Following on from my diagnosis of Relapsing Remitting MS in February 2016, I had to take medical retirement from my job as an English Teacher. Now, don’t get me wrong, although I missed it, medical retirement and no longer having to work was a big relief because I simply couldn’t work! My relapses had left me with various disabilities, including the loss of vision in my left eye, balance and walking problems, cognitive issues, and continued numbness in the left-hand side of my body, to name a few. However, this time also made me reconsider my life. Was this it? At the age of 42, was my life over? And what was controlling my life now – MS or me? I decided that I was in control of my own destiny, not my MS.
A longstanding dream and ambition my builder-husband and I always had was to build our own house. If I hadn’t had been diagnosed with MS, this probably would have remained a long-standing dream. However, one dull, miserable and over-cast day in February 2017, one year after my diagnosis, we viewed a potential building plot in Dorset, some 85 miles from our then home.
Immediately after viewing the property, and as we were driving away, I turned to my husband and said:
“This is one of those situations. If we don’t do it now, we never will.”
It was a sliding doors moment (remember the film?), on the one hand was us not building the house and life pretty much carrying on as it was, on the other was us building the land … and who knew what our future held? A bit like MS. We don’t really know what the future holds … but we do still have ambitions and dreams …
We went for it. We negotiated a price, put in the various planning applications, and started gathering building materials at the land ready to build. My husband did the clever things like digging in mains sewerage, trenches for mains gas, footings, and concreting. Meanwhile, I stayed at home, 85 miles away, sketching internal layouts for our new bungalow, browsing websites such as Pinterest for inspiration, looking at colour schemes and designing the kitchen and bathroom. Life was changing, and for the better!
On occasions I travelled down to Dorset to see how things were coming along. I no longer drove due to my eyesight and numbness, so my son took me. It was interesting to see the development of the project. We had a caravan there, and I stayed occasionally, more for moral support and to make tea and sandwiches, than to do anything helpful! Over the winter and into spring 2020, the footings and foundations went in, and we started to see a footprint of where various walls would be going. I had to wrap up warm as extremes of weather play havoc with my MS, and I’ll be honest, sitting in a caravan on a gloomy April day with the wind and rain howling outside isn’t my idea of fun. But the caravan had a static bed, was warm and dry, and I could rest as much as I needed (and did!).
As the build progressed and the weather brightened, I began to stay onsite more. This, however, led to its own challenges. I measure 6.5 on the EDSS scale and walk with the aid of two canes. Wearing lose fitting shoes such as ‘crocs’ or flip flops, a building site and uneven pathways are a recipe for trouble. On more than one occasion I fell on the rubble paths. My husband got used to climbing down off a ladder or trying to find me after hearing me shout out following these falls. Another time he was fitting a window frame in the porch. I was walking towards him, and it slipped and fell out of his hands. My legs gave way at the same time, and I found myself on the floor, amongst rubble and odd bits of wood, with our dogs running around me wondering what on earth I was doing on the floor. I was wondering this too!
By far the most spectacular fall I had was the day before we moved in. My husband and son had gone to our old house to pack up the last few bits and bring them back in a lorry we had hired. I decided to camp out at our new bungalow (we had no bed, but mattresses on the floor, as he was bringing the beds back). It seemed sensible and practical. We had four dogs, one cat, twelve chickens, and a tortoise. I would stay with the animals and keep out of the way; husband and son could get the heavy work done.
Unfortunately, things didn’t quite work out the way I’d intended.
After closing the chickens up for the night, I decided to take a short cut into the house and stepped up onto our patio, a step of approximately 3 feet. I was wearing my bad-luck-crocs. I sat on the edge, swung my legs round, and stood up. I don’t remember much after that until I woke up in hospital! Apparently, I had fallen and knocked myself unconscious. I had been using my canes, but obviously my legs had given way and I hit my head on the floor!
Bang! Out like a light!
Luckily, I managed to find my mobile phone and call for help. My daughter, living a few miles away, came over straight away and found me incoherent, sitting in the bedroom with all the doors open, dogs running around barking and the cat meowing! Thankfully, after a night in hospital and a CT scan, there was no long-lasting damage. But this was a big lesson for me, MS or not, I’m not invincible!
A year later, and settled in our bungalow, we can look back at my acrobatics and laugh! Life with MS is nothing, if not eventful.
I think the point of my moving stories are that, with or without MS, life moves on. Whether it be physically or emotionally. Over the past few years, I’ve realised we have a limited amount of control over our condition. But, even with MS and the individual challenges we all face, we still have a future, and its up to us to decide what we want to do with that future. You might not want to build a house, but aspirations and new ideas keep you looking forward and focussed on the now and the future. Take small steps. Just don’t wear crocs!
Hi, I’m Tracy. I was diagnosed with RRMS in February 2016 following an incident of optic neuritis in August 2015. However, I think my first CIS occurred in 2014. I’m married with 3 adult children. Since medically retiring I enjoy hobbies including studying, reading, crafting, gardening, and baking.