Tag Archives: MS

Back Then, And Now …

In 2012, my only wish was to see The Teenager through High School.

Forward six years and we made it – it wasn’t easy, far from it. At times, it was soul-destroying and took us both to the edge of what we could reasonably cope with.

Yet no child can go through this hideous process without scars, and The Teenager has them in abundance. The support he could have received was patchy at best, mostly non-existent.

He wasn’t a ‘Child Carer’, at risk or falling behind at school, yet I could see the difference in him, and we navigated our way through the years bit by bit.

He is now at University, but struggling in his own way.

It would be great if you guys could send him messages of encouragement through this difficult time.

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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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Research Request – Can You Help?

I’ve been approached by Jowinn Chew, a first year PhD student at King’s College London, based at Guy’s Hospital, supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.

Their research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS.

They need you guys to help them out, so it would be great if you could take a little time out to get involved.

Jowinn explains what will be involved in the task:

You will be responding to statements concerning general thinking patterns and mood.

Following this, you will then move onto the main task, where you will read through a series of twelve short descriptions. Afterwards, you will then be presented with several sentences. You will be asked to rate how similar the sentences are to the original scenario.

We expect that the task will take approximately up to 40 minutes to complete.

If you’re interested, click here! And, thank you.

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It Takes A Village …

MS is hard enough on your own body and soul, but witnessing your child coming to terms with it in a parent is heart-wrenching.

Up until he entered High School, me and The Teenager did a whole lot of things together; I was forever picking up leaflets, magazines, nabbing numbers and ideas from flyers.

We fought dinosaurs, made shields in a castle and painted pottery.

I sewed badges on swim bags, then faithfully unpicked and re-sewed them on to new bags. I bought uniforms, day trips and packed the lunches.

I stood at the rugby sidelines weekend after weekend, freezing cold, following him to tournaments miles away, in the rain, without ever mastering the rules of the game. I picked him up after injuries and faced the long journey home, but with a medal or mini-cup clasped in his hands as he fell asleep in the back seat.

I’m so glad I had that time as everything was set to change.

Just as he put on his brand-new High School uniform, MS hit. His once-active parent was more often than not going through relapse after relapse.

We factored in three Alemtuzumab treatments to coincide with his summer holidays – after coming home with no immune system, I had less than two days each time to be back to ‘normal’ after he spent time with his father.

It takes at least a month to recover an immune system.

The Teenager saw a lot and he didn’t like it – the enforced sleep, the early bedtimes of his main parent, when I should have been the one getting him to sleep.

The utter fatigue and lack of immune system floored me. Luckily, kind parents filled in a lot of gaps, taking him to rugby, standing in on Parent’s Evening, inviting him along to sun-drenched trips to the beach.

But I cried; it should have been me. Yet I was so tired, I couldn’t get my head around it. Instead, I tried to ‘stay present’. If I could not move from the sofa, I would at least try to remember everything that was going on.

And now we have The Teenager at University, having the absolute time of his life.

It’s not just thanks to me, it’s thanks to friends and family, everyone who has ever followed him on my blog, or who has met him in real life and chatted with him like old friends, and to everyone who has ever made him feel that he is not alone.

Significant people may be absent from his life, but he knows that he has a whole support network to call upon.

Watching him at an MS filming session last weekend, I was stunned to hear him speak so coherently and poignantly about his experiences and as soon as I can, I will share it with you.

In 2012, all I asked for was to be well enough to see my son off to University. I firmly believe that thanks to everyone here, he made it.

I certainly didn’t do it on my own.

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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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