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Having MS in lockdown: 'I was petrified in the beginning, but people are really taking it seriously'

A virtual balloon race is taking place today, Word MS Day, at 6pm to raise money for MS Ireland.

Image: MS Ireland

SARA-JANE TRACEY WAS a professional showjumper aged in her late 20s when she was diagnosed with Multiple Sclerosis (MS), and told she wouldn’t be able to go horse riding again.

After being diagnosed with optic neuritis, and losing power and the sensation in her legs, sometimes experiencing huge amounts of pain, and problems with controlling her bladder, she was “shocked” to be diagnosed with MS.

“I thought maybe it was a back injury,” the Kildare native said, adding that the medication for the optic neuritis worked to fix her vision. 

Multiple Sclerosis, a central nervous system condition, results in symptoms that can vary massively from fatigue and numbness, to memory loss and sometimes temporary blindness.

Most people are diagnosed between 20 and 40 years of age, and 85% of diagnoses relate to relapsing-remitting MS, which involves ‘relapses’ where you experience symptoms, and periods of time when you don’t.

The condition can manifest itself in a number of different ways depending on the severity of the disease and the person who has it.

Sara-Jane then took a drug to treat her MS, but suffered from kidney failure -  a rare side effect of that drug. Five years on from her diagnosis, she is able to go horse riding, but is now on a waiting list for a kidney transplant.

She’s back to horse riding for leisure purposes “whenever my body allows me and when I have the energy”.

“I just love the horses so much… It keeps my head right in these difficult times.”

sj 1 Source: MS Ireland

Right now, Sara-Jane is cocooning – those with chronic conditions are taking measures to protect themselves, as it isn’t exactly clear how Covid-19 could affect them.

She says the pandemic is “frightening on a day-to-day basis”.

At the very beginning I was petrified, especially you know I’ve been on so many immuno-suppressants over the last five years.
I am in renal failure. So I have to get dialysis three times a week so I’m in and out of the hospital.

“I really was so afraid at the start and also, never mind for myself, because I’m in the hospital for dialysis that I would give it to my parents – it’s just frightening.

“It’s the kind of disease that like, or the kind of virus that you don’t know how I was going to affect you, so like you know you could get mild symptoms and you could be fine or you could be one of those unfortunate people that end up in ICU.” 

She says that she’s less worried about it now, thanks to the efforts many have gone to.

“I feel like people are really taking it seriously – they’re doing their best to keep each other safe, and that definitely gives me comfort. So, you know, I feel like if everyone does their part, we’re all a lot safer.”

As she lives at home, her parents have to cocoon as well.

“It’s so difficult for them because they have to cocoon with me to keep me safe. So they can’t see my sister and brother either, or their friends. My mum would always see her mum she would always be up with her, and she can’t do that.  

“I can see it’s really affecting my mum – she does find it very hard,” Sara-Jane says. 

Funding hole and a virtual balloon race

Multiple Sclerosis Ireland is among the not-for-profits, charities and organisations offering supports for those in need, that is facing a funding shortfall this year.

Around half of its income comes from the State, meaning the other half is made up of fundraising initiatives like mini marathon, full marathon, skydives and the research ball. 

Its CEO Ava Battles says:

Last year, [our] 34 voluntary branches raised nearly a million euro – it was €950,000. They spent that money on the provision of service to people within us in the community. 

It’s hoping that its flagship MS Readathon will still take place in the autumn, but says “again, nobody knows yet”.

In order to make up some of that shortfall, a virtual balloon race is being held today at 6pm, with the aim of raising funds. 

They’re hoping that 9,000 balloons will be bought – one representing every person with MS in Ireland.

‘You need to stay one step ahead of MS or it will take everything from you’

Amid lockdown, Battles says that there are many issues for people with MS, including: when will their consultations resume, what happens to those who need carers, and what affect the actual Covid-19 virus has on people with MS.

Battles says a lot of people with MS would have been told by their hospital that they should cocoon, but the threat to people with MS isn’t immediate “completely clear”. She says she doesn’t know anyone with MS who has had the virus in Ireland.

But cancelled hospital appointments have caused people some stress: “There’s some people obviously on different medications that need to go to the hospital and stuff like that so you know they’re obviously have been significantly impacted.” 

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Cocooning and a 5km limit for exercise has also posed a challenge: “People need to keep active – obviously everybody does – but people with MS, it’s not good if you’re sitting down quite a bit and if you’re not good getting out.”

When asked about the impact the pandemic has had on carers and people who avail of home care, Battles says that some people cut back on the care they were getting in order to minimise the risk of contracting Covid-19.

As a result, some people with MS aren’t getting the exercise they need, she says. 

This is harsh for some people, they’re actually probably not even getting out of bed as much as they should be. Because they don’t have that level of care coming into their home. That’s a decision sometimes they’re making around their own health and safety, saying, ‘Look, I don’t necessarily want six carers coming in’.

Sara-Jane says that “not many people really truly do understand MS. I think it’s only until you know somebody with it or you have it yourself”.

It is a very debilitating disease, and it is a worrying thing to be diagnosed with because you don’t know how it’s going to affect you by the road.
But, you know, there’s one thing for sure that I have found, you know, staying positive is definitely so important and staying active is so important, because you have to try and keep ahead of it all the time, stay one step ahead of it or it will just take everything away from you.

“It’s not as traumatising as you think it’s going to be when you first get diagnosed, you can live with it, you can continue to do everything you’ve always wanted to do in your life.

“You just have to keep trying, find different ways. There’s always a way to do things. And I definitely would just say not to let it stop you, and you can continue living your life.”

You can buy a balloon for €5 for MS Ireland here. The first balloon to cross the line wins a trip in a hot air balloon. 

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