fatigue · health · lifestyle · sport

How To Get Exercising With Chronic Illness

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Getting regular exercise is important for everyone, but when you have a chronic illness, or if you’re recovering from an illness or surgery, it can feel like a potential minefield – there’s the risk of hurting yourself, impacting your recovery… and to be perfectly honest, it might just feel like too much hard work. But appropriate exercise can help with a lot of health conditions, by managing symptoms, improving sleep, and increasing strength. So how can you get into exercising with chronic illness? I’ve pulled together my thoughts and top tips based on my own experience (which has included recovering from brain surgery twice, post-viral fatigue syndrome, exercise-induced asthma, hypermobility spectrum disorder, and more!).

Exercising With Chronic Illness

Recognise what you’re already doing

First things first. It’s important to acknowledge the exercise you’re already doing. Whether that’s walking to town to buy shopping, or cleaning the bathroom, or just getting up and having a shower, chances are you’re already doing some exercise. Understand what you’re already doing on a regular basis, how difficult you find it and the impact on your body. That should give you an idea of your current ‘baseline’ level of fitness and exercise, and how variable it is. Then you can use that as a starting point to build up from.

Do your research

Next, you need to ensure you understand your health condition(s) and the kinds of limitations they may place on your ability to exercise or the type of exercise you can do. For instance, because of my hypermobility spectrum disorder I should try to avoid high-impact exercise and instead focus on low-impact exercises such as swimming. I also need to be extra careful about ensuring I have good form and don’t over-extend my joints when I’m doing yoga.

Try talking to your doctor, and make sure they approve of the exercise you’re planning on doing. You could also be asked to be referred to a physiotherapist, who may be able to recommend specific exercises that will help your condition.

But also – have a research online for advice on exercising with your specific health condition or chronic illness. Often you can find very detailed information online (for instance, this article on exercising with hypermobility) which your doctor may not be familiar with. Of course, it’s important to be careful to use reputable sites and look for advice which is backed up by peer-reviewed scientific research (quick rule of thumb: if the site you’re looking at is trying to get you to buy something, be a bit more sceptical of its health advice…). And, of course, check any proposed new exercise regimen with your doctor.

Set realistic targets for exercising with chronic illness

If you’re currently struggling to get into the shower in the mornings, it’s probably not realistic to set yourself the target of running a marathon – and it probably won’t do your body much good to try. Set yourself realistic targets, which are in line with the advice for your condition and which permit time off for rest. For instance, rather than saying you want to do a certain type of exercise once a day, you could set yourself a target to do a certain number of minutes of exercise (or steps, miles etc.) in a week. That way, you can do more on days when you feel good, and take a break on bad days. Start small, and aim to build up over time, so that it’s not too much of a shock to your body.

If your health condition tends to be quite variable, you could also think about giving yourself workout options which you can select from depending on how you’re feeling each day. For example, aiming for ten minutes of gentle stretching on a bad day, twenty minutes of yoga on an okay day, and a short run on a good day (or whatever works for you!), will mean that you’re flexing your workouts around your chronic illness.

Work with your body, not against it

Following on from the above, the most important thing when you’re exercising with chronic illness (or when recovering from surgery or illness) is to listen to your body and work with it, not against it.

There’s a culture in some fitness circles to “push yourself to your limits”, that “pain is temporary” or something to push through. That kind of attitude is not going to help you develop a good relationship with exercise in the long run (no pun intended…), if you’re suffering from chronic illness. If your body tells you to stop – stop! You can always do more exercise when you’re feeling better.

Over time you’ll probably get the feel for when your body is saying no as a result of your health condition, and when it’s just saying no because you’re giving it a good workout. But it can take a while to get to know what you can handle, how to recognise when your body’s had enough, and how a workout will impact you the next day. You may also start to notice other patterns that you hadn’t picked up on previously, in terms of how activity affects your condition.

Measure progress against yourself – not other people

As the old saying goes: comparison is the thief of joy. If your friends are comparing notes on the 5k they ran at the weekend, don’t let that make you feel bad about the fact that you can only run 1k, or that you were proud of managing a five minute walk the other day. Even comparing yourself to others with the same health condition is not helpful. Remember that your body is unique, and everyone responds differently to illness (and to exercising with chronic illness!). Focus on your progress by comparing yourself to your previous achievements and your baseline ability to exercise. That way, it’s a fair comparison and you can celebrate your progress, instead of feeling like you’re not doing enough.

Cut yourself some slack

This is probably the most important point on the list. You need to cut yourself some slack. Things won’t just go smoothly. There will be times when your health condition probably means that your progress goes backwards for a while. You may feel frustrated that you’re ‘back where you started’ (or even further back), as a result of a flare up in your illness.

That’s okay. It’s okay to go backwards, and it’s okay to be frustrated by it. But try to be kind to yourself. If you need a break, have a break. If you need the day off, take the day off. If you need the week off – likewise. Remember that it’s okay to find things difficult, or need to rest. The whole point of exercise is to look after your health and wellbeing.

Don’t be afraid to give up and do something different

With exercise, there can be a culture that it’s bad to be a “quitter”. Well, that’s true – if you stop exercising completely. But if you’re just not getting on with a specific type of exercise, then there’s nothing wrong with quitting it in order to try something else. For instance, if you’re finding running too difficult, you could try swimming or yoga instead. The point is to find something that you actually enjoy doing, and build it into your routine, so that it’s sustainable for the long term.

Build a habit again… And again… And again.

One of the most important things when you’re trying to improve your fitness is to get into a routine with your exercise. Then, it just becomes part of your day to day life. And the tricky thing when you’re trying to exercise with chronic illness, is that the routine tends to get broken. For instance, I remember a couple of years ago when I’d got into a really good routine with dance classes and rock climbing, and had gained a lot of strength and fitness… And then randomly had a really bad asthma flare up that meant I struggled just walking around for weeks and weeks. I lost the habit of going to class, I lost a lot of muscle mass. It was totally disheartening.

It can be hard to force yourself to get back into a routine one it’s been broken, but the only advice I can give is to persevere and be patient. Chances are, you’ll have to keep re-starting your routine as time goes by. But I think it helps to focus on the positives. For instance, even though I had lost a lot of strength and fitness, when I restarted dance and climbing, I hadn’t forgotten the theory and skills I’d learned. Although I felt like I was back to square one, in fact I was still a couple of squares further along the board, compared to when I originally started. And the second time around, it didn’t take quite so long to get back up to speed.

How to get into exercising with chronic illness… Your tips!

Have you managed to develop a good exercise routine with chronic illness – or while recovering from surgery or illness? What are your top tips? Let me know in the comments below!

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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!

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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.

lifestyle · sport

Running 22 Miles For The British Red Cross Miles For Refugees

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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!

birth · health · hypermobility · pain · pregnancy

My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy

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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!

baby · health · hypermobility · pain · parenting

Hypermobile Mama

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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?