PERSONAL STORIES

Young mum, Rebecca, shares her experience of a daunting MS diagnosis and how the team at Suffolk Oxygen Therapy Centre helped her to ride the storm.

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I’m celebrating a minor victory this month. April 28th 2023 marks one year since I woke up with numbness in my hand and arm, and the gruelling month that followed involving blood tests, X-rays, CT scans, MRI, lumber puncture, a hospital stay and steroid infusions. Then my diagnosis was confirmed. Relapsing-remitting multiple sclerosis. I have come to realise how fortunate I am to have received a diagnosis so quickly, something I do not take for granted.

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Aged 34, with a 1 year old baby - his (and my) birthday two days before the numbness began - I spent the next few months desperately trying to understand what this meant for me and my little family, and of life as we knew it. I realised very fast how incredibly little I knew about MS and so began the steep learning curve of what it all meant. I had only ever known two people with MS, both of whom were elderly and in wheelchairs. Terrified was an understatement. 

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It soon became clear that family and friends also knew very little and I was met with some interesting reactions from people, albeit with the best will in the world, being ‘so unbelievably heartbroken and devastated for me’ which made me panic. What do they think is going to happen? It made me realise that by sharing my story, perhaps I can possibly help alter the misconception that it’s something only in older people, and who will be in wheelchairs 24/7.

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My husband Rory was unbelievably supportive and proactive and jumped straight into seeking out absolutely anything that we could do to help keep me as healthy as possible, for as long as possible. And that is where he stumbled across this gem, the Suffolk Oxygen Therapy Centre.

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I came for my first oxygen session in June 2022 and have never looked back. Something that was incredibly daunting at first, turned out to be the best thing about my MS journey so far. I have a very overactive mind and initially found it quite difficult seeing others facing the challenges that come with the varying stages of this disease.

 

To combat this, I decided to also have some cognitive behavioural therapy and talking therapy to help try to rewire how I was processing this diagnosis. I found that really helped me focus on my personal symptoms and how I was feeling that particular day, rather than letting the fear of what might come in 20+ years take over!

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The wonderful, compassionate staff who have spent hours with me sorting appointments around juggling childcare and work etc, and members I’ve been fortunate enough to share the oxygen chamber with, have welcomed me with open arms and are the most empathetic, upbeat group that I’ve ever known. A camaraderie like no other, who have offered up a whole host of tips and tricks they’ve picked up along the way to help them manage their MS - something you simply cannot get from the medical books.

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I’ve come to realise that everyone has a totally different experience and what works for one person might not work for another, but you just have to keep your head up and take each day as it comes! Someone once described it to me like pregnancy - no two pregnancies are ever the same and I guess I’m learning the same is true for MS.

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Although my specialist was unsure about whether oxygen therapy would work, the evidence from the experiences that have been so kindly shared with me whilst getting up to pressure and back down again overwhelmingly suggest otherwise. I mean, the specialists can’t possibly know about absolutely everything can they?! I’ve found it so compelling and it has spurred me on so much to keep up the good fight, because evidently from the lovely people I’ve met along the way at the centre, life is there for living! It doesn’t stop just because you have MS. 

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So on reflection, a year into my journey, I’m celebrating that not only am I surviving, I am thriving. I’ve been able to settle into a new way of life, both mentally and physically. My MS is mild at this stage and I’ve been fortunate enough to begin treatment already, so I feel very positive about that. I’ve been able to stay well so far and avoid 99% of the toddler’s nursery germs (which I also credit to the oxygen!)

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I’ve also taken on board, with great interest, all the aforementioned tips and tricks, in helping with the challenge of tackling this thing this head-on. I’m so grateful for being able to visit the centre each week to breathe in a big dose of vitality, propelling me into the week ahead with lots of oxygen in my blood, and a positive mindset after being amongst the most inspirational gang I’ve ever known. So THANK YOU for being the friendliest port in a very rough storm.

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PS: I’ve heard the hottest new thing in Knightsbridge is a hyperbaric oxygen chamber - keep up world!