Category Archives: 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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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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Impatiently Recuperating

So, Phyllis the Hernia is no longer.

Two weeks on, the stitches are healing.

I can see my feet once more. I’m bruised, but happy.

It’s weird though, having this operation is a bit like being diagnosed with MS.

You certainly find out who your friends are.

Not many, but a few of the people I thought would send good wishes, if not come for a visit, haven’t. My other amazing friends, thankfully, have.

I’ve been lucky, I’ve had offers of help, visits, someone to put my bins out on time. Although raddled with Cabin Fever, I’ve had visits every day, bringing me news of the Outside World and a supply of blueberries (my must-have).

Yet being alone for the majority of the time has been interesting. I’ve set up a study schedule. I’ve replied to all my emails. I’ve ordered some covers for my garden furniture. I’ve watched every single episode of ’90 Day Fiance’. If nothing else, I now know how to apply for a visa if an American guy ever took a shining to me.

I’ve tootled around my cottage, counting cobwebs. I’ve snipped dead leaves from plants, sorted through kitchen drawers and, well, been a little bit bored.

I know I need to take it easy, but it’s a bit frustrating.

Perhaps I was a bit hasty in turning down appearing in TLC’s ‘Too Ugly For Love?’

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Judge, Jury and Executioner?

The day I got back home from my hernia operation, I received a letter from the Tribunal Service.

Probably the best ‘dreaded brown envelope’ I’ve ever had.

Without my knowledge, a PIP Appeals Hearing had been held in my absence and to cut a long story short, I won the case. And so ends 11 months of diabolical stress.

This would not have happened without the support of Stuart and Marie Nixon, and my MP, Anna McMorrin.

A reader of my blog put me in touch with Anna and she took up my case, expediting it through the system.

However, I could not obtain crucial evidence from my MS nurse, as the DWP had told them it would be disregarded. I have since found out GP’s and MP’s themselves are also being told that their evidence will be similarly disregarded.

This goes completely against the DWP’s own published guidelines:

From the DWP’s own PIP guidance booklet

Sending in additional supporting evidence

We want to use the widest range of evidence when we assess PIP claims to
ensure awards are made correctly and claimants are paid promptly.
It is very important that claimants provide us with any relevant evidence or
information they already have that explains how their condition affects them.

Information that will help us to assess a PIP claim
Reports about the claimant from:
• specialist nurses
• community psychiatric nurses
• social workers
• occupational therapists
• GPs
• hospital doctors
• physiotherapists
• support worker

Not only that, the DWP has admitted that Capita PIP assessors do not need expertise in medical conditions they assess.

So let me get this straight. We cannot submit medical evidence from those who know us best. And then they send us an assessor who has no real knowledge of our condition.

I call this out as blatant discrimination. It’s a guaranteed no-win situation.

Although my case has been resolved, this does not end here.

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Operation ‘Phyllis’

At last, Phyllis the Painful Hernia will be no more come an operation on Friday.

As if MS wasn’t enough to contend with, this hernia has been making my life utterly miserable.

I had a consultation at hospital two weeks ago; a kindly doctor made me lie on a couch and pushed the hernia all the way back in, before saying, ‘yup, it’s big’.

It’s a large grapefruit strapped to my stomach, a decent-sized Gwalia melon maybe. I’m tired of explaining I’m not pregnant, just fat with a hernia attached.

Anyway, at the end of the consultation I breathlessly asked when he could operate. His sad face told me everything. He explained that although my hernia was an urgent case, hernia operations were not.

Oh, ok. I’m thinking, oh well, I can wait til November. Maybe December? Not a chance. If I was lucky, maybe a year, probably more.

So, long story short, a kindly relative has paid for me to have the operation privately. I have to go for it, to keep working, as I’m struggling. Daily life is a wretched round of clasping the hernia, trying to do simple tasks and grimacing with endless pain.

I’m getting myself organised. They want to keep me in overnight, perhaps two, due to potential MS complications (fatigue probably, lol).

I’ve got some new pyjamas, two sizes up. I’ve ordered some low-carb snacks (always peckish when I’m lying around doing not very much), and I’m sorting through a stack of books to take with me.

There’s a pre-op assessment on Wednesday and I’m wondering how to ask if the surgeon (lovely man) could do a quick stomach lift at the same time. He might as well?

I’ve got ten days off work to recuperate, and I’ve lots of plans: read a whole bunch of study books, work out a timetable of research, catch up on paperwork. Unfortunately though, I’ve become addicted to ’90 Day Fiancé’ on TLC plus all the spin-offs so no doubt I’ll be watching that instead, but the intention is there.

Out of interest, I googled ‘Phyllis’, and in Greek legend a character of this name dies for love and is then transformed into an almond tree.

Spooky. I love almonds.

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