Natasha, who lives with MS, tells the MS Trust why she thinks the Advanced MS Champions programme is so important.
My MS has rapidly progressed, but if people saw me in my wheelchair, they would have no idea the struggles I face. I am now completely bladder and bowel incontinent. Simple tasks, like trying to transfer off my bed onto my wheelchair, is now absolutely exhausting and so difficult. I cannot sit up in bed by myself, so I have a special bed that rises me up. We are currently in the process of having hoists fitted in the bedroom and the bathroom to make life easier.
Sadly, patients, like me can get lost in the system that is why the Advanced MS Champion role is so important, to help those with advanced MS get the correct access to the help and support that themselves and their families need.
If I am honest my biggest fear for myself is that I will become a burden on people. Although my family do not feel this way, it is a personal fear that I have. When I married my husband, it was because we have an everlasting love, but I want him to always be my husband and not be forced into being a full-time carer. I want him to be there for me but first and foremost, be able to be my husband. I have seen the struggles that lots of families go through if their loved one has very advanced MS.
Sadly, patients, like me can get lost in the system that is why the Advanced MS Champion role is so important, to help those with advanced MS get the correct access to the help and support that themselves and their families need. Neither of my children are young carers because as a family we all do things to help each other as that is what families do. They are not carers; they help out of love. My live has got lots of challenges, however, and that's why families like mine need specialist support that can help them.
The MS Trust is amazing at supporting families whose lives are touched by MS. It is not only the person that has the disease that it affects, but it can also be everybody around them. Out of my two children my youngest son, London, who is now 13, has seen lots of things other young children do not. He has seen me fall onto the floor multiple times and be so exhausted my legs will not work to get back up. He has seen me devastated when I have had bladder and bowel accidents, but he understands that I cannot help being this way. He is such a gentle soul he will often sit with me or help me, and we have always had very honest conversations about why I am this way. This was where the MS Trust really helped us as they have specialised books for children to read and these books that were given to my children from the Trust in the early days to explain my illness were invaluable.
We have a very special bond, but we are both aware of what lies ahead for us for the future because I have such advanced MS. We know we are going to need a lot of support.
It has not always been easy for my children, Deon and London, as seeing what this disease does to me is not easy for adults let alone children. That is why being there for each other and talking is important. It is okay to sometimes cry, it's okay to sometimes be sad, it's okay to feel cross, but if you teach your children to share their thoughts, feelings and emotions with you or family around them it helps your family to all have a greater understanding together.
My husband, Marc, is the most incredible husband. he never judges me, and he never makes me feel like I am less of a woman. We have a very special bond, but we are both aware of what lies ahead for us for the future because I have such advanced MS. We know we are going to need a lot of support. That is why we are incredibly grateful that families like ours can turn to the MS Trust for advice and support. Please support the MS Trust's ‘Advanced MS Care' appeal to raise funding for more Advanced MS Champions to be rolled out across the UK to help families like mine have a specialist support network that they can turn to. Living life with MS certainly is not easy but life with MS is made easier when there is help and support out there that can be accessed.
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