It is possible to spend most of the day resting and yet have no free time

It is possible to be house-bound, off work and really busy

I understand why people don’t expect these combinations. When you consistently see someone in bed listening to music, watching TV or dozing, it would naturally seem like they have free time.

But if you have Myalgic Encephalomyelitis/Encephalopathy or a similar chronic illness, especially if you’ve only recently contracted it or it has recently got much more severe, you may have amazing amounts to do but only have the energy to do things for, say, an hour a day, or even less time. It’s a bit like being in a prison where you have to spend 90% of your day in an empty cell, and you get a small window of time each day with a pen and paper. In a sense, 90% of your day is free, but you can’t actually do much with it. The prisoner potentially has more options than the M.E. patient, as at least you may be able to exercise, if the cell was big enough. Often, 90% of my day I’m physically and mentally exhausted, and the most I can do is listen to relaxing music with no words, rest in silence, or listen to something extremely low-key and repetitive such as First Dates.

Carers and friends often only see me resting. This is because it’s quite hard for me to do another task while they’re there as with friends obviously talking to them is the objective and it would be weird to do admin while they sit there, and with carers it can be difficult to do tasks while they are coming and going, asking me questions from time to time, and also I must admit I do sometimes think that I’ll look ‘too well’ if I’m sitting there filing or something while they’re doing my laundry, possibly wondering why I’m not doing it myself (with no knowledge of the spoon theory).

So yeah, it looks like I spend all day in bed or in my recliner doing nothing I suppose. When actually I’m recovering from doing a twenty minute or half hour slot doing urgent life admin. ‘Such as what?’ I hear you wonder. Here goes. It’s a long post… you’ll probably get bored before reaching the end but in this case that’s totally fine – I’ve made my point!

 

People often suggest things for me to do, not realising I have very little free time, or even say ‘you have a lot of free time, you could do a course/make art/think about working from home’. Resting time isn’t free time. It’s recharging. My brain and body have shut down and have a very limited capacity for action until I’m done with the rest. It’s actually really boring and frustrating for me to need to rest so much, but unavoidable (and yes, I am pacing and using resting ratios).

What resting looks like (free time to do online tasks or crafts) and feels like (recovering from complete exhaustion) are very different! (Images from Unsplash and Pixabay).

Disability forms and correspondence

In my first year of severe M.E. this took up a LOT of time. Given that my ability to do anything other than lie in bed was limited to some basic physio exercises, basic hygiene and food prep and about half an hour of life admin, this was slow progress. I didn’t count the hours but basically it took me over a year to apply for all three disability benefits – several months for each one. Given all the scary stories of people’s responses being twisted or misrepresented, I wanted what I put in writing to be very accurate and to clearly tick the right boxes by using the right language that they needed to assess me, which took research and reflection. It felt a bit like doing a dissertation, while all the time having the flu. There is also the process of obtaining evidence from medical professionals and carers and so on, which takes thought and time, and preparing for assessments, as well as chasing up the organisations if your case seems to have been put on a permanent back burner.

I have yet to discover how much admin is involved in being reviewed!

Buying, maintaining and replacing disability products

This takes up a lot of time. I have a wheelchair, which was tricky to get fixed. While not explicitly disability products, I rely heavily on having a working laptop and phone. I also have many other products [1] that are necessary or very useful to me. They quite often break or need replacing, and this can be especially time consuming when you’re housebound and not able to think clearly due to brain fog. I also have to shop for regular supplies of pain relief products such as Deep Heat, Ease Oil, Cura Heat patches, multivitamins and other non-prescription items (subscribe and save isn’t always a great time saver!).

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I wish internet shopping and dealing with returns felt this fun! (Photo from Pixabay)

Making and changing appointments, ordering and sorting medication, trying new treatments, tracking symptoms

This is another big one for many of the chronically ill or disabled. Healthy people aren’t really aware of it. I would say this takes up about a day a week for me, plus filling in charts every evening so that I can track improvements or declines and try to figure out what caused them. For people who are very committed to trying many treatment options, including alternative ones, this can take up the whole week.

