Category: society

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).

Resting looks to others like free time…

But feels like this (complete exhaustion, or essential recharging)

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!).

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.

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.

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