multiple sclerosis and childcare

“How am I going to look after a baby when I’m like this?”

My name is Helen and I’m 32 and I have multiple sclerosis (MS) On the 04 March 2019 I discovered I was pregnant. As the week went by, I had a spasm in my back every time I bent my neck down. As the days went on, I had pins and needles and numbness in my feet that was there constantly.

I was driving home from work one night and my foot was flopping off the throttle which scared me. The numbness travelled up both of my legs until I couldn’t feel anything from the chest down. I couldn’t lift myself off the sofa or walk upstairs. I didn’t know what was happening. I thought it was something to do with pregnancy.

The next day I woke up and fell on my side. My mum took me to hospital where I saw a number of doctors and consultants who didn’t know what was wrong. Three days later still at the hospital I saw a neurologist who demanded an MRI scan, lumber puncture and steroids for five days. I wasn’t allowed to have an MRI because I was in my first trimester of pregnancy. After 10 days at the hospital, I had physio before coming home to recover but I still couldn’t feel my legs or feet and felt overwhelmed with sadness, pain and unsureness.

At 13 weeks pregnant I was allowed to have an MRI scan. At 14 weeks, I woke up and my left hand went numb and gradually my whole arm as well. Again, I couldn’t feel anything or use it. I had a follow-up appointment at 16 weeks which I thought would just be a normal check-up. The neurologist had a screen in front of him which showed lesions on my spine and one on my brain, he then said it could be multiple sclerosis.

I just remember hearing the words MS and I burst out crying, I was sick and felt like my life was over. Thoughts that went through my head were, ‘Am I ever going to walk again? Will I ever feel my legs, arm, and hands normally? Or will I end up in a wheelchair? How am I going to look after a baby when I’m like this?’

I was referred to another neurologist who specialised in MS. Through my pregnancy and maternity, I had a few relapses. I had an MRI in October 2020 and two weeks later I had a phone call to say that the scan showed a few lesions on my brain had developed and I got an official diagnosis of MS.

Just before going on treatment, I had another relapse. I was numb from the waist down, my legs and feet were all floppy and I was unable to walk unaided. I had full care from my mum, my relapses were severe, I couldn’t take care of my son and felt like a failure in my head. I compared myself to other mothers who could take their children to the park and other places.

A year and a half on I’m in a much better place mentally and physically. Every day with MS is challenging, and I have good and bad days. I take medication for pain and to slow down the progression. I have always got symptoms, mostly invisible ones such as numb hands and feet, pins and needles, tingling, burning and muscle spasticity in my legs, brain fog and severe fatigue. But I am not ashamed of my story, and I hope it will inspire others. I am proud of how much I have overcome these past three years.

I have decided to raise money towards MS-UK by taking part in My MS Marathon. I will be walking 30 miles in my spare time to raise money towards this charity.

I am forever grateful for my wonderful family and friends, my neurologist, MS nurse, physio and also support from the MS community I have met over the past two years. I will continue to fight this condition every day to give my son the best upbringing he deserves.

My next step in life is to do a counselling course to help others. No one should suffer alone. I have also signed up with my friend who is bodybuilder to their gym for weight training. She is creating a special meal plan for me, and I plan to eat four to six meals a day. I’d started weight training before my diagnosis and want to take it up again. Even if you have MS, you can still achieve what you want!