Dear M.E. Ally

It’s about Time

Dear M.E. Ally

This blog post is for you, and it’s about Time. Time as something finite, something precious and something unequally distributed amongst us, especially pwME. (The abbreviation pwME is a shorthand for people with M.E. used on socials which I will be using here). Settle in as it’s long and I have lot to cover. If you prefer to read it in chunks, I have added links here to each section and time required, roughly, to read (this may also be helpful for pwME who are reading this too. If that is still too much then I have done a TLDR (Too Long Didn’t Read) summary at the bottom of this post.

Introduction – why you? Why M.E.?   approx 3 mins

M.E. Time is…   2 mins

Yes, but  (the caveats)   4 mins

Sacrifices and Priorities 3 mins

Consequences   2 mins

Clever Maths to illustrate: 5 mins

Thank you for your time 2 mins

To help – some ideas   2 mins

Introduction – why you?  Why M.E.?

You may ask why I am specifically addressing you. This is because you may be someone who knows someone with M.E., or the now widely talked about post-pandemic condition with similar symptoms, Long Covid. You might be curious about what it means and how it impacts someone’s life. Or you may be wishing to spend time with someone with M.E./Long Covid and supporting them where you can. You might want to know what you can do to help and to show you understand, or are seeking to understand their lived experience. If so, this post, written following a discussion on Twitter with people in the M.E. Community, will provide some insight on how to get there, specifically in understanding the relationship pwME have with Time.

Each day, when you wake up, time is on your mind. You might have an alarm set at a particular time, chores to do by a certain time or a certain day, workplaces to attend, or meetings with colleagues, family and friends. You calculate what time you have and what you can do based on all of these factors. When you have nothing scheduled your time is “free”. You can choose to use that resource as you wish – watch TV, read, do some exercise, call a friend, craft or create, or you can let that time be whatever it wants to be. Your lives, whether single, married, parents or carers, become a mix of time where you feel free and where you feel obligated with time-based commitments. More often that not you likely find yourself saying “I haven’t had time to…”, “if only I could find the time” or even in frustration call something a “waste of time”. We are all ruled by this force and can never escape it, but some are able to work time to their advantage. 

Not so if you have M.E. Time for pwME is the scarcest of resources. Our time is not free. Or, if we are lucky, barely free. We are bound by the same inescapable force and our time is not a mix of “free” and “busy” but what I am calling for pwME: “usable time” and “rest”. Not only that, but in most cases the time required to rest far outweighs our usable time and, depending on the severity of our condition, we can only eke out any form of activity from extremely small amounts of usable time. 

Below, I will explore the concept of “usable” time with you. You may be our ally – someone who does not live with any form of impairment of physical energy –  someone whose “usable” time is what I am calling “standard” time, which is the time you have between waking and sleeping. I want you to read this and understand what time means to pwME, what calculations we need to make on a daily, sometimes hourly basis, what sacrifices we may have to make, the necessity of prioritising to get through the day, and how this compares to someone with the “standard” time available. Why? Because we need your help. Fighting our corner takes time, our “usable” time. Many M.E. advocates have M.E. themselves or are caring for pwME. Our charities are staffed by pwME and some of our patrons too. And all of us live on scraps of “usable” time, time that sometimes slips between our fingers; it might start as one thing and disintegrate, or disappear altogether and become rest. And we all have plans, goals, desires, and in many cases commitments, just like you, or at least we would like to. 

(This has taken me 40 minutes of usable time to write so far. Equivalent standard time of 2 hours 40 minutes)

M.E. Time is…

Before we really get into it, I want to talk about M.E. time and why this differs from yours, that is, why we can only rely on small amounts of “usable” time and not “standard” time as you do. For pwME being energy-impaired means a constant awareness of what energy is available – how to store it, conserve it, expend it, when to rest – without suffering the consequences known as PEM. More on PEM here. PEM is an acronym for the horribly named Post-Exertional Malaise. This is what happens when a pwME has done too much in their usable time and caused their system to crash bringing about all sorts of PEM symptoms, such as but not limited to: crushing exhaustion, muscle weakness and spasms, sore throat, inability to regulate temperature, digestive issues and problems with cognitive function known more commonly as “brain fog”. But don’t blame the pwME here for doing too much because what constitutes too much can be anything from very little such as watching TV, reading in bed or speaking to a friend on the phone to a lot such as a (long) walk, hospital appointment or back to back meetings. The effect of these all depends on the level of severity, what is going on for the pwME at the time and the additional factor which I will call the “who knows?” factor. This means even if an activitity is something the pwME can usually do in usable time without issue on one particular day, on another day the same activity can cause PEM. Why we don’t know this, why we can’t predict this, or plan around it, is for one major reason – the lack of biomedically focussed research.

