Living with Multiple Sclerosis: The story of my mum

‘To the world you are a mother, but to your family, you are the world’

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3rd March 2014 mum had us all frantic after being rushed to hospital after losing sensation in the left side of her body, dangerously high blood pressure and intense headaches, all causing her to have dizziness and slurred speech. Mum was either crying in pain with her head between her knees or trying to communicate with us without stuttering.

Mum was emitted onto the stroke unit for a suspected mini stroke. She was sent for an emergency CAT scan to find out the damage the stroke had caused. The doctors explained that the CAT scan showed lesions on the brain. Lesions on the brain refers to any type of abnormal tissue in or on the brain tissue. The doctors were unsure on the cause of the lesions so she was sent for an emergency MRI scan for more answers.

Months later, 1st August 2014 to be exact, is a day I will never forget, it was the day my mum was diagnosed with the dreaded relapsing remitting Multiple Sclerosis (RRMS). We were heartbroken. As, for my mum, she was distraught. Absolutely broken inside. She thought her life was over. We had been living up North for 6 years by this point and she loved it but, after the diagnosis all she wanted to do was run as far away as possible. She didn’t want to live here anymore. She didn’t want to be near a hospital that had given her such terrifying and devastating news. So she moved away, my mum and sister moved back down South. I missed her like crazy. I just wanted her close to us so we could support her but when my mum’s heart is set on something, she will do it. We saw her all the time though. If we weren’t visiting her, she would be up North visiting us.

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It didn’t take long. Just under a year later, she told us she felt lonely down South on her own and she was moving back home where she belonged. There was something different about her. That smile and positivity that we all know and love was back. She didn’t lose strength by choosing to live closer to family. That decision made her strong. In fact, the strongest women that I had ever met. She made us all proud. She began to accept that a person can still be strong even if they do need a little helping hand from time to time. Having her family around became everything to her. Her family has always been the most important thing to her but we needed her just as much as she needed us.

Walking into a local café with my mum was a massive achievement shortly after her diagnosis. I was so proud of her. She brought the tray of drinks over to us. On the way over, she walked into a table and her hand was shaking, so I got up and helped her. Two old women were shouting “it’s not the place to bring a drunk woman”. I was absolutely disgusted that people could be so rude. I even remember attending a theatre show with my mum once. That particular day, she was very unwell, so she used the disabled toilets as she was very off balance. Some woman in a wheelchair turned around and said “these are the disabled toilets, the normal women’s are up the stairs”. I mean how rude. Just because she isn’t in a wheelchair does not mean she doesn’t have a disability. There are many struggles that my mum faces daily as it is without rude people knocking her confidence. We need to support one another not knock people down. Stop judging.

My mum has suffered with almost all the symptoms of MS. She’s had optical neuritis, fatigue, numbness and tingling, muscle spasms, stiffness and weakness, mobility problems, problems with thinking, learning and planning, anxiety, bladder problems, bowel problems and speech and swallowing difficulties. Some days are worse than others. Every day is different. MS is unpredictable. My mum always says the key to good health is happiness and positivity. And that she is.

My mum even now attends an MS society and has joined many MS online groups. We never thought she would join anything like these so that’s an achievement in its self. She was sceptical at first but she will now openly admit how much they help. She said that she no longer feels alone and there are many people she can speak of all different ages going through MS just like herself. None of our family fully understand MS, but we are all willing to learn. My mum is learning what it is like living with MS. The rest of us, we are learning how to live with a relative with MS. Like I said, MS is unpredictable and we have to take each day as it comes.

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I’m not going to sit here and tell you it’s a walk in the park. It’s far from it. Every day is a learning day. But, my mum’s confidence just improves day after day. Of course, she has many knocks along the way but she just overcomes everything that she is faced with. She is the best nanny to my little boy and the best mother to the four of us. She is our inspiration. The best mum we could have wished for.

