health · top tips

How To Cope With Having A Mystery / Undiagnosed Medical Condition

I’ve previously written about how it feels to have a mystery or undiagnosed health condition. This post follows on from that, and looks at tips and strategies for how to cope with undiagnosed illness or while managing an unknown medical condition.

tips for how to cope with undiagnosed illness the sickly mama blog

Tips For How To Cope With Undiagnosed Illness

1. Acknowledge and talk about your feelings

Having a mystery health condition is really hard and stressful. It’s completely natural and normal to feel sad, frustrated, angry, stressed out and more. Trying to keep your emotions pent up isn’t healthy. It won’t help you cope with undiagnosed illness, and it won’t help you feel better in the long run. Give yourself a chance to feel those emotions, and accept the way you’re feeling.

Ideally, talk to someone – a friend, family member or partner – about how you’re feeling. Not only will it help you deal with your emotions, but it will also help them to understand what you’re going through.

2. Communicate your needs

One of the most common complaints from people with chronic illness is that other people don’t understand what you’re going through. It can be especially upsetting and frustrating when it seems that the people closest to you don’t understand – or worse, that they’re not even trying to understand how you’re feeling. You can end up getting that your needs are sidelined or ignored, or that no-one is prepared to help.

Remember that the only way that people will understand is if you tell them. Try to be proactive about communicating and give people a chance to listen to how you’re feeling and what you need from them. I remember a few weeks after my first brain surgery, I had to travel across London. I was very wobbly and it was my first time out on my own, but outwardly I looked like a normal 21 year old.

At King’s Cross station, it was very busy but thankfully I got lucky and found a seat while waiting for my train. Everyone else with a seat in that area was middle aged or older. An elderly woman walked up and stood nearby, and started giving me angry looks and clearing her throat. Clearly she expected me to give up my seat for her, as the youngest person there. But she never actually asked for it.

If she had asked, I would have explained that I really needed the seat, and probably someone else nearby who wasn’t in such need would have offered her their seat. But she never actually asked, so I never explained, so she never got to sit down. No doubt she thought I was incredibly rude, but she didn’t communicate her need, so no-one accommodated it. This really drove home to me the importance of asking for what you need. You might not get exactly what you’re going for… But if you don’t ask, you’ll get nothing at all.

Be specific if you can – for instance, rather than saying “I get very tired and need to rest”, you’ll get better results from saying “I get very tired and can’t be on my feet more than about ten minutes at a time. Then I will need to sit down for half an hour”. You may think that your emotions and needs should be blindingly obvious to anyone with half a brain… But it’s not always the case.

3. Be kind to yourself

Remember to be kind to yourself. When you’re frustrated and stressed and finding it hard to get things done, it’s easy to push yourself too hard and forget to give yourself a break. But it’s important to look after yourself and your mental health. Don’t spend all of your available energy doing life admin – make sure you occasionally have time to have a bath, read a book, chat to a friend, or whatever it is that you enjoy.

But being kind to yourself isn’t just about having a spa day. It’s also about listening to your body and believing in yourself. When you’re experiencing medically unexplained symptoms, it can be easy to start worrying that they’re all in your head. When there is no label that explains the symptoms you’re experiencing, you may feel that people don’t take your illness seriously – or that you shouldn’t be severely affected by it. Try to remember that a diagnosis is not a permit to be ill. You don’t need permission to be sick. Your experiences – your pain, fatigue, whatever other weird and wonderful symptoms you’re experiencing – are real. And you need to listen to your body and its needs, and take care of yourself.

4. Be your own best advocate

It’s a hard truth that when you have a chronic illness, the one who cares most about finding a diagnosis and a treatment is YOU. Yes, it’s your doctor’s job to work out what’s going on, but no matter how committed your healthcare providers are, at the end of the day it’s just that – a job to them. Whereas to you, it’s your life.

Don’t be afraid to advocate for yourself. That is likely to mean different things to different people. It might mean chasing up those appointments that are slow to arrive, or those test results that no-one seems to want to discuss. Or, it might mean having the persistence to keep going back with the same symptoms that no-one seems to want to investigate, or pushing for a second opinion . It might mean using these techniques to get your doctor to listen to you. Whatever you need to do to push your best interests.

