3 ways to describe fatigue

3 Ways to Describe Chronic Fatigue

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Living with chronic fatigue can be challenging in many ways, but an unhelpful addition to that is having to explain the difference between tiredness and fatigue. Often, well-meaning friends & family offer advice and support without understanding that fatigue is a completely different beast to feeling tired. It results in advice like “Have a cup of tea” or “You’ll feel better in the morning”. So, how can you describe chronic fatigue to someone who’s never experienced it?

1. Tiredness is Mental; Fatigue is Physical

Tiredness is something that you can push through. You probably don’t want to get up and finish that chore, but you totally could if you just pep yourself up for it. Often, pushing through tiredness is a matter of sheer mental effort. How do you think early birds get up at 5:30am? (No, seriously… please tell me in the comments. I’ve never been an early bird!)

Fatigue is not something that you can push through – it’s quite literally your body refusing to work ‘normally’. It’s not something that any amount of pep or mental willpower can overcome. 

2. Tiredness is Transient; Fatigue is Chronic

When you’re tired, a cup of tea or an early night will fix it. There’s relief in knowing what you need to do to fix things. However, fatigue is often present regardless of how much rest you get. You can have the perfect night of undisturbed sleep and still wake up feeling drained of all physical energy.

This is yet another defining characteristic of fatigue – it has little to do with your sleep quality or activity levels and is a key point when you try to describe chronic fatigue.

3. Tiredness is a Useful Signal; Fatigue is a Malfunction

Tiredness is a signal that the brain sends, telling you that you should rest, in much the same way as hunger is a signal to eat some food. Fatigue, however, is a malfunction in the way the mitochondria work. If you think back to school, you might remember that mitochondria are the power house of the cell. They are responsible for providing the cell with all its energy needs. Chronic fatigue is thought to be where the mitochondria are not working properly – the workers at the power plant have gone on strike.

Where Does Chronic Fatigue Come From?

The short answer is that we don’t currently know. The long answer is a little more interesting though.

Essentially, what we do know about chronic fatigue is that it’s typically triggered by something. The most common culprit is a massive infection. This might be viral, as is the case with Epstein Barr (glandular fever) or it may be bacterial (as is the case with Lyme Disease and coinfections).

Fatigue is common when you’re unwell, but it usually resolves once you’re better. However, when that fatigue doesn’t get switched off, you end up developing chronic fatigue – the turn signal gets stuck.

Many people with chronic Lyme and other chronic illnesses experience debilitating fatigue for months, years or even decades. The kicker is that even if you successfully treat the chronic Lyme infection, the fatigue can stick around. That’s the case with me – I’ve successfully treated my Lyme infection, but every now and again I’ll have fatigue flares. Granted, they’re much less common now, but it’s a helpful reminder that I still need to treat myself with care.

How To Describe Chronic Fatigue: Final Thoughts

It’s important to remember that when someone chooses not to hear you it’s not about you. People like to believe that if they became unwell, they could get better. The thought of chronic illness is terrifying and they’d rather live in denial, believing that there is something you’re missing. (A cup of tea or an early night!).

However, when talking to someone who wants to learn, I hope these three comparisons help. Many healthy allies want to understand, but if they’ve never experienced chronic fatigue, they need a little help.

Do you have any other tips? Let me know in the comments below!

Tiredness vs Fatigue: 3 Ways to Describe Chronic Fatigue #chronicillnesswarrior
Travelling Abroad with Food Sensitivities

5 Tips for Travelling Abroad with Food Sensitivities

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This post was written by Christy from www.christyrosebud.blog a well-travelled, self-labelled “food-weirdo”. Be sure to check out her blog for loads more helpful information on food sensitivites!

Travelling with dietary restrictions is cause for hesitation for anyone. But when you’re travelling to a country where you’re unfamiliar with the food, the language, the culture AND you have to think about what may make you ill at the same time? Well, that’s a massive challenge. However, it is a challenge that doesn’t have to feel so enormous. Here I’m going to provide five tips on travelling abroad with food sensitivities.

The overarching theme here is to research. Obvious, but also potentially something that’s very difficult to do. Where do you start?

Ask Family and Friends

You never know who might’ve travelled to your destination before, so reach out to everyone! Quiz them on their experiences, favourite places and foods. It doesn’t matter if they don’t share your food sensitivities as they may have spotted an allergen menu. Or simply just by sharing their highlights offers you a starting point to research specific restaurants, cafes, brands in supermarkets etc.

