25 April 2019
Usually, the people we speak to are living with one health condition, such as Richard with COPD, Lizzy who has Charcot-Marie-Tooth disease, and Adam who had a stroke when he was just 29.
This MS awareness week, we spoke to Elaine Moore, a 66-year-old woman from Leicestershire who was diagnosed with multiple sclerosis almost 30 years ago, and who also has hereditary kidney disease and diabetes.
Elaine enjoyed a long and successful finance career, which saw her writing a book, lecturing on the QEII and becoming the first female director at the world’s largest insurance broker and risk management company, before being advised to stop working for the benefit of her health. Elaine now writes a witty and honest blog about her experiences of ill health and being a wheelchair user for 20 years. She is married to John, who became her full time carer some time ago. Elaine’s sense of humour and positive attitude towards her health and disability really struck a chord with us, and we were thrilled that she agreed to tell us all about her experiences of living with multiple sclerosis, as well as her other conditions.
Multiple sclerosis is a condition that affects the brain and spinal cord, caused by damage to the myelin sheath that coats and protects the body’s nerves, resulting in disruption to the messages that travel around the nervous system.
People experience multiple sclerosis in lots of different ways and, as such, the symptoms are often varied, differing from person to person. This being said, the most common, early symptoms often include strange feelings in the skin, speech problems, slowed thinking, or difficulties with balance and coordination. Elaine developed some of these symptoms initially, but had no idea of the diagnosis she was facing.
“My life was so good. When two of my fingers went numb at the end of 1990 who could have predicted what would happen next? I ignored the numbness but a few weeks later I suddenly found I couldn't hold a pen. Again, I ignored it. In April 1991 I tried to speak and all that came out was a slur - distressing but it only happened once, so I ignored it. Eventually I went to my doctor, who referred me to a neurologist.”
Multiple sclerosis can be difficult to diagnose, as there is no singular test that can be undertaken to confirm the presence of the condition. The most often used test today, and even back when Elaine was diagnosed in the nineties, is an MRI (Magnetic Resonance Imaging) scan which looks for damage to the myelin sheath in the brain and spinal cord. Elaine remembers her diagnosis like it was yesterday and, as if this shocking diagnosis was not enough, she was left to deal with the condition alone, with no offer of support or treatment.
“My results appointment was on July 17th 1991. There was still part of me that hoped this would all turn out to be a big mistake. The neurologist straight out told me I had multiple sclerosis. He said the MS might not develop further and, in the nicest possible way, hoped he would never see me again. If it did develop, get on with it!”
Multiple sclerosis is still not curable, but knowledge of the disease and what happens to the body has improved over the years and, nowadays, there is much better support available. Patients are looked after by a team of MS specialists, and have the option of seeking advice from a variety of multiple sclerosis charities and support groups. There are now more treatment options for multiple sclerosis and, depending on the type of multiple sclerosis a person has, these can sometimes slow the disease, or at least reduce the impact of their symptoms to help improve quality of life. Over the years, Elaine has been made more aware of the drugs that are available to help ease her symptoms.
“Sadly, my diagnosis was too early for me to have any of the disease modifying drugs available today. I was prescribed mega doses of steroids during relapses and I take medication for separate symptoms such as balance and leg spasms. I am now in the secondary progressive phase of multiple sclerosis. With the occasional relapse.”
Elaine kept her diagnosis quiet for a short while, until her symptoms worsened and she had no choice but to share it with others.
“Initially I had no visible symptoms of multiple sclerosis, or a wish to burden everyone around me, so John and I decided not to tell anyone except close friends and family. Not surprisingly, nobody knew how to react. After all, what can you say? None of us understood what multiple sclerosis was and I still looked the same. When my legs started to act strangely and I had my first relapse, we knew we had to tell everyone.
“So now I had the double problem of having increasing mobility problems and facing the reaction when I explained I had multiple sclerosis to everyone we knew, personal and work-related. It was very hard. Most people just said they were sorry but several became tearful, whereupon it was me who had to take on the role of comforter.”
Back when Elaine was diagnosed, there was much less awareness of multiple sclerosis compared to now, and few people even knew what the condition was except, perhaps, that it was serious. Elaine is not at all critical of the reactions from her personal network, despite few knowing ‘the right thing’ to say, and appreciates they felt the same shock and anxiety about her diagnosis as she felt.
