A YORK mum is making a name for herself as a mummy blogger with a difference, by writing about parenting while living with chronic illness.
WHEN Joanne Chapman was planning her wedding she found herself being charmed by how beautiful all the venues were.
But she had some practical considerations. She would need a break between the wedding breakfast and evening do. And would there be a place for her to sleep in case she got too tired?
Just nine months before she got married, Joanne was diagnosed with relapse remitting multiple sclerosis (MS), a condition of the central nervous system in which the coating around nerve fibres is damaged, causing a range of symptoms.
The news was a blow, but also a welcome explanation for the sight problems she'd suffered for 18 months, as well as exhaustion and balance difficulties.
In the end, her wedding (pictured above by allanscottphotography.co.uk) at the Merchant Taylor's Hall went exactly as she'd hoped, despite her worries. And when they look back, the day was made even more special for Joanne and her husband, as she was sixteen weeks pregnant.
"The biggest worry was how I was physically on the day," Joanne said, "How would I be walking down the aisle? Would I stumble, would I have trouble standing, shake at the register signing, do the first dance like a buffalo and what if I had a relapse beforehand? I think these worries are natural for a bride with MS.
"Everyone knew about my condition even the vicar, so I tried not to worry."
More than 100,000 people in the UK have MS, with symptoms usually starting in people in their 20s or 30s. It affects almost three times as many women as men.
For Joanne, a way to cope with the uncertainty MS had brought into her life was by reading as much as she could about it. And when she became pregnant she read as much as she could about having a baby.
When her son Monty, now two, arrived soon after the wedding she began to search online for information about parents living with chronic illness, and found nothing.
"There wasn't really anything that targets mums that have chronic illness," Joanne said, "There's lots on being a parent or on chronic illness but there's not really anything that marries the two. There wasn't anything that covered looking after a little one and having MS."
Having been made redundant while she was on maternity leave, Joanne began to think about filling the gap herself.
She set up a blog, Poorly Parents, and got in touch with the MS Society to ask for their advice on writing opportunities.
Months later she was surprised to be asked to write for their magazine, MS Matters and she currently writes for other MS websites Her focus is how parents can look after themselves to be the best possible carers to their children.
"MS can be quite an isolating condition because it's not something you see," Joanne said, "There were many times I thought how can I do this? You just want to go to bed and you feel awful. But being a mum you have someone far more important than you to take care of."
Now Joanne prioritises planning ahead to avoid becoming too exhausted and gratefully accepts help from supportive family members.
As for her son, he is completely accepting if she has tired days. "My son knows no different because he lives with me, I don't think it has affected him from a mother/son perspective," Joanne said, "He accepts my tiredness. "I’m no expert on being a mummy to little man or having MS, but every day brings its challenges."
Joanne's tips for managing fatigue
As a mum living with relapsing MS, I struggle with fatigue. For me, it feels like I’m swimming in thick chocolate (I can dream!) and usually I can’t carry on. How do you look after a little person when it’s hard enough to look after yourself? These are the things I’ve found helpful.
1. Don’t put pressure on yourself Maybe you feel guilty that you’re shattered when you should have energy. Remember, you are living with MS, you don’t need to put any more pressure on yourself. It took me a long time to get my head around this.
2 Know your energy drainers Those things that just zap the life from you. Little man is like one of those battery bunnies, with all the energy that I don’t have. I sit on the sofa while playing with him, so whether it’s cube stacking, jigsaws, throwing balls, watching probably too much toddler television, you name it, we do a lot of it with me sat down and little man, the whirlwind, running around.
3 Rest MS is like having a battery that can’t be fully charged. A rest doesn’t make it go away but it does help. After being busy or having others around, especially at the weekend, I plan rest times. On Mondays, I don’t plan anything. I try not to feel guilty, so little man and mummy have a slobby day. I get frustrated that any activity feels like walking up Kilimanjaro, but you have to pat yourself on the back for at least trying. We have MS! If you don’t feel like doing it, that’s fine too.
4Ask for help Looking after little man has made me realise that you can’t struggle on. Asking for help is not sign of weakness. I spent a lot of time refusing help, but then I realised I had to ask. MS fatigue is such an invisible disability. Educating yourself and others is important but if some don’t listen, don’t take heart.
5Do the best you can MS fatigue can feel like a battle, a daily one for me, but remember you only have one shot at being a mummy and doing the best you can is the only option.
(Reproduced with the kind permission of MS Matters, a magazine produced by the MS Society)
- Read more from Joanne at poorlyparents.wordpress.com
Factfile: Multiple sclerosis
- Multiple sclerosis (MS) is an autoimmune condition which can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
- It's a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild. In many cases, it’s possible to treat symptoms. Average life expectancy is slightly reduced for people with MS.
- It's estimated that there are more than 100,000 people diagnosed with MS in the UK.
- It's most commonly diagnosed in people in their 20s and 30s, although it can develop at any age. It's about two to three times more common in women than men.
- Multiple sclerosis (MS) can cause a wide range of symptoms and can affect any part of the body. Each person with the condition is affected differently.
The symptoms are unpredictable. Some people's symptoms develop and worsen steadily over time, while for others they come and go.
- MS starts in one of two general ways: with individual relapses (attacks or exacerbations) or with gradual progression.
- More than eight out of every ten people with MS are diagnosed with the "relapsing remitting" type.
Someone with relapsing remitting MS will have episodes of new or worsening symptoms, known as "relapses". These typically worsen over a few days, last for days to weeks to months, then slowly improve over a similar time period. Relapses often occur without warning, but are sometimes associated with a period of illness or stress.
- Just over one in ten people with the condition start their MS with a gradual worsening of symptoms.
In primary progressive MS, symptoms gradually worsen and accumulate over several years, and there are no periods of remission, though people often have periods where their condition appears to stabilise.
- The York branch of the MS Society can be contacted on 01904 758577 or by emailing firstname.lastname@example.org