Local shops in the Old Town, Stockholm, Sweden
Local shops in the Old Town, Stockholm, Sweden
Local Bloggers and Instagrammers

Look up influencers (of all sizes) whose niche audience are people with food sensitivities. Surprisingly, there are a lot of people around the globe, posting about their local area – look them up! A quick way to do this is to search via hashtags, for example #glutenfree[city name]. You may even be able to get some personal tips from them if you send them a direct message. It never hurts to ask!

Language & Local Laws

Look up the words for your sensitivities in the language of the country and find out if it’s law for that country to list that allergen (and at what percentage of particles makes the allergen required to be listed). This is important; every country has a different way of handling allergens on packaging. But also make sure you know what you’re looking for! For example, if you’re sensitive to gluten and travelling to Spain, products will say “sin gluten” if they’re gluten free.

Make sure to read packaging, even if you are in a country that shares your language. I can’t tell you the number of times that I’ve picked up “gluten free” food from the Free From section in a UK supermarket, only to get home and find that there is wheat, gluten free wheat or oats in the ingredients lists. Don’t trust the front of the packaging!

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Airplanes & Airports

Research what you’re allowed to take onto an airplane, and into an airport, keeping in mind fuel stops and connections where you have to get off the plane! A lot of airports have different restrictions, so make sure to check:

– your departure airport
– your fuel stop / connecting airport
– your destination

Some airports will allow you to take any food through to the airline gate and even onto the plane, however you are not allowed to disembark with any fresh food. This is a great tip if you’re travelling and the airline doesn’t cater to your sensitivity. You can prepare food at home to take with you for the first leg (if you have connecting flights/fuel stops), or for the full flight if you’re flying direct.

Gluten free treats at stalls in the Borough Market, London UK
Gluten free treats at stalls in the Borough Market, London UK
Pack Politely

Think about others with food restrictions. If you are travelling with your own food, whether on a plane as above, or on a train or other enclosed space, think of other people who might have more severe restrictions. In other words, don’t travel with nuts. I’ve unfortunately experienced this before flying between New Zealand and the UK. I’d prepared my snacks during a Sydney, Australia stopover, including some really yummy nuts from a wholefood store. We got settled into our seats, and then the announcement came over the loudspeaker. There was someone with a severe airborne nut allergy on the plane. So my nuts stayed in their bag, and I had to pick around the airline provided meals for the little bits that I could tolerate to stave off the hangriness. If only I’d packed popcorn, or a different dry snack instead…

Travelling Abroad with Food Sensitivities: Final Thoughts

So, there you have it! Five tips for travelling abroad with food sensitivities. Hopefully the above tips offer you some research starting points, because let’s face it – if you have food sensitivities, research is your best friend.

Have you ever travelled abroad and had your own experiences with food sensitivities? I’d love to hear your tips and stories!

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Difference Between Tiredness and Fatigue

The Difference Between Tiredness and Fatigue

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Have you ever told someone that you suffer with fatigue only to receive well-meaning advice such as “Have a cup of coffee”, “Just take a break” or “Push through”? It can add to the frustration of living with Lyme as well as being distressing. However, far from meaning to be dismissive or cold-hearted, most healthy people simply don’t know the difference between tiredness and fatigue.

Tiredness is a normal part of everyday life, and everyone can identify with that heavy-eyed, weary feeling of needing a rest. Chronic fatigue is believed to be a result of dysfunctional mitochondria – which occurs as a result of a massive infection such as Lyme. Healthy people just don’t get it, but most are willing to be educated!

What Healthy People Have To Say

I spent some time talking to friends and family about tiredness and fatigue in preparation for writing this piece. In particular, I asked them to describe in their own words what tiredness felt like. Here’s what they said.

When I’m tired I just lose enthusiasm and the drive to do things. Like today, if I didn’t have two kids I’d just be relaxing on the sofa doing nothing. I’m tired, I didn’t sleep well, and I don’t want to be running around after toddlers, but I have to, so I do.

Mark, IT Executive & father to two boys

When I’m tired, my concentration and focus is a bit off and I just keep focusing on how I need to go to sleep. Mentally, I feel a bit spaced out.

Josh, Police Officer and member of the TA

Josh is one of the most active people I know. His idea of fun is wild camping and hiking. He’s an active member of the TA and also helps run the local Army Cadets. When catching up with him, I asked him if he felt there was a difference between tiredness from lack of sleep and tiredness from physical exertion. His response interested me, and he joked that in the army you’re regularly pushed to your physical limits and you just need to keep going.

