This year has been tough. There have been many times throughout the illness and bereavement of loved ones, that I’ve desperately wished I could just ‘turn MS off.’ I wanted to be able to prioritise other people’s needs over my own.
Feeling guilty when I went for an afternoon nap
During the hardest times, I knew I needed to look after myself to reduce the worry, stress and pressure on those around me. But that was really, really difficult and very frustrating. I felt guilty every time I went for an afternoon nap, or didn’t go to the hospital, or didn’t offer to make tea. Yet actually everyone was very relieved that I was doing my best to be supportive, whilst still managing my MS.
So, I now realise that my friends and family really want me to tell them what I need when we’re making plans. They don’t expect me to be able to manage full days, or hectic schedules.
They want to know what I can realistically manage and make suggestions about how to organise our time together.
Making Christmas work when you have MS
My family have got together and strategically planned Christmas day. Not only to meet my needs, but those of my baby nieces and my great aunties too!
I'm travelling to my family on December 23rd. I won’t have my PAs, (carers) with me, so on the 24th my mum’s going to help me shower and do my hair. Then I plan to spend the day in my Christmas pyjamas!
Over the day I'm going to wrap cocktail sausages in bacon, stuff dates with marzipan and arrange the Christmas serviettes. It might take me all day to complete those tasks, but that’s ok. I will have helped to prepare Christmas dinner and that’s really important to me.
How I'll save my energy on Christmas Day
On Christmas Day I’m going to get up early, so mum can help me get ready before she puts the turkey on. I'll wash, but not shower, to save my energy. I’ll get dressed, then have a rest. We're going to open presents late morning and have Christmas Dinner at 1pm and then l can have my afternoon nap at around 3pm as normal.
I'm not going to help clear up after Christmas dinner. Normally l feel guilty when I’m not able to help out, but because it's 'planned' l feel much better! Instead of clearing up I’ll be having a nap, which means I'll be relaxed, bright and chirpy for the evening. And my family are happy knowing that I'm not going to 'over-do it' and make myself ill.
Working with and around MS
So, that's how l plan to manage Christmas. We’re going to work with and around MS so that my family and I have the most fun possible. I’m really looking forward to it! I fully appreciate that everyone’s circumstances are different and I know how much pressure and expectation there can be around the day. So I’m sending everyone lots and lots of festive love to you all - here’s to managing Christmas with MS.