one of the worst-affected European nations. Could we BE any worse at responding to a global pandemic?
If only the pandemic had taken place during a later season of Friends, the UK might have benefited more from the shining example of Monica/South Korea. Unfortunately, we’re still in the early seasons, with the UK in a co-dependent relationship with Joey…
4. United States – Joey Tribbiani
The USA’s response to coronavirus can best be described as… confused. Like the time that Joey got fired from Days Of Our Lives for claiming that he wrote all his own lines, Donald Trump has been called out for spreading fake news about coronavirus, such as saying that it’s a hoax and that one day the virus will just disappear “like a miracle”.
Germany reacted furiously when 200,000 American-made protective masks destined for Berlin mysteriously disappeared en route, and there are suspicions that the US government redirected them for its own purposes. I guess the United States DOESN’T SHARE FOOD PERSONAL PROTECTIVE EQUIPMENT.
Could the US have done a better job addressing the pandemic? Well, at this juncture, it’s a moo point.
5. Italy – Rachel Green
Just like when a night of unexpected passion between Ross and Rachel resulted in a surprise (Emma), Italy’s unexpectedly close relationship with China may have resulted in a surprise spike in Covid 19 cases in the northern regions of Italy, which have a high number of Chinese workers. Where are those workers employed? Why, just like Rachel, they work in the fashion and textile industry. And it’s increasingly clear that China/Ross and Italy/Rachel have a pretty messed up relationship…
6. New Zealand – Phoebe
Phoebe cares a lot. That’s why she’s a vegetarian and shops at flea markets. And that’s why she’s New Zealand, which has pursued a highly-praised policy of eliminating Covid 19 transmission completely within its borders. Plus, Prime Minister Jacinda Adern gave a very Phoebe-esque speech assuring children that the Easter Bunny and Tooth Fairy are considered key workers and thus would not be affected by the lockdown. And she finished up by singing a song about a foul-smelling cat… Or so I’ve heard.
7. The World Health Organisation – Mr Heckles
No-one wants to engage with Mr Heckles, the crazy downstairs neighbour who keeps banging on the floor with a broom and shouting “Test for cases! Trace and isolate contacts! Use adequate personal protective equipment!”
Ugh, the WHO. Such a pain.
8. The Novel Coronavirus – Janice
Much like coronavirus, I’m pretty sure that Janice doesn’t have a surname.* They both seem to have the ability to pop up literally anywhere, no matter how much they’re not wanted. And once you’ve been involved with Covid 19, it seems like it’s pretty difficult to break up.
So my awesome husband came across this great recipe for an awesome chilled coffee drink you can make at home. It’s called Dalgona coffee, it’s Korean, you can make it with ingredients you already have, and it feels like something super fancy you need to go to a coffee shop for!
He got the recipe from this website and I’ll direct you there as well for the full details. Essentially you make a meringue-style coffee foam by whisking equal quantities of good-quality instant coffee and sugar with a little bit of water, until it forms stiff peaks just like a meringue. Then you dollop it into cold milk. You can either mix it in with the milk or leave the foam on top and drink the milk through the coffee foam – I recommend the latter option because not only does it taste great, but the velvety texture is very satisfying.
It’s very quick and easy, and you can make a large amount of coffee foam and refrigerate it for a couple of days to use later. We made dalgona coffee over lunch one day and it was a great afternoon treat and something a bit different to do during quarantine.
So ever since Little Man arrived in the world, we have been wondering whether he’s going to be right-handed or left-handed. I’m right-handed, but there are lots of lefties in my family. And my husband is sort-of left-handed (he writes and eats with his left hand but uses his right hand for racquet sports in an ambidextrous sort of way).
I was initially convinced Little Man was a leftie-in-waiting, because at first it always seemed like he flailed around at us/hit his dad in the face with his left hand. Then, about two days after I’d mentioned this to my husband, he suddenly switched and started using his right hand more instead. Then he went into a phase of really switching from preferring one hand one day, and the other hand the next. So I started to wonder – at what age does our dominant hand become fixed?
So I started Googling, and found a stack of contradictory information. Some places say hand preference is set by 5 – 6 years. Others say it’s set by 18 months. This article, on the other hand, says that “Hand preference is the product of multifaceted developmental processes that begin before birth and expand during early infancy”, which quite frankly is not the kind of simplistic answer I was looking for.
Different babies apparently develop hand preference at different rates, which makes sense, because they develop everything else at different rates too. Something that is interesting from the article I linked is that apparently left-handed preference doesn’t develop as strongly as right-handed preference, and they think that this could be at least partly due to right-handed mothers unconsciously engage their children’s right hands more during play. So now, I’m going to try to make a special effort not to specifically pass objects to one or other of Little Man’s hands, but let him choose for himself.
We had big plans for Little Man’s first Easter. We were going to go stay with my parents. My father-in-law was going to come along too, as were my sister and auntie. On the Saturday lots of other aunties and uncles were going to visit to get their first chance to meet the little dude. And as my parents live in the countryside, we were going to chill in the garden, go for lovely walks, visit the local pubs… Etc etc. Then coronavirus hit and instead we’ve had to spend Easter at home, just the three of us.
So it wasn’t quite what we planned, but we still had a fabulous time. Some of my highlights were…
Little Man’s First Easter Egg Hunt
Martin and I took it in turns to hide eggs in the garden and then search for them. Little Man was absolutely useless at finding eggs. He spent most of the time just squinting in the bright light and dribbling. He’s seriously going to have to up his game for next year.
Eating, Drinking and Baking
We’ve had some really great food and drink this weekend! Particular highlights: Martin made me a fabulous gin and lemonade with mint leaves on Saturday, and made incredible lamb neck fillet kebabs on Sunday. He put a dry rub on the meat and let it marinade overnight and it was dreamy!
I baked a delicious gluten free Easter chocolate cake from this Nigella Lawson recipe, which I highly recommend! I also think it will be fabulous in the summer with raspberries instead of mini eggs.
Family Video Calls
We had some lovely video calls with family over the weekend and it felt like we had fun together despite the lockdown. We chatted to family in Japan on Saturday morning while they had their dinner, and it was their first chance to meet Little Man albeit remotely! It’s crazy how our nieces in Japan grow so fast, every time we see them, they seem to have grown so much. Another highlight was family Easter quizzes with my family over WhatsApp/Kahoot, masterminded by my awesome sister. It was fun to do something different and interactive together.
Playing Dress-Up
Obviously Easter means bunnies, which means a great excuse to dress Little Man up in an adorable costume! He was our Easter Bunny for the day on Sunday and it was ridiculously cute.
