I Hate Missing Afternoons - PACING & How to use limited energy

 This weekend just gone we had family visiting on the Sunday, and after a lovely Sunday lunch I then went upstairs to take my rest. And yes I was feeling tired after the cooking but, this afternoon rest is a daily occurrence and is part of my daily pacing routine.

And whilst it is beneficial, it’s also the worst thing ever.

Because I have to miss most of the afternoon EVERY DAY, and for the foreseeable future. It’s pants, to coin a phrase. And in the spring and summer when we have glorious sunny afternoons, I really do feel that I’m missing out on life.

So why do I do it?

Pacing is different for everyone, and is a great way to manage energy levels, which are very precious to people who live with ME. 

There are many theories on energy management, but they all have a common theme, how to manage a finite amount of energy and ensure it gets spent efficiently.

I often describe it as having a partly charged mobile phone battery, and you have to make it last. Something we can all relate to!

In ME sleeping does not mean that my “battery” gets fully charged. I wake up with only the partial charge. 

Every activity uses up energy, so each day has to be carefully planned out to ensure that I don’t drain the battery completely flat. And that’s where the afternoon rest comes in to do a little top up.

Other theories include The Spoon Theory, The Energy Envelope and Energy Conservation. You find what works best and what you and your family understand.

I am currently trying a free online App tool from VISIBLE, it measures heart rate variations against specific symptoms and gives a score each morning to help plan and pace the day. Having been pacing by myself for 8 years now I am quite intrigued to see how this app result correlates to how I feel each day.

Part of learning how to pace is learning what activities and actions use the most energy, as well as noting what is off the list of allowed activities.

Activity that induces severe post exertional malaise (PEM) is best avoided at all costs, and this will also depend upon the severity of your ME.

For someone with moderate to mild ME walking 200 meters at a gentle pace might be possible. For someone with severe ME it would be totally impossible, they might only just make it from the bed to the sofa. 

And then because of the fluctuating nature of ME , the mildly affected person, having done the walk yesterday might not be able to walk so far today, if at all.

It would take me many paragraphs to really describe the nature of PEM and activity in ME. It is certainly complex.

The other thing that the person living with ME has to learn is that EVERY SINGLE ACTIVITY uses energy, from watching TV or reading a book to driving the car or walking the dog. 

I took a long time to really learn that sitting down with a cuppa, TV on and iPad in hand for a rest, was anything but!!

Yes I might be physically resting by sitting down,  but I was still using my energy by watching TV, and by doing something as innocuous as reading my emails. 

Psychological activity can sometimes even be more energy draining than the physical activity. For example watching a disaster unfold on the news, or reading something distressing in an email such as news or a death or other serious event.

Everything has to be considered and taken into account. Which is why an afternoon rest, physically lying on the bed in silence (and often actually sleeping) is beneficial.

The more one practices pacing the better it gets, and you work out what helps your body. 

The other good thing about pacing is that it can be flexible. For example if there is a busy day coming up, quieter days can be planned either side in order to help mitigate the PEM and maintain the equilibrium.

It’s also important to be flexible, because sometimes life doesn’t go to plan. For example an appointment might overrun or be late starting. You can find something takes more energy than you thought, or you make a decision to stay longer than planned because you know that you can rest more tomorrow.

Having such flexibility means that normal life doesn’t necessarily pass you by. And this is how I have found the aforementioned afternoon nap works for me. I prefer to do something that takes more energy in the morning, for example an appointment, meeting a friend for coffee or visiting a shop. My car and my blue badge means that I can park closer to where I am going and save energy that would be spent walking from the car to where I want to go. 

When I was first diagnosed with ME I missed out on a lot of things, because I would do too much and then crash, often spending days bed bound and house bound. I felt that I would never travel again to visit family and friends or take a holiday.

Now, using pacing I have learned to understand my body and how ME affects it, and so I can plan to do something that involves travel. 

