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.