In the US, dealing with medical insurance also seems to be hugely time consuming for the sick. Thankfully, I don’t have that to deal with, though I did have to deal with a barrage of letters wrongfully accusing me of not being entitled to free prescriptions that I or my pharmacy had claimed, all of which had to be appealed separately. I call this ‘disability bureaucracy’!

Planning for carers, or doing household tasks

If you don’t have carers, doing routine household tasks can use up all of your available energy. By this I mean shopping, cooking, cleaning and laundry. If you have carers who do these, it takes up a bit less time but you still have to write the shopping lists, plan what to eat, and direct the carers to what tasks need doing, how to do them, and where everything is, which can actually be pretty time consuming. There’s things like getting a key safe as well and spare keys. Then there’s the time spent re-arranging when one is sick or needs to come at a different time and time dealing with any issues that might arise, such as misconduct.

Then there’s the admin of paying carers or cleaners.

man throwing papers in air annoyed prawny pixabay
Not sure what this guy’s problem is but I feel you dude. It sure can all get a bit much when you’re brain feels like a rock and your eyelids are drooping. (Picture by Prawny on Pixabay)

Recruitment of carers or care agencies, or cleaners

This can be a mammoth task. Unfortunately, carers and cleaners often feel like it’s a very low status job and are often keen to move on to another job (the low wages don’t help either). It can be really hard to find people you gel with and who are good at doing the job, and actually advertising and interviewing candidates can be very difficult when you’re very sleepy and your thinking is muddled by brain fog, not to mention that you’re exhausted by all the other tasks mentioned in this post.

Normal life admin

On average, some studies suggest people spend about four hours a week on ‘life admin’ [2]  (or 109 tasks a year [3]) which includes paying bills, managing childcare, planning meals, making purchases and dealing with any problems with them, managing finances, getting haircuts, planning travel etc. Disabled and chronically ill people often have to do these things too, and if you can only manage half an hour of activity a day you’re going to get very behind, especially with the added disability admin on top. Planning travel or outings is something that sadly I rarely get round to, even when well enough to travel, because it’s the least urgent. It’s also more complex when you have mobility and energy restrictions, as you may need to book assistance or have a carer travel with you, find out distances of walking, whether there are lifts, etc.

Arranging household repairs takes up a lot of my time. Being in the house a lot, I really notice things, and also end up being the go-to person to be present when the plumber/engineer/builder comes round, and also the person chasing up such appointments.

The grocery shop used to take up an hour of about six hours or so of productive time in my day – since getting M.E. it requires two days to do it (shopping online for delivery), and nothing else gets done on those days.

Moving house

Moving house is a whole other nightmare for the chronically ill and disabled! Not only is there all the usual stuff, that’s really hard when you’re weak and exhausted and housebound, but also new places can give rise to new problems, exacerbating your condition in some way.

Car admin

If you have a car and are chronically ill or disabled, it can be both a blessing and a curse. A blessing because it may improve your mobility (or ability to park up in a scenic spot and have a nice rest there!) but a curse because it does need driving every 2-3 weeks to keep it in good health, and if you can’t do that it will need a load of repairs, new battery etc. Plus there’s the usual annual MOT, purchasing car insurance, car tax admin, service and getting petrol, just adding to the long to do lists of the already overburdened.

car-repair-image pixabay
Cars can be a blessing and a curse when you’re ill. (Image by Ryan McGuire on Pixabay)

Health Research

Doctors don’t always know that much about all illnesses and conditions, or don’t concern themselves with the finer details, such as products that might help, non-prescription pain relief and dietary issues. Or you may be too ill to get out and see them (and them unwilling to come to you). So some time is required in looking into new and existing problems.