“People don’t know how to react when confronted by someone who is diagnosed and then has to live with a chronic illness such as multiple sclerosis. How can they? Few people understand what it is or what it can do. You can’t say ‘I hope you feel better soon’ (although people do) as that isn’t going to happen. You can say ‘is there anything I can do?’ which is nice but probably there isn’t. The best reaction is just to admit you don’t understand the illness but you’re ‘there for you and John when you need us’.”
Elaine had relapsing – remitting multiple slerosis for several years, meaning she had periods where her symptoms reduced or remained steady, followed by ‘attacks’ which brought increased severity, new symptoms or decreased mobility. Had disease modifying drugs been developed earlier, Elaine’s MS may have developed more slowly or ensured she kept her mobility for longer. Instead, like many people with multiple sclerosis, she needed mobility aids after only a few years of being diagnosed.
“I had to take considerable time off from work when I was ‘relapsing' and returned to work when I was ‘remitting'. This became the pattern for several years. But my legs were failing. About a year after diagnosis I started using a walking stick. Within three years I was using a wheelchair for longer distances and within five I had become a permanent wheelchair user.
“I had a deal with my boss that the multiple sclerosis wouldn’t get mentioned unless it was affecting my work. One day he called me into his office and said it had ‘come to his notice’ (don’t you just love that?) that I could no longer have a drink (I’m talking tea, not tequilas) as I couldn’t walk to the toilet. Sadly, all true. He knew I had a wheelchair so suggested I start using it at work. A difficult day for all concerned.”
Elaine went on to tell us some of the inappropriate comments that were made after her workplace installed equipment such as automatic doors, to enable her to access the building, such as that from the HR director, who claimed the business had only made the changes due to her seniority at the firm, suggesting if she had held a lower level position she would have had to make do or leave. Current legislation such as the Equality Act 2010 protects employees from this type of discrimination and harassment, and employers are legally obliged to make reasonable adjustments to enable employees with disabilities to do their jobs. Despite encountering issues like these whilst she was working, Elaine admits that giving up her career because of her multiple sclerosis was devastating for her.
“I had acknowledged to myself that I wouldn’t be able to work until retirement age but I had always thought I would be the one to make the decision to stop, not the multiple sclerosis. I sulked for a year!”
Elaine was no stranger to health problems, even before her multiple sclerosis diagnosis. At 23, she found she had inherited a genetic form of chronic kidney disease, which both her mother, aunt and grandmother had died from in their late fifties/early sixties. At the time of her diagnosis, she was encouraged to ensure she would not pass the disease on and was sterilised, meaning she could no longer have children. All this resulted in her first marriage breaking down, throwing herself into her career progression and focusing on succeeding in the business world, but along the way, she met the love of her life – John.
“I struggled with the diagnosis and the no-family outcome, then my first husband (now known as ‘The Mistake’) left me as he didn’t want to be responsible for looking after a sick person; a later gentleman friend said he wouldn’t marry me as I couldn’t have children. Thank goodness for John who has been with me through thick and thin since 1980. As we couldn’t have a family he encouraged and supported me in my career. How ironic that this came to an abrupt end when multiple sclerosis got in on the act.”
As time went by, eventually Elaine was tackling multiple sclerosis as well as her renal condition, and life-changing transplant surgery additionally led to her developing diabetes.
“My kidneys stuttered on until 2007 when it was agreed I needed dialysis. I settled to life dependent on a machine, with a very restricted diet (me, not the machine). And I waited for a kidney. I was on the National Transplant List. But if someone had to die in order for me to live, how did I feel about that? Troubling thoughts.
“John put himself forward as a donor but wasn’t the right blood group. Then a very special friend offered me one of her kidneys. Literally, the gift of life. Live donors are very much in the minority and are normally to partners or family members. It’s extremely rare for a transplant to be between friends. That was over ten years ago and my kidney is still performing well. I know I have an extraordinary friend and I know I am extremely lucky.
“Of course, if an organ is moved from one person to another, the recipient’s body will try and reject it as a ‘foreign body’. To counteract this, I take anti-rejection drugs that suppress my body’s immune system to a level where it is happy for the kidney to remain. It’s also quite common for these drugs to cause diabetes and, yes, I signed up for that too. Definitely an optional extra.”
Elaine has used a wheelchair for over two decades, so we were interested to discover what living with a disability and multiple sclerosis symptoms is like for her day-to-day, what daily living aids she uses to help her, and what frustrations arise as she attempts to get around in an able-bodied person’s world. It’s important to mention that not everyone with multiple sclerosis will lose their mobility or need to use a wheelchair. The condition affects everybody differently, depending on the type of multiple sclerosis they have, and how the disease progresses for them.
