‘One night during dinner I realised I couldn’t make my hand pick up my fork’

Sandhia Shah with her dog Alfie
Sandhia Shah with her dog Alfie

The first few months after a multiple sclerosis diagnosis are always the hardest. I say that, but eight years after mine, I imagine there are harder days still to come. Those early months are hard in a different way, perhaps. They’re hard because it’s all so new, because you have more questions than answers and the road ahead is so uncertain. Hard because, as Christina Applegate, the US actress who announced this week that she was diagnosed with MS a few months ago, knows, being told you have a degenerative brain disorder in your 40s is an extremely difficult thing to come to terms with.

In the couple of days before I was taken to hospital and given the life-changing news that I had MS at 46, I kept tripping over my feet. It was in November 2014 and something had felt off for a couple of months, though I’d brushed off every symptom. A persistent, inexplicable pain in my foot, some discomfort in my fingers and knees – psoriatic arthritis, which a doctor confirmed and sounded manageable. I was tired too; lethargic and floppy. I’d wake up from a 10-hour sleep and feel exhausted. That’ll be some sort of perimenopausal nonsense, I thought. It’ll pass.

Then one day, as I was getting dressed after a shower, I fell into my cupboard. I hadn’t felt dizzy, hadn’t lost my footing, I just sort of flopped to the side. I shook it off, came downstairs and realised I wasn’t walking straight and couldn’t seem to correct myself. Maybe it’s vertigo, I pondered, brushing it off. I was starting to get a bit worried, but it didn’t cross my mind that it would be anything serious.

I dropped so many things over those strange few days (when, I now know, I was suffering my first major MS relapse) that my family started teasing me about my clumsiness. Then one night, I was having dinner with my husband and 17-year-old daughter (our son was away at university) and realised I couldn’t make my hand pick up my fork and lift the spaghetti to my mouth. I didn’t want to alarm anyone so I let them finish eating, my mind quietly racing. My husband looked at me and said “are you not hungry?”

“I think I need to go to hospital,” I said, calmly. “I can’t pick up my fork.” My husband was concerned that I was having a stroke, or at best I thought it might be an inner ear infection or vertigo.

The ambulance came and after examining me said they would take me in just in case it was a mini stroke. A CT scan showed no evidence of a stroke, which meant there was then some concern that it could be a brain tumour. That really scared me. I was told I needed an MRI, they kept me in overnight and it was another 24 hours before they could get me a slot to have one. Straight away, they could see what was causing it; the scarring on my myelin sheath on my brain was clear. It was multiple sclerosis.

Christina Applegate announced this week that she was diagnosed with MS a few months ago - Invision
Christina Applegate announced this week that she was diagnosed with MS a few months ago - Invision

I don’t know, of course, the circumstances around Applegate’s diagnosis nor how she is coping with it. But if she is anything like me (and, at 49 with a young daughter, I imagine we share some things in common) then it will have been a real mixture of emotions.

In a funny way, I found the diagnosis was a relief. I was glad to have an answer that would help join the dots between all the strange symptoms I’d been having. I was relieved not to have a brain tumour. But I was frightened too, and unsure of what the future would hold. I had some understanding of MS before my diagnosis. I was a podiatrist working in the NHS and had treated MS patients, but they had all been elderly and in the final stages of the disease. I was 46. I wasn’t sure what this would mean for me. I wasn’t given a roadmap for the illness, nor a treatment plan. Instead, I went away and began reading.

In the years since, I have thought about the timing of my diagnosis. I’m grateful it didn’t come earlier, grateful I’d been entirely physically capable when my children (who were 17 and 20 when I was diagnosed) were little. But it was still earlier than I’d ever anticipated I might have to confront a major change in my health and lifestyle.

MS is a frustrating illness as much relies on your own management of it. There isn’t a lot you can do to stave it off. There’s medication (though I’m not yet on any) and there are changes you can make in your day to day life to keep relapses at bay. After my diagnosis, I reduced my gluten and dairy intake, did Pilates, walked as much as possible and took it easy whenever I felt myself getting too tired. There wasn’t much more that I could do, and to this day that is still how I manage the illness.

After that initial episode, it took nearly a year for me to regain my movement, but then I had two years of feeling pretty good. In the past few years, I’ve slowed down a bit. I can’t retain information as well as I once could and I get tired very easily. Sometimes I can sleep for 10 hours and still feel wiped out.

I’ve learned to manage my condition by saying no to things and leaving places early. Fatigue is my big Achilles heel, and managing it is exhausting in itself. My family has been amazing. They all remind me to slow down when I’m at risk of tiring myself out and they’ve been so supportive. I’m pretty positive about my condition most of the time and determined not to be plagued by the challenges that could be down the road. But it isn’t always easy to keep those thoughts at bay. Sometimes, in the middle of the night, I think about hosting my daughter’s wedding or some big event and wonder how I’ll manage.

The stigma around conditions like MS still needs to evolve. I was keen to tell people pretty immediately about my diagnosis, but I can understand why others choose to wait. People don’t always understand what it means, and I’ve had to make my peace with that, as I’m sure Applegate will have to as well. I went through a period of feeling angry with anyone who said something careless or didn’t seem to realise what I was coping with. You move past that stage. You don’t want constant sympathy, you just want people to understand. It’s why I’m grateful to Applegate for speaking about it in public; it always helps to have a light shone on the condition.

In Applegate’s tweets, she mentioned a friend with MS had said to her that when you live with MS you “wake up and take the indicated action”. They’re right; that’s exactly how it feels. You wake up and ask: “How am I feeling today? How much can I do?” You make a call, and if you feel good you get going. You get out of bed and, in whatever way you can, start moving through the day. It’s what I do every morning and it’s what I'll keep doing for as long as I possibly can.

As told to Eleanor Steafel

For advice and support with MS contact the MS Society, Multiple Sclerosis Trust or MS-UK