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.

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.

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*