Living with multiple sclerosis: ‘I’ve got to get on with it. I can’t let it defeat me’

Carly Houston who suffers from MS (c) Neela Debnath/The Independent

There are around 100,000 people in Britain who suffer from multiple sclerosis and Carly Houston is just one of them. On her 21st birthday she was diagnosed with the neurological condition, she talks to Neela Debnath about living with MS, working on the ‘Harry Potter’ films and her plans to pursue an acting career against the odds.

I meet Carly Houston at the Espresso Café at the National Theatre. Despite the overcast day she is very bubbly and radiates a positive glow as we chat. “In order to act it’s very much a waiting around game,” she says as she begins telling me how she discovered she had multiple sclerosis.

Just like any other aspiring actress Carly knows how difficult it is to get into the industry and is well aware that for a lot of the time she will be out of work, much like the majority of actors in the industry.

When she first set her sights on a professional acting career she planned to save money and started working at two shops. Despite the hectic schedule and still in full-time education she seemed to be managing. It was only when a customer complained, suggesting that she was drunk and challenging her to walk in a straight line that she realised something was wrong. Carly was struggling to walk across the room in a straight line, veering from side to side. Later on when her father picked her up she had seven falls within the space of two minutes. She was taken straight to hospital.

The birthday diagnosis
Unlike most young people her age, Carly spent her 21st birthday in hospital and was informed she had MS. She expresses her disappointment at the memory, “to be told that on your 21^st birthday is a hit in the face really”.

Diagnosis usually occurs between the ages of 20 and 40, affecting double the number of women than men. Diagnosing MS is complex because there is no single test that can diagnose it. However, over nine out of 10 people with the condition are diagnosed using an MRI scan which is how Carly learnt she had lesions on her brain – a sign of the condition.

MS is a neurological condition that affects the central nervous system which consists of the brain and spinal cord, this in turn controls the messages sent across the body along nerve fibres. The condition occurs when the coating around nerve fibres known as myelin is damaged and affects how the messages are sent.

Myelin is often compared to the insulation around electrical wire that makes sure an electrical current travels without any interference. Just like wire insulation, myelin insulates nerve fibres to ensure the messages get sent without any disruption, however MS causes damage to the myelin which can then have an impact on the body.

The condition varies in people and can affect mobility, speech, vision, memory and thinking, among other things. There are several types of MS, the most common is Relapsing remitting MS which affect the majority of people diagnosed, where symptoms appear after a sudden attack knows as a relapse and then fade away, either partially or completely.

This can be followed up Secondary progressive MS where there is a continuous build-up of disability, completely without any relapses. Finally, there is Primary progressive MS which only affects around 10 to 15 per cent of those diagnosed whereby the symptoms gradually get worse over time instead of happening in sudden relapses. The causes of MS are unclear and there is currently no cure for MS but there are drugs to deal with the symptoms.

Living with MS
Carly suffers from relapse remitting and unfortunately she is entering secondary progressive. Last year she had some severe relapses, “I couldn’t talk. I was choking on my drinks”.

“I was crying myself to sleep sometimes. It’s just being grateful for what you do have. If I could work, don’t get me wrong, I would but I think going back to retail, going back to the office is just too much because of what MS does and what it is. Everyone’s different but what it did to me, I can’t see myself ever going back to retail.”

Carly’s relapses have got worse and have increased in frequency, triggered by heat and stress. She has had to use a stick for the past three years to help her walk.

“It varies from day-to-day, from week-to-week, minute-to-minute. I could sit there and go ‘it’s a really good day today’ and then fall down the steps. I fall over a minimum of four times in one day. It does get annoying, it does get quite upsetting at times but I have to try and keep happy because with MS everybody’s different.”

Working on the Harry Potter films
When Carly was around 14 she was cast as an extra in Harry Potter and Prisoner of Azkaban, she also starred in the fourth film Harry Potter and the Goblet of Fire. She started off as part of the crowd and as time went on she was moved closer to the front of the scene and closer to the camera.

“I’ve got a piece of wood with my name on it. It was the happiest day of my life at the time,” she says, referring to the moment she was given a mark with her name on it to tell her where to stand during filming. Although her character was unnamed, she found herself playing both a member of Hufflepuff and Gryffindor respectively. She says that one of the most memorable moments while working on Harry Potter was pretending to confront a creature known as a Boggart which turns into a person’s worst fear. It can only be overcome when a person views as a source of humour and say the word ‘Riddikulus’.