If you are looking for a takeaway here, what I have written above can all be distilled into one thing:

the goal of everyday management of time for pwME is to avoid PEM.

Therefore the use and awareness of time for pwME almost always and directly relates to this. ¹ Now that is out of the way we can get to the objective of this post which is to outline and explain usable time and how you, as an ally, can understand what this means and how to help.

Yes, but (the caveats)

First we need a useful definition of usable time and with that straight away we encounter a key problem: 

Usable time is difficult to define as it is fluid, fragile and unpredictable. 

So for the purposes of this post, and to illustrate the differences between pwME and their allies, I am defining usable time as the time a pwME has where they can be “active” in some way over and above being “at rest”. For me, that is usually any time where I am not horizontal, or mostly horizontal, and lying still. But this isn’t just about me – we all rest differently.

On 8th August I asked this question on Twitter and the excellent responses from the pwME community help me shape the following caveats, that is, the exceptions to my definition above. 

1. Lying still is not always at rest. Rest is not always lying still.

Some pwME rest by sitting up, some watching TV or reading. For others that takes too much energy. Also lying still is only half the issue as pure rest means not thinking too. Try not thinking. There is a reason the meditation business is booming right now. 

2. The amount of usable time available to a pwME depends on the level of exertion required for an activity.

I have 3 to 4 hours a day where I can be active but that depends on what I do. If I want to do something like washing dishes or going for a short walk, that could use up more of my energy more quickly than writing or having a short conversation. Therefore the amount of time needed to rest may increase due to the exertion of an activity. Although, that also depends on the day, how I feel and the level of severity of symptoms. And I am just talking about me here, so this can also differ for every pwME. See below for more dependencies that impact available usable time. 

3. The rest required one day (or hour) may differ from the next for no apparent reason.

As the caveat above and also for more see the Consequences section below. 

4. TV/socials can be considered restful but depends on context and content. 

E.g. an intense drama, horror or action film can take more energy than a nature documentary or a light comedy but that very much depends on the person. 

5. There is no correlation between amount of time needed to rest and usable time.

There may well be, and it would be great for planning if there was, but as there is not enough research or time devoted to M.E. to ascertain this, other than our own empirical experiences, we have no idea. 

6. Rest can restore usable time. But doesn’t always, and in some cases can have no effect 

Rest is our best answer so far but not always the answer, especially in more severe cases. 

7. Rest is not relaxing. 

It’s not taking it easy. It’s very deliberate. It is strategic, aggressive, empowering and, for pwME,  it is a necessary symptom management tool. So, no, we are not chilling, nor Netflix and chilling. Nor are we having a “duvet day”. Rest, for pwME, is not fun.

8. Usable time can break down in the moment of an activity. 

We often assume we have it figured it out but get wiped out doing something then having no usable time left over and forced to rest for much longer than we had anticipated.

9. Usable time is radically different for different levels of severity 

I consider myself lucky. I may have 3 to 4 hours a day on average when I can do stuff but I talked to someone online who has on average 20 minutes usable time per day, and that includes eating, washing and going to the loo. 

10. PwME have to spend their usable time recording and monitoring their usable time

Quite a few of us have pacing journals and timelogs to calculate what time we have as usable, when we have to and have rested. Here is a photo of an average week from my own journal (using Google calendar and colour coding) The irony of having these is that they take up our usable time to set up and complete but can help with working out usable time available day to day. 

(This has taken 50 minutes of usable time to write so far. Equivalent standard time of 3 hours 20 minutes)

Sacrifices and Priorities 

We are now at the the heart of my message to you and the one thing I want you to remember if this is all a lot to take in at once:  

every day, every hour, every minute a pwME is working out what they can do, should do, want to do and what ultimately they have to do, and what happens if they don’t get that right. 

