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 · 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!

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.

I also loved this idea for mamas and papas in lockdown – planning a lazy pyjama day with the kids. If you can’t quite get the time to have a wellness retreat, perhaps that’s the next best thing.

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! You could also consider trying a meal subscription service like Hello Fresh, to get you cooking fun new things without the hassle…

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 or alternatively, this post on creating a cosy space in your kid’s room.

Exercise is obviously important for maintaining wellbeing, but it’s easy in lockdown to get online and buy a bunch of exercise equipment you’re not really going to use in the long term… So I also like this article on choosing sustainable activewear and this one on how lockdown should help us make more sustainable fashion choices.

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 as well as this post with more general advice for mamas in need of self care. 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, as is this one about how to play as a lazy parent – helpful when you can’t dedicate all your time to playing with the kids. You may also benefit from this post on childcare solutions during the pandemic.

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. Spending time outdoors is also important for kids, so you can check out these tips on outdoor learning and how to have quality outdoor play at home as well, in preparation for time in the garden or local park. If the weather is bad, I like these ideas for keeping young children occupied with home play activities and this article specifically on activities for preschoolers – or even this Lego challenge. It’s also worth looking for play activities that are also educational or fun family board games – 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