5. Seek out support to help you cope with undiagnosed illness

You don’t need to do it alone. Don’t be afraid to ask friends and family for support. It can be difficult to find external support networks, because most charities and support groups focus on specific illnesses… Which is difficult if you don’t know what illness you have. But support is out there for the undiagnosed.

You can join Facebook support groups such as Undiagnosed Illness Support Group or Undiagnosed Chronic Illnesses… And many more. Equally, you may wish to look online for ways to connect with people who experience similar symptoms to you, even if you don’t have a diagnosis yet.

Do you have any tips on living with an undiagnosed medical condition or mysterious unexplained symptoms? What are your recommendations for how to cope with undiagnosed illness? Let me know in the comments!

health

What It’s Like To Have A Mystery/Undiagnosed Illness

Today I’m going to be talking about coping with having an undiagnosed illness – one where the doctors can’t work out what’s wrong (or may even not believe that anything is wrong at all).

I think I’m pretty well equipped to write about this subject; it took years for my brain tumor to finally be diagnosed, including almost a year where I had a resting heartrate of 140 beats per minute (for context, about 60 – 100 bpm is normal, so that’s pretty darn fast) for no reason that anyone could explain. Then, more recently, after I gave birth to my son I experienced unexplained thyroid issues that took a number of months to diagnose.

What it feels like to have an undiagnosed illness

what it feels like to have a mystery undiagnosed illness the sickly mama blog

Having an undiagnosed illness is really stressful (unsurprisingly). It can be helpful to break down and acknowledge some of the key reasons why that is the case, and you may find this list helpful to share with family and friends if they’re struggling to understand what you’re going through. I’ve also written a follow-up post with tips to cope with having a mystery health condition.

The uncertainty is frightening

Often the options for what’s causing your symptoms may include life-changing and/or life-threatening illnesses, such as cancer. It’s very scary to live with the threat of that hanging over you, and it will affect those closest to you as well. It can be difficult to carry on going with your day to day life with that fear constantly in the background.

It’s surprisingly busy and tiring to manage healthcare tests and appointments

It is stressful, unpleasant and often exhausting to go through repeated sets of diagnostic tests. Not to mention that it can feel like a full time job to be constantly chasing up the hospital for test results, next steps plans, and appointments.

It’s hard and depressing having to adjust to having to change short and long term plans

You may have to make changes to your life or future plans based on your symptoms, with no idea whether you will ever be able to go back to how things used to be, or whether your plans will ever be achievable. It can be depressing feeling “left behind”, especially when new symptoms that you initially hope will clear up quickly seem to be sticking around indefinitely. You may feel like you’re mourning the loss of long-held ambitions or dreams.

It’s tiring to keep people updated

Friends, family and employers expect regular updates and it can be difficult to keep telling people that you still don’t know what is wrong.

You can end up minimising how sick you really are

In the absence of a diagnosis, it can be easy for other people to (purposely or unconsciously) minimise or be dismissive of how sick you really are. It can be difficult to get enough support, and it can be frustrating and upsetting to find that people close to you don’t seem to be taking your illness seriously, or even forget about it at times.

Linked to the above – it can be easy for YOU to underestimate your illness. It’s easy to beat yourself up for not getting things done or not keeping up with your normal routine, when there’s nothing “officially” wrong with you. You may worry that nothing is really wrong, that you’re just lazy, or weak.

what it feels like to live with an undiagnosed health condition or mystery illness the sickly mama blog

You can feel like no-one is listening

You may feel that friends or family members don’t understand what you’re going through, but it can be even worse if you feel that your doctors themselves don’t take your symptoms seriously or are not listening. It can be very depressing and stressful to keep going back to your doctors trying to get them to investigate your symptoms.

l’ve written previously about techniques you can use to get your doctors to listen to you, which you may find helpful.

It can be hard to manage existing responsibilities

It may become hard to manage your existing responsibilities – not just work, but parenting or caring responsibilities, or even smaller things like managing bills, life admin and keeping the house clean. Tasks that haven’t been done can build up, causing a high level of background stress and/or guilt about not doing a good enough job.

Money worries with undiagnosed illness

Chronic illness often brings money worries with it. Depending on where you live, you may be dealing with stress and worry about medical insurance and whether it is likely to cover the cost of your diagnostic investigations and subsequent treatment. But sickies everywhere will worry about employment, having to take time off work, and whether continuing to work is realistic in the long term, given your symptoms.