That is, how much usable time they have and how they can best use it. And with that comes the brutal reality of priorities and sacrifices that must be made. Priorities cited in the Twitter discussion included medical appointments, caring for family, housework, cooking, paid work, and in more severe cases, as I have mentioned above, eating and going to the loo  were the only priorities they could manage. As for sacrificies, most of the time the stuff that has to go is spending time with friends and/or family, doing creative projects, having some form of entertainment such as TV, cinema, gigs, talks, videogames, social networking, keeping up with friends and family via phone, text or email, home improvement, taking part in special events. You know, all the things you might consider real “living” when not “working”. 

And regarding work, pwME who have paid employment I have talked to have the stark choice of earning money or any form of social life, as all they can do in the usable time not used up by work, is eat, sleep, and rest. Others cannot work at all or, like me, work on projects unpaid that have no deadlines which can be picked up and put down depending on energy levels and available usable time, often only being able to spend minutes at a time instead of hours or days. (This blog post for example has taken me well over a month to produce.)

For me, making those sacrifices, sometimes having no choice to do so, is one of the worst burdens to carry in terms of the impact on my mental health. We have to isolate ourselves from our friends, cancel plans and projects that may be motivating and uplifting, and either reluctantly focus on our priorities or, at its extreme, resort to the only priority which is to stay perfectly still trying not to expend any energy at all. Total and complete rest. The social impact can exacerbate this mental health pressure too as I have heard many accounts and experienced similar of friends and loved ones not getting it or being confused when time with them is sacrificed, especially when something or someone else is chosen instead. Statements like “well you saw such and such last week so”  or “you went to x place yesterday”  or “you just didn’t want to come” or “it doesn’t have to be for long” have all been said either directly or indirectly to pwME. What often comes next is those invites to spend time with people lessen over time until eventually they stop.  But that is not said to blame those of our loved ones with full access to their energy as we understand how confusing it can be and having to let someone down can feel bitterly disappointing no matter the reason. (This is also one of the reasons why pwME spend time trying to explain their experience and the impact of this disease.)

There is no easy fix to any of this this though, and this in not the purpose of this post, rather I hope it illustrates the reluctant calculations of how a pwME spends their usable time, and why to people like us our time is so fragile and precious. 

Consequences

I have already covered some of the consequences of prioritising usable time; mental health pressures, isolation, loss of friendship are all real and desperately unpleasant – yet not the most unpleasant. That would be calculating our usable time and getting it wrong. Oh, if only there was a nice tidy, clean formula we could use to make sure that we stayed within the confines of what we know we can do without triggering PEM. If only there was a way of knowing in advance whether the time and energy calculated to undertake an activity was exactly what you thought it was coming out as going in. If only we could manage our condition without consequences. 

Instead, we have only the simple and obvious method of trial and error. And, boy, are there errors. Our regular Twitter discussions are peppered with comments about how one day we were able to do something but another day it sent us back to bed – as I mentioned above, usable time yesterday is not always usable today. A classic is washing hair or showering in general which a lot of pwME cannot do every day (see priorities and sacrifices). I have definitely experienced that. Or I’ve done a few dishes which I had managed the day before and then, after doing a similar amount, I have felt faint and lost the ability to speak in sentences. Or attending a medical appointment which has been meticulously planned in advance, like some kind of military offensive, that has led to a week in bed completely depleted, with increased inflammation in my body. A body I can’t move anyway due to profound muscle weakness and one that can’t be relieved with sleep because of horrendous insomnia.  

So consequences can be considerable. They can also mean that the overall experience of M.E. could be more severe until the body has had time to recover through sufficient rest when we can build again, prioritise, sacrifice, and pray we don’t get it wrong this time.  

(This has taken 50 minutes of usable time to write. Equivalent standard time of 3 hours 20 minutes)

Clever Maths to illustrate: 

It may be time now to give you some solid examples to illustrate what it is like for a pwME to calculate and manage their usable time. I am not a maths person but I did find a pwME who is very excellent at maths to check my sums, and I am incredibly grateful they chose to spend some of their usable time to help me.  Thank you, @LivingnExisting

As I said, my usable time per day is 3 to 4 hours on average. And when I say on average it is the equivalent of me saying on average the UK is flat  (Ben Nevis and Snowdonia would beg to differ) In reality there isn’t an easy calculable average for the reasons I have outlined above but for the purposes of this illustration let’s say there is, and my usable time per day is, liberally, 4 hours.

