What matters most?

Barbara

Barbara was first diagnosed with multiple sclerosis (MS) over 40 years ago. It came as a great shock to her. At the time of her diagnosis, her daughter was 18 months old and her son was slightly older.

The doctor told her that as a diagnosis based on symptoms alone, she could either have a brain tumour or MS. Further tests and scans were needed and eventually a diagnosis of MS was given. Barbara was relieved that she didn’t have a brain tumour. “A brain tumour felt more final really to me, especially with two little children.” Despite her relief, she knew her life would not be the same again, she was a single mum with two small, very dependent children and now her whole world had changed, her dreams and plans no longer viable and the future unknown and scary.

As her condition progressed, she began to feel more frequently the effects of MS. “As time went by after my diagnosis, I had several times where I lost sight in my eye. It affected my balance nerve too. That was pretty horrible because I was now on my own with two little children. I could be so ill that I couldn’t stand up or get down the stairs, I was throwing up and the children helped me to get down the stairs. They were only around six and eight when this happened.”

Her MS has now become progressive, which means Barbara’s symptoms will get worse over time. Barbara does miss the things in life that she hasn’t been able to do, “The MS is just eating away at me slowly. It's not much fun. There was so much I wanted to do but I couldn't do it. I know. I'm lucky because I can walk short distances. But it really wasn't what I was planning.”

As a young mum, Barbara’s diagnosis and the departure of her two children’s father meant that she could not return to the nursing profession as she wanted to. After raising the children from a young age, Barbara went on to get a part-time job at a family-run business. This role was selected for being less stressful than nursing, as Barbara doesn’t react well to stress. Her whole nervous system can go into meltdown and it effects how she can function.

“At its best, my day with MS can be pretty average as it is to normal people. As long as I sleep, I’m often okay but I do get crucially fatigued. There are some mornings I wake up feeling really good and plan the day out with activities. It can get to mid-morning, and I’ll think ‘I can’t do this anymore’ so I’m used to that now. Some people don’t understand as they see me as a fit and healthy person which I am in essence, apart from my MS which can hugely affect things.”

“When I’m feeling really bad people often say, ‘I haven’t seen you in a while’. That’s because I haven’t been very well and I can’t get out. I feel incredibly lousy and can’t motivate myself to go out during these times, it is a huge effort just to do personal care, feeding and making a cup of tea.”

A medication bottle spills out it's contents

“At its best, my day with MS can be pretty average as it is to normal people. As long as I sleep, I’m often okay but I do get crucially fatigued. There are some mornings I wake up feeling really good and plan the day out with activities. It can get to mid-morning, and I’ll think ‘I can’t do this anymore’ so I’m used to that now. Some people don’t understand as they see me as a fit and healthy person which I am in essence, apart from my MS which can hugely affect things.”

“When I’m feeling really bad people often say, ‘I haven’t seen you in a while’. That’s because I haven’t been very well and I can’t get out. I feel incredibly lousy and can’t motivate myself to go out during these times, it is a huge effort just to do personal care, feeding and making a cup of tea.”

Sometimes Barbara can get a pins and needles type tingling all over her body. The feeling goes all the way down her spinal cord and radiates out into her hands and feet before spreading through her arms and legs to her whole body. When she gets stressed, this feeling can get more pronounced, Barbara says lying in bed with this sensation can be “like lying on a little electric current, it is horrible, it’s like my body never stops.” Despite once ending up in hospital not being able to stand and having to learn to walk again, she doesn’t let it get her down. “I am very stubborn I will not let anything get the better of me!”

“Because my multiple sclerosis has gone progressive there is no actual treatment that will do much for me. I take a tablet to try and help my fatigue which gets me through the morning. If I take two, I get nightmares, so I only take one. True fatigue is feeling like you can’t even lift your arms. Fatigue is every day of my life and at times I often just sit and watch the television, sometimes I cannot move my arm for the remote to change the channel. That is true fatigue. The tablets really do help me to get through the morning and then I often sail through the rest of the day with whatever I have left after that.”

Several years ago, she decided that when she passes away, she will donate her body to medical research. Recently she read an article about people donating their brains and spinal cords to the University College Hospital, London, where a department called Buzz is conducting research into MS.

Barbara has always had an interest in medicine and recognises this as an important research project. She believes enabling someone to make use of her brain and spinal cord after her death is a huge positive. She had to discuss her decision with her children who agreed that it was a great idea.

“I completed all the forms and sent them back and now carry a donor card. It didn’t take much thinking about to me because I always think once you're dead, you're dead. Your body is of no use to you but could make a mammoth difference to others. I want to help. What matters most to me is to help constructively and by donating whatever parts of me to research, so that it may help others to understand why MS happens. It's very important that when I die my brain and spinal cord can be used for research and ultimately helping others struggling with MS. I’d like it to not be too stressful for my children also. As long as everyone has a good party when I’m gone, I’ll be happy.”

Barbara would like to stay at home as she progresses towards the end of her years. She is in fine health apart from her MS and thinks she will have over 10 years of pottering around the home before things begin to change. She would be happy to put a stairlift into her house or have a shower fitted downstairs. Barbara continues to be an active member of the community and is hugely liked and respected locally. She doesn’t allow her MS to bring her down and when she feels lively enough to do so can be seen pottering around the garden or her local town with a smile on her face.

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MULTIPLE SCLEROSIS

Multiple sclerosis is a disease that can impact the brain, spinal cord and optic nerves. These make up the central nervous system and control everything that we do. The exact cause of multiple sclerosis is unknown, but it is known that something triggers the immune system to attack the central nervous system. The resulting damage disrupts signals to and from the brain. This interruption of communication signals causes symptoms such as numbness, tingling, memory problems, mood changes, fatigue, pain, blindness and/or paralysis. Each experience with multiple sclerosis is different and affects can be temporary or permanent.

To learn more about multiple sclerosis, click here.

Source: https://nationalmssociety.org

UNIVERSITY COLLEGE HOSPITAL, LONDON

Opened in 2005, the University College Hospital is a state-of-the-art facility that uses cutting edge technology. Services offered at University College Hospital include accident and emergency, cancer care, critical care, a hyper-acute stroke unit, endocrinology, general surgery, ophthalmology, general medicine, dermatology, general neurology, orthopaedics, rheumatology, paediatric & adolescents, and urology.

To learn more about University College Hospital, London, click here.

Source: https://uclh.nhs.uk

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MULTIPLE SCLEROSIS

UNIVERSITY COLLEGE HOSPITAL, LONDON