I’m chuffed to share with you that something most of us with MS have been doing, like forever, has now been designated a zetigeisty trend – socialising lite.
Driven by impossibly busy New Yorkers/Londoners, this involves combining two or three activities to fit more into your life.
Or in our case, to ensure that we can still keep up with our friends/hobbies/interests despite fatigue and other pesky physical symptoms getting in our way.
The secret of socialising lite is to make your free time work for you. For people with MS, this translates as making those rare pockets of energy work harder for us. Even before I knew this was an actual trend (ooh, get me, chuck me a copy of Elle), I’d already started to do this – like combining catching up with a good friend and a shopping trip to town or asking my mum to help me in the garden, having a natter and putting the world to rights over a glass of wine afterwards. Killing two birds with one stone, but in a good way.
I miss doing what I used to do spontaneously, so this is a great compromise. Plus there’s an added bonus of still feeling that I’m part of life, of society. Spending so much time at home has made me more aware that I need to get out, even just for a short while.
A more extreme form of socialising-lite is time-capping friends, which at first glance might seem rude, but with all of us juggling busier lives it’s much more acceptable. Long gone are the days I’d go out for whole evenings, so rather than become a hermit (tempting), I say to my friends that I’d really love to see them, so how about we try that new wine bar/cafe/restaurant/exhibition and catch up for an hour? I get to see a good friend and try a new experience.
Time-capping doesn’t mean I don’t enjoy spending time with my friends, it just means that I don’t want to wait for both of us to be free for a couple of hours/when I’ve got energy/when I’m not pinned to the sofa with fatigue.
My next plan is to combine exercise and friends. So if anyone would like to pop over and join me in staring at my kettlebell (aka the doorstop), willing it to move by telekinesis, you’re more than welcome. You bring the biscuits, I’ll put the kettle on…
Hi I think an A+ for this 1, I’VE found that over the years friends have either died or moved away or because of my disability stayed away. The same with Vicki especially when she was confined to bed people stop visits then phone calls also email, Vicki’s old school friend & drinking partner’s visits became less gaps between became longer she would txt to say she would come, then turns up 3 months later (she lives 5 minutes away) even during Vicki’s last 15 days this friend only visited 4times. I was so angry. So as 1 #mser said you know who your friends are. After caring for Vicki for 5 years, to suddenly have all this time on my hands, able to go out and not have to rush back, I felt guilty. Now I have a new life, there are new people, a friend who shares wheelchair days out and I’m a neuro champion, but would love to turn the clock back. Sorry about this comment, but enjoy what you have I look forward to your new tweeting on Monday. As i have done this from my phone could you copy and paste and email it to me, and i will open a bottle of wine for you, thanks for letting me have a rant
Hi there David,
I think you’ve hit the nail on the head when it comes to certain friends and disability. I think most of us with MS have lost friends, I know I have. And the ones I didn’t expect!!
So good to hear you’re making a new life and please don’t feel guilty. Vicki sounds like she was an amazing woman and I’m sure she wouldn’t want you to stay at home.
Don’t forget – everyone can come here and rant whenever they want. In fact, I encourage it!
X
This is a great post – refreshing to see other people doing the same thing (and even better that it’s now hip!). I struggle on days/nights out to keep the momentum going, and because outwardly it looks like there’s nothing wrong with me, people never understand why I bail early. In fact, I often think they see MS fatigue as my lame excuse to be lazy or anti-social. So I definitely have lost friends along the way, and since moving to London in March, and struggling to make new ones. But your post is inspirational, so thank you! I’ll keep plodding on (literally and figuratively), and know that the very best friends will understand and still be there 🙂
Thanks Siobhan!
Such a lovely comment. I’m soooooo with you on people just not getting that it’s hard, because it looks like there’s nothing wrong with us. Gah. Does my head in.
Hope you’re able to get out and about more in London, fabulous place! And yes, your best friends will never abandon you, but sometimes we don’t really know who they are until we go through something like this.
I’ve lost so many friends, but have made excellent ones.
X