Moving Home With MS [Part One]

I’ve moved home twice since getting MS. The first time was in between my initial clinically isolated syndrome and being diagnosed with relapsing remitting MS. It was summer 2015, and we already had our house up for sale. I developed optic neuritis in my left eye, and was told this ‘might’ be the start of MS. We took the decision that, as this wasn’t an absolute certainty, we should go for it!

My husband being a builder, we had moved numerous times in our married life. With several kids, dogs, cats, goldfish, a tortoise, our life has been, at the very least, adventurous when it comes to moving home.  It’s been a constant round of renovating, extending, telling each other we were “never going to do that again.” And then a year later finding ourselves doing it again!

Was I going to let MS stop me this time? Absolutely not! In fact, if anything, I was more determined than ever that we would move. I had crazy and unrealistic visions of me contributing as much as I had before - decorating, tea making, and being overall ‘first mate’ - I enjoyed the process and relished the design element.

We found ourselves a tiny three-bedroom bungalow on a busy main road and moved from our six-bedroom house one unusually hot November day in 2015. Of course, we had not considered the fact that our three children were now grown-ups, our three dogs would be able to escape from the garden onto the scarily busy main road and our three cats had no road awareness … plus an impending diagnosis of MS lingering in the not-too-distant future.

We immediately started renovating and extending the bungalow. Over the years I had become used to living in various building sites, cooking on a campfire, having 3 inches of dust over every surface, with children sleeping in the hallway whilst we finished their bedrooms. But throw my symptoms and subsequent diagnosis of MS into the mix (plus working full time), and it became a whole different ball game.

Three months after moving into the bungalow I was diagnosed with relapsing remitting MS. This followed an episode of extreme dizziness, whereby I awoke one morning and had lost my balance. I also became extremely weak on the left-hand side of my body. These symptoms resulted in a trip to my neurologist who confirmed I had MS. An MRI also showed activity and lesions. Luckily, our new house was close to our previous one, and my GP, Neurologist and MS Nurse all remained the same and knew my history.  The diagnosis was prompt, harsh and matter of fact: 

“You have MS.  An MS Nurse will be in touch.  Next patient …!”

Following my diagnosis, I had a mixture of feelings. Part of me felt relieved that I finally had an answer to the symptoms.  I could move forward now with a suitable DMD, which I hoped would delay the progress of the disease.  I didn’t really know a lot about or understand MS.

“It’s just like type two diabetes, isn’t it?  I’ll change my diet, adjust my lifestyle and take the medication.”  

MS had other ideas … 

My neurologist put me on a course of steroids. I don’t know how you usually react to steroids, but I did not react well. I’ve heard anecdotes about steroids causing a ‘false high’ with people whizzing around like Wonder Woman achieving all sort of accomplishments.  

Not me. 

I reacted very badly to the steroids and have never taken them again to this day. I could not get out of bed and felt almost suicidal. I had no energy and no choice but to lie in bed, amongst the rubble, brick dust and muddy footprints, trying desperately hard to sleep my way out of the relapse.  

At this point I had dogs and builders trailing through the bedroom. As spring progressed into summer, my husband and his team of workers put their all energy into changing our bungalow into a house. I am forever grateful to them for ignoring my crazy bed-hair, offering to bring me tea in bed, and being all round, super-nice and understanding guys.

This was summer 2016. During this time, I tried my first DMD, Rebif. Unfortunately, this did not work for me. I relapsed another 2 to 3 times: I had the continuing balance problems, and by now was walking with one stick. By late autumn I was walking with two sticks. Additionally, the weakness in my left side had not improved, the eyesight in my left-hand side did not come back following the optic neuritis, and over the summer I developed not only heaviness in my legs but an extreme burning in my feet. How I managed to walk over the precariously balanced scaffold boards to my kitchen (temporarily in the garage) I have no idea!

For me, the early days of my MS diagnosis were a learning curve. Not only in terms of understanding the disease itself (and let’s face it, there is a lot of literature out there!) But also in terms of understanding my limitations. I learnt that stress causes relapses or a heightening of symptoms. 

A sensible person would be satisfied that the house was finished and be content to settle and stay, wouldn’t they?  But MS has given me a dangerous ‘live in the moment’ mentality. It was only two years later that my husband and I found ourselves buying a plot of land 85 miles away and deciding to relocate and build our own house. But that’s a story for next time...