The Ultimate Guide to Living with MS: Wendi's Story from Symptoms to Acceptance
Meet the wonderful woman with a wicked sense of humour behind @WobblyWendi.
Here we dive into Wendi's journey with Multiple Sclerosis (MS), offering insight into her symptoms, diagnosis, and the acceptance of her condition. She talks about the significance of maintaining a positive mindset, finding joy in everyday moments, and viewing happiness as a choice. We felt compelled to share Wendi's story as it showcases how resilience and positivity can enrich life despite the challenges posed by MS.
Tell us a bit more about you and your life with MS...
My daily life doesn't look exactly like it used to. My legs can feel super heavy and weak now, especially when I’ve got to walk a long way. I’ve even developed this funky little kick with my left leg that reminds me of a donkey! It spasms and makes balancing tricky, which can be tiring. On top of that, my optic nerve took a hit, so my vision is pretty blurry now, which means I can no longer drive. But I’ve got this awesome electric trike that I love using to get to places, and finding the right mobility aids for the journeys I can walk has made a huge difference.
Mentally, things can get a bit rough too. My cognition isn’t what it used to be, which leads to forgetfulness and makes it hard to think sometimes. I often find myself in the kitchen scratching my head, wondering what I was about to do while trying to make a cup of tea! With all these ups and downs of living with a chronic condition, I’ve realised how important it is to focus on my mental well-being. That’s why I take time to practice mindfulness and meditation.
What were you first symptoms of MS?
I noticed my symptoms creeping in slowly. One day, I felt this strange heaviness in my left arm while I was changing gears in the car. Around that same time, I was also dealing with some lower back pain and sometimes felt a bit wobbly, especially when pulling a door toward me, which made me stagger back a bit. Usually, I’m the type to just wait it out and see if things get better on their own! But then, during an eye appointment for my blurry vision, things took a turn. The optician handed me a letter to give to my GP, and that’s when I started my journey toward getting a diagnosis. After some MRI scans, a lumbar puncture, and an evoked potential test, they figured it all out pretty quickly.
Can you tell us about your experience of transitioning to using mobility aids?
I started using a walking stick before my official diagnosis was confirmed, as I was experiencing balance issues. The first time I used it was during a holiday, which made it easier for me to embrace the change as I felt self-conscious using it around people I knew.
In 2019, around 6 months after my diagnosis, I really wanted to find a pair of crutches that were completely black, from forearm to ferrule. Back then, I couldn't find anything that fit the bill until I turned to Google and discovered Cool Crutches. I bought a pair of Black Crutches and I instantly loved how sturdy they were and they very quickly became my go-to walking buddies. Now my collection has grown and I absolutely adore my Carbon Fibre pair because they match everything and my Emerald Sky pair because they attract A LOT of attention and people always ask where I got them from.
Occasionally, I also use a wheelchair for longer distances, and I have a Rollator as well. Personally, I found the Rollator to be the most difficult aid to accept, but I believe it's essential to look at yourself in the mirror, as this helps with accepting how the aids look and feel. The most important thing is to not concern yourself with what others may think or say, even though I understand this can be challenging.
What does Cool Crutches mean to you?
You have changed my view on mobility aids! I can now whole heartedly trust that when I'm walking, I'm safe. I also know I'll be comfortable and I'll look good too! I love how strong the crutches are and how comfy the handle grip is. Plus, it's awesome to be able to pick something that really shows off my personality and style! If I was to describe Cool Crutches in 3 words I'd say: Reliable, Caring & Safe.
What is your biggest struggle living with MS?
The toughest part for me is dealing with how unpredictable my condition can be. My walking ability is pretty limited most days, but some days I can do a bit more, and my energy levels are all over the place too. Even though making plans can be tricky, I push myself to go for it anyway! It’s super frustrating to have to cancel, but I’d rather have something to look forward to than nothing at all.
When living with MS, what do you do to support your mental health?
I've always tried to stay positive, but getting my MS diagnosis was tough. I reached out to my GP, and cognitive-behavioural therapy (CBT) really helped me out. It gave me some useful mental tools to lean on. I've always loved mindfulness and meditation; they play a big role in my life. Also, being part of a community that gets what I'm going through has been super helpful, and I get a lot of joy from helping others.
What advice would you give to someone facing a life changing diagnosis or injury?
When you’re in a situation that you have no power to change, then acceptance becomes key. This can take time, and there’s no one-size-fits-all way to do it. But once you start accepting things, you might notice a weight lifting off your shoulders. Try to stay in the moment and don’t stress too much about what’s ahead. Just take it day by day or even hour by hour, depending on how you’re feeling. And remember to find joy in the little things!
The best piece of advice I've ever been given is 'happiness doesn’t depend on what you have or who you are. It solely relies on what you think', and that has always stuck with me.
I would also really recommend anyone facing a lifelong disability to give the Guide on Disability Benefits a read as I found having this information very helpful!
What are 'Wendi's top 3 products for life with MS?'
My mobility aids, I couldn’t do without them.
My big handled scissors for cutting open packets
A shower stool. This makes my time in the shower much more safe.
What is your experience of living in society with MS?
MS is a pretty complex condition which can make it tough for people to understand, even for those who deal with it every day. Over the last 5 years, I've unfortunately been exposed to my fair share of MS stigma. I think it comes from a lack of understanding, and the assumption that those with disabilities aren’t contributing to society. I’ve heard some harsh comments from people who don’t know what I’m going through, but I try my best to educate them, and just keep my distance from those too caught up in their own frustrations to listen.
There are a lot of services out there to help people with disabilities, but we still have a long way to go. It’s not just about having the right equipment or accessible ramps. We really need to focus on educating people in schools and teaching young people empathy, patience, and a positive attitude towards disabilities.
A few fun questions before we go...
What would be the theme tune to your life?Here Comes the Sun, by the Beatles
What would be your dream day out, and who are you spending it with?Richard Branson - GET ME ON THAT SPACE FLIGHT!
I love travel, it’s always had my heart. I went backpacking around the world in 1993 and had the most incredible time. I think Richard B and I share a mutual love for exploring and adventure, so he's the person I'd spend my dream day with!
And finally, have you got any exciting plans coming up?
I have a few travel plans pencilled in which I'm very excited about. I have a passion for travelling, and I feel incredibly thankful for the opportunity to explore. I want to show the MS community that traveling with a disability and mobility aids is achievable with proper planning.
I'm also excited that The MS Society has invited me to participate in one of their webinars next March to share my insights on traveling with a disability.
We personally LOVE Wendi's social media pages, they are full of positivity, support, helpful tips and giggles. If you are on Instagram or TikTok then check out @wobblywendi.
If you found this interview helpful and would like to read about others living with MS, then we recommend these:
Hayley Shares Top Tips for Supporting Your Mental Health With MS
MS Awareness Week - Scarlett's Story
An Interview with Jane Felstead: Living with MS - Life is short, be as outrageous as you like!