The MS community gives me the edge on MS

Busy teacher and musician, Stuart, had a shock when he was first diagnosed with MS. Determined to manage his multiple sclerosis, he joined MS organisations for support.

Anaphylactic shock hit me like a tonne of bricks!

Confused and scared, I was rushed away in an ambulance wondering what on earth was going on.

That was only the beginning. 

I’d spent 25 years in a career that I loved; teaching. But fatigue was becoming unbearable, and I assumed this was just down to allergies.

I’d also partially lost my hearing at this point, so I went for scans to investigate what could’ve been a benign tumour. I still remember hearing the words …

And with that, my life changed. 

On the journey home, I was distraught! But I harnessed everything that I had inside of me to fight this thing. 

I thought, ‘There’ll be treatments, there’ll be clinical trials, there’ll be ways that I can get the edge on MS.’ 

My wife and I began to read everything that we could online. 

The MS Trust and MS Society websites were amazing. There’s an absolute mine of information on those sites from how to talk to your neurologist to what DMDs are available.

With a heavy heart, I had to accept my teaching days were over.

Back before my diagnosis, I was playing in five bands. I’m not quite sure how I ever did it to be honest. 

Gone were the days of running around to play weddings and parties.

Although, I do still get to gig with my band ‘No Ordinary Fish’ where I get to focus on the music that I really love.

Having that structure, that busy lifestyle, that purpose taken away from you was really difficult. 

One thing that really helped me through the process of my lifestyle change was the MS community.

Alongside the MS Trust and MS Society, the Overcoming MS (OMS) groups have been amazing. It’s a space where I can interact with others, share experiences, positive stories, and recipes.

I’ve also been using the OMS diet, which I feel has helped me personally. 

Through finding the MS community, I’ve been inspired to do so much more, from volunteering to deep breathing exercises. I’ve had a complete lifestyle transformation. 

The NHS have supported me with personalised physiotherapy, with follow-ups plus a 6 weeklong group course.

I’ve signed up to be a buddy for Shift.MS to help others in the situation that I was once in.

Plus, I’m also starting to work in a warehouse and drive for local food charity ‘Exeter Food Action’, and I do monthly monitoring of two waterways for ‘The Westcountry Rivers Trust’.

Looking after yourself is so important, and I’ve even started to use mindfulness and meditation. It’s strange to say, but I’m not sure I ever would’ve given them a go if I hadn’t been diagnosed with MS.

Don’t get me wrong, I’d love to still be teaching, out trekking on long walks or mountain biking.

I’m not putting a positive spin on this complete lifestyle change, but it has reset me.

I’m more grateful now for what I have and the support networks around me. My family and friends have been amazing through everything.

Exercise, sleep, diet, and quality time with my wife. They’re my priorities now. 

Being diagnosed with MS is a thunderstorm of emotions. It’s so important to talk to others who know what you’re going through.

If you'd like to talk with others about your experiences of life with MS, join the MS Trust Facebook group.