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!

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

How To: Looking After A Baby When You’re Sick/Fatigued

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Looking after a baby is hard work at the best of times, but when you’re sick it can be overwhelming. Whether you’re parenting with chronic illness, a bad cold or tummy bug, or fatigue (either from illness or too many sleepless nights!), it helps to have a plan for how you’re going to manage. So, based on my experience as a mama with chronic illness, I’ve pulled together my top tips on looking after a baby when you’re sick or fatigued. Read on to find out more…

Looking After A Baby When You’re Sick

Ask For Help

Whether you’re suffering from a temporary issue – a cold, a tummy bug, a flare up of your condition – or ongoing consistent symptoms from a chronic illness, ask for help. It’s okay! Even the healthiest, heartiest parents need help sometimes. It won’t do you any good to try to do everything yourself. And people love babies, so chances are you’ll have more people willing to help you out than you may imagine… But you do have to ask.

When you do ask for help, try to be specific about what you need – for instance, help around the house, fetching groceries or popping to the pharmacy, or just holding the baby. Most people will want to help if you let them know how. If people have popped over to see the baby, get them to help you out – for instance, they could hold baby for an hour so you can nap!

Do The Absolute Minimum

Again, might sound obvious. But if you’re feeling really unwell, do the absolute minimum you need to do. Things like the washing up, hoovering, tidying, even having a shower… You don’t absolutely have to do them. You need to feed yourself and baby, change baby, and sleep. Everything else is optional! So don’t force yourself to do anything unnecessary, if you don’t have the energy for it.

This may include cancelling on some guests, especially in the early days with a new baby. If people are planning to visit and you don’t think they’ll be helpful – or perhaps you know they won’t – and you’ll end up running around after them trying to be a good host and look after baby and yourself… Cancel the visit. You need to prioritise the well-being of yourself and your baby, and that’s okay.

…Except When You’re Okay

On the days or times where you are feeling better, that’s the time to prepare for the bad days! This may seem more obvious if you have a chronic health condition where the symptoms come and go – but even if you don’t, there will be good days and bad days. You never know when you might catch a cold or flu, or have an upset stomach, and even babies who are normally good sleepers will go through bad patches. So make sure that you’re prepped for bad days.

What does being prepared look like? Here are some suggestions:

  • A stash of easy emergency meals in the freezer – things you can just pop in the oven/microwave and leave.
  • An upstairs and downstairs nappy change station with everything you need for changing, so you don’t have to carry baby too far for changes.
  • A small stockpile of key items for baby (nappies, wipes, formula etc.) that will last for at least a week, so you’re not going to run out and need to go to the shops urgently when you’re feeling sick and/or exhausted.
  • Similarly, try to ensure you have a good stock of spare clothes for your little one, so you’re not going to end up in a pickle if you can’t do laundry for a few days.
  • Talking to your partner, friends and family about how you will manage childcare on sick days, in advance. Have a back-up plan if you are just too poorly to look after the little one – and ideally have a back-up back-up plan just in case!

Practice self-care

Just scraping by will do for a few days here and there when you’re feeling especially dreadful, but it’s not sustainable for the long term. You need to take care of yourself and your mental and physical health.

So, once you’ve worked out what the absolute minimum is, have a think about the next step up – the minimum things you need in order to feel reasonably content. For instance, in my case, I absolutely hate not having a nice hot shower in the morning. Even if I feel rubbish, I know a shower always helps me feel better. So I really prioritised ensuring I got my morning shower every day, as far as reasonably possible. Little Man would be on the bathroom floor in his Moses basket when he was really small, or crawling around with a few toys and a baby sensory video once he was a bit bigger.

Work out your key self-care priorities – perhaps it’s having a shower, listening to music or watching a show, reading a book or getting outside for some fresh air once a day. And make sure you find time to do the things that help you feel okay, even if it’s at the expense of other day to day life admin.

Rest as much as possible

Before you have a baby, everyone tells you to “sleep when the baby sleeps” which in my experience is much easier said than done. If you can get some sleep when baby is napping or someone else comes to help out, then obviously that’s the best thing you can do. But even if you can’t sleep, you can try to rest up. Set up a comfortable spot in the house to have as your base for the day – an armchair, sofa, bed, whatever suits you – and collect as much stuff as possible that you’ll need for looking after baby to keep nearby. Not just obvious things like nappy change supplies, but also toys, books, whatever you’ve got to keep the little one entertained. Try to sit and chill as much as you can.

