Jess Lambert hosts our Parents with MS peer pod. Here she explains what it was like to be diagnosed with MS while parenting five kids
I was officially diagnosed with multiple sclerosis (MS) in August 2017 when I was 30. I had my first symptoms in 2004 when I was admitted to hospital for two weeks. Doctors thought I’d had a brain haemorrhage, but after many tests it turned out to be optic neuritis. I was told it was an isolated incident.
Throughout my 20s I kept going to the doctors for numb toes and tingling fingers and my legs going weak but, of course, the GP was putting it down to my weight and no further investigation was needed. It was very frustrating because to my family it was all in my head, and I was being a hypochondriac. Eventually, I turned 30 and my legs went weak, and I had to use a wheelchair. I then had an MRI scan and doctors confirmed I had relapsing remitting MS.
MS changed my life. I went from being able to share a bed with my husband to needing a hospital bed and being in a small bedroom on my own feeling isolated. It affected my relationships and my self-esteem. It took a long time for my children for come to terms with MS and its challenges. I still do not think that they have fully come to terms with it, but on a day-to-day basis we get by with a sense of humour. I think is very important to be able to laugh at yourself with others.
Parenting challenges
I had five children when I was diagnosed in 2017, but the difference between parenting young children with MS and without it is huge! My youngest was two years old when I was diagnosed, and my son was three so all they have ever known is mummy in a wheelchair who is often very tired but does her best to make memories and be available for her children. It is harder for my three older children because they remember mummy walking and taking them down to the beach and having a lot of fun running around with them.
They often tell the younger two how their childhood was and my younger two get very emotional because they do not get to see that side of mummy. We find of a way to spend time with each other, and children are quite resilient and make the best of a bad situation.
Mum guilt
I would say life is what you make it. My biggest challenge, and it is for all parents, is the fatigue side and the guilt that you cannot go and be as active as other parents. I think that having a chronic condition like MS makes it very difficult to keep boundaries in place and keep routine because it’s such an unpredictable condition. I found I have to be quite flexible but try and keep the boundaries in place.
There is also the night tendency of children wanting to climb into bed with you and normally we would put them up to bed and be consistent with sharing beds, but when you throw in the MS fatigue you are battling having enough sleep anyway. I end up giving in and let them sleep in my bed. But that’s OK – no one should feel guilty about that kind of thing because there’s no handbook for how to parent with MS. I promise you your children won’t still be climbing into bed with you at 18 or 21 when they come in from the pub drunk! It won’t last for ever and you just need to pick your battles. I would also avoid the school runs because I didn’t want to embarrass my children by having a mum in a wheelchair. I worried they might get bullied. It turns out this was an irrational fear, and when I did get to the school the children very proudly said “this is my mum!” and they weren’t embarrassed at all by me which was such a confidence builder. There is a great truth in the saying children see beyond a wheelchair and they see you as a person.
If you’re newly diagnosed with MS and worried about your family’s future, know that this is very natural and normal because all you want is the life you’ve built up. All of a sudden you feel like your life has been turned upside down. Please don’t be worried – you just need to find a different way of doing things. I joke with my friends that parenting with MS is really hard, but I can go to bed at the end of the day and hold my head up high and say at least I got through the day and my children are still alive. You can only do your best and your best is always good enough. There is no right or wrong way to parents with MS, it’s about trial and error. Take every day as it comes, and the future will sort itself out.
If you have MS and are thinking about starting a family, I will say children are a light in a very difficult situation. As long as you’ve got all the right help and support around you and there’s plenty of help and adaptations so that you can parent in a different way. You’ve got this! I don’t think I would have coped with the ups and downs of MS without my husband’s sense of humour and my children keeping my life interesting with all the challenges that all different age groups bring.
I don’t know all the answers to parenting with MS, but with a good support network, you can muddle through. I would say, though, please speak to your consultants or MS nurses before considering having children because there’s certain medications that you’ll need to come off. It’s also good to talk the options through with a professional.
Find out more about our Parents with MS Peer Pod!
