Speaking out to raise awareness may not be easy but it’s vital

I write and speak openly about the fact that I live with a disability, and have multiple sclerosis. It is not difficult for me. I do it to raise awareness of the disease and to help others.

People often find it hard to speak about having a so-called ‘invisible’ disease but, to me, MS is no longer invisible. My mobility is severely affected and is clear for all to see.

Those whose sicknesses are still hidden but choose to talk about them are the true heroes. They are the brave ones.

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Referee Nigel Owens (Pic: Welsh Rugby Union).

For example, let’s look at rugby union top referee Nigel Owens.

So far, and nothing to do with any illness, he was the first rugby union player or official to ‘come out’ as being gay. However, there is more. He admits that when 26 he tried to commit suicide.

In the past, he has also spoken about his successful struggle to overcome eating disorder bulimia nervosa. But now the man who refereed the 2015 rugby world cup final has revealed that bulimia has returned. Bulimia is a disorder of overeating followed by fasting or self-induced vomiting or purging.

Owens told BBC News: “For those who are caught up in eating disorders and say there’s nothing they can do about it, I understand. It takes you over and you feel there is nothing you can do.

“But I would urge anyone suffering to do something. Seek professional advice, tell people about it, don’t hide it, don’t lie about it, that’s a great first step.

Speaking openly

“I came back from refereeing the England summer tour in Argentina a few weeks ago. While I was out there, I made myself sick three to four times. I think because I was eating more food than I needed.”

“I’m speaking openly about it because I know that men and boys can view it as a sign of weakness by admitting there’s a problem that you can’t sort out yourself. But it’s not a sign of weakness; it’s a sign of great strength to do that.

“If men can find it within themselves to open up about their own experiences of eating disorders, you would find them in all walks of life and in every sport in the world.

“So, the more men talk about eating disorders, the easier it’s going be to bust the stigma that this is only a female problem. More importantly, (we can) raise awareness of the help needed and ensure the funding is in place.”

Owens continued: “As for me, I’m focusing on passing the fitness test for the 2019 world cup. What the challenges will be when I finish refereeing and I won’t have to train for something, I really know.

“But one thing I absolutely do know is that the bulimia can’t carry on. And I just hope that by speaking about my experience I can help many others reach the same conclusion.

“It’s not always easy to get the help you need when you need it. So, the sooner you start talking to people the better.

“Don’t be in my situation; 27 years on and still suffering from it,” he said.

I find it inspiring that Nigel Owens has chosen to go public about his struggle against bulimia. I hope others agree.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Kate’s MS seizure video gets thousands of views

 

Kate, as pictured in the video.

 

 

 

 

 

 

 

 

 

 

 

 

 

Kate, as pictured in the video.

 

Although we have never met, I know Kate Langwine-Cooke to be a woman on a mission. She lives in Wrexham in North Wales, UK, and has MS but is determined not to let that stop her. She raised money for MS-UK and the MS Society through a physically exhausting 100km bicycle ride on a static bike, she works with young people and even coaches boxers as well as a football (soccer) team.

Added to that she campaigns on behalf of people who have ‘invisible illnesses’; after all, not all illnesses and disabilities are obvious. For example, many people have a great deal of pain manage to keep it hidden.

Kate’s symptoms are mainly hidden from public view, so it was somewhat of a surprise to see her post a graphic video on Facebook a few days ago. This was not one of her more traditional videos which many have described as inspirational; this was Kate having a seizure in all its terrifying detail.

When she turned on her trusty video recorder, her thoughts were purely on recording the seizure to show to her neurologist as she found it so difficult to describe. But then decided to use it on her Facebook page as well.

That video as since had thousands of views; in fact, 4,00 in just its first two days online.

Speaking to the Press, Kate said: “I put the camera to record because I felt my head beginning to shake in a sort of rocking motion which was an alarm bell after having been ‘ambulanced’ into ‘resus’ at the Maelor (Hospital) last Wednesday night.

“On Wednesday, I ended up semi-comatose following an attack of paralysing tremors which had lasted about 25 minutes. I was unconscious for a total of three hours, and when I momentarily did regain consciousness, I was completely paralysed from the neck down. It was terrifying.”

CT scans at the hospital showed the seizures were caused by brain damage due to multiple sclerosis. After returning home she suffered a further attack and tremors.

Kate said: “I cannot express how frightening it is not knowing if I will stay in that paralysed state for the rest of my life. MS is so unpredictable.

“The video I put to film as evidence for my neurologist at Walton Hospital, Liverpool, to see as it is very difficult to describe the attacks.

“I made the decision to post the video on my Invisible Illnesses Facebook page as part of my campaign to raise awareness of not only MS but the fact that a lot of horrendous conditions go unnoticed if a person is not in a wheelchair or using a walking aid.”

She said: “The video isn’t nice to look at, but I don’t mind sharing my life if it helps raise awareness of MS and its extremes.

“There has got to be a positive to come from all this. Four thousand views in two days is crazy,” she added.

 

To view Kate’s video, click this link: https://youtu.be/uMzE_ioUHno

MS: Symptoms vary and can be hidden from view

ms means_edited ms montage

Recently, I have been asked to explain what MS is – but that is really impossible apart from saying it is a neurological illness. I could talk about loss of parts of the myelin sheath but there are others far better qualified to do that. Let me be clear, I only know about MS because I have it; I live with it every day.

Multiple Sclerosis can be a cruel illness. It affects different people in different ways, no two people have exactly the same symptoms and just because you may know someone with MS, please don´t think you can know how another person is affected.

First of all, there are different types of MS – Relapsing Remitting, Primary Progressive and Secondary Progressive – then there are the many and varied parts of the body that can be affected and also the severity of the symptoms that someone with MS can experience.

ms strongAt the most serious end of the scale, I have met people who need carers to lift them in and out of bed and to take care of their personal needs and others who show no outward physical sign of the illness. They are the ones for whom MS is described as an invisible illness. They might, however, be affected by fatigue, incontinence or other symptoms that can be hidden for the most part.

There are also people with MS who experience cognitive problems and may need help both understanding and communicating.

I consider myself very fortunate indeed. Ok, so not very fortunate to have MS at all but very lucky to only be affected in relatively small ways. My two biggest problems are that I cannot walk more than 10-15 yards without needing to rest or sit down, nor can I stand for more than two minutes or so before sitting on the nearest available step, ledge or whatever. Wheelchairs are used when the need to walk or stand would be beyond my capabilities.

MS generally affects my left side, particularly my left leg, so that I can now only drive an automatic car as my left foot cannot operate a clutch pedal, and my left arm cannot be raised very high at all.

My brain, speech, hearing and sight seem, thankfully, to be unaffected and this blog helps keep me alert and mentally active. Yes, I sometimes can get fatigued if I overdo things – and by that I don’t mean tired but really fatigued – but I am so lucky to not be in constant pain like so many others are.

Yes, I can fall over easily; yes, it frustrates me; yes, I can get annoyed and event upset BUT I can also see the funny side. I often joke about the floor and I being good friends, I can see the funny side and cannot get up until I stop laughing.

ms not aloneIt’s good to laugh and to smile, it is good to be happy whatever life brings and that really is what is behind my positive outlook. There are all sorts of things I have done in my life that I can never do again but at least I have done them and don’t regret not having done so. Now, I look at what I can do and live my life to the full – or the fullest I can.

The past is for remembering the good times while forgetting the bad; the present is for doing what can be done; and the future is for anticipation and expectation, not for regret.

Is there anything else that I need? Yes, and I have it – the love and care of the one and only love of my life, my darling sweetheart, my beloved wife, Lisa.