No-one could give me a hug and tell me it was going to be OK. That was the hardest part.
I was 28 and had just been diagnosed with multiple sclerosis (MS) after experiencing symptoms such as muscle pain, fatigue and temporarily losing my eyesight. MS is an autoimmune condition that can affect the brain and spinal cord.
But the pandemic meant there was an added layer of anxiety to what was already a confusing time – I had to go through many of the most difficult moments alone.
It began five years ago. Over the course of a week, I lost most of the sight in my right eye. I couldn’t see anything, my vision had just completely gone. It was so dark.
Being quite young at the time – only 23 – I didn’t go to the doctor straight away. I was waiting to have an operation on my sinuses and I thought the two might be connected.
It wasn’t until I was dressing the mannequins at the store I worked in that it became clear I needed to get answers. A row of mannequins had fallen down and I hadn’t noticed because I couldn’t see out of that side.
My manager urged me to go to the doctor, and I was diagnosed with optic neuritis, where the optic nerve becomes inflamed. I was worried it would be permanent. But after a course of steroid treatment, my sight returned. Most of my vision came back within two weeks and it was completely restored within about two months.
After that, I felt healthy and didn’t have any further symptoms. But at the start of 2020 I became poorly like I never had before.
I experienced pain in the left side of my body and lost the feelings in my legs. Originally, I thought I had done too much exercise in the gym and perhaps pulled something. But my GP grew concerned when I started to have a high temperature and I was admitted to A&E.
I was in hospital for nearly a week on a mixture of IV drips, antibiotics and steroids. Although my condition improved, doctors couldn’t work out what was wrong. The feeling in my legs started to come back and the pain subsided, so they sent me home, but what landed me there remained a mystery.
Even after being discharged, I was tired all the time. I’m usually a really active person, but I was becoming fatigued and experiencing back pain.
One morning in July I woke up and the vision in my left eye had deteriorated – very similar to what had happened five years ago, but in the other eye. I was diagnosed with optic neuritis again.
Meanwhile, I was busy at work in student accommodation at my local university, where I am a service advisor. It’s a busy job, but the fatigue would reduce me to tears at times. I would normally walk to work every day – which takes about half an hour – but it was getting to the point where I would get home and I would just cry because I was so tired. I couldn’t even take my shoes off.
One day I fell over in the street on my way to the university because I’d just completely lost my balance. It was horrible and humiliating. Being an adult who falls over was embarrassing, and on a larger scale I was scared – I didn’t know what was wrong.
My GP tested my cognitive responses to see how I reacted. She said there was a possibility I had MS and sought an urgent referral to a neurologist. This was scary. I was really worried because I didn’t know much about MS and whether I had it.
I went for X-rays on my back and spine, had an MRI and some blood tests. While I waited for the results I tried not to think about it too much, because I thought I probably didn’t have it – I was still quite young.
It was especially hard because of the pandemic. I hated having to go to appointments all on my own.
I received a letter informing me that my results had come back and I went to see the doctor, where I was diagnosed with MS. When the doctor was explaining the symptoms of the condition, it felt like she was outlining my life.
It made sense why my body had been reacting this way recently. She showed me my MRI, which revealed there were multiple lesions on the left side of my brain – that explained why I was getting all these symptoms.
In a way I felt relieved to have a diagnosis and know why my body had been reacting in this erratic way.
But the worst thing was that nobody could give me a hug. My boyfriend was away, working, at the time and it was really hard. Because of the pandemic no-one could give me a cuddle and say it was going to be OK.
My close friends and family knew I was having tests so they were shocked but prepared. Everyone was supportive, but I wasn’t quite expecting how upset a lot of people would be. That surprised me. A lot of my friends had questions that I didn’t know the answers to yet, which was difficult.
It’s common for people to be in their 20s and 30s when they are diagnosed – this was a shock to me at first
I took some time off work to rest. I was struggling to process it all and I was exhausted. Waiting for my referral to the MS clinic was tough. There was a three to four month backlog. It felt a bit like they were saying: ‘You have this lifelong condition, see you later.’
You’re also meant to be connected with a support group after such a diagnosis, but because of coronavirus they were cancelled. I didn’t really understand what was going on in my body or what could happen next. While I waited I got put in touch with the MS Trust and MS Society, who were so helpful.
I have now been on treatment for the past couple of months, which is known as disease modifying treatment. There’s no cure for MS. While the treatment doesn’t heal the damage that’s already been done, it should prevent any further damage or stop any relapses.
I will have another MRI later this year to see if any more lesions have appeared and if I have any further symptoms I will be in contact with the MS team.
I’ve had to adjust my life by becoming more in tune with my body and listening to it when I need to rest. It’s always a worry that I will have a relapse or end up poorly again, but I’m starting to see a light at the end of the tunnel.
I’ve returned to work part time, and will be back full time from next month. My partner now lives with me, which is a huge support. And now the lockdown rules have changed, I can see my family again which means a great deal.
If the treatment I am on now doesn’t work then I’ll have to go onto the next one, which they say is like chemotherapy. I am worried about this, but I am taking things each day.
There are lots of misconceptions about MS. I initially thought I was going to end up in a wheelchair but there are different types. It’s common for people to be in their 20s and 30s when they are diagnosed – this was a shock to me at first. You also can’t tell who has it. I look perfectly healthy.
Even though MS is a disabling disease, it’s not always the case. You might have some bad relapses, you do have periods of remission and are able to do things. In January I wasn’t able to walk 200 steps. Now I’m in remission I can walk between 10,000 and 12,000 steps again.
For anyone who has been given an MS diagnosis, I want them to know that you can live well with MS and a very able life when you’re in periods of remission. Each day is very different, you just have to take it one step at a time.
It’s MS Awareness Week – the Multiple Sclerosis Trust provides information for people with MS across the UK – for more information click here.
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