After intense exercise I just feel drained. I could definitely push through if I needed to, and in the army that’s often the case. Mentally, you don’t want to, but a good night’s sleep fixes it.

Josh, Police Officer and member of the TA

It seems that the common theme with tiredness in a healthy person is that it is primarily a mental state. Sure, both Mark and Josh talk about feeling the need to rest, but they were both quite emphatic about being able to push through if they had to – they just don’t want to.

The other person I spoke to was Lauren. She’s 31, mum to a two year old and pregnant with her second. She’s a teacher, and has a busy job tutoring and child-minding before she heads back to work. She was also recently diagnosed with anaemia and has been experiencing fatigue as a result. This puts her in a unique position to compare tiredness and fatigue. Why? Because when you’ve been ill for some time, it can be hard to remember what it feels like to simply be ‘tired’.

Whilst she mirrored what Mark and Josh said about tiredness having a significant mental aspect, what she said about fatigue will resonate with many people with Lyme.

From a mental perspective, you know that when you’re tired you can sit down for a while and you’ll feel better. With fatigue, you know that you might feel a little better whilst you’re sitting down but it won’t have any long term effect once you have to get up again. It’s the same with sleep – you can go to bed early but you know that you’re just going to wake up feeling just as exhausted.

One thing I’ve noticed is that when you’re just tired, you don’t feel like you’re missing out on things because you’re having an early night – because you know you’ll benefit from it in the morning. With fatigue, you feel like you’re constantly missing out on life because you have to rest or sleep, but it doesn’t even have any positive effect!

With tiredness, you can feel worn out in your body, but fatigue feels like it’s in your bones. Even moving your fingers aches and feels ‘heavy’. Even when I was a new parent and utterly sleep deprived, I felt exhausted and like there was no end in sight – but you still manage to carry on somehow. With fatigue you can’t push through, your body simply won’t do it.

Whilst tiredness appears to be generally mental or psychological in nature, fatigue is a bodily state. It can feel like trying to start a car with an empty tank. Whereas tiredness is a valuable and essential signal from the brain that rest is needed, fatigue is almost a malfunction in energy production.

Why is Fatigue So Common with Lyme?

Most people with Lyme are diagnosed with either Chronic Fatigue Syndrome (M.E.) or fibromyalgia. With both syndromes the prominent symptoms are pain and fatigue. Receiving these diagnoses can be helpful tools for those with Lyme, because having a recognised condition can help you to gain access to assistance, such as blue badges and flexible working arrangements. However, a syndrome is not actually a ‘condition’, but rather a set of symptoms that cannot otherwise be explained. They’re the last thing on the list when your doctor has ruled everything else out.

Fatigue is not an illness, but rather it is a symptom of another problem. Whilst the link between Lyme and fatigue is not yet fully understood, it has been well established that fatigue is one of the most debilitating effects of this disease.

How to Begin Educating People
1. Let's Talk About Spoons

A great way to begin is to forward them our article on Spoons. You’ll ask your friend/family member to hold about 12 spoons, then ask them to start describing a typical day. As they list off their usual tasks, you begin removing spoons. Get showered? One spoon. Wash your hair as well? Another spoon. Commute to work? Three spoons.

The purpose of the exercise is to show that when you live with a chronic illness, you have a limited energy quota. Managing, rationing and prioritising your energy expenditure is a tricky process, and when your spoons are gone – they’re gone. A healthy person doesn’t have to think about rationing their energy, because they have seemingly unlimited spoons which can be regenerated by having a cup of coffee or taking a break. For people dealing with Lyme, spoons need to be regenerated with sleep.

“Pushing through” is something a healthy person can do, because a good night’s sleep recharges their battery. When a person with Lyme tries to push through, you go into energy deficit, which can take days or weeks to regenerate.

2. It's in the Definition

Other than Spoons, one of the best ways to help someone to see the difference between tiredness and fatigue is to point out that the two terms are often used interchangeably, but that they are actually two very different things.

Tiredness

In need of sleep or rest; weary.

Fatigue

A reduction in the efficiency of a muscle or organ after prolonged activity.

Fatigue is a physical condition of the muscles and organs. Healthy people can experience muscle fatigue after intense physical exercise, but a good night’s sleep is all that’s needed. For someone with Chronic Fatigue, fatigue is a near constant state.

I’d love to hear from you – how do you try to educate those around you about the difference between tiredness and fatigue? Let me know in the comments below!