Your Experiences of Mystery/Undiagnosed Illness

Phew! That’s a lot to deal with. Have you experienced living with an undiagnosed or mystery health condition? How did it make you feel? Let me know in the comments! I’m planning on following up this post with a look at coping strategies for mystery conditions, so let me know your thoughts.

baby · coronavirus · health · parenting

Getting A Covid 19 Coronavirus Test For Your Baby

So the other day, when Little Man came home from nursery, he had a bit of a runny nose. He was unsettled overnight, and in the morning was very snotty – like a fountain with a bad algae infestation – but seemed happy enough, so he went off to nursery in the morning as usual. Then, just after 10am, the nursery called to say that as he’d been coughing, they needed to send him home. And we needed to get a coronavirus test for our baby.

Nursery weren’t really worried that he had coronavirus; his main symptom was a runny nose, which isn’t usually a symptom of Covid – but as he’d been coughing of course they had to play it safe. My husband booked Little Man in for a Covid-19 test, and I took him off to the testing site in the afternoon. I thought it might be helpful to share our experience, because I really didn’t know what to expect with getting a baby tested for coronavirus, and to be honest some aspects of the process were a little baffling! It would have been helpful to read about someone else’s experience before we went. So here goes…

SPOILER ALERT: As we suspected, when the results came back they showed that Little Man did not have coronavirus, just a nasty cold.

getting a covid-19 coronavirus test for your baby in the UK my experience the sickly mama blog parenting

Getting A Covid 19 Coronavirus Test For Your Baby

Booking the test

You can’t just turn up to a Covid testing site and expect to be seen. Instead, you have to book a testing slot in advance, which you do via the .gov.uk website. Testing is free on the NHS if you have one or more of the main symptoms of Covid-19.

My husband actually booked our test slot while I was off picking up Little Man from nursery. You can book up to three household members in together for testing, and the process is pretty straightforward. After giving your postcode, you’re informed of your nearest coronavirus testing site – we were lucky to have one very close by. You could select a drive-through test or a walk-in test, and I went for the latter as it seemed more practical with a baby. You can pick a half hour long time slot for your test, and they tell you that it shouldn’t take longer than an hour. Fortunately for us, there were lots of free timeslots, so we could select a time that suited us right after Little Man has his lunch.

The website tells you that at some sites, you have to do the Covid swab yourself, while at other sites people do it for you – but it doesn’t tell you which one it’s going to be, based on the location you pick. We were also told to bring photo ID, although in the end no one actually asked to see it.

covid test site sign coronavirus UK testing site qr code drive through walk in the sickly mama blog

Finding the coronavirus testing site

I didn’t have a problem finding the test site itself – the problem came after we arrived. The testing site was set up in a car park. Not especially surprising for a drive-through testing centre. However there was no signage to indicate where to go for a walk-in test. I wandered around a bit, looking for a sign, being completely ignored by the staff there, and eventually gave up and just walked into the drive-through test entrance.

This attracted enough attention that someone finally came over to help. They seemed surprised to see someone coming for a walk through test, but took me to a table to one side of the car park, and told me to wait…

The Covid-19 Self Test Pack

I was given a sealed pack that contained various items – a swab (basically a cotton bud or Q-tip), tissue, plastic tube, two sealable plastic bags, and a set of instructions for how to conduct a Covid-19 Self Test.

The instructions were fine, but they’re not designed for getting a Covid-19 coronavirus test for your baby. In fact, all the instructions said on the matter was: “Children aged 11 and under – Adult to test child. Use the supplemental instructions to help you do this“. Fine… Except that I wasn’t given any supplemental instructions. Hmm.

I asked a member of staff, who said that he thought that you just needed to swab one nostril for young children – grown-ups have to swab their tonsils and nose (in that order, fortunately). I’m not sure whether the “supplemental instructions” on swabbing young children would have gone into more detail, but I do think it seems daft to have a separate set of instructions instead of just printing them all in one place.