“My day starts with me waking up and using a device tucked into my bed to help me turn over and lift myself up. My wheelchair is always present to transfer into, with its special cushion to avoid pressure sores. We have a wetroom with a drop down seat in the shower and grab handles everywhere! John helps me into and out of the shower, does the towel drying bit and helps me to dress.
“Early morning tea (without which I cannot survive) comes to me in a two-handled mug. (I have several to get me through the day.) I have special gloves to self-propel the wheelchair (they’re actually cycle gloves as all the specialist gloves are too big). If I later move into a comfy armchair to ‘slob out’ John drops me in, not literally, and pulls me out. We also have the facility for John to electrify my chair by changing the wheels and adding a battery and controller.”
Daily living aids are therefore important to Elaine, making activities and actions that able-bodied people generally take for granted (e.g. getting out of bed, drinking tea) easier for her. Elaine described examples of how being a wheelchair user creates everyday challenges in doing the things she enjoys, and how a disabled-unfriendly society can make it harder to navigate.
“There are several elements to my frustrations and limitations of being in a wheelchair. The first is having no independence. At all. I can’t go out unless someone takes me, someone who can dismantle the wheelchair (in and out of their car) and is happy pushing me over the varied and sometimes impractical pavements (potholes and steep kerbs spring to mind).
“John and I have a very active social life (after all, what is retirement for?) but we are restricted to which friends we can visit at home, due to lack of access and no downstairs loo. The only friends who do have suitable toilet facilities have added a grab rail, just for me.
“Further afield we always have to check wheelchair facilities are available, specifically that what is said is actually reflected in reality - a hotel receptionist’s idea of what constitutes ‘accessible’ frequently differs from mine. It annoys me that most websites for hotels and restaurants don’t have access information on their websites. There are accessible venues but you have to look harder for them and there is always the extra time for research and phone calls to be factored in before we can book anywhere. Our travel motto is ‘plan, plan and plan again’. Such difficulties range from a leading seafront hotel who told me ‘we don’t cater for the disabled’ to an airline who booked John in as my caring dog!”
We’ve explored before the experiences of a family carer supporting their partner through multiple sclerosis and so we asked Elaine to tell us more about her beloved husband John, who provides all aspects of care for her, and found she has the utmost respect and gratitude to him for his essential role.
“Let’s face it, John didn’t marry me all those years ago to become my carer (although I did warn him about the threat of renal failure). He gave up his own career and evolved into the role. He has taken on elements of my personal care without blinking, he is my transport service and he helps me with the unseen symptoms such as fatigue and stress. He has also taken on all the household and cooking duties and is my Deputy Medication Manager (I take about 40 tablets a day).
“John has seen me through the deterioration of the multiple sclerosis, the years of various surgeries, kidney failure, dialysis, transplant and the resulting diabetes, plus lots of other health issues along the way. And I know something else too – he will always be there for me, whatever happens in the future, and I know I’m very lucky.”
Elaine and John sound as though they are strong enough to cope with whatever life throws at them, and it seems John shares her ‘come what may’ attitude towards her multiple sclerosis and other health conditions.
“Perhaps our approach is best explained when I tried to stand up in the early years and couldn’t step forward. John and I looked at each other and mentally decided how to deal with it. We were scared of what it could mean but we did the only thing that we could do - we laughed. To treat something so serious with humour was a pivotal moment and we have stuck to that policy ever since, albeit the humour is sometimes a deeper shade of black.”
We asked Elaine if she had any advice for other people living with multiple sclerosis.
“I can’t advise other people on how to live with multiple sclerosis or any other chronic illness. We are all different. Indeed, it is often said that if you lined up 1,000 people with MS they would each tell you a different story. Everyone finds their own way of coping. For me, it’s taking each day at a time and every morning assessing whether I can do what I’ve arranged for that day. Friends understand if stuff gets cancelled at the last minute. John has the unenviable task of having to work out if I’m having a bad start to the day or if we need to cancel everything.”
Elaine summed up our interview by highlighting her positive attitude to her health conditions.
“As for the future, I have no idea what’s going to happen. After all, my medical journey has not exactly been a straight road. Then again, these health issues might be in my life but they don’t own my life. I do. And whatever happens, I try to keep smiling.”
We are extremely grateful to Elaine for taking the time to answer our questions. Read more about Elaine’s life with John in her entertaining Wheel Life blog.
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