MS balance problems: how it feels when the world won’t stop spinning
Balance problems shape Dave’s life. Dave, 41, from London, lives with relapsing remitting MS. Here, they share their raw account of living with constant dizziness and sudden falls.
In my experience, people often underestimate what "balance problems" actually mean when you have MS. So I’ve written this in the hope that it’s useful, especially for carers, family members or anyone trying to better understand what it’s really like for me.
Dizziness and MS
For about a year now, my world has been permanently spinning. That’s because of lesions on an area of my brain, my ‘cerebellum’, which helps control balance and movement. As more lesions appear and my brain gets increasingly scarred, my symptoms will increase. For me, the damage MS has already done is still there.
Balance problems with MS can come and go. But for me, it hasn’t eased over time.
When it all began
The dizziness started early. But my very first symptom was hearing loss on my right side. Not just quieter, but completely gone. It’s not a common symptom, and understandably, I assumed my balance problems were caused by issues with my inner ear.
I was diagnosed with relapsing MS a few years ago. I recently started on ofatumumab (Kesimpta), and it’s been incredible. My relapses have completely stopped. I used to lose a whole sense for three or four months at a time – just ‘pop’, and it was gone. One time, my vision became extremely blurred, so I could barely see for several months. But that’s all stopped now, so in terms of disease-modifying therapies, I’m a full-on success story.
Of course, that doesn’t mean everything’s fixed. And in my case, the dizziness-causing damage is already done.
Falling over, even when I'm standing still
The other day, I fell over from standing completely still.
The world shifted sideways like I was on a boat or plane that suddenly tilted or capsized. And my body reacted to the tilt - quickly, before I could even think. It was subconscious.
But the world hadn’t actually moved. So I fell. If it had shifted, I’d have probably stayed standing.
My body was operating on false information. I responded to something that didn’t exist and ended up on my arse.
Injuries from sudden falls
The number of times I've injured myself I find pretty hilarious at this point. I've got multiple, inches-deep gashes in my legs from falling onto things made of metal.
A real peach was the time I was working on an electronics project, stood up, and foolishly assumed the world would stay still. I ended up with the sharp end of my soldering iron jammed into my foot. I’ve got no idea how the soldering iron went from its holder on the desk to halfway through my foot, but MS provides.
I'm not looking for thoughts and prayers here. But I do want people who haven’t experienced this to try to understand just how much it can take over your life.
I've just learned to protect myself a bit more
I haven’t made loads of changes to my environment, yet. But I furniture-walk around the house, grabbing onto anything solid.
I’m living with my parents at the moment, and I’ve refused to let them adapt the house for me. I’m just not ready. It’s mostly on principle – it’s their house. They’d fall over themselves to make changes if I asked, but I’m just not there yet. But I know when I move in with my partner, it’ll be time to get real: rails, rearranged furniture, maybe walking aids.
I’m on the list for an occupational therapist to assess the place, and I’d recommend that to anyone else. Sometimes you need someone else to say, “Dave, this would improve your quality of life!”, and then I’ll probably listen. It’s harder to hand-wave that stuff away when it’s not just arguing with yourself.
Living with something no-one can see
MS isn’t my first time dealing with an invisible illness. I’ve had ME since I was 16, and I still have it now, but MS is ‘louder’. I’m well-versed in trying to get people to understand something they can’t see.
If people could see what it was really like? Well, when you've got to plan peeing 30 minutes in advance, it can put a dampener on your spontaneity.
One interesting contrast has been the response from the NHS. With MS, I feel like I’m actually being taken seriously. The system can work, it's just a question of whether a condition is believed to exist. MS is real to the NHS. ME, less so.
But even with MS, trying to explain what it feels like to live inside my brain every day is impossible. So, I write things like this and hope it resonates.