I also think it would have been helpful not only to have actually had a copy of specific instructions of how to administer a Covid-19 coronavirus test to a baby, but to have had them in advance of going to the test site. If you knew what you were going to be asked to do, you could plan better how best to bribe/trick/otherwise deceive your baby into complying with the test. As it was, when we went to the site I didn’t even know that I would be asked to swab Little Man myself, let alone the details of what that would involve.

covid-19 self-test step by step guide UK government instructions coronavirus leaflet the sickly mama blog

Conducting A Covid 19 Coronavirus Test For Your Baby

What I had to do:

So, I had to sanitise my hands carefully, swab my baby’s nostril – according to the adult instructions, ideally for 15 seconds and quite deep into the nostril until you feel resistance… It didn’t sound super achievable, when you consider that Little Man screamed, cried, grabbed my hands, and sometimes tried to bite me most times I just attempted to wipe his runny nose with a tissue.

Then I had to break off the long end of the swab, put it into the plastic tube without spilling any of the liquid in the tube, put that and an “absorbent pad” into a Ziploc bag, put that bag into a sealable biohazard bag, and put that bag into a box. Yay.

The Complications:

Did I mention the fact that it was a windy day? And that I was sat at a trestle table in the middle of an exposed car park, with nothing to provide a wind break, and handfuls of plastic bags, loose pieces of paper, and other objects that seemed designed to fly away at any moment. Oh, and nothing to weight them down with.

The inevitable did of course happen, and half my Self Test Pack ended up scattered across the car park by the wind while I was trying to unpackage the swab. So then I had to scurry around trying to collect them all up in one hand without contaminating the swab in the other, which was super fun.

How it worked in practice:

I distracted Little Man with a toy he hadn’t seen for a while, which got his attention enough that I actually managed to wiggle the swab around fairly deep in his nostril for about seven or eight seconds before he started protesting.

When the swab came out it was very snotty (eurgh, sorry). I wasn’t sure if this would be an issue, as the instructions for adults tell you to blow your nose beforehand so that the test won’t be ruined by too much mucus. The guy at the test centre said it wouldn’t be a problem though, and we got the test results fine so I guess it wasn’t!

Getting your Covid-19 test results:

The results took just under 24 hours to arrive. My husband was sent the Covid test results by text message and email, which was handy as we had to send the nursery a copy of them. Happily, as we had suspected, Little Man’s test came back negative – he’s just had a nasty cold, not the ‘rona.

UK coronavirus covid-19 test site drive through walk in tests car park centre the sickly mama blog

My tips for other parents getting a Covid-19 coronavirus test for your baby

I think that the drive-through test option is probably easiest if there’s two parents on hand, but the walk-in test was much easier for me to manage with Little Man on my own. You’re not supposed to leave the car during a drive through Covid-19 test, and I wouldn’t fancy clambering into the back of the car to try to swab a baby in a car seat that’s facing the wrong way.

BUT. The wind did make the walk in test way more challenging than it needed to be, and it would have been even less fun in the rain, so check the weather forecast before you decide! If you do go for a walk in, expect to be outside the whole time, and take enough warm clothes for you and the baby.

If you’re getting a Covid-19 coronavirus test for your baby, I would take along some form of guaranteed distraction for the actual swabbing process – either a favourite toy they’ve not seen in a while or a favourite item of food. If you go for food though, make sure it’s something that will take them a little while to eat, like a breadstick, because the process is fiddly and takes a little while. If you’re in a car I guess you could even try to distract baby further with a baby sensory video on YouTube or similar.

getting a covid-19 coronavirus test for your baby in the UK my experience the sickly mama blog parenting

Your experiences of getting a Covid-19 coronavirus test for your baby or young child

Have you had to get a Covid-19 coronavirus test for your baby or young child in the UK or abroad? What was your experience? Let me know in the comments!

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.

baby · child development · health · parenting

Why Does My Baby Shake With Excitement?

Recently I’ve noticed that when Little Man gets excited, he goes through a very specific set of behaviours. He will raise both arms up and out wide, lean in with wide eyes, and start shaking. This could happen over a new and exciting toy, a new experience (such as when we first took him to the seaside and dipped his toes in the ocean), or even a new food. It’s such a rapid shaking, it’s almost like he’s vibrating with excitement. This got us a bit worried… Why does my baby shake so much when he gets excited?

Shaking when excited

We’ve all heard the phrase “shaking with excitement”, but I have to admit I assumed it was a metaphor until I had a baby. It’s almost as if he gets so excited that he just can’t contain himself! Now, I know that babies do lots of things that seem weird (like staring at lights, or crawling backwards) but are actually totally normal. So, is it normal for babies to shake with excitement?

Is it normal for babies to shake with excitement?