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All my love,

Sophie xx

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17 thoughts on “Living with Multiple Sclerosis: The story of my mum

  1. It’s great that she started to accept herself the way she is. It’s even better that she has you there, her family. Hope she’ll get well in time.
    Wish you all the best 🙂

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  2. I have had RRms for 13 years I am a 47 year old mum of two , what happened to your mum was very similar to me , however I just wanted to say what lovely words to write about mum she must be very proud of you .All the best Rachel

    Liked by 1 person

  3. What a lovely piece about living with a someone with MS. As Warriors we are all different and yet we are all the same and Tracey’s story on many ways is like mine. Having just ‘met her’ online today via an MS group, I think we established that and like your mum, I too did not get involved with any groups until very recently when I acknowledged I could not remain in denial but that I was part of one big family.
    Sadly my own family don’t understand and thus hurts me immensely. I have a 19 year old son who has lived with his father since our divorce and never knew me as a sick woman, when he comes to live with me (out of uni term time) next month, I think it’s going to be a shock and I still worry that he won’t understand….I hope I’m wrong?!
    It means so much when you get the right kind of emotional support to say nothing if the physical support especially with regard to chronic fatigue when ‘stubborn ‘ just doesn’t cut it!! After all that’s what families are for isn’t it. The hardest part of being a warrior is the ‘guilt’ you feel for being a burden to others, when all we want to do is stay strong 💪 and get on with our lives as best we can.
    Thank you for the piece Sophie, you have a wonderful mum, but I know you know that and she has a wonderful daughter.

    Helena xx

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    1. “The hardest part of being a warrior is the ‘guilt’ you feel for being a burden to others, when all we want to do is stay strong 💪 and get on with our lives as best we can.” So true. I hope all goes better than you can even imagine when your son comes home. Perhaps he has matured as most people do in university. Best to you.

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  4. It’s always amazes me that people, strangers, think they have the right to pass judgment -and vocalize it!- Your mom is strong and will overcome this, I hope for all the best for you family 🙂

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  5. Your family is lovely. I’m so happy for you all that your mother decided to move back near her family. Such support if priceless. And about those thoughtless, rude people out in the world, I always try to tell myself that it’s not about me/you, it’s about something else in their life that makes them unhappy, and they pass that unhappiness along. I hope you can fight the urge to take it and internalize it. Several in our family and friends have disabilities, some visible, some not. Sometimes I wish we had on neon signs we could flash at such people explaining, “I have MS” or “I have congestive heart failure” or “I can’t walk well because I have ALS” or “I can’t speak well because I have speech aphasia from a stroke, so I’m neither loopy nor stupid nor drunk.” I often wish I had such a neon sign I could turn on in my car also. “Get off your phone and drive.” But that’s another blog post isn’t it. Blessings to you all. Especially for your mom and her bravery in allowing people the gift of helping her. It truly is a gift when people allow us to help them.

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    1. What a lovely comment. It certainly would be much easier if we had on neon signs that we could flash at such people so we do not get judged. Yet again, we shouldn’t have to because people should not judge people anyway. But, I suppose that’s just life. Thank you so much, she is truly amazing X

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  6. Thank you for deciding to follow my blog Bobbing Around.
    Your mum has discovered the secret of contentment. That’s why she is now strong, and there for her family as much as you are there for her.
    Tell her I am sending her a hug.
    🙂
    Bob

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  7. Thank you for sharing. I can relate to this so much, I felt like it was the end of my life when I was diagnosed with MS. I had my dream job, living in my dream city. I had to give that all up because of MS, but things got better, and just like your mum, I became strong. I wish you all the the best, and I know she will continue to go from strength to strength.

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  8. Such an incredibly moving piece – just shows how out of touch some people can be to those within the disabled community (as well as the wide range of disabilities that make up a wide spectrum). Your mother is so brave! i’m currently working on a project in Sydney on improving disabled toilets, and i would love to learn more about your mum’s first-hand experiences as a person living with MS. Don’t be afraid to send me a message, i’d love to learn more so i can improve my own campaign! Thanks 🙂

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  9. Such a well written and thought-provoking story! your mum is an incredibly brave woman. I was shocked to read about how she was treated when she needed to use disabled facilities, and it speaks close to my heart as my mum also has MS – people can be so unbelievably rude! I’m currently working on a project that plans to improve disabled facilities in Sydney and would love to get in touch, just to learn more and more about your experience and improve my own organisation (to help those who need it). Don’t be afraid to send a message, thank you!

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