Living · work

The Trouble with Work

I follow a brilliant blog called Stumbling in Flats, by Barbara A Stensland.  It covers situations and topics pertinent to MSers and others with chronic illnesses in an honest and informative way – it’s fab.

One of Barbara’s most recent blog posts discussed the ‘cost’ of having MS and it really made me think.  I currently work 3 days a week for the NHS.  I’m not on a bad wage, but Hubs and I don’t have much money at the end of the month; we live within our means and try to cut costs as much as possible.  But what will happen when I can’t work any more?  I am under no illusion that I am going to be working until age 65 or beyond… in fact, going by my current health I am sometimes surprised that I am still working.  I’m lucky that I mainly sit down while carrying out my job; but I am also constantly assessing children, carrying therapy materials from store cupboards to rooms and managing staff, and those activities require energy – mental and/or physical.  Until recently, parking at work was a nightmare – for some bizarre reason staff disabled parking at the hospital was in the furthest car park from the doors.  But I made a fuss and it has now been moved closer.  The number of non-staff members parking there is still an issue, but at least on some occasions I can actually crutch walk into work with minimal stress.  Ultimately, though, work is exhausting.  Once home in the evening, I am good for nothing; I can’t go out on a ‘school night’ and usually need to be in bed for 8:30/9pm.

a bit nicer than our NHS computers…

I give so much energy to work; for that reason, I am able to function there and do a good job, fulfilling my role and seeing the required number of contacts.  However, giving my all to work has a knock on effect on my home life.  Mondays and Fridays are usually spent in my dressing gown, having long sleeps and basically doing nothing.  I don’t have the energy to go out for coffee, I have to build myself for going to pick the kids up, I spend hours telling myself that I should do some yoga or exercise but I don’t have the energy to do it.  It isn’t a life, it is paying the price for working.  But I have to work to pay the mortgage, to keep my kids in with their after school lessons and to be able to enjoy a meal out once in a while.  Not only that, I have to work to be able to keep up with the ongoing costs of having MS.  So far I have spent money on:

A mobility scooter (cheapest of the cheap at @£500)

A shower stool 

Petrol for driving an hour and a half away for regular medical appointments

Random expensive plant-based foods to follow the OMS eating plan (nutritional yeast and almond butter, anyone?)

A private prescription, which costs £370 per year

£15 a month on vitamins that help MS

£30 gym subscription – the cross trainer is literally the only cardio activity that I am able to do 

NHS Prescription fees of £8.40 a month

So £1000 a year on gym, vitamins and medicine alone (to be honest I sometimes ask myself why I am bothering).

I am not able to add extra days of work on due to my MS, though this is something that I would have done if I had been well.  So that is a loss of earning potential, which then has an impact upon the pension I will ultimately receive.  How the hell am I going to afford all the above when I have no wage?  I will be too ill to work but won’t have the money to buy things to help me function or feel better.

I’ll pretend this is me in my bedroom

So what to do?  For now, nothing.  I enjoy working – it keeps my brain active and makes me feel like I can actually do something; so many tasks and activities are difficult for me now.  It makes me feel useful when I generally feel pretty useless.  But it is getting more and more difficult and there is an underlying panic about how long I am going to manage for and how we are going to financially survive when the time comes to give it up. And what I am going to do to keep myself busy.  I can imagine that it will be all too easy to buy myself a slanket and spend my days binge watching Netflix.  Which sounds tempting for a month week or so, but believe me, feeling permanently rough with no energy gets boring pretty quickly.  So, for now, work gets about 80% of me and home about 20%….. As that % gets even lower I will have to reevaluate further – but I am hoping that won’t come too soon.


*pictures courtesy of Upsplash*

3 thoughts on “The Trouble with Work

  1. Thank you for sharing! I’m pretty much in the same boat or chair or bed depending on the day of the week! I’m off today with MS and out of sick time urrggh but trucking on!

    Like

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