How it feels to live with a non-visible disability

First symptoms 

I first started to think something wasn’t right during lockdown in 2020. I was starting to stumble over my own feet on walks. During that summer, my right shoulder blade started to tremble. It happened a lot. Sometimes it made me jab myself in the eye with my mascara wand. Or I’d spill a drink. My kids nicknamed it my ‘disco shoulder’.  

During 2021, I had a couple of bad falls. I tripped over a pavement because I couldn’t lift my leg fully onto it. I fell backwards onto the patio in the garden  when it felt as if my foot disappeared from underneath me. In Autumn that year, my vision started to blur and I couldn’t see properly. I frequently got pins and needles for no reason.  

My MS diagnosis

I was diagnosed in with MS in 2022, at the age of 45. Once my GP referred me to a neurologist, it only took a couple of months to get an MRI. And from that they told me it looked as if I had MS. But I still needed a lumbar puncture to confirm it, and another relapse in 2023 to know it was relapsing remitting MS.  

I remember the day of the MRI results. 

Two days earlier, I’d been so excited to get a promotion at work. Now, 45 years old, I sat in a hospital crying on my husband. I knew nothing about MS, and all I could think was how long it would be before I was in a wheelchair.  

Accessing the best medical support

My local hospital in Southampton has been amazing. I have a great team of MS nurses and a specialist neurologist who I can get in touch with anytime.

I have MRIs twice a year to keep a check on the lesions I have. And regular blood tests to make sure my treatment isn’t affecting anything else like liver or kidney function. 

Now, I’m more hopeful. I know this could be much worse than it is. Is it ideal? Absolutely not. Will it get worse? Probably, yes. But hopefully not for a very long time.  

It’s unpredictable though. I don’t know how I might be feeling in a year, 10 years or even next week. Even my neurologist doesn’t have the answers. But I’m hopeful that in my lifetime a cure will be found.     

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Leaning on colleagues, family and friends

My line manager and team in my workplace  are incredibly supportive. I can attend medical appointments without worrying about having to get back for this or that meeting. My husband, family and friends are also amazing.  

Telling my then 10 and 13-year-old was really hard. Still, there are silver linings. My disabled fast pass in Disney last May definitely helped. Their joy at not having to queue was a small win! 

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Invisible symptoms in an MS relapse

The relapse that confirmed my relapsing remitting MS caused a couple of invisible symptoms which you might not have noticed unless you knew me. 

For a month, I lost most of the strength in my right arm. I could drive, cook and type, but I couldn’t hold a pen well enough to write and I couldn’t put my hair up or do up a necklace.  

I’ve been taking Vumerity for 7 months now, which in theory should  reduce the number of relapses I get and hopefully stop any new lesions appearing. Taking that, I feel more in control.

Unseen symptoms day to day

My shoulder is always trembly, and I have the ongoing symptom called ‘foot drop’ in my left leg. It’s not always obvious to other people.

I sometimes use a FES machine (Functional Electrical Stimulator) to manage it. The FES is an amazing bit of kit, which my kids have nicknamed Ultron (after the super-powered robot from Marvel).   

But if I’m struggling with fatigue (another invisible symptom) and I can’t spend my energy getting hooked up to Ultron, then I’ll use a walking stick instead.  

Adjusting to life with MS

I feel very fortunate. I can still drive, work and exercise. And most importantly of all, be a mum. I’m more aware of myself and my physical capabilities than I was before and that’s not a bad thing. If I need to stop, I stop. 

My symptoms are largely invisible. Unless you happen to see me taking my tablets, you wouldn’t know. You probably won’t see the wires running into my shoe or hear the beep as I turn Ultron off and on. And unless I’m having a bad day and walk with a slight limp, you wouldn’t know.  

It’s always there. I’m just learning to get along with it now. 

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