At first, Nickie Davies, from West Kirby, Merseyside, put down her exhaustion to an “aftermath” of her Covid illness.
10 days after she battled the virus, the 47-year-old noticed she was yawning continually and up to “100 times a day”.
The mum “knew something wasn’t right” and decided to go see her GP.
Her doctor thought her symptoms were related to sleep apnoea and referred her to an ear, nose and throat doctor, who thought it could be allergies.
Nickie told Liverpool Echo: “Roll on to July and August, the yawning was still there.
“I then noticed I was slurring my words but as I’d had a few teeth out and awaiting a partial denture I assumed it was to do with that.
“Roll on to September and I started with headaches and went to the GP and brought up the yawning and speech which would be affected mainly at night when I was tired. The doctor suggested HRT [hormone replacement therapy] for me and I started on that.”
Nickie started suspecting that her symptoms might be caused by motor neurone disease (MND), but doctors reassured her that this wasn’t the case.
However, her worst fears were confirmed in July. She was diagnosed with the rare condition that affects the brain and nerves, eventually leading to death.
The mum said: “On July 20, I had my appointment with outpatients at the neuropathy clinic.
“My name was called and my mum, my partner and I walked into a room with the consultant and two nurses, I knew what the outcome was straight away.
“I had a brief examination of my strength and was told it was MND. The neurologist said he couldn’t tell me how long I had left as he would be wrong and everyone is different.
“I felt like I just had to go I couldn’t stay, I felt claustrophobic my worst fears had come true.
“The lovely nurses took me into another room but I just couldn’t take in anything they were saying, I wanted to go back to not knowing but it was out there I had motor neurone disease.”
The mum then spent two weeks crying, unable to think about anything other than her diagnosis and its impact on her loved ones, particularly her 16-year-old daughter.
Nickie said: “It made me realise that nothing matters if you have good health. I kept thinking of those times I’d wish for more pay, a better car, to win the lottery and I never thought – I just wish for good health. You just take that for granted.”
But Nicke’s strength grew from there, leaving “no room” in her life for sadness or negativity.
Despite her new mindset, MND still affected everything in her life from her speech to socialising.
She said: “Eating is a struggle, so I have to watch what I eat because my tongue doesn’t work properly. I can’t move food around easily which could cause choking episodes and drinking is even worse.
“I get tired very easily and struggle to do the activities that I’ve always loved, but I concentrate on what I can do.
“I do try and make a joke of my speech as this is what works for me. It’s like a guessing game or charades every time I open my mouth. I have pains in my arms and legs but I push past this.
“I am a great horse lover and have three of my own, I have to rely now on family and friends to help me with them and have a plan in place for when I can no longer drive and see to them.”
The 47-year-old advised anyone going through something similar to insist on a referral to neurology. She also urged those with MND or a similar condition to “bank their voice” using their iPhone or other methods, so they can later create a voice closest to their own to be used on communication devices.
Nickie’s pals have organised a charity event at the Railway Inn pub in Meols on Saturday, February 3. They have also set up a GoFundMe page to help Nickie out. You can donate here.