Tag Archives: friends

We’re Bang On Trend

socialising liteI’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…

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How To Lose Friends And Alienate People

IMG-20130511-00150Having something as serious as MS enter your life changes it forever. Family, work, future plans, and of course, health.

Sadly, it also lets you find out who your true friends are.

Right from the start, cherished friends deserted my sinking ship just when I needed them most. Some left abruptly without a backwards glance, others backed away slowly, step by step.

Why? I guess there are many reasons. Were they worried they’d be roped into looking after me? Would I rely on them more than usual? Were we now too different, too alienated from each other to have much in common any more?

Conversely, other friends rose to the challenge – they stuck by me through everything. They listened to me rant and rave, they wiped my tears, poured my wine and probably ended up knowing more about MS than they could ever have imagined.

Two years on, I thought nothing else could surprise me. I have a fantastic circle of friends and I hope I’m a good friend to them too, and as the MS crisis has receded, our relationship has re-balanced itself.

A couple of weeks ago, my world was rocked once more. An old friend got back in touch. We met years ago in work and although we only kept in touch sporadically, we always picked up where we left off.

We chatted by text and I suggested he look at my blog to catch up with everything that had happened since we last spoke. And that was the last I heard from him.

I feel hurt. Actually, I feel extremely hurt. And angry. The ripples and repercussions from MS are still going on, two years down the line. Now I’m semi-housebound once more after falling last week, I have too much time on my hands to reflect on this. And do you know what? It’s all good.

Those ‘friends’ who’ve left have made way for even better friends. They took their hang-ups and made space for new friends to fill the void.

If any of my friends ever face a situation like I have and I’m not sure how to handle it, the least I can say is, ‘I don’t know what to do or say, but I am here for you, you know that.’ And that is the mark of a real friend.

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Blogging Is The Best Therapy….

Blogging is weird. I started my blog last September. At the beginning it was a much-needed outlet to download my buzzing mind and create some sense out of the whirling thoughts, fears and expectations tied up in a life with MS.

I read a blogging instruction manual from cover to cover. I’m no techie, but I found a blog theme I liked, uploaded a picture and hesitantly wrote my first post, ‘The Loneliness of The Long-Term Diagnosis’ and I was off. I wrote about make-up, round robbin letters, work, emotions, The Teenager, my cat. I wanted to show that living with MS is not solely about symptoms, appointments and restrictions.

Ultimately, most of us are young-ish when we are diagnosed. We’re in the middle of bringing up our kids, working, studying, carving a niche in the world. MS could be re-named, ‘Life, Interrupted’. I wanted to show that life does goes on, albeit in a more serious, more measured manner. Saying that, I wanted to pull out the humour. Tease the threads of how life is different, yet essentially the same. We still worry about exactly the same things, just with a skewed slant.

I was shy when I told people I had started a blog. I had five views a day. Ultimately, I saw the blog as a diary, and perhaps a present I could give to The Teenager when he was old enough to understand. I promised myself I would write for a year only, until September 2013. A year with MS.

Then everything changed.

Life suddenly got more serious. I ‘lost’ my job. I was betrayed by a ‘friend’. I was in a pretty bad place. Blogging took on a whole new meaning. I joke that it kept me sane, but really, it did. The support I had was/is incredible. I used to be dismissive of the ‘blogging community’. Who needs it? I have great friends, right here, on my doorstep.

Ah, but. Connecting with people from around the world, all of us finding ways to live with this vile, cruel disease, has been (words fail me).

So, to all of you who have supported me, made me laugh out loud at your comments, sent me a cheery Tweet – Thank You. Yup, a soppy blog post…..

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Help! Do I Need a Wantologist?

Thanks to MS, my life-plan is all up in the air right now, so what I need is a ‘wantologist’, right? Yup, the latest craze from California is to get yourself a wantologist, an offshoot of a life-coach. Originally devised to help business managers make purchasing decisions, could this be the Holy Grail I am seeking?

Apparently, the first step is to think about what you want, then decide if you are ‘floating’ or ‘navigating’ towards your goal. Seriously? After that, you have to describe how you would feel once you have what you want. People pay for this?

Ok, so assuming I find a wantologist in the Yellow Pages, can you imagine how my initial session would go?

‘Right dear, mind the incense stick, oh and watch out for the candle. Now, sit down, clear your mind and breathe deeply. Concentrate on what you really, really want. Can you tell me?’

‘A cure for multiple sclerosis, please’.

‘Oh. How would you feel if you had a cure for multiple sclerosis?’

‘Um, healthy?’

‘And how can you attain this goal?’

‘Raise money from bake-sales to help fund vital research?’

‘And how would that make you feeeeel?’


‘Are you floating towards that goal or navigating?’

‘Well, I’m feeling pretty floaty on that incense’.

‘Ok. You go away and make some cakes; navigate towards that goal! You have the inner strength! You can do it! Now, that’ll be £95 please. We take all cards’.

I have ‘wantology’ conversations with my friends and family all the time. We all do! I’ll chat to my friends about what job I want, which pair of shoes I should buy, which shade of lippy suits me best. Through chats over coffee or wine, we put the world to rights and sort out thorny issues, they help clarify the jumble in my mind. I don’t need an expert to replace that.

Mind you, with my sticky job situation at the moment, I’m tempted to take the two-day (yes, really!) training course and set myself up as one. But how would it make me feel? Shall I float or navigate?

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Sore All Over, But Happy

This building lark, eh? It all looks so easy. Long tea breaks, late starts, leaving early and banging a few nails in here and there. Well, I think I landed a job with the strangest builder ever. He does not stop. He does not take tea breaks. He eats lunch on the go. And I had a 7 am (!) start.

My first day on the job and we are renovating an old country pub into a house. All I have to do is knock down a few walls and tidy up. How hard can it be? Well, I flung myself into the task with abandon, hammer moving so quickly it was blurred. Lathe and plaster flew in all directions, dust went everywhere and I filled black bag after black bag with rubble. So far, so good.

The owner was a wonderfully eccentric lady, who for some reason insisted on calling me Alan. For the record, I have shoulder-length blonde hair and do not have a moustache. I managed to bring down most of the wall by just after lunch (a packet of Fridge Raiders eaten on the go), but when I finally stopped for a break, everything – and I mean everything – ached. I was using muscles that haven’t been so much as gently twanged in years.

The upside is that I stood outside at one point and just breathed in the fresh air. It was an amazing feeling to do such physical work, after over a decade in an office. There’s something to be said for being able to pop outside and just be still for a moment and it was good to chat away about something and nothing with my friend – no office politics, just having a laugh.

The downside is the fact that MS never takes a break. Whenever I got too hot, I had to cool down. My feet buzzed incessantly. I started to get electric shocks in my neck. But if I had to weigh it up, I would say that the symptoms were worth it. Ok, every single part of me is sore. I feel like I’ve been run over. But MS can make me feel that way too.

I am working today too, then I’m off for three days. The Teenager has made it safely to London and he didn’t find my Twiglets. Life is looking good.

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