I must add here that I still get things wrong and the pacing journey is not smooth. Dealing with the unexpected is still the biggest challenge, from getting bad news or a normal health issue such as a cold or sprained ankle can upset the best laid plans. At these times I have learned to go with the flow and listen to my body.

Payback of PEM usually occurs for me 24/48 hours after the event.

It’s never an exact science but having understanding family and friends really helps.

Obviously there is a lot more to pacing than described here, but I hope that it gives you a sense of how I live my life with ME.

SYMPTOMS - AND, WHAT’S IN A NAME?

 The full name for ME is Myalgic Encephalomyelitis 

My - Muscle 

Algic - Pain 

Encephalo - Brain 

Myel - Spinal Cord 

Itis - Inflammation 

So the name explains the illness and the symptoms? Yes, but ….

Sometimes it is also known as Chronic Fatigue Syndrome or CFS

And even Post Viral Syndrome, PVS

This can be very confusing for patients and the medical profession.

Because they are ultimately all the same.

People with this illness tend to prefer the term ME, because this describes the areas of the body affected, whereas Chronic Fatigue Syndrome can be misinterpreted.

You may already know that I volunteer as a trustee at the Charity Action for ME. So I have chosen to use their list and description of symptoms of ME. Everywhere you look, the descriptions of symptoms are very similar.

And in the U.K. we have the Nice Guidelines 2021 which provides information for patients and medical professionals.

“Symptoms of ME (Action for ME website 2024)

Range of symptoms | Action for ME

Range of symptoms

Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.

M.E. is not "feeling tired."

The 2021 NICE guideline for M.E. for health professionals in England and Wales instead talks about "debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest."

While it’s important to find out more about the range of symptoms experienced by different people with M.E. – it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity. Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.

Post-exertional malaise

Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated. They can also experience an increase in other symptoms. The impact of this may be felt straightaway but it can typically take a day or two to kick in, and is not significantly improved by resting. This is a key feature of the way M.E. affects people, and is known as post-exertional malaise (PEM), sometimes called ‘payback’.

The 2021 NICE guideline for M.E. says PEM relates to the "the worsening of symptoms which:

• is often delayed in onset by hours or days
• is disproportionate to the activity
• has a prolonged recovery time that may last hours, days, weeks or longer."

Other symptoms

While it’s important to find out more about the range of symptoms experienced by different people with M.E. – it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity. Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.

Along with debilitating fatigue and post-exertional malaise, people with M.E. may experience the following symptoms.

Feeling generally unwell, such as:

• Having flu-like symptoms (often called “general malaise” by doctors)
• Recurrent sore throat, with or without swollen glands.

Sleep disturbance, including:

• unrefreshing sleep
• sleep reversal,

Pain, such as:

• aching muscles or joints
• nerve pains or pins and needles
• headache or migraine
• twitching muscles or cramps
• abdominal pain (stomach or bowel problems)
• chest pain
• back pain.

If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue.

Cognitive difficulties, sometimes collectively called "brain fog" such as:

• memory problems
• difficulty speaking
• issues with word finding
• difficulty concentrating.

Problems with the nervous system, such as:

• poor temperature control
• dizziness on standing or sitting up
• orthostatic intolerance (symptoms when standing upright which are relieved when reclining)
• hyper-sensitivity to light and sound
• sweating
• loss of balance
• poor circulation.

Digestive problems, such as:

• nausea
• loss of appetite
• indigestion
• excessive wind/bloating
• cramps
• alternating diarrhoea and constipation
• Irritable Bowel Syndrome.

Intolerance and increased sensitivity to:

• bright lights
• noise
• odours
• some foods (for example dairy or wheat)
• some medications
• alcohol.

Frustration, anxiety, low mood and depression are sometimes experienced by people with M.E. as a consequence of having to cope with the impact of the condition and its symptoms. This does not mean that M.E. is a mental health condition, and it should not be treated as such.

