I had a very interesting chat about the early stages of my MS the other day.
One thing that cropped up again and again was how isolated I felt.
The foot-drop, the stumbling, the jaw-dropping fatigue – they all conspired to keep me at home.
I no longer socialised, preferring to invite my few remaining friends over to mine instead, where I could lounge on the sofa, safe in the knowledge that they wouldn’t judge me or the amount of tears I cried. Or how much cake I scoffed.
I went out far less and began to place internet shopping orders for everything – groceries, books, a radio, even a packet of batteries. My lovely squishy sofa became a hateful place where I spent hour after hour sleeping my life away.
My window was a torture instrument, displaying an endless reel of everything I was missing out on. My kitchen morphed into an obstacle course, showing off the ingredients that lay rotting in the fridge and languishing in the cupboards. Meals were ready-made and unsatisfying.
In short, my home became a prison, and the more I was isolated, the more I became isolated. It seemed a vicious circle and one I couldn’t find an escape from. I realised I was in serious danger of living my life from my sofa, comfort-eating, feeling sorry for myself and developing a serious lounge-wear habit.
I don’t often talk to myself, preferring to offload to the cat instead, but this time I gave myself a shaking down. This had to stop. I used to love my house – it was a place where I was bringing up The Teenager. I had stamped our style all over it; it was fun, bright, comfortable and, well, home.
Over the next couple of months, I ventured a little further out. Ok, I got tired, I tripped up. I dropped a whole cup of coffee over myself. I started to think, who cares? And why do I care so much? It wasn’t easy. It was painful and embarrassing, but the alternative, that looming prison-home was far worse.
Nowadays, I have accepted that life will never be like before. Spontaneity has gone, never to be seen again. The rules have changed and I have to change with them or be left behind. I’ve worked out my high-energy points and low-energy points and put them to good use. I accept there will be down times, when I have to rest or pay the consequences. I make the most of the up times.
My house has returned to it’s former state – it is a place I feel safe and comfortable in. I love it. I love my squishy sofa. I love my kitchen – it plays host to fresh ingredients and a sprinkling of ready-meals and they happily co-exist. I have a stack of books ready for when all I can do is slump on the sofa, as elegantly as possible.
And now, when I’m having a really bad MS week, I’m tussling with my house again. I have a pile of uni books to read and I could do with wrapping myself in clingfilm and lying down somewhere quiet in a bid to lose weight.
My house could be a prison, or it could be a safe haven I can return to …
I just want to say thank you so much for this post. It’s come at exactly the right time for me. My husband’s really ill and for some reason what you’ve written has given me some hope for my future. Thank you x
I’m really sorry to hear about your husband and wish him a speedy recovery.
It must be a stressful time for you – please look after yourself too.
Sending lots of love XX
Sorry to hear it’s been a yucky MS week. I can’t relate to all of this, as I am lucky in having my “rock” who has been there for me thru relapses etc. But, most of the housework can wait…it’s not the end of the world, even tho you are looking around and its getting you down. Talk to the mess, and tell it you will tackle it when you can!. But first, you need to slump on that squishy couch and rest!. Rest until you feel your energy has increased, but then don’t over do it!.let your house be your safe place regardless. Its not really a prison…think about it. You may feel you are locked in those four walls,but those four walls are keeping you safe. The most that will happen is, if you tumble and face plant the couch, so all safe and good!. So, keep safe in your lovely home, ask some friends to help with housework if necessary, and don’t sweat the small stuff. x
This is a really lovely comment, thank you!
I’m having a pretty awful day today and have been looking round the house from my sofa and starting to like it again. You’re so right when you say it’s the place that keeps you safe. It totally feels like that today!
The Teenager is at the gym (again) and it’s lovely to just sit in peace and quiet, knowing that by resting, I’ll be getting better.
p.s. Yup, the housework can wait!
You are welcome, and glad to hear it!. And the teenager and the gym – love his motivation!. My MS Nurse told me I could do more exercise apart from Yoga. Yeah, okay, comment taken. I keep looking at our rowing machine, give it a little dust, and think, maybe next week. ;).x
I really don’t know where he gets his motivation from!!
I’d love to do more exercise and my boss bought me a pair of walking shoes for my birthday lol.
They’re still box-fresh 😉
I feel exactly this conflict in myself
Sometimes home.is the only place I want to.be and going anywhere I don’t have to seems too exhausting. At other times I know that staying put is no good for my mental wellbeing and it’s becoming a rut. I still haven’t quite figured out how to get the balance right!
It is really hard to get out the rut. I was especially bad after my first course of Campath (watching the 2012 Olympics all day, every day). When the third course rolled around last year, I was determined to get out every day, even if it was just to the local shop. It made me see the house/prison with fresh eyes. It’s very tiring though!
Sorry that you are having a bad day but glad you are resting and not making yourself push on because I think sometimes thats the hardest thing to allow ourselves to do.
I’m lucky to have a dog who needs walking so that gets me up and out but exercise wise I’ve found some great apps to dip in and out of too as I’ve recognised that exercise helps my mood and just makes me.feel much more in control of my body.
I really, really want a dog 🙂 But as I work 6 hour days, part-time, I would be loathe to leave the little thing in the house alone. I even begged the boss to let me bring a dog to work but he said no, the customers probably wouldn’t like it!