Playing The MS Game

Almost seven years after my diagnosis, and years of symptoms before that, I think I’m now fairly adept at playing the MS Game.

I know when it’s best to:

Wake up – 5am – brain at fullest function, emails, print things off, brainstorm Uni stuff. Coffee helps.

Shower – straight after work (I know, weird, huh?) but working as a builder, it’s best to wait until after work as I just can’t handle two showers in a day. I shove my hair under a woolly hat and hope for the best (and some customers call me ‘lad’, gah).

Cook – a moveable feast – whenever I have the energy. Freezer bags of pre-cooked food are my friend for bad days when I can do nothing more than microwave. On really bad days, well …

Work – has changed so much over the years. Thank goodness my job is flexible and can be adjusted to how I’m feeling, plus working with a group of friends is balm for the soul, compared to the bullying I put up with in my previous job.

Study – five minutes here, ten there. Anywhere and everywhere. Boss drooling in Screwfix? Whip book out, highlighter in hand. Boss talking for hours with the plumber/electrician/plasterer? Same. As friends, we go back a very long way and he knows I pull my weight (lol).

Do Housework – on an ‘As And When’ Basis. Cordless vacuum, ignore the dust. Keep hold of that leaflet for cleaning services for when I win the lottery.

LIve – the tricky one. I no longer travel alone. I rarely socialize. Once, twice a month – it’s a lot of effort. Home is my safe space. Meetings are planned for the morning and taxis are a godsend. It’s the afternoons and evenings that are the problem.

Handle Relapses – the worst of all worlds, especially living alone. All of the above is scaled back to The Sofa.

Hold a Pity-Party – definitely in the wee small hours. I’m plagued by MS insomnia at the moment and seem to feel every single symptom, amplified. My legs crawl with neuropathic pain, I twitch, my hands move too fast or too slow. It’s a waking nightmare.

I think when you have MS, you live with endless body-consciousness – we know exactly what we are capable of (or not) on a day-to-day basis. I still smile when someone says, ‘yeah, cool, next Thursday?

I have absolutely no idea how next Thursday is going to be …

Tagged , , , , ,

Honestly, Don’t Care

Yesterday, a call went out from our Government, encouraging young people to consider a care worker job.

According to the BBC, there are more than 100,000 vacancies in the sector, and it’s hardly surprising.

I worked in this sector for just under two years, eventually being fired when I was diagnosed with MS, after a horrendous and sustained bullying campaign by the management.

In my idealistic mind, I wanted to experience care at the coal face, in preparation for undertaking a Master’s in Social Work. After a low-paid, local job for ten years, to juggle childcare as the only present parent, I was now free-ish to explore further opportunities.

So I signed up, went through the random induction course and donned my uniform.

For care companies, a 15-minute call is gold-dust – we would turn up, dispense medication, undertake vital care-checks, whizz round the kitchen, take out rubbish, talk to the customer, clean the toilet, note our concerns and perhaps make a cold lunch for later. For this, we would earn under £4.

It’s sold to families as the answer to their ‘problem’, i.e their parent/relative and the care company earns more, percentage wise for these calls, so they are heavily promoted.

Then, a long journey to the other end of the city – mileage paid at the lower end of the scale (after six weeks or so) and nothing for time. I often spent 45 minutes in heavy traffic, knowing I was not earning a penny.

My first timetable lasted from 6.45am to 9pm. Four visits, bringing in around £25, but being on call for over 13 hours. It was important to sidle up to the care-coordinator as they could make or break you with the scheduled visits. If your face didn’t fit, you got the terrible calls.

And I mean terrible; despair, neglect, cruelty, we saw it all. We coped with incredible emotional demands, and were massively under-prepared to deal with severe dementia, bereavement, depression and so many more conditions. And all for a minimum wage, zero-hours contract.

I’ve seen a lot in my life, but nothing prepared me for this underworld of care. It’s brutal. Visits are cut under new directives, or lack of ability to pay. Relatives implore you to stay a little longer. I once cared for a couple who both had dementia and went to their care home in my own time to clean their toilet, as they were convinced someone had broken in and used it.

We criss-crossed the city, cleaning mess, soothing, caring, noting concerns in care file which would never truly be looked at unless an inspection was imminent or anticipated. We were timed and admonished if we went over the allotted minutes, despite it being unpaid.

In effect, we were massively underpaid social workers, by any other name, except we got our hands dirty.

Care work, as it stands, is not for most people, far less young people. I would rather they sought work in pubs, cafes, restaurants, where people are happy and optimistic.

Until care work, such a vital resource, is recognised and rewarded, it will never be viewed as a valid career option. Why do we outsource the care of our most vulnerable people to underpaid, under-trained and unprepared people? We do not do this in kindergartens or schools, so why treat elderly and disabled people in such a warehoused manner?

Tagged , ,

You’re On Your Own

What does it feel like to live on your own with MS and essentially be your own carer?

Luckily, we now have a vast array of information for carers of people with MS. There are carers groups, helplines, benefits.

Thank goodness things have improved immeasurably since my dad had MS back in the 1970’s.

But living on your own with MS is a whole different ball-game – you are the patient and the carer. Sure, we might see our neurologist and MS nurse once a year – the support they give is invaluable.