Watch films about symptoms on the Dialogues for ME/CFS website, with contributions from people with M.E. and health professionals.”.

The NHS list a very similar list of symptoms, as do many other websites.

With these symptoms they fluctuate from one day to another, one week, even one month to another.

Some people have symptoms that fluctuate within a day.

No 2 people are exactly the same.

Nor does everyone have the same symptoms as another person, and this is partly what makes it so difficult to diagnose and treat.

But also why people are not believed or taken seriously.

 Many symptoms are invisible, unrelated and quite frankly bizarre.

Not being believed or understood is very undermining for the patient.

And because so little is understood about the symptoms and how they affect the person it’s often the medical professionals who are not understanding.

ME is given very little time during the medical school curriculum, also the nursing and midwifery curriculum. Nor in the wider healthcare professional curriculum. 

And those that do know about it often have outdated information.

My own comments at diagnosis are testimony to that. Yuppie Flu, malingering, yeah I get tired after a busy week too. 

And, for a patient who is either trying to get a diagnosis, or is in front of their GP having been newly diagnosed, not being believed is just horrific.

Because if the medical profession doesn’t know about it - how is it possible to get help?

In the 11 years since my own diagnosis, things have moved forward slowly.

Persistent campaigns by patient action groups, charities and knowledgeable healthcare professionals (yes there are some) are bringing ME out of the dark.

But, because of this slow pace of change, things like treatment for symptom control, and medical research are very much behind compared to what other comparable illnesses such as MS or Parkinson’s have been afforded.

But that’s another chapter.

So why choose to write a blog now?

 You could be forgiven for thinking that, having read my first two blog posts that I was headed down a black hole of doom and gloom.

But here I am, 11 years later, writing a blog about living with ME. 

So when did life start to get better?

Having given up my paid employment I embarked upon a new job. Looking after number 1.

Understanding the symptoms and effects that ME was having, and learning how to live with them and to live a good life.

I would say that this next new phase took around 4 years, until 2017.

There were many ups and downs, and some of the downs were very difficult and painful.

As for the ups - well they were the things that made me realise that I could still live a fulfilling life, it was just not going to be the one that I had planned.

But as they say - life is what you make it and I was, and still am, determined not to be defeated.

I had a lot of skills and experience from my 50 years on this planet!!

32 years as a nurse, 23 years of teaching nursing, 27 years married and 21 years as a mother. It all had to count for something.

And then there is all the support that I received. My family have all been amazing, learning to read my symptoms sometimes better than me, and also coping with the challenges and changes in our lives. Wider family and friends have always been understanding of my limitations, which is so helpful because I can be honest and relaxed in their company. The major ME charities provide free information which is invaluable and then there are some special groups of people that I met online who all have ME too. 

I have had to find my own medical support and fund the majority of it myself - key players in the early days were counselling, a psychiatrist, complementary therapy sessions and a physiotherapist.

Just because the NHS wasn’t up to par didn’t mean I had to just accept it - I actively looked for alternative support.

I don’t know why I have waited 11years to publish a blog, although being a technophobe has had a part to play in that.

But I have asked for help, and been given it willingly - you know who you are, and a big thank you for getting me here. And, I have been inspired by others who write (a lot more eloquently) about their experiences and lives.

I have however been writing about my life with ME almost from the start.

Because keeping a journal and writing things down on paper was a great way to save my sanity.

Writing is cathartic. It’s also a way of dealing with the frustration, stress and anxiety - you write it down and it’s done, dealt with, “put in a metaphorical box” leaving you to move forward.

It’s also an important way to celebrate and record the successes and progress made. When I look back on where I was, where I have been on this journey so far, there’s much to celebrate.

So please be assured dear reader, I will be sure to bring you these triumphs in my posts. 

I shall be posting about the symptoms of ME in my next chapter, and from there you can really start to appreciate the journey that I, and my family have been on.