Awareness raising with friends, carers etc

I initially neglected this, but regrettably so. It’s really important to communicate to friends and family what is going on, why you aren’t seeing much of them, what’s happening to you, what you’re like when they see you and so on. And the same with carers. Unfortunately, with many conditions it’s quite difficult getting across your needs and showing that you’re not just being weird, difficult or lazy.

If you’re so busy, why spend time writing this post?

I do from time to time have a day off from admin, and I chose to use some of my time off getting this off my chest!

References and footnotes

[1] e.g. back supports, a mattress raiser, special insoles, light boxes, a recliner, special suitcases, special shoes, blackout curtains, physio equipment, special apps, eye masks and a host of other things

[2] The Art of Life Admin, Elizabeth Emens

[3] AAT (Association of Accounting Technicians), 2018

Are they exaggerating their disability and, if so, why?

A system that is designed to eliminate fraud but has unwanted effects

These days the conditions for getting disability benefits and a blue badge are so extreme that many people who are genuinely in need and should be eligible are finding it difficult to qualify. There have also been many instances of the assessors deliberately lying or trying to catch out participants [2]. For me, hearing about this has definitely made me quite anxious about assessments, especially because I look fine. I can be totally exhausted and in extreme pain but I’m young and not naturally very expressive and you really can’t see it just by looking at me. You might see it if you know me and you’re looking with a sympathetic eye, but if you’re looking to fill quotas and save the government money, you could easily decide I look totally normal. Many people going through the process of applying for benefits are aware of the instances where assessors have disregarded what they have said instead commenting on how they looked and other superficial observations [1]. Unfortunately for many young people with severe degrees of conditions such as ME/CFS, MS, EDS, Fibromyalgia and so on, they feel a pressure to demonstrate their disability by walking in more agonised way, turning up at the assessment in pyjamas, using a stick etc. Something the majority of people don’t know is that pain is often delayed, so even if someone isn’t looking agonised now, they may feel it later. I’ve noticed that there has been some adjustment to the application forms to cater a bit more for fluctuating conditions and invisible illness but there’s still some way to go. It’s unfortunate that the very honest people who don’t exaggerate their condition at the assessment are possibly more likely to lose out than the (rare) people who are actually fine and made the whole thing up, and who are probably seasoned actors. Every time I have an assessment (and there seem to be many! Plenty of bureaucracy for the sick!) I do feel a pressure to look ill and in pain (which I often am), but at the same time I worry they’ll see me at another moment looking well and think I’m faking the whole thing! It’s a minefield!

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How useful it would be if pain was visible! Unfortunately, it’s not. Photo from Pixabay.

 

A topic that’s hard to discuss

Another reason I feel like people think I’m faking it is because I rarely talk about how my condition affects me. It’s quite hard to fit into conversation sometimes, people rarely ask and it’s inevitably awkward, as you feel like you’re fishing for sympathy, and sometimes you get pity, or, alternatively, disbelief, which can be quite depressing/upsetting. But I know I need to discuss it more, because it’s just not something people know about, and I’m doing all these ‘odd’ things like sometimes using a stick/wheelchair and other times looking like I walk fine.

Mental ill-health

I think this is also an area that can really confuse people. I’ve found myself thinking ‘so-and-so is always laughing so he can’t be depressed’, and I’m sure that’s not the right way to look at it! I also knew a guy who stayed up all night before his assessment so he’d look ‘more obviously depressed’ by being dishevelled.

anxious looking girl
Those with mental health problems also feel pressure to conform to stereotypical images of anxiety and depression. Image by Pezibear from Pixabay.

What can we do about the situation?

