Spoonie Stories

Every Experience of Living with MS is as Unique as the People Managing the Condition

World MS Day is held on the 30th May every year, with a different theme each time. This year it is all about raising awareness of the invisible symptoms of Multiple Sclerosis: #MyInvisibleMS. We spoke to 3 women with MS to show how different each person’s experience can be.

Helping raise awareness for World MS Day

Having an national or global awareness day for chronic illnesses is a great way to help raise awareness. Multiple Sclerosis manifests in such a variety of different ways. World MS Day this year is all about the hidden symptoms of the condition.

“You don’t have to see my MS symptoms to believe them”

What is MS?

Multiple Sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel.

Multiple Sclerosis Society

More than 100,000 people in the UK have MS. MS affects almost three times as many women as men. We want to understand how different each woman’s experience of MS is and are grateful for these humbling and raw accounts.

Natasha, 38 years old

“I was diagnosed with Relapsing Remitting Multiple Sclerosis 8 years ago. It was a relief to finally understand what was wrong with me. Ever since I was 16 I’ve had neurological problems with my legs, with symptoms coming and going. But it wasn’t until I was 31 years old when I woke up one night with no feeling from the waist down.

I was rushed to A&E and the doctor told me there were multiple lesions on my brain and spinal cord. They admitted me for further tests and after a couple of weeks was diagnosed with Multiple Sclerosis. I’d never heard of MS before so it was huge news to take in.

Now my MS is a rarer form and I’ve been diagnosed with Primary Progressive Multiple Sclerosis. I’m now fully wheelchair bound and also bladder and bowel incontinent. It’s certainly been a roller coaster ride these last few years. But I’ve learnt to adapt to my new body. I work and drive a fully adapted vehicle from my wheelchair.

A diagnosis of multiple sclerosis is life changing but it’s certainly not going to take away my sparkle. It’s a tiny part of who I am, but it won’t ever be the most interesting thing about me.

My husband and family have always been there for me. I’m very lucky to have them. At first I pushed my husband away but now we’re the strongest we have ever been.

I think it’s important for me to be honest about my own journey. I struggled with feeling attractive as I came to terms with how my body had changed. But couples can still be intimate together a disability doesn’t need to change that. I am worthy of love and my husband and I have such a phenomenal relationship: we’re a team.

I can honestly say I know I can’t change my illness as it’s incurable. But I genuinely still have an amazing life and a list of goals I want to achieve. I’ll never stop believing in myself because life is for living and I love my life. I’m happy being perfectly imperfect.”

Jenna, 35 years old

I had lost weight, was exercising regularly, happy with life and my business, and then BAM. Optic neuritis in my left eye made me feel like I had vertigo. In fact, the doctors first brushed it off as vertigo/stress since I had just had my Gallbladder removed a few weeks prior. When it didn’t go away, I was referred to a neurologist, sent for an MRI and was lucky to be diagnosed with Multiple Sclerosis relatively quickly. 

I had had a handful of ‘flares’ or new symptoms since then, including dystonia (muscle spasms) in my feet that have not gone away. I deal with chronic pain, fatigue, brain fog, depression and anxiety daily. Is this what I had hoped for with my life? No.

Is my life still wonderful? Absolutely.

MS has taken quite a few things from me. But I’ve learned a lot as well: including how to re-prioritise my life and my business. I focus on what brings me joy so that I can actually do things I love and listen to my body’s needs. Thankfully, I did learn (super quickly) to become an advocate for my own health (and others). I recently participated in my first MS State Action Day and cannot wait to do it again.

Perhaps most importantly, because of my MS, I’ve learned that I don’t have energy or ‘spoons’ to waste on negative people, anger, or drama. 

Life isn’t all sunshine and rainbows. Some days are still going to suck with Multiple Sclerosis and chronic illness. But I hope you’ll learn to find more joy in the mediocre days, and truly savour the great in the good days.

You won’t find balance (spoiler alert: it doesn’t exist), but know that you will find joy again. You’re still capable of helping, loving stronger, and learning to ask for help, even if you still hate it, and you CAN thrive.

Heather, 29 years old

“Being diagnosed with MS came completely out-of-the-blew for me. It was a condition I knew nothing about, and I had barely even heard of it.

I was half way through my teachers training, and within a couple of weeks, I went from jumping around the classroom to hardly being able to wobble down the road. It was a really scary time, and the doctors were not much help. Every week I was back seeing someone else (as each week a new symptom decided to say hello), and each doctor diagnosed me with a different condition (inner ear infection, neck injury, stress etc).

In the end (and by this point I was really stressed) I resorted to Doctor Google, which gave me the answer of MS. I paid to see a neurologist privately, and was soon diagnosed with Relapsing Remitting Multiple Sclerosis.

The worst part had actually been that not knowing, so finally receiving a diagnosis came as a huge relief. I finally had an answer, and could begin to plan how best to cope with the condition, and the best ways to look after myself with it.

Living with MS is quite a challenge. It involves more naps than I ever thought possible to have! But it has also taught me so much. I’ve learnt to prioritise looking after myself and that I can still achieve my goals with the condition. I’ve also met amazing people along the way.

When being diagnosed with a chronic illness, such as MS, the pathway you originally saw yourself on may suddenly look slightly different (and a little more challenging), but it’s important to not give up and to remember that you can still achieve your dreams.”

If you are coping with a new MS diagnosis or know someone that is, The MS Trust and the MS Society are key places for advice and support. The MS Trust offers child-friendly books to help them better understand a family member’s diagnosis.

best distractions for chronic paint

One comment

  1. After bouts with many neurologists I was diagnosed of MULTIPLE SCLEROSIS, I was placed on medications which helped but my health was fast declining. Finally, I was introduced to Herbal HealthPoint and their effective Multiple Sclerosis protocol. This protocol relieved symptoms significantly, even better than the medications I was given. Visit ww w. healthherbalpoint. c om. First month on treatment, my tremors mysterious stopped, had improvement walking. After I completed the treatment, all symptoms were gone. I live a more productive life

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