In her latest guest blog Joanne ponders on Christmas, multiple sclerosis (MS) and ‘me time’...
Like many of us, a #christmas #break was on my list but didn’t happen.
For the simple reason, there has been too much going on. The family has been battling bugs (which has made my #MS rubbish), many festivities with late nights, #travelling, #family politics and eating indulgent food. It has all had a toll. All adding up to putting my #writing on the back burner.
Many recent events can be put down to MS. My rubbish #walking (I’ve realised Prosecco doesn’t help, despite it tasting nice), #speech sounds like I’m drunk (I’m not but everyone assumes I’ve had a few!) #spilling drinks (more noticeable at this time of year when transporting from the kitchen to guests) breaking wine glasses which need clearing up (another sign that things aren’t right) and #forgetting important things like turning my Dad’s home upside down as I convinced myself that I’d lost my wedding rings (they were back at home). I’m also contending with lots of pain.
You can say I’m just a clumsy, forgetful cow and despite resting, I’ve probably pushed myself too much, resulting in the MonSter coming out.
Christmas has made me realise how real MS is. OK, so I knew MS was real. There has been lots of tears. Tears because I know this is my reality as I’m so frustrated. Like a well known sports brand “just do it” is what I want to be like, what I was previously to #multiplesclerosis but I can’t “just do it” because of this stupid disease. My body has given up. As that advert says, we are in that Christmas limbo period, when we’re probably having a break before new year. I’m sat in my pjs (it’s 4pm, hopefully no one is coming around), watching Christmas television on catch up and doing very little because I’m exhausted. I’m getting my break now.
So with a #newyear on the horizon, reflection in the air, what do I want differently for #2018:
Do the best you can
MS is a daily battle but remember you only have one shot at being you. Tears have come and gone. I will have good and bad days but doing the best I can is the only option.
There’s no magic pill to pop for MS (I’ve been told take this or eat that). Nothing cures, it may help, who knows. Fatigue for me, feels like I’m swimming in thick chocolate (there is probably too much of it at this time of year!) Recharging doesn’t cure MS fatigue but helps. I wrote my tips for managing #fatigue as a mummy with MS for the #MSSociety. I said “MS is like having a battery that can’t be fully charged, so know your energy drainers, those things that just zap the life from you”. Christmas is an energy drainer. But I know next Christmas (or any big event) has to be different.
Don’t put pressure on yourself
In my past #writing, I’ve talked about this. I feel guilty for having no energy. I will continue to remind myself to cut some slack, especially as next year comes with more of little man’s milestones. I live with MS, that’s pressure enough.
This links with the previous point. This year has been full of acceptance. I’ve had grab rails, a walking stick, Blue Badge and a EDSS scale of 6 ( I had to google too!) All physical reminders that I’m no superwoman (I probably wasn’t before MS although I thought I was!) Life might be tough but accept all help and adjustment. Anything for a better life.
More ‘me time’
This year, #stleonardsyork have been great giving me more “me time”. I’ve tried #arttherapy, #laughteryoga and various treatments like #reflexogy. With my weekly stint of #pilates, I will plan in more “me time” for next year. Everyone deserves it. This year, I’ve used writing as my therapy. I will continue to. Thank you to everyone who believes in me. All there is to say, is have a fab 2018. Let’s hope it’s full of love, health and happiness. And sod resolutions!