I often think about 9th November 2020. I don’t think about it as a particularly beautiful day, but I do think of it as the last day that I felt ‘normal’. I was in Robe and went for a walk. I walked along the foreshore, along the path that caps the foreshore. A very beautiful spot. I stopped and looked at the ocean and contemplated just for a moment if I would go for a walk along the beach and feel the sand between my toes. I decided not to and have only a short walk that day. I regret that now.
That was the last day that my legs and lower half of my body weren’t numb.
On 11th November I woke up and my world changed. I was numb from the waist down. A bit like when you sit on your foot too long and it feels tingly and numb – well that is my new norm. A norm that has now been my reality for 8 months. It’s been quite a journey. After a very long 6 months I was finally diagnosed with MS. It was a bit like the floor fell away and I was left naked, vulnerable, and alone. My feet feel like I am walking on a half tennis ball, it’s a horrible feeling and there is no relief.
There are days that I put on my big girl pants and say, ‘well it is what it is let’s get on with it’ and there are other days I cry all day. Today was my cry day. I went down the side street where no one could see me, far from my children, and howled. I yelled ‘its not fucken fair’ ‘What am I going to do if I am never alright again’. It’s the only way I can offload all my feelings. I want to ring my mum, but I also think that’s selfish because it affects her too. For a moment I think of lifeline again, but I stop myself. I might feel better with a cry and yell. FYI it didn’t make me feel better but writing this is.
Some things that have happened on the MS journey that have sucked have been:
· People telling me terrible stories about a friend they know who……and its usually a terrible ending.
· People not understanding that this is a disability that is intensely hard to cope with (especially in the beginning) and having them believe that you can ‘just do it’. Hidden disabilities are hard and suck big time because people forget especially if you are strong and hide it well.
· People who ignore it and don’t reach out to say, ‘I’m thinking of you’. That sucks big time.
· Not being able to walk, eating my feelings and putting on 10kgs.
· Watching a TV show and the person saying ‘I have MS’ and then wheeling themselves away from their desk. (This is specific I know but that just happened as I watched ‘Atypical’ and it’s the cause of my new bad day).
The things that have helped are:
· My family and friends who have rallied around me, even popping over and doing all my gardening.
· The MS Australia nurses who have listened as I have cried so many times; they have given me hope. Also, Lifeline because they are also awesome and lend a very big helping hand and long needed shoulder to cry on.
· My mum (fullstop no more to say she is my rock)
· My t-shirt that says MS, Love, Cure – its kind of my security blanket and a reminder to others that I have MS (lol)
Today I am having a down day. What does a down day look like well its dark and full of hopelessness. You see each day for 8 months I have woken up hoping that today will be the day my legs are not numb anymore or that I may ‘feel’ it changing in some small way. Today my legs feel worse. My feet are so uncomfortable that walking is annoying and hard work. I washed my car, and it took it out of me. I cried for an hour. I feel like an old lady. My children use humour and say, ‘here she comes hobbling down the hall’, its funny but its so not funny. I am shattered, my life might never be the same as it was on the 9th November 2020. I might not be able to take long walks anymore, I might not be able to take short walks anymore. It’s a kind of panic. I feel raw.
Then tomorrow (or the next day or the next) will come and I will wake up with a new sense of hope. I will push through this. I will change my life to fit my new norm. I will do something about my weight. Tomorrow might very well be full of vigor, self-assurance, and optimism.
What I want to highlight to anyone who is going through a diagnosis of MS is that you are not alone. You have your own journey, and it will be very different from mine or anyone else’s but you are not alone. You will weed out friends who are ignorant and silly. You will bond with others more and more. You will find a purpose even if it takes time. I also want you to give yourself permission to drive down the side street and yell and scream. Let it out – if that is the only thing that you do for your self-care you are a winner. The harsh truth is that we have no choice, it is what it is, finding our way through the dark times is paramount. Don’t do this alone reach out and use all the resources around you. I am sorry that you are going through it, but together we are strong and MS warriors (oh boy that’s corny sorry forgive me).