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?
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!
Today’s blog post was going to be about a totally different subject, but I’ve just seen this petition and I think it’s so important that I want to share and write about it now.
Due to Covid 19, many hospitals (not just in the UK) are restricting the presence of birth partners on wards before and after births, only allowing their presence for women in active labor. However, there is now concern that some hospitals may be considering stopping birth partners from attending at all, and requiring women to labor in hospital alone.
This is a serious cause for concern. Continuous support from a birth partner is associated with improved outcomes for women and babies, including a reduction in the requirement for interventions. Unsurprisingly, it can be difficult for women to advocate for themselves while they are in the middle of giving birth, and they need to have a supportive, trusted person on hand who can do that for them.
One of the reasons I feel strongly about this is my personal experience. When I gave birth, I was induced and I dilated extremely quickly, much faster than the midwife expected. I had been told they would check on my dilation after four hours, and they were expecting progress of about half a centimetre per hour. Until I reached 4cm dilated I was not going to be allowed gas and air, all I could have was paracetamol or an epidural. After 2 hours I was in so much pain that I asked for an epidural as I couldn’t see how I could cope with twelve hours or more of it, but no anaesthetist was available. Shortly after that, I felt my body starting to push, and told the midwife, but she didn’t believe I could be that far along. It was only because my husband was there and was insistent that they check what was going on, that the midwife looked, at which point she realised that I was fully dilated and in the process of pushing the baby out! Cue a massive panic because she was not ready for that stage of labor (and for some reason this seemed to require a lot of online paperwork) but at least I finally got the gas and air. If my husband hadn’t been there to advocate for me, god knows at what point they would have realised the baby was on its way, because I was in no position to have a debate and in the absence of any real pain relief could barely talk.
For some women, the presence of a birth partner and advocate is even more important. Black women are five times more likely to die from complications of pregnancy and childbirth when compared to white women in the UK. Mixed race and Asian women also suffer a higher risk of death. These women are being let down by our health system and the professionals who attend them. They need to have the support of a trusted partner when giving birth, and are likely to be disproportionately badly affected by any ban on attending birth partners.
In America, where some hospitals had already enacted a ban on birth partners, they have been forced to back down after a public outcry. Let’s make sure that a ban of this nature can’t happen in the UK.
The irony is that in the US, the bans were enacted after asymptomatic pregnant women, who were carrying the virus without knowing, infected hospital workers during labour. But restricting the presence of birth partners obviously does nothing to reduce the risk of labouring mothers transmitting the virus – they still have to be in hospital. Instead, we would protect both women, babies and health workers far better by ensuring that UK midwives, doctors and nurses are provided with adequate Personal Protective Equipment (PPE) to protect them from the risk of transmission from women or birth partners during labour. So far the government and Public Health England have been absolutely woeful at ensuring staff are protected with sufficient PPE in line with WHO guidelines. We’ve heard a lot about companies being drafted in to supply more ventilators – but PPE is just as important.
Please sign the petition here: change.orgMe and Little Man
