Another year is drawing to a close and, as often happens at this time of year, I reflect on the last 12 months. Time is precious, but having MND has stopped me looking too far ahead and has given me the opportunity to really focus on the present. I still feel lucky to be here almost three years post diagnosis. I wasn’t able to look ahead from 2023 to the year ahead as I didn’t expect to be here. I started 2024 being hopeful that I would be able to live another year, and all being well, I will be entering 2025 still as hopeful.
You see, despite living with a terminal illness, I have sadly experienced the loss of loved ones whilst facing my own mortality. I do not take for granted that tomorrow is a given. Growing old is not a privilege that everyone will experience. The days and weeks of 2024 have got harder as the disease progresses, but it hasn’t affected my mental ability. If anything, my mind has never been as sharp as it is now. I have learned many valuable lessons in 2024, some of which:
Trust your instincts
Nobody knows you better than yourself. Learn to trust your instincts.
Disability does not mean incapable
This has been a valuable lesson to learn. I have been treated differently because of my disability. Yes, there are things I cannot do, but my disability means I do lots differently. I wish those assumptions weren’t made. You’d be surprised at what I can do and how I do it!
Happiness is a choice
I truly believe having a positive and happy mindset has helped me immensely in how I live with MND. I have a choice every day about how I approach life and being positive (and also allowing myself to have down days) keeps me going.
Make peace with your past
The last 2 years have seen me regaining contact with others I have lost contact with and that has meant a lot. I’ve also moved on with people where we had previously parted ways. Allowing forgiveness and kindness has meant a great deal.
Plan your final wishes
I urge you all to take time to document your final wishes and to make sure that it is shared with someone. None of us know when our final moment will come, so give yourself and your loved ones the comfort of knowing your final wishes have been shared. It will alleviate some stress at an already difficult time.
Parenting has been equally rewarding but has brought its own challenges. Little Man has really come into his own over the last year, and he has continued to settle down well after lots of changes throughout the last few years. Last year felt rather rocky, but 2024 has seen him settle and grow. There have been many positives and his confidence has given him the self-belief to accomplish his own achievements. We have also had many questions about his life before coming home and adoption. This, coupled with traveling on the pathway through illness and grief, leads us to seek professional support through the Adoption Support Fund. 2025 will see us navigating this path, ensuring we are fully supported in uncharted territory.
What are our plans for 2025? Firstly, after a 12-month wait, our wetroom will finally be adapted to my needs. We are still waiting for the rear level access to be sorted but hope we are on the final hurdle before work is scheduled.
I am still working full-time and there remains a question as to how long that will remain that way. My intention is to work for as long as my body will allow, which may mean a reduction in hours or days, but I will see how I go. As far as everything else, we take each day at a time. I don’t often like looking back as it shows me what I have lost and what is yet to come. MND can feel like a continual journey of grief as there is a continual loss. However, I have learned that I must allow myself to grieve before shifting my vision to living in the present, which is much harder than you would imagine! My bucket list has continued throughout 2024, and I continue to make some tweaks and adjustments.
2025 will see me tick off more from the list. Will 2025 see me complete the list? Who knows! Thanks as always for your time, support and love this year. I appreciate it and look forward to seeing you in 2025.
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