If you have a hidden disability:

  • Try to talk about it more – it’s hard, but I know I need to do this
  • Share this post with people, or similar posts
  • Challenge any suspicions you may have about other people

If you don’t have one:

  • Challenge your suspicions and try not to be as judgmental as we are encouraged to be
  • If you find out someone you know has an invisible illness, say something like ‘I’m interested how the condition affects you, if you don’t mind sharing, so that way I can be more considerate about it’ – they’ll love you forever! And a lot more things will make sense. Do bear in mind they may only give you an edited version though, as actually detailing all the effects could take a long time for some people!
  • Feel free to ask questions such as ‘how does it feel when you walk too much?’ – but make sure your tone is not suspicious or judgmental! Most people with invisible illnesses feel very judged already.
  • Try not to expect people to look how they feel, and try not to assume it’s much worse to be physically unable to do something than to be able but only with significant negative effects.
  • Try to read some or all of the blog posts in your feed about invisible conditions so you learn more.

What are your thoughts and experiences on this topic? Comment below!

If you found this post interesting, you might also like other posts on disability issues:

Feeling like a disability fake even when you’re not

Government finally reveals that more than 4000 died within six weeks of being deemed fit for work 

Reflections on asking for help

Tips on managing chronic pain

Re-examining ‘fear of movement’ in chronic pain patients

Don’t focus on my impairment, ask me what I can bring to the role

We’ve got to stop pretending disability doesn’t exist

Chronic pain: an unrecognised taboo

References

[1] https://publications.parliament.uk/pa/cm201719/cmselect/cmworpen/355/35504.htm#_idTextAnchor019

[2] https://www.disabilitynewsservice.com/wow-questionnaire-responses-show-assessors-are-still-lying/ and https://www.disabilitynewsservice.com/pip-investigation-welfare-expert-says-two-thirds-of-appeals-involve-lying-assessors/ and https://publications.parliament.uk/pa/cm201719/cmselect/cmworpen/355/35504.htm and

A great post about judging others with disabilities and dealing with such judgement: “How To Cope When You Are Feeling Judged” by Despite Pain

via How To Cope When You Are Feeling Judged

Chronic pain: an unrecognised taboo

On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject.

If you’d asked me ten years ago to name taboos in the UK, I’d have said things like ‘female masturbation’ and ‘being transgender’. Twenty years ago, I might have said ‘being homosexual’. Particularly in some circles, these things are still somewhat taboo, but much less than they were. Now I’d include chronic pain, but only because I live with it. If you don’t, you’re probably happily oblivious of the awkwardness around the topic.

The Cambridge UK dictionary defines ‘a taboo’ as ‘an action or word that is avoided for religious or social reasons’. Having suffered from chronic pain for several years now, I’ve only gradually become aware of how often I refrain from mentioning pain, and why. On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject. No doubt this is why I often avoid mentioning it, or mention it briefly and rapidly change the subject myself.

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Living with chronic pain can be a lonely experience when it’s hard to talk about it.

Why the awkwardness?

Are people awkward about chronic pain because they don’t know what to say, like when someone’s parent has died? Or is it because they think you shouldn’t mention it; you should be pretending everything is fine? Hard to know really. Here are my thoughts on possible reasons why people react strangely to talk of pain:

  • Chronic pain, like death, old age and hospitals, is something most people prefer to ignore until forced to confront it. Discussion of these topics causes a sense of unease that people want to avoid.
  • People want to ‘save’ those with chronic pain from talking about something that seems very personal, so strive to change the topic.
  • People are worried about either sounding pitying or heartless, so say nothing or change the subject.
  • Actually, people are only a little awkward but the chronic pain sufferer is expecting awkwardness and that magnifies it in his/her mind.

There’s always the worry that silence means something negative like ‘you need to man up’, especially after actually receiving some rude and inconsiderate comments along these lines in the past.

Then there are other reasons why people with chronic pain don’t talk about it:

  • Fear of sounding like you’re complaining and fishing for sympathy.
  • The complexity of the subject, which can only really be covered fully by a long conversation.
  • Fear of sounding ‘soft’.

This article sums up brilliantly the many reasons why revealing a chronic pain condition can make a person feel very vulnerable: it can feel like you are in a no-win situation. But the less you say (or are able to say, before the topic is changed!), the more likely people are to jump to the wrong conclusions. The more you can explain, the more people are likely to gain understanding.