Herx Crash Flare

Herx, Crash or Flare? Understanding the Difference

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Oftentimes, you’ll hear people with Lyme talking about a herx, crash or flare. But what do they mean? A herx, crash or flare can often be used interchangeably to describe an increase in Lyme symptoms. However, these are three different phenomena that can occur in an individual with Lyme, and each require a slightly different course of action. In our experience treating people at our drop in sessions, we’ve managed to hone this approach.

What's a herx?

Most of you will be familiar with the concept of a herx. It is a direct result of successful antimicrobial treatment – you killed something! A herx occurs when dying spirochetes rupture and release endotoxins into the bloodstream. This causes widespread inflammation in the body, which means both old and new Lyme symptoms flare up and a typical inflammation response is triggered (pain, nausea, fever etc).

Timeframe

Within 1 hour - 3 days after treatment

Duration

1 day – 3 weeks. Longer herxes are typically more common in earlier treatment.
Symptoms

Joint pain, muscle pain, muscle twitching, electric shock sensations PLUS inflammation symptoms: headache, nausea, a feeling of being ‘toxic’, digestive upset, low grade fever.

Steps to Take

Detox, detox, detox! The more efficient your body is at detoxing, the quicker you can clear a herx. The problem is that when you have Lyme, your detox pathways aren’t firing on all cylinders. Activated charcoal, infrared sauna & Epsom salt baths all help your body to detox. Rest is also key. 

Is it a Herx?

Have you recently treated? Here we’ll talk about coiling, but you should also consider antibiotics, hyperbaric chambers, herbs etc. If you have not recently treated, it is unlikely to be a herx.

What's a Crash?

A ‘crash’ is a term used in many other chronic illnesses, most notably M.E. (Chronic Fatigue Syndrome). It is the direct result of over exertion – you have spent more energy than you have. Most people with Lyme deal with an element of Chronic Fatigue and learning to manage your energy quota is an important part of life.

However, no matter how much you hone your ability to manage your energy quota, crashes do unfortunately happen. Here at TOWL, we talk about energy units as spoons. You have a limited number of spoons per day, and when you go into ‘spoon debt’ it can take days or weeks to replenish stores. When you are very sick, you may only have a few spoons each day, but as you treat the Lyme, your spoon quota will increase to the point where you can begin to function more like a healthy person.

Timeframe

Sometimes as early as the same day, but usually starts the day after over-exertion.

Duration

1-7 days or more. Longer recovery periods are seen earlier in treatment.
Symptoms

Crippling fatigue, a feeling of having your legs cut off and all the energy drained out, pain, digestive upset.

Steps to Take

Rest is the only way to deal with a crash. Ensure that you keep up with supplements and if you can manage it, an Epsom salt bath or infrared sauna session can help.

Is it a Crash?

Sometimes a crash can be easy to identify, because you physically exerted yourself. However, when you are very sick, something seemingly simple like washing your hair can put you into spoon debt! Additionally, emotional stress can cause you to crash as well. If there has been nothing out of the ordinary or you have been feeling the intense fatigue for more than a week, it may not be a crash.

What's a Flare?

A flare is a worsening of Lyme symptoms. This is an unavoidable part of Lyme Disease, and can be extremely distressing. A flare can last for months in the early stages of treatment, especially with coiling. This is because the treatment activates dormant layers of infection. Most people who coil describe the first six months as feeling like one long herx – but you are technically experiencing a flare.

Unfortunately, a flare can’t be as easily defined as a herx or a crash, simply because it can be a result of any number of factors. Whereas a herx is a direct result of treatment, and a crash a result of over exertion, a flare is different. Flares can be triggered due to less than optimal lifestyle factors, or as result of activating a deeper layer of infection, inadvertently disturbing a biofilm, or for no reason at all.

Timeframe

Flares are often experienced in Spring/Autumn. Spirochetes have been observed as more active during these seasons.

Duration

2 weeks – 3 months. Shorter flares are seen later in treatment
Symptoms

A flare can feel like backsliding, as if all your progress has been undone. Increase in old Lyme symptoms, new Lyme symptoms and increased fatigue. Nausea, pain and neurological symptoms all increase.

Steps to Take

Early on in treatment, it can be difficult to get a flare under control. However, the further through treatment you are the easier you will find it to get ‘back on track’. Check on the Big 3: Diet, sleep and exercise.

Diet

Cut out sugar and any other food groups that affect you negatively. For some people this includes gluten and dairy. Do your best to make sure you are eating enough.

Sleep

Easier said than done, but trying to go to bed and wake up at the same time every day has a positive impact on your body. Take naps when you need to, if this doesn’t interfere with sleeping at night.