Now let’s say that of available time in a day for a person who does not have ME, that is, you, is 16 hours per day (giving 8 hours for sleep in 24 hours) and let’s call that  “standard” time. That is the time a person has available between waking and sleeping, that is that person’s usable time.  

For a pwME like me that usable time is reduced. Instead of 16 hours I have 4 hours per day. The rest of my “standard” time I have to spend resting. So we could add here that my rest time is 12 hours per day. Then, if I expresed that as a percentage it would mean that my ability to use my time is 25% of yours. (4/16*100)  I have a quarter of “standard” time to call “usable” time. 

When I did this calculation the impact of my condition really hit me. It hit me again when I calculated that this meant 75% of my day had to be at rest (12/16*100).  During my adult life, before 2021, I had an active career, I spent countless hours with friends and family, I went on adventurous holidays, even managed to go to large gigs and other special events when M.E. symptoms were much more manageable. Then my usable time was around 70-80% of standard time. When I look at this now the decline over the last year is in sharp focus.² 

I also did this calculation for the pwME who told me that their usable time was 20 minutes. Before I calculate this just take a minute to think about that. 20 minutes in a 16 hour window. 20 minutes to live a life every day. The answer by the way is 2.08% (20/960*100). Just over 2% of your day to be active in any form. And that person still has expectations laid on them to use their time in a certain way. If time were precious stones theirs would be the rarest of diamonds. 

How are you feeling right now, now I’ve shared that with you? I imagine many of you will have immense feelings of gratitude about the time you have? If so, that’s great, and as you should. No-one with M.E would want you to go through what they go through nor would they want you to feel any guilt or shame for having what they don’t. That helps no-one. If you feel grateful, celebrate that, and hold on to those joyous feelings. It might help you to explain to others that have the same level of “standard time” as you that may not feel that they have a gift of time.   

One more thing about these calculations before I start to wrap this up. I asked my maths pwME friend, if my time is 25% of standard time, does this then mean that in real terms when I do any form of activity that this activity is the equivalent of four times the amount it would take a person who does not have M.E.? Their answer was yes. You might have noticed throughout this post I have added the usable time taken, and the standard time taken, after a few paragraphs. That is for this point. Preparing, writing and researching this piece has taken me 10 hours. Applying this calculation this is the equivalent of 40 hours of your time. 4 times more. (1/0.25) Apply that to my friend who only has 20 minutes of usable time and that is 500 hours. 50 times more (1/0.02) Now imagine completing a project that has taken you 500 hours. That’s over 30 days of standard time with no breaks, nothing else – no loo, no eating, no showering.  

Why is this important? This, dear ally, is where you come in. Often people say to pwME “Oh it won’t take long” or “I just need x of your time”  or the one that gets me the most is after completing a task and ready for rest when someone says “can you just do this additional thing”. But unless the person requesting the time has M.E. themselves they are not asking for the same thing. Asking a pwME for a 15-minute chat could be like asking them for an hour or half of your day, waiting on hold, in a waiting room, in a queue could be catastrophic, and expecting a pwME to meet a deadline that is the same as yours would be inherently unfair given the differences in time available. And yet, we are often held to the same expectations as you when it comes to the measurement of time. And, moreover, to explain this in ways that can be easily understood takes our usable time to do so. There have been attempts to do this, for example,  for a different condition with an energy-limiting component, what is known as the Spoon theory which has given birth to the term “spoonie” – someone with a chronic condition where their energy is limited or impaired in some way.  A few of my friends very lovingly speak to me in terms of whether I have spoons or not to talk to them or do something together. It’s great to have a common language and build understanding. However, for some, and that includes me, it doesn’t offer enough granularity to my experience (i.e. it is difficult to match the “spoons” needed accurately to an activity) in the same way time does, or numbers for that matter, which is why I wanted to explore this in more detail. But I do appreciate that thinking in terms of spoons can be helpful to many. 

So whether you have a loved one with M.E. or are able to support the cause I hope from this post you can see why we can’t do it on our own. Not only that but I hope when you read about the amazing things pwME have done you can truly marvel at their achievements, such as Jen Brea, Alem Matthees, Jaime Seltzer and my friend Sally Callow, as well as countless others.  Maybe you can also see the many pwME that have had to give up working in any form, to sacrifice the ability to achieve because of lack of usable time and the choices, the priorities, they have to make. These are the people we know and recognise each year as the #Millionsmissing.