Why we all need to help end this taboo

The trouble with any taboo is that it creates repression and shame. People feel abnormal and are unable to obtain the benefits of discussing something important to them, such as compassion, getting useful suggestions, and that feeling of carrying a lighter load. And the subject of the taboo remains poorly understood, shrouded by prejudices. Estimates of those living with chronic pain vary, but it is undoubtable that the percentage is high: about 7.9 million people in the UK experience moderately or severely limiting chronic pain (between 10.4% and 14.3%) [1]. How many people do you know with chronic pain? Does it match these statistics? If it doesn’t, then maybe you know some people who are living in the silence of this taboo.

back-pain-pixabay
If chronic pain were visible, perhaps life would be easier for those living with it…

We Brits are well-known for a ‘grin and bear it’ attitude and for euphemisms. We say things like ‘things have been better’, when really we mean ‘things are terrible’. Is this helpful when it comes to chronic pain? Well, there’s certainly a need for much ‘patient endurance’, as chronic illness writer Toni Bernhard puts it. And sometimes we do smile, in spite of the pain, and we must. But we shouldn’t feel pressurised to pretend everything is fine if we feel unhappy. We shouldn’t feel unable to set boundaries, to pace ourselves, and to use mobility aids or other aids which ease our burden. Most importantly, we should feel ok about sharing this struggle, this massive part of who we are.

And with 69% of those with the severest level of pain experiencing anxiety or depression [2], improving the social conditions faced by these people should be a high priority. Feeling that pain is taboo isn’t going to lift anyone’s mood – quite the opposite.

hailey-keen-unsplash-woman-on-floor-in-agony
69% of those with the most severe pain experience anxiety and depression, which could be reduced if there were sympathetic listeners on hand!

How can we get there? If you live with chronic pain, try to start sharing when you can. And if you don’t live with chronic pain, be ready to listen, to show some sympathy, and to discuss this issue which has been pushed into the shadows for far too long.

I’ve started talking more about pain, talking about it whenever a good opportunity arises. I’ve started resisting the urge to not talk about it. And you know what? It feels good. It feels a bit revolutionary. It feels like being myself and like opening the door of understanding, even if merely by an inch.

Related links:

http://sufferingthesilence.com/#sthash.QJKIOsPo.dpbs

http://blog.allsup.com/2014/09/nfmcpa-stigma-persists-for-people-with-fibromyalgia-chronic-pain-conditions/

http://www.dailymail.co.uk/femail/article-3204061/Young-people-invisible-chronic-illnesses-like-HIV-Lupus-reveal-conditions-world-new-portrait-series-prove-don-t-suffer-silence-shame.html

https://wordpress.com/read/blogs/120574110/posts/996 a personal description of the advantages of telling people about a health condition

https://wordpress.com/read/blogs/67332141/posts/796   on the stigma of autism

https://wordpress.com/read/blogs/116356880/posts/220  on the stigma of mental health issues

Scholarly articles/research related to this topic:

http://anthropology.mit.edu/sites/default/files/documents/jackson_Stigma.pdf

http://etd.lsu.edu/docs/available/etd-11182013-152753/unrestricted/rlang.pdf

http://www.ncbi.nlm.nih.gov/pubmed/24548852

Other references to chronic pain as a taboo:

http://mikscarlet.com/the-last-taboo-pain-why-does-it-hurt-us-to-admit-to-it/

http://leeockenden.com/specialties/chronic-pain/

http://www.canadianpaincoalition.ca/media/chronic_pain_final_2.pdf

If you would like to suggest a related link, email me!

References

[1] Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies by A Fayaz, P Croft, R M Langford, L J Donaldson, G T Jones, http://bmjopen.bmj.com/content/6/6/e010364.full

[2] The Health and Social Care Information Centre, Sally Bridges, 2012 http://content.digital.nhs.uk/catalogue/PUB09300/HSE2011-Ch9-Chronic-Pain.pdf