Yes! It’s very common. It’s to do with baby’s immature nervous system. Their developing nervous system sends too many electrical impulses to the muscles and they get all twitchy. It’s normal for babies to shake with excitement, when they see someone they know or a favourite toy. This can present in lots of different ways – for instance, full-body shakes, or baby may clench his fists and shake, or tense up his whole body when excited.

Some babies may also display shuddering or shaking at seemingly random times, when there’s no particular reason for them to be excited, and sometimes it can last for a few seconds. No-one really completely understands the cause of this infant shuddering, but it’s not harmful and usually goes away by the time they’re four years old. Sometimes it’s referred to as infant shudder syndrome, shuddering attacks, or shuddering spells.

If baby is otherwise healthy, developing well and meeting his or her milestones, then there’s probably nothing to worry about if he or she tends to shake with excitement. Life is just that exciting when everything’s new! There’s no treatment for infant shudder syndrome, because it’s not an illness – it just goes away over time.

However, of course it can look a bit peculiar, and as a parent you may worry that it looks like your child having a short fit. If you’re worried, it’s always best to err on the side of caution and speak to a medical professional.

When to get worried about baby’s shaking movements

Of course, as parents it’s natural to worry. Shaking can be evidence of a seizure, but there are some specific seizure warning signs to look out for:

  • If shaking continues for over 20 seconds
  • If the shaking movement is accompanied by vomiting, unusual eye movements, or loss of consciousness
  • If it’s associated with illness or injury, or if baby sleeps for a long time afterwards

If you notice any of these signs, you should seek medical help urgently.

Ultimately, you know your baby best, so even if you don’t spot any of the warning signs, if you think it’s time to call the doctor or NHS 111, then do it. It may help (if you think of it at the time) to take a video of the shaking behaviour that’s worrying you, to show your health professional.

Is baby shaking when excited a sign of autism?

When I got onto Google and started researching about babies shaking with excitement and infant shudder syndrome, it was clear to me from the Google search bar that lots of parents who are researching this subject are worried that their baby’s shaking or shuddering could be a sign of autism. This is probably because some people with autism use repetitive or rhythmic movements to soothe themselves, and this can take the form of shaking or hand flapping.

However, these kind of behaviours are also common with neurotypical children, so just because your baby or toddler shakes with excitement or flaps his or her hands, doesn’t mean that it’s a sign of autism. There are other early markers of autism which are more reliable as red flags that something could be wrong, such as a lack of eye contact or smiling. Again though, you know your baby best – so if you’re concerned that something is wrong, talk to your doctor.

Other causes of shuddering or shaking in babies

There are other reasons that babies may display shaking or shuddering movements, beyond excitement, infant shudder syndrome, or epilepsy. Babies and toddlers often shake their heads from side to side when falling asleep – it can actually be a motion they use to help themselves fall asleep (not that it looks very restful, especially when they start head-banging!), or a sign of teething or even an ear infection.

There’s also some suggestion that infant shudder syndrome could be an early sign of vitamin d deficiency in very young babies, so if you’re exclusively breastfeeding make sure that baby is getting their vitamin D drops in line with NHS guidance (babies who are formula fed get their vitamin supplements from the formula, so they don’t need any more).

In conclusion…

So, in conclusion… there are loads of reasons your baby may shake or shudder, but if he or she is specifically displaying this behaviour when excited, it’s probably nothing to worry about. In some situations, continued shaking or shuddering could be a cause for concern though, so exercise your best judgement as a parent, err on the side of caution, and check with a doctor if you think you need to.

why does my baby shake with excitement is it normal
baby · fatigue · health · pain · parenting · top tips

Parenting With Chronic Illness – A Collection Of Articles

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 and disability a collection of advice and articles the sickly mama blog

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.

parenting with chronic illness a collection of articles and advice for parents

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

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
health · top tips

Coronavirus Second Wave: Surviving Lockdown 2.0

2020 has been a pretty crazy year. I can’t say it’s been a bad year, because my lovely son was born in January, but it’s definitely been a mad year. And now it seems that we’re heading for the second wave of coronavirus… and a second lockdown. The first lockdown back in March was a bit of a shock. None of us had been through anything like that before. Will surviving a second lockdown be easier, because we know what to expect, or will it be harder – for the same reason? It’s difficult to know, especially as we don’t yet know what a second lockdown will look like. The one thing we do know is that lockdown has some pretty major effects on mental health.

