Tuesday 17 September 2019

'It was humiliating. I couldn't speak, I couldn't move and my boyfriend had to shower me' - Young woman diagnosed with MS on her 27th birthday

Lisa with her 'mother-in-law' at the Women's Mini Marathon
Lisa with her 'mother-in-law' at the Women's Mini Marathon
Louise Kelly

Louise Kelly

"I was diagnosed with multiple sclerosis on my 27th birthday - a card would have done just fine."

It's incredible how Lisa Richardson has managed to retain her sense of humour after the last five years of blood tests, ECGs, MRIs and lumbar punctures.

But it's this very quality that shines through when the young Dublin woman relives the pain, the humiliation, the fear and the uncertainty that she has suffered since she first began to feel unwell in May of 2011.  

"I was feeling a little off-balance, veering off to the left when I walked. It was kind of like flu symptoms - which is what I explained to the GP when I went," she told Independent.ie.

After an examination, during which Lisa was asked if she had Bells Palsy, she left the doctor's office with an antibiotic for an ear infection and a sick note for work. But, over the next week, she started to deteriorate - rapidly.

"I had no energy, I felt lifeless, I could barely move my body, and I really wasn’t getting any better," said the now 31-year-old.

Lisa Richardson and her partner Jonathan.
Lisa Richardson and her partner Jonathan.

"By the next week, I was unable to lift my head off the pillow. I had no appetite and could hardly even drink water. It’s hard to explain but I felt as if everything and everyone around me was in a different world that I wasn’t part of."

It was Lisa's boyfriend Jonathan and his mum who convinced her to take a trip to Beaumont Hospital A&E, even though she wasn't dressed for the occasion.

"I am very particular about what I look like when I leave the house – I never go outside without my makeup," she laughed. "But this day I could barely manage to get into my brother’s football jersey and a pair of tracksuit bottoms."

That night marked the beginning of five months of prodding and piercing before Lisa was eventually given a diagnosis. She left the hospital after that visit no closer to knowing what was wrong - or how to fix it. "The doctors thought I might have had a stroke as the left side of my face had fallen and the left side of my body was so weak."

Lisa stood as godmother for her baby niece Michaela in September that year - no mean feat as, by that stage, the entire left hand side of her body was not reacting properly and she was unable to walk without limping.

"The morning after the christening, I was in my bedroom resting – Jonathan had gone to work already – and I opened my mouth but no words came out. It was like I was frozen.  All I remember after that was waking up in a bed in hospital facing the bed where my late brother had been."

It had only been just over twelve months before that Lisa had said goodbye to her best friend and brother Carl, who he died suddenly in his sleep. Later that day, she found out that her father had walked upstairs and called emergency services after seeing his daughter having a seizure on her bed. 

“I remember waking up in the hospital gown with no bra on and thinking ‘who dressed me’?!’

Lisa's best friend and brother Carl
Lisa's best friend and brother Carl

Admitted back into Beaumont hospital, Lisa attempted to make her way to the bathroom on her own but "started to veer off like a drunk person" and crashed to the floor, bringing a hospital trolley with her. It was actually a patient with MS who helped her back to her bed - and first broached the idea that she might have the illness with her. But it wasn't until early October, Lisa's birthday to be exact, that she was officially given her diagnosis.

"My professor came in to the room, and with my birthday cards behind me on the hospital bed, told me that they’d found lesions on my brain and that I have MS," she said.

In Lisa's own words, she was then treated like a "guinea pig" as the doctors tried to figure out what the best treatment for her was. She's had plasmapheresis (which works a bit like kidney dialysis as a way of cleaning your blood); she was turned down for a "fantastic monthly infusion" as she had a certain virus in her blood that would react badly with it; she's taken medication which made her face break out in little boils and forced her to wear a patch over her eye. 

Her whole life as she knew it had disintegrated as she experienced severe fatigue and was forced to walk with a crutch - "I refused to use a walking stick - I'm not an old woman!". All the plans she'd begun to make after the tragic death of her brother were once again put on hold. She couldn't work, was unable to play her beloved netball, was forced to give up learning to drive.

But it was in February of 2012 that Lisa reached a new low point. Her health deteriorated even further and an MRI revealed new lesions on her brain. She was to spend the next few months in a hospital bed on a feeding tube as she was unable to walk, talk or eat.

Lisa on the netball team
Lisa on the netball team

"I was so upset and crying all the time. I was like a bloody banshee in the hospital," Lisa remembered. "People would come up to visit and I would scream at them to pull the curtain around my bed.

"Then they'd get a fright when they saw what I looked like and try to hide it - but that would upset me even more. I couldn't even text anyone from my bed because I couldn't use my fingers.

"That entire time was humiliating - I couldn't even get off the commode by myself. It's not romantic when your boyfriend has to shower you while you sit on an assisted seat in the hospital bathroom."

So when the neurology team suggested a trial of a new medication, Lemtrada, which was not yet FDA approved, Lisa thought "why not, what other choice have I got?" 

These intravenous infusions - now approved - are prescribed to people with relapsing forms of MS, which Lisa has, and is given for five consecutive days initially and for three consecutive days one year later.

It was a terrifying long road to relative recovery for Lisa as she waited to see if the infusions would have the desired effect.

"I had to go to physiotherapy and learn how to walk again. My boyfriend managed to arrange a proper wheelchair for me - and even put my name of it. 'Care of Lisa Richardson - do not touch!',"  she laughed.

"I had to go to speech therapy too - it was really scary as it took ages for my speech to come back. But when it did, I sounded very posh!"

The eight or nine weeks in hospital gave the young woman, who had always wanted to get married and buy a house and have children, a lot of time to think. She didn't know what the future held for her - and didn't want to be a burden on her boyfriend. 

"I just kept thinking 'Am I going to be able to have kids?' 'Am I going to die?' So one night in the hospital I told Jonathan I wanted to speak with him," she said, for the first time breaking down in tears at the memory.

"I said 'We don't know what I'm going to be like. There's the door'. But he just laughed at me and said 'Is that out of your system now?!'. He didn't care what I was like. He was there every day of the hospital stay and wouldn't let me complain." 

And "like a miracle", Lisa became Lisa again - she began to walk and talk and look like the young woman she was before her diagnosis.

"I did my first Women's Mini Marathon in aid of MS Ireland and I've done it every year since. Every year my time gets better and one of these years I want to run it," she said.

"I was a bit nervous asking the netball team if I could come back but I did. I was brutal when I got back but my balance and co-ordination became better and better. I need to keep the exercise up or my muscles will die."

Lisa will turn 32 next month and it will be her 5th anniversary of her MS diagnosis. She has recently been made redundant after 16 years of working in her catering role - which she sees more of an opportunity to change career paths than a setback. She also passed her driving test two days before Carl's 6th year anniversary - and believes her brother was guiding her through the gears.

"I get a little reminders from time to time that I still have the illness. I can get pretty sick from a common cold and the fatigue is an absolute killer. It can be really annoying when people ask you to go out but then MS says 'you're not going out'.

"But I take advantage on my good days. You have a rest. I'm not afraid of hard work. People think it's a death sentence but I'm living with MS."

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