Tag Archives: multiple sclerosis

Never Rains But It Pours

It started innocently enough – my bargain Gumtree washing machine juddered and jumped around the kitchen floor with a full load and then died.

With one last gasp, it dropped its drum, then coughed some water out on to the floor.

My PhD student loan faced obstacle after obstacle and I was in danger of having my email access revoked for non-payment of fees.

The Cat decided she no longer liked Whiskas and a bumper pack of tender chunks lay dormant in the cupboard.

So far, so annoying.

Then that awful phone-call from The Teenager. I should have known; it was around 8.30 am, when few Uni students are awake.

He had been assaulted by a group of men after a night out.

What can you say?

I was numb. He had been to hospital, where they put his dislocated shoulder back into place. Two female students helped him and a homeless man bought him a bottle of water. He was bruised, upset and angry. The police interviewed him.

So far, so soul-destroying.

I went to see him last night. My overriding feeling is one of thankfulness that I am not in that group of parents who, instead of hearing from their child, have an anonymous police officer or surgeon on the phone.

He’s shaken up, bruised and shocked, as am I.

Driving back home in the vicious rain, my anger shook me to the core. It’s taken me 19 years to raise a fabulous child, through all the trials and tribulations, and yet a random group of people can flip that on its head, in an instant.

I collapsed into bed and got up for work four hours later.

As a random aside, foot-drop has been haunting me for a while and I thought I had the better of it, concentrating so hard on placing my feet where they should be. I had a narrow escape last week, tripping over a bit of dust and twisting my usually-weak right ankle.

This afternoon, at the end of a very long day in work, when I was at the back of the van, I saw it happen in slow motion. My left foot dropped, I regained my balanceĀ  (congratulated myself) and then foot-dropped a second time in a pile of mud.

I thudded to the ground, smashing my ankle and hands. Embarrassed, furious and scared.

I think/hope we have now had our run of bad luck. The Teenager will recover, older and wiser, sadly. We have new washing machine, ready for his Christmas break washing. My ankle will heal.

I’m hobbling around making our cottage Christmas-ready.

I’m still furious.

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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.comĀ  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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