So in preparation, I’ve pulled together a round up of some of my favourite blog posts about surviving lockdown 2.0 with your well-being intact…

Surviving Lockdown 2.0 And Maintaining Wellbeing

1. Coping with social isolation in a second lockdown

One of the most difficult things about lockdown is the social isolation. It’s particularly tough if you live alone, but even those of us living with family, friends or housemates can struggle not being able to see the people we’re closest to, or even have those everyday interactions with other people that you don’t even notice under normal circumstances – a chat with a friendly check-out clerk, a quick gossip in the office, even just a smile in the street. Humans just aren’t made for social isolation.

This blog post gives some great tips on coping with social isolation, and the impact on our mental health, as does this post on loneliness in lockdown. I also like this post on keeping your mind busy during lockdown. Check them out!

2. Creating a wellness retreat at home

My idea of maintaining wellness at home is agreeing with my husband an evening that I can have a bath while he feeds Little Man and puts him to bed (Little Man’s room is next to the bathroom and our pipes are super loud, so I can’t bath after he’s gone to bed!). I run a hot bath, add some bubbles, make a mug of herbal tea and grab a book to read while I soak. Luxury!

But this blog post made me realise I was aiming wayyyyy too low. You really can create a luxury wellness retreat at home – it just requires a bit of planning! Even if your family commitments mean you can’t quite clear your schedule for a while day of home spa relaxation, the links at the bottom of this post give some great ideas for lovely ways to boost your wellness when you have less time available. During coronavirus lockdown 2.0 when you can’t go out or meet friends, it’s so important for your mental health to carve out some time for yourself, and this post is great inspiration for your next block of me-time.

6 ideas for surviving lockdown 2.0 coronavirus second wave mental health and wellness

3. Mindfulness meditations to combat Covid-19 second lockdown stress and anxiety

Linked to the above, lockdown is inevitably stressful. Not being able to go out and spend time with friends and family is stressful in itself, let alone worries about catching coronavirus, managing food and medication shortages, employment issues and more. Mindfulness is a great way to combat stress and anxiety, and even as little as a ten minute mindfulness session every day can make a real difference to your mental health and wellbeing.

As we go into Lockdown 2.0, I’m going to be proactive about using mindfulness to manage stress, and working my way through this list of 10 minute mindfulness meditations.

4. Managing second lockdown food shortages and limited shopping trips

If the newspapers are to be believed, panic buying has already started in advance of the second lockdown. Back in April, I set out some of my top tips for managing with lockdown food shortages and limited shopping trips. I’ll be revisiting some of those tips, and trying to make sure we have a well-stocked freezer before Lockdown 2.0 hits!

5. Improving Wellness At Home

I like this round-up post about improving your wellness at home. Some things are so simple and yet they do really make a difference to how you feel… Like making sure you get outdoors every day if possible. During the first coronavirus lockdown, we always made sure to pop into the garden every evening with Little Man, to spend a little time with nature, and it always really lifted my mood. Unless it was raining, of course! If you have a garden and a little person (or people) at home, you can also check out these tips for making your garden kid friendly.

6. Tips for mamas to survive Lockdown 2.0

Of course a huge focus of this blog is on parenting and being a mama, so I loved this blog post about how mamas can beat the lockdown blues and this post with self-care tips for lockdown. Of course a lot of the tips will be great for dads too (although probably not every dad will want a mini makeover). This article on tips for mamas to create a successful routine for working from home is also great.

There are benefits to being locked down with kids – at least the time goes quickly as you’re caught in the constant whirl of feeding, naptime, playtime and tantrums – but there’s no denying it can be stressful and exhausting. If you need some ideas on how to keep kids occupied, check out this post on an A – Z of family life in lockdown or this one on lockdown learning and home schooling.

For families that are staying connected online, I loved this idea of an online family scavenger hunt. And you can check out these tips on outdoor learning as well, in preparation for time in the garden or local park, or these ideas for keeping young children occupied with home play activities. It’s also worth looking for play activities that are also educational – that way you don’t worry about leaving kids in front of a screen for a while…

I also liked this post about tips for kids returning to school – useful for the end of lockdown!