Yet look beyond those two appointments, and you discover a whole raft of worry, anxiety and fear. It’s almost like arguing with yourself: ‘you need to rest’, ‘Yeah, I know, but I need to go to work/sort out the laundry/write a shopping list.’ And, ‘whoops, there goes another coffee cup, who’s going to clean it up?’

Sometimes you can cope with the conflicting advice you get from yourself, and then other times it tips over; you’re too tired to make dinner, you fall out of the shower and lie on the floor for over an hour, you take yet another day off work and worry about your income. It is Just You.

It doesn’t help when you’re also too damn proud to ask for help. I’m fortunate in that I know I have that back-up should I need it, but it still makes day-to-day living hard at times. My long-suffering Boss sometimes takes me to pick up my prescriptions, drives me to the shops for food and is always on hand to fix a blown fuse or a broken washing machine. But back at home, when the door closes, I know I’m on my own.

It’s tempting to slide into another Pity-Party-For-One, and I always fight against it – I held one for two years after my diagnosis and I don’t want to revisit those dark times.

I wish there was more information about Living on Your Own with MS. Many of us do. We muddle through.

And of course, there’s an upside – I’m eternally grateful I was on my own when I fell out of the shower. The thought of being discovered clutching a bunch of cotton buds, naked save for a small towel brings me out in a cold sweat.

This is where social media comes to the fore – to send a little tweet out into the ether and have so many comforting replies is amazing.

We may live on our own, but are we still part of a bigger network?

Tagged , , ,

Grossly Unfair

I don’t need to be ‘fat-shamed’.

I do that myself, quite easily, every single day.

No-one was more shocked than me, with how much weight I packed on after starting medication for neuropathic pain, back in 2011.

Then the Grave’s Disease, oscillating between hyper and hypo with a string of meds to match.

Then the carb-fest I indulged in during family dramas.

So, yes, I admit it, I’m fat.

I agree it’s not a disability as such, but it’s certainly a side-effect of a disability, in my case, MS.

On top of everything I’m coping with, I’m astounded that some people have a problem with my weight. I’m mobile, I work, I go to University to study, I look after myself and need no external help.

It’s not easy finding nothing to wear in shops apart from lurid tops in garish colours. Or catching a glimpse of yourself in one of those long mirrors – the chubby face, the still-healing hernia, the ‘bigness’ of me, when inside I feel pretty small.

It’s weird – my MS is mostly invisible and I have to prove over and over again that I am in pain, that I could do with some kind words and help. Yet my weight, outwardly visible, is what people remark upon and feel free to make hurtful comments about.

Believe me, I know. And I also know that fat-shaming does not work.

Fat-shaming keeps you at home, exactly the same as MS. It keeps you out of view as much as possible. And it hurts, deeply.

When I stand on stage and talk to a crowd of people, I’m acutely aware I’m fat. But, I put that to one side and give my best. The people are there to hear me talk, not judge me on my dress size. I would like to think that what I have to say about MS is far more important than my weight.

I am not impacting our NHS or our social services with my weight,

I carry it all by myself.

Tagged , , , , ,

A Tomato Changed My Life

It really did.

A couple of years ago when I was struggling with my studies, I was lucky to have several sessions with Student Support at University, thanks to my Disabled Student’s Allowance.

I explained how overwhelmed I felt, all the reading, essay-planning, writing up. Not only that, also tackling the physical realities of life with MS; keeping on top of the laundry, the garden, the housework.

I was failing big time.

We talked it through and I realised I gave up doing things as I wanted to do the entire job or task in one go, and when I saw that I couldn’t, I threw the towel in and walked away, burying my head in the sand.

She thought about it then suggested I needed a tomato. Of course. A tomato would solve everything.

She clicked on an app in her phone, something tomato-related. It was simply a timer. So where was the wonder in that? She advised that I break tasks down into tomato-timers, like those old-fashioned kitchen ones. Set the timer for up to 25 minutes, get on with the task at hand and then stop when the timer rings. Have a break and then, when you’re ready, pick up where you left off.

Um, yeah? A humble tomato was going to sort my life out. I was pretty sceptical, but downloaded the app in good faith.

I did a bit of research. Apparently it’s a time-management technique developed by Francesco Cirillo in the 1980’s, using his kitchen timer to break down tasks. He called it the Pomodoro Technique (Italian for tomato, lol).

It’s so utterly simple and obvious, it just couldn’t work for me. I was absolutely certain. We were told the same thing in school – ‘take regular study breaks, do something fun like playing with your hamster’.

Not long after, I was up against a gruelling essay deadline, with no hope of achieving it. The laundry basket was full and the house was submerged in dust. I found my tomato and clicked on 10 minutes – easing myself in gently.

Well, long story short, it worked. Ten minutes later, the washing machine was humming away. Break. Twenty minutes writing, break. And so on. I was chalking up tomatoes like there was no tomorrow.

I still feel a bit embarrassed at how elementary it is, but it really resonated. My back-garden is in a terrible Winter-state and it scares me how much time I need to make it Spring-ready. Tomatoes.

I spent twenty minutes the other day, clearing weeds, picking up the mouse-heads (thanks, cat), and sweeping up some leaves. The immense amount of satisfaction I felt more than makes up for feeling ever so slightly silly.

Aside from studies, it helps enormously with MS. I now feel more capable, and less overwhelmed. It’s taken the burden of pressure from me.

Try a Tomato Today. It might just change your life.

Tagged , , , ,