Looking back on her time on her time working on the films she speaks glowingly of the experience: “that was an awful lot of fun. I loved it. I really did love it”. However, she also realises that she probably had MS then, “some extras took the mickey out of me at the time as well. ‘Why are you always walking to the left for? Can’t you walk in a straight line?’ I just ignored it thinking nothing of it until it got diagnosed. It makes a lot of sense now”. She’s no longer an extra and she is pragmatic about progressing in her career.

Looking forward to the future
Carly is like any other young actress and tells me she’s busy auditioning. Has she got any role models? “I did but then I sat there and I thought: ‘well, how many of them can I claim to be like?’ Not one of them is in the situation that I’m in now. I don’t know any famous actor or actress that’s ever been where I am now. So who can I look up to? I’m going to have to look up to myself. Yes, it sounds a little bit big-headed but I’m going to have to because who else is there?”

Throughout the interview she smiles and she is determined to succeed. She has come to terms with it and instead of letting MS control her life she will keep on going.

“No two days are the same. No two days am I fully functioning and I’m fully okay to do something and it is annoying but I’ve got to get on with it. I can’t let it defeat me. I try to be very positive because there’s no point sitting there: “oh, my life sucks”, course it does but it’s not going to get any better if you carry on thinking that is it? You’ve got to get up and try and do something. I’m still trying now. Don’t get me wrong, it’s difficult.”

Carly refuses to let her condition stop her from pursuing her dreams which is inspirational given that acting is a physical craft that relies completely on the body. When we end the interview I am left with an overwhelming sense of positivity, despite it all she plans to keep going and I believe she will.

For more information about MS visit www.mssociety.org.uk

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• Guest

  Thank you so much

• Guest

  Thank you all so much

• Sirius

  There is some compelling evidence that MS can be induced by parasitic infections which attack the nerve cells, like Borreliosis (also known as Lyme disease, transmitted through tick bites) and Chlamydophila pneumoniae. Worth considering the Wheldon protocol (http://www.davidwheldon.co.uk/ms-treatment.html). Good luck.

• L Smith

  I wish there were more stories like this about MS. A lot of the societies as well as those who suffer from the disease tend to focus on all that has been taken away. And even when a positive outlook like this emerges, people still tend to give out and say that this perspective isn’t typical of all MS patients. Who cares, there will never be a “typical” person with MS so why not focus on something more optimistic for a while instead? I know it varies, it’s one of the most unpredictable diseases out there, but a little more focus on what people can do in spite of this wouldn’t hurt anyone.

• VicTheBrit

  MS is one of those “secret” illnesses that we know of but know little about.

• Michael Ernest Corby

  Great that she is trying.

  There are many other illnesses which curtail life unexpectedly. Fibromyalgia to name but one. It has not received public attention but it can be totally debilitating. then there si ME. Both have had their existence denied, but are very real to the sufferers.

• ChinMullet

  Carly – keep your chin up, and stay strong. Focus on the good things in life – love, family, friends, fun. Stay active. Someday, good treatments will be determined, and when they do, you’ll want your body in the best remaining condition. Above all else, retain your dignity by being proud of your own resolve. May your god bless you, and may the world be kind to you.

• silvermaran

  MS is Neuroborreliosis. Lyme. You only need ONE band on Western Blot to say pos. per China or a pos. spect scan. But it is a clinical diagnosis and also the cause of Autism and Diabetes neuropathy. They have known for over 20yrs. MS was multiple infections but refused to treat to protect profits. But NO MORE—-The worlds leading researchers are all getting on board the truth train to treat the masses and STOP infecting them in the first place with infectious vaccines that add to the viral/fungal/prion synergy spirochetes possess.
  Investigation
  of the mechanism of PrP(Sc) transmission between cells represents an
  important step towards understanding the pathogenesis of prion diseases.
  http://www.ncbi.nlm.nih.gov/pubmed/23246505
  http://www.rndsystems.com/cb_detail_objectname_FA04_CommittedBCellMacrophage.aspx
  Further
  supporting this notion, a recent study by Xie et al. provides strong
  evidence that B cell progenitors, and even some mature B cells,
  can be induced to adopt the gene expression patterns,
  morphology, and
  functional activities of macrophages.
  Prion is nothing more that stealth pathogens that share their genes. No One had to die of lies of HIV or a syndrome of unknown origin in failures to treat to protect profits. Shame is upon MSM for Committing Crimes Against Humanity if massive failures.

• http://www.facebook.com/ImNinaLee Nina Martin

  God bless you Carly, never loose heart!

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