7. Get cooking

I love cooking and baking, and I really think that getting in the kitchen and cooking something yummy is such a great way to keep occupied. Some recipes that I’m planning to try whenever the inevitable lockdown 2.0 starts include: these herby halloumi fries (omg I love halloumi so much!), this classic French tartiflette, some beetroot orange and ginger soup, and these Yorkshire puddings (okay, I should probably wait until we’re having a roast dinner!).

On the baking side, I’m going to try making some chocolate flapjacks, these little peanut butter and chocolate nibbles, and this chocolate espresso banana bread (can you sense a certain chocolatey theme?

8. Get daydreaming

It can also be fun to think past the end of lockdown and look to the future. Yes, there’s so much that we can’t do in lockdown, but in some ways it can focus your mind on what you really want to prioritise doing once things return to something a bit more like normality. I think we’ll all be better at prioritising the things that really matter to us once this is over. I like this post on things to do once lockdown is over – check it out! If you’re feeling brave, you could even think about booking a holiday so you have something more definite to look forward to. Some providers do offer holidays that are protected if you have to cancel due to Covid (but be sure to check the T’s & C’s) – you can read about one family’s experience of a pandemic holiday here!

Second Lockdown: Your Tips

What are your top tips for surviving lockdown… again? Let me know in the comments!

coronavirus covid 19 second wave surviving lockdown 2.0 with good mental health and wellness
coronavirus · health

Please Become A Blood Stem Cell Donor

Normally when I write my blog, I just hope that my readers take time to read my posts and enjoy them. Today’s a bit different, because today I’m asking you to do something. Please, please, please sign up to be a blood stem cell and/or bone marrow donor.

Why am I asking you?

This is Adeline

She’s nearly four years old and was diagnosed with a rare form of bone marrow failure almost two years ago. Ever since, Adeline has been waiting for a lifesaving bone marrow transplant. Recently, it seemed a donor match had been found, but her family have now heard that this has fallen through, and once again no matches are available.

adeline davies bone marrow failure become a blood stem cell donor the sickly mama blog

This is what Adeline’s mum has to say:

“One 3 minute phone call, I expected to get a date for transplant but instead heard the words: ‘The donors we have are not an option any longer,’ and ‘there are currently no matches for Adeline.’ It felt like a dagger in the gut and in the heart. Back to the start, just with far less hope.”

“The only way of saving Adeline’s life is a bone marrow transplant. So we need all the help and all the sign ups we can get!
Please register with DKMS, Anthony Nolan or any stem cell/bone marrow registry. All it takes is a few mouth swabs and you can save a life like Adeline’s.”

You can follow Adeline’s journey here.

Did you know?

Because of Covid, nearly 19,000 fewer people joined the stem cell register this year. That’s a massive drop, and given that many people struggled to find a donor match even before the current crisis.

Already, only 60% of transplant recipients receive the best possible stem cell match, and that drops to just 20% for people from black, Asian or ethnic minority backgrounds. More donors from black, Asian and ethnic minority backgrounds are desperately needed.

What does blood stem cell donation involve?

90% of blood stem cell donations are done by Peripheral Blood Stem Cell collection, a straightforward process similar to donating blood, although you will need injections in the days leading up to your donation. There’s no need for an overnight stay in hospital.

10% of donations are done via bone marrow transplant. This requires a general anaesthetic and a couple of nights in hospital. You can find out more about each method of donation here.

What if I can’t donate?

Not everyone is a suitable donor due to age and/or health conditions. Unfortunately, I’m not eligible to donate due to my pituitary tumour, which is why I’m trying to help out by spreading the word and encouraging others to become a blood stem cell donor if they can. If like me you can’t donate, please share the word on social media and in person to encourage others to sign up, and consider making a financial donation to the charities that run the donor registries.

Plus, remember to wear your masks, wash your hands, and social distance to limit the spread of coronavirus. A Covid infection could be the difference between life and death for someone waiting for a blood stem cell transplant.

Please, if you can, become a blood stem cell donor

So please do consider signing up to the donor registry today. You might just save a life.

health · medication · top tips

How To Decide Whether To Have Surgery/Radiation/Take the Medication…

I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.

I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.

The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:

  • Benefits – what are the possible benefits of this treatment?
  • Risks – what are the risks of doing this?
  • Alternatives – what alternative options are there? Why are they not the recommended option?
  • Intuition – what does your gut feeling tell you?
  • Nothing – what would happen if you don’t do anything?

I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.

I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.