baby · health · hypermobility · pain · parenting · top tips

Looking After A Baby When You Have A Joint Condition

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.

lifestyle · sport

Running 22 Miles For The British Red Cross Miles For Refugees

So in September, I took on the challenge of doing Miles For Refugees, a fundraising event for the British Red Cross. I committed to running 22 miles during September – that’s the length of the English Channel. And as of today, I’ve clocked in at 23.28 miles run in total across 17 runs in 30 days! Whoop whoop!

My fundraising page is here if you’d like to donate – or read on to find out more about the challenge and why I did it.

22 miles in a month for the Red Cross

Now, I know that doesn’t sound like much, considering some people run 26 miles in a day (and some absolute nutters apparently run 188 miles in a day… Seriously guys, you make the rest of us look bad). But I’ve never been a runner by any stretch of the imagination, so this is a big deal for me and by far the most running I’ve ever done in my life! Plus since having Little Man and being in lockdown, the most exercise I’ve done has been the odd half hour of yoga, so I’m definitely out of shape.

My experience with the Miles For Refugees challenge

Before I started doing Miles For Refugees, I had no idea how I’d manage with all the running. My hypermobility spectrum disorder means I have to be careful of high-impact exercise because it’s harsh on the joints. Plus, my undiagnosed asthma was the reason I never did any running at school or in my twenties – I couldn’t work out why I seemed so unfit that I was out of breath almost instantly when I started running. Surprise – I finally got diagnosed with asthma a few years ago and it explained so much!

I took due precautions, bought new running shoes, and was careful to take my inhalers religiously. I picked a distance that I hoped I could do within a month while allowing myself days off when my body just wasn’t feeling up to it. And I did okay! My very first run was 0.91 miles (1.5km) according to MapMyFitness, the app I’m using to track my runs. I was absolutely knackered by the end. My final run today was 2.15 miles (3.5km) and I was nowhere near as exhausted when I finished.

Plus, I increased my average pace from 12.55 minutes per mile on my first run to 11.54 on my final run (actually more impressive than it sounds, because on my final run I stopped for a quick chat with a lady who complimented my Studio Ghibli t-shirt). Don’t get me wrong, I’m still sloooooow, but I’ve definitely improved my ability to pace myself as I go and not end up totally exhausted after the first few minutes.

I discovered some new routes around my town, and found myself running at all times of day and all weathers (obligatory photo of me looking awful after getting absolutely drenched on a run, in the official Miles For Refugees t-shirt, is provided below). Sometimes it was fun, sometimes I absolutely hated it, but I’m proud I managed to complete it!

Why am I doing Miles For Refugees?

There’s been so much negative press about refugees and asylum seekers recently. A lot of the news coverage is pretty hysterical and completely loses sight of the fact that refugees and asylum seekers are human beings who are trying to find a better life for themselves and their families in a safe place. Isn’t that what all of us would do, when faced with conflict, poverty, persecution or unsafe conditions? Many refugees are fleeing war and conflict, have lost family members or been split up from them on the way. They are unlucky enough to find themselves in situations that most of us hope never to have to face.

The British Red Cross provides support to refugees in the UK and abroad, and also campaigns for a fair, effective and efficient asylum system in this country. That’s what Miles For Refugees is all about supporting! You can read more about the work of the British Red Cross here.

How can you help?

If you’d like to donate, my Miles For Refugees fundraising page is here. Alternatively, you can donate on the British Red Cross homepage here.

Thank you so much to everyone who’s already donated. It really means a lot to me. This has been a great experience, and I’m so glad to have raised this money for the Red Cross and for refugees who really need support and understanding right now!

running miles for refugees 22 miles for the british red cross fundraising the sickly mama
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 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!

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