(This has take 1 hour 20 minutes of usable time to write. Equivalent standard time of 5 hours 20 minutes )

Thank you for your time.

Nearly there, and before I finish I just want to say, sincerely, thank you for your time.  I realise this particular post is long and I have covered quite a bit of ground but I hope you have found it useful. Believe or not I have cut a lot of what I wanted to say and what others have said to me so I invite you to read the thread on Twitter from the discussion we had on usable time on 8^th August to see what I might have missed. And now the call to action: 

Please help us. Please help people with M.E and now Long Covid. We desperately want to have our time back and to be free from recording in our pacing journals and constant calculations of time and effort for any and every daily activity. There are still so many unknowns for us because of the woeful lack of research. Some I have covered – why our energy limitations are so fluid, why it is unpredictable, why we suffer PEM one day and not the next, why some pwME are more severe than others, why we have to live half-lives, quarter-lives, hardly any life compared to others. 

Help us push for research, amplify our voices, take time to listen to our stories, and whenever you can, acknowledge and respect the time we can give and what that means. Help us to get to a place where we can change our relationship with time to the one you have. We can’t escape Time, neither can you, but with your help we can at least release its shackles. 

***

To help – some ideas

Donate

There are few charities that need help if you can spare some cash. You can choose to support pwME in their day to day lives or give money to help research the condition, which remains so important and so needed. You can find details on various M.E charities on my page Living with M.E.

Support

Find someone with ME and, if you have time to give, ask them what they need. Could be some basic admin, could be writing to their MP, could be helping them with a shopping list. It’s like giving them back usable time! 

Amplify

You can find many a good discussion on Twitter with the hashtags #pwME and #MECFS #MyalgicE.  Share, retweet, quote tweet, post to Facebook, get involved, ask questions. 

Advocate

All of the above, and whenever you can challenge people’s thinking. There are still so many people who don’t know about how M.E can devastate lives, and how Long Covid is similarly wreaking havoc. Share what you know. Fundraise. Lobby for change. Join the fight. 

Comment

If you have any questions or comments, have some experience you would like to share or anything to add, that goes for M.E. allies or pwME reading this, please comment below. This post is based on my experience and a discussion with a small sample of pwME and therefore does not cover the issue as a whole, especially in cases of more Severe ME where usable time is non existent, therefore I would welcome opening this discussion much further and wider to generate further debate, ideas and share perspectives. 

Thank you.

(This has taken 50 minutes of usable time to write. Equivalent standard time of 3 hours 20 minutes

In all, this has take 4 hours 30 minutes of usable time to write (equivalent standard time of 18 hours) in 5 sittings with 3 edits taking 2 hours 30 minutes plus 3 hours preparation, note-taking, and lots and lots…and lots of rest, over 6 week period)

TLDR

People with M.E (pwME), similar conditions, and now Long Covid – conditions where energy levels are impaired and unpredictable – have to constantly and aggressively manage their time throughout the day to maintain some level of control over their symptoms, sometimes getting it right, sometimes getting it wrong and exacerbating their symptoms experiencing what is known as Post-Exertional Malaise (PEM). Time for pwME is divided between active (what I call “usable”) time and rest, often with rest taking much more of the day than any activity. Usable time can vary by person, activity, level of exertion, or for unknown reasons, which requires much more research to understand. People who do not have M.E. do not need to divide time this way outside of time for sleep and therefore their usable time which I call “standard” time is between waking and sleeping.

This post attempts to create a calculation of usable time by comparing it to standard time. Eg if I have 4 hours of usable time a day (time between waking and sleeping when not at rest) and a person who does not have M.E has 16 hours then that is 25% of standard time, which can also mean that an activity for a pwME with 4 hours of usable time takes 4 times longer. Eg a 15 minute phone call is equivalent to 1 hour of standard time of a person who does not have M.E.

I call on people who do not have energy impairments, our allies and potential allies to support pwME, amplify their voices and advocate for them using the one resource they have that we often do not – time.

***

Footnotes to main post

1. Although my language is absolute there is an exception to this which is pwME of a more severe nature. PwSevereME don’t have the option of avoiding PEM because anything beyond lying still and resting is not possible. For more information on Severe ME please check here
2. I talk about my experience with ME and specifically the impact of the last year on my decline here