Exercise

By exercise, I mean gentle movement, not running a marathon! The reason movement is so important is because it helps to get the lymphatic fluid flowing. The lymphatic system is a hugely important part of our immune system which carries bacteria, dead cells and other debris to be dealt with and excreted by the body. Unlike our network of blood vessels, the lymphatic system does not have a pump (such as the heart) to get it moving round our bodies. It relies solely on our muscles contracting to be pumped round the body and to the right places.

Gentle movement must be within your spoons – so if all you can do is bend your knees a few times and raise your arms up in bed, then that’s great! If you can manage it, rebounding is excellent for lymphatic drainage, as is Red Root tincture.

Another Coil Session

During a flare, it’s common to avoid treatment. After all, who wants to add a herx to a flare? However, a coil session can sometimes help to break a downwards spiral. We would always advise that you go easy when treating during a flare, but we have seen time and again that it can help to break a flare.

Rest

Resting during a flare is absolutely essential. Continue to give your body what it needs and keep up your good habits as best as you can (infrared sauna, supplements, Epsom salt baths etc)

Is it a Flare?

Defining a flare is a process of elimination. If you have not recently treated, it isn’t a herx. If you haven’t recently over exerted yourself or experienced a lot of stress, it’s unlikely to be a crash. The key factor will be how long you have felt like this: If you’ve felt like this for longer than a few weeks, it’s probably a flare.

Managing Herxes, Crashes & Flares

Learning how to distinguish between the three can take some time and practice, but being able to tell the difference allows you to tune into what your body needs. Early on in treatment, it can seem overwhelming as you stir up dormant layers of infection. I remember questioning whether I was doing the right thing, as things seemed to go downhill so fast. Ultimately though, I’m glad I stuck with it, as after around 6 months you will experience an uptick and things will start to get better.

I’d love to hear from you though – how do you deal with herxes, crashes and flares? Let me know in the comments below.

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Living with CFS

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Living with CFS/ME as a result of having Lyme Disease can be extremely difficult, and it’s just made worse by the fact that many of the people in our lives just don’t get it.

It can be easy to fall into the trap of believing that they just don’t care, but I truly do believe that the number of people who actually don’t care is very low. More often than not the others in our lives would like to help us, and try to help us, but when they fail to see an improvement we’re essentially forcing them to face their own sense of helplessness. It’s human nature to distance ourselves from things we don’t like feeling.

This is also compounded by the fact that this disease is hidden, and more often than not we look and seem fine (because we expend an awful lot of energy trying to).

The Spoon Theory

The Spoon Theory can be an excellent tool in helping your loved ones understand what living with CFS & Lyme is like. It was coined by Christine Miserandino in her essay “The Spoon Theory”[1] . Here’s how it works.

Grab a handful of spoons (12 should do it) and give them to your friend. Tell them that each spoon represents a unit of energy. When you’re healthy, you wake up in the morning expecting to have an endless supply of spoons to do whatever you wish that day. When you have a chronic illness you have a certain amount of energy for that day, and when it’s gone, it’s gone. Spoons need to be replenished through rest, so you need to plan your day according to how many spoons you have on that particular day.

Ask your friend to start to describe a normal day, starting with waking up. Each time they describe an activity, remove one (or more) spoons. You shower and wash your hair? Two spoons. Get dressed? One Spoon. Make breakfast? One Spoon. Pack your bag? One Spoon. You travel to the shops? Three spoons. You unpack the shopping at home? One spoon. Tidy up the living room? 3 Spoons. Ask your friend to prioritise their spoons. Remind them that if they spend that spoon on running an errand, they won’t have a spoon to cook dinner that night. Carry on until your friend isn’t holding any more spoons then let them know that now they need to go to rest. They aren’t able to complete any more tasks today. Explain how living with a chronic illness means making choices and decisions that a healthy person doesn’t have to.

Hopefully at this point, it will be dawning on your friend what it is like living with a chronic condition. Hopefully, they’ll have a little more understanding why sometimes you cancel plans, or withdraw for a while.

Living Within Your Spoons

We’ve all been there – spending spoons we don’t have and paying the price for it the next day or days. I don’t know about you but it’s usually because I’m afraid of letting people down or being a burden. The most important things I’ve had to learn are to slow down and to say no – and it’s a lesson I have to keep relearning.

What do you think about the Spoon Theory? Is it something you’d consider using to explain Lyme and CFS to your loved ones? Let me know in the comments below.

[1] The Spoon Theory