And when baby goes to bed for the night – go to bed too! It’s tempting to stay up and take some time for yourself, but you’re better off going to bed and getting as much sleep as you can before your next wake up call.

Let go of the mum/dad guilt

When you’re ill, you will not be winning any parenting awards, and that is fine. You need to keep baby safe, clean and fed. If they miss out on a few sensory play sessions, or they spend a bit more time watching YouTube videos to give you a break – it really will not matter in the long run. You’re still a good mother (or father!). They need a parent who takes care of him/herself, and if you don’t do that then sooner or later you will crash and end up much worse than before.

No parent is perfect, whether they suffer from chronic illness or not, so just do your best to let go of the guilt about what you can’t do because of your illness, and focus instead on all the positive things you can do, however small, to help your baby feel loved and cared for.

Your tips for looking after baby when you’re sick

Do you have any experience of looking after a baby while ill? What are your tips for others? Let me know in the comments!

Uncategorised

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.

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

Parenting With Chronic Illness – A Collection Of Articles

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

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

Parenting With Chronic Illness – A Collection Of Articles

Parenting and pacing yourself:

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

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

Coping with a newborn as a parent with chronic illness:

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

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

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

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

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

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

How to thrive as a parent:

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

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

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

fatigue · hypermobility

Fatigue vs. Tiredness (It’s Not The Same Thing!)

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The other day, I was sat with Little Man on my lap I’m the evening. This is, of course, a common occurrence. He’d been very difficult all day with an upset tummy and teething pain. I’d just been playing on the floor with him to distract him, doing tummy time and walking practice and licking Mr Bun Bun (the best part of playtime, of course). I sat back down with him in the armchair, and five minutes later I completely ran out of energy. And I knew I’d overdone it.

I get tired like everyone else, but I also get fatigued, thanks to my medical conditions, and although they sound similar, they’re not the same thing. These days I’m pretty good at managing my activity levels to avoid getting fatigued, but being a parent creates a new challenge in that respect, as you can’t plan for when the little man decides to kick off! So, what are the differences between normal tiredness and fatigue? How can you tell them apart?

Fatigue vs. Tiredness

How is fatigue different from tiredness?

I think a lot of people who haven’t had a chronic illness think that having fatigue is the same as being tired. Which is understandable if it’s not something you’ve experienced! Fatigue does indeed involve feeling tired, but also often includes:

  • Aching muscles
  • Difficulty concentrating or “brain fog”
  • Feeling physically weak
  • Difficulty with decision making
  • Slow responses
  • Poor memory

Plus, the sensation of tiredness/exhaustion is often quite extreme.

As well as having more extensive and severe symptoms than tiredness, fatigue is different in terms of what causes it and how you fix it. It can be caused by long-term illness, including mental illness, or stress.

Most significantly, it often doesn’t resolve with sleep, and the feeling of tiredness is disproportionate to the level of activity you’ve been doing. As a result, it can be quite tricky to understand where your limits are and not go too far. In my case, the other day I was completely surprised that I had apparently overdone it and hit a fatigue wall. I felt like hadn’t had much more of a strenuous day than usual, but obviously it was enough to tip me over the edge.

My experience of fatigue

Firstly I should say that I’m fortunate because my fatigue has improved a lot over the past few years. I first experienced fatigue when I had glandular fever at university and afterwards was left with post-viral fatigue syndrome for a number of months. Then once that started improving, my pituitary tumour started giving me more symptoms…including fatigue!

It’s gradually improved since my second pituitary surgery, when I started taking medication to treat my tumour (lanreotide). The improvement has been so slow as to be imperceptible, but looking back five years it’s a huge change in retrospect. I think as well that I’ve got much better at managing my fatigue in general. I can usually do a busy day or a late night, as long as I have nothing to do the next day. I’m also fortunate that my husband is really helpful at understanding and helping me manage my symptoms.

For me, it’s about ensuring enough downtime around periods of activity. It doesn’t need to be sleep necessarily, but just rest time without much physical or mental exercise. For instance, if I’m doing housework, I need to make sure I sit and have a short break every 15 – 20 minutes or so. If I don’t, I can end up so exhausted I’m useless for the rest of the day. When I got married, my husband had to act as a consultant for my bridesmaids organising my hen do, to ensure that it was enough of a balance of things that I’d be able to make it to the end!

When I’m tired, I can usually power through. Also, even severe tiredness tends to come and go over time, so I’ll feel better for half an hour before the tiredness hits again. When I’ve got to the point of being fatigued, though, there’s no powering through. I am completely useless.

What’s your experience of fatigue? Let me know in the comments!