Category Archives: Daily Life

Mar 19 2019
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Daily Life

Aw, No, Not Again?

My three worst MS symptoms are fatigue, nerve pain and brain fog, in no particular order.

To a lot of people, this sounds fairly manageable; we all get tired, a bit fuzzy in the old brain and we all have aching legs and arms? Yes, but, I’m only telling you the three worst symptoms, and there’s plenty more.

Anyway, I like to think I’m quite savvy with my MS comings and goings, yet it never, ever fails to surprise me.

Long story short, the MS fatigue is back with a vengeance and it means serious business. On Sunday, I felt so tired, I actually wanted to throw up. I flung myself on the sofa and was dead to the world for two hours. On Monday, I called in sick to work and went back to bed. Twice.

I went to work today (I have to, bills), navigated the terrain really well and luckily we finished early. My lovely boss even walked up the road and payed a cheque in for me while I sat on the door step of the house we are working at, feeling quite useful as I watched out for parking wardens.

Back home, I got out of the works van, stood on the ground, then my left leg gave way and I just collapsed. Bit embarrassing, extremely painful, hope the neighbours didn’t see.

So I have a flare up and it’s a bad one. I haven’t been like this for months. Every part of me is saying, ‘breathe, take it easy, it’s fine’, but inside I’m fretting. I’ve already missed so much time off work and studying has been pared back to the absolute minimum.

Brain fog has ensured that for the last two weeks I’ve run out of stuff to watch on Netflix and Amazon and am looking forward to the next series of ‘Married at First Sight’. Anything is easier than picking up books.

I’m trying to look after myself though – the boss makes sure I get to shops for food, he’s understanding about the time off and he cheers me up no end when we’re sat in the van putting the world to rights, as builders do. He even bought me a burrito today and expressed surprise when I swooped in on his leftovers, ‘nom, nom, first cooked food I’ve had in days‘.

I know this will pass, it’s just that awful sinking feeling when you know you’ve got to ride out the latest setback. I’ve instigated Code Red, the Ten Minute Tomato Rule – try ten minutes of everything. So laundry is in machine. Cat is fed (she’s on a Whiskas strike and will only accept Sheba – it’s a battle of attrition). I vacuum for one minute every other day and take nine minutes out.

It will all be fine. In the end.

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Feb 17 2019
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Daily Life

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 …

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Jan 27 2019
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Daily Life

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.

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Dec 09 2018
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Daily Life

So This Is Christmas …

We are recovering – The Teenager from being attacked, my much lesser incident of a twisted ankle.

Damned foot-drop.

I remember lying at the back of the works van, having fallen and thumped to the ground, thinking, ‘this is just not happening’. But it did.

Do you remember those falls you had as a kid? That sickening thud of the pavement rushing to meet your head? That’s what foot-drop is like. Of course, it’s ‘curable’, if you concentrate on every single step you take and will your feet to rise to the occasion.

But who has time for that? So I fall. I trip. I can trip over dust, cables, pavements.

And it brings me up short, and maybe not in the way you might think.

Our dad died forty years ago this year from complications arising from his MS; I am one of four siblings he left behind.

When he died in 1978, nothing was available to alleviate his condition; he was sent home after brutal tests, with only a walking stick and a diagnosis of ‘crippling paralysis’, now known as Primary Progressive MS.

After eight years, he died at the age of 35, a husk of the brilliant man and scholar he once was.

I am lucky. I was born into an age of MRI’s, MS nurses, disease-modifying therapies, which is why I didn’t hesitate to accept the one that would allow me to be well enough to be around long enough to see The Teenager in to University.

So when I come up against seemingly impossible situations, such as The Teenager calling me in work saying, ‘Don’t worry, but …’, I am perhaps more sanguine than most parents.

He is alive, well, and healthy. It is him who called me, not a consultant, a police officer or an anonymous University staff member. I was only grateful that I could speak directly to him, despite his trauma.

Christmas is always a tough time for families. The Teenager will be home in a week, and the washing machine will be pushed to its limit. The cat will be giddy with delight and I will be over the moon to have him back in our little cottage.

However, gratitude is the most important emotion; gratitude that I can greet him at the door, welcome him in and be the same person (plus limp) he last saw at University. His bed is ready with fresh linen, the fridge will be stocked and we’ll have a great catch up.

It’s precious. I’ll never lose sight of what we could have lost.

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Oct 16 2018
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Daily Life

The Journey of a PhD Began With 1,000 Words – And YOUR Help

I’ve read a lot about ‘Imposter Syndrome’ recently and I totally identify.

In the Summer, I applied for a teaching job at a University – a ten-week short course focusing on blogging.

I duly went for the interview and after taking my seat, the first thing I announced was ‘Oh, I’m not academic’.

Needless to say, I didn’t get the job.

I also said, ‘Oh, I don’t write, not really.’

I guess I’ve grown up believing ‘writing’ belongs in inaccessible ivory towers, to which I have no access. In my mind, ‘writers’ gad about London, passing through Private Member’s Clubs, tapping into the Old Boy’s Network.

It took one of my interviewers, the wonderful Michelle Deininger, who gave me insightful interview feedback a week later (when I could face it) to point out that, d’uh, if two global drugs companies feature my writing, and I have a book that is still selling, then I’m a writer.

And now I have joined the National Union of Journalists, I really have no excuse.

My little blog started this month, six years ago – a cry/shout out against everything that I was experiencing; the loss of my income, my job, my partner, my future. Perhaps it’s true that writing should always come from the heart, and encouraged by M. J. Hyland, who urged me to start blogging, I picked up a book about WordPress and away I went.

When everything else around me was falling to pieces, I found solace in writing. I poured out my deepest, darkest fears, my anxiety, my despair. But also the comical moments with MS and my teenager.

In 2011, when MS first started, I was struggling to complete my degree.

In 2018, thanks to everyone here, I have gained my Master’s and started my Research PhD, with MS as the main focus.

So, the PhD. I have a monthly target of writing 1,000 words.

If you want to, I would really love to hear your stories about when you were told your initial MS symptoms were ‘all in your mind’ or something similar.

It happened to me.

Despite my father having PPMS, I was initially dismissed in A&E, and told quite definitively I did not have MS.

Eleven months later, I was diagnosed with rapidly-evolving MS, and had treatment to match, natch.

If you want to, please email me at barbarastensland@hotmail.com  All replies will be treated in utmost confidence. But if you’d like to, I will mention you as a reference in my completed PhD and book.

Please, do what I did – just write. Tell me YOUR story.

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