Category Archives: Emotions

The Joy of Simple Things

I am surprised to find myself writing this, but there is a lovely, positive side effect of living with MS. Honestly! Of course, it goes without saying this is apart from being in touch with all the fabulous MSers I’ve met through meetings, Twitter and the blog.

I wandered round my favourite charity shop yesterday and picked up a whole pile of books. Regular readers will know I adore reading and am in the middle of setting up an MS book club – Reading Between the Wines. So I took them home, stacked them neatly on my bedside table and sighed, blissfully. So many books to read. It only cost me a few quid, but put a huge smile on my face.

This got me thinking. Pre-MS, my focus was wide and long-term. I would plan my career, The Teenager’s education and hobbies, my studies, my ambitions, my fears, etc. Unwittingly though, I skipped over all the small things that make life so pleasurable and worthwhile. Now, even though I still plan long-term, MS has also narrowed my focus in unexpected ways.

It started with the daily grind of getting through each new relapse. Life suddenly zoomed down to whether or not I could get off the sofa. Anything else was incidental. Would I be able to walk down the street without tripping? Would I be able to cook dinner? Could I manage to put the bins out?

But then something strange happened. Every time I was able to do something small, I felt a huge sense of achievement. Which is rather sad, as often it was only something as simple as making beans on toast, or navigating a wonky trolley round the supermarket. But I still celebrated the small stuff.

Since Alemtuzumab treatment, my relapses have stopped (touch wood). I still have bad days, sure. But what this focus on the small things has left me with is an almost childlike appreciation of things I long took for granted – coffee and a catch up with a friend, reading the Sunday papers from cover to cover, walking in the snow, fixing the mould in the bathroom.

My life has changed for ever, and however cliched it sounds, I really do now focus on what I can do rather than lament over things I am no longer able to do. So thank you, MS, and I really do mean that.

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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?’

‘Happy?’

‘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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The End of The World or a New Beginning?

This could very well be my last ever blog post if the Mayans are correct. I haven’t managed to stockpile supplies for the apocalypse. It’s been difficult enough buying in extra food for Christmas, so if it happens and we somehow survive, we will be living on shortbread, Ferrero Rocher and white wine for the next week until the Co-op re-opens.

Assuming the apocalypse doesn’t go ahead as planned, today is a significant day. It is the winter solstice. I won’t be heading to Stonehenge in a flowing skirt decorated with bells and crystals, but I do think it’s a pretty special time. It’s the shortest day of the year, the slide into darkness is at an end and symbolically, this means an awful lot to me. Today is my last day in my old job and the less said about that, the better.

The solstice represents a rebirth. A renewal of sorts. The period of mourning for my old life, old job, old plans is now drawing to a close. I am buzzing with ideas and my confidence has been slowly rebuilt after being eroded by others over the last year. Life is looking brighter than it has in a long time.

I have been working from home for the last two months and for the last couple of weeks I have not done any housework bar the absolute minimum. Not because I’m a lazy cow (honest), but as a symbol of new beginnings, I am going to clean my house from top to bottom today. No more working from home, the house will once again be reclaimed as a sanctuary. I’m going to fling all the windows and doors open and let fresh air flood in. If it wasn’t raining, I would hang the duvets from the windows like they do in Switzerland, but a good fluffing will have to do.

Today then, marks the start of my new life. If I wake up on Saturday morning and the world is still here, watch out, because I’ve got my sassy pants on…

 

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Think Like a Comedian…

I was reading a column in a magazine about how to bring more laughter into your life. After the year I’ve had with MS, I could do with all the help I can get. Apparently, a top tip is to think like a comedian. If you’re standing in a queue or sitting on a bus, see the funny side and notice quirky things. Hmm. Well, ok, I could give that a try.

I went out to pick up my repeat prescription. As I was de-icing the car, a man zipped past in his electric wheelchair with a small dog on a lead. Semi-humorous as the dog couldn’t quite keep up the pace. In the chemist, I queued up behind a man with a hacking cough and a little old lady carrying two massive shopping bags asking about what she could take for diarrhoea. By the counter, there was a whole rack of information leaflets about bowel cancer, breast cancer, giving up smoking and the flu jab. Not so funny.

Next, I went to the supermarket for some coffee and yoghurts. I scanned the aisles and found nothing remotely funny except for some oddly-shaped carrots and a dodgy looking aubergine. At the check out, the woman who served me was telling me they’d already caught one shoplifter that day and it was only 9.30am. They had stolen an Ardenne pâté Christmas gift pack and a bottle of red wine. Classy shoplifter! My first witty observation. I was pleased.

Feeling buoyed up by this, I went for a coffee. A quick Americano with an extra shot. Had a furtive look round. Nope, nothing funny except a few toddlers trying to crayon the floor. In the charity shop next door, the only funny thing I could find was a nodding-head reindeer, but even that was a bit wonky so I didn’t buy it.

Comedy moments seemed to be a bit thin on the ground, so I headed back home. In the post, a few bills, a pizza leaflet and a Scout post Christmas card from someone I vaguely know. I picked up the article again and looked through the other tips. Maybe I should take up their suggestion of ‘thinking outside the box’. This involves forgoing your favourite restaurant on your next ‘date night’ for a night in a casino instead. Random! Only problem is, I’d have to find a boyfriend first, and at my age, that’s no laughing matter…

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Who Cares?

I went to an interesting and well-organised conference last week which focused on services for carers of people with MS. A whole range of organisations were represented and I went along as I trained as an MS Society support volunteer. I am passionate about newly-diagnosed people and their families having access to services and groups and my role is to signpost them and provide a friendly ear, as someone who has been through the system.

We all met for registration, coffee, croissants and a catch up then went through to the conference. There were some brilliant talks and insights and so far, so good. Then something happened which had me in bits. A very young teenager took to the stage to explain what it was like to be a young carer for her mum, who has MS.

Halfway through speaking, the girl was overwhelmed with emotion and began to cry. The entire room was hushed and stunned. Although she seemed to be supported by some charities, it was clear this was a girl in danger of a nervous breakdown. She went to school after helping her mum and worried the whole day about whether she had fallen or was in need of help. She had been bullied at school too, which research shows happens to almost 70% of young carers. There are 175,000 young carers in the UK, with 13,000 of them caring for over 50 hours a week.

Like most newly-diagnosed people, I was horrified at the thought of my son becoming my carer, and touch wood, I am lucky. I don’t need to ask him for help and although he is aware a I have good days and bad days, I get along with support from my family and friends. With the  Alemtuzumab treatment I had, I will probably not need ‘care’ for the foreseeable future, if at all.

The girl’s dignity and courage was astounding and I hope hearing her plight will spur others to find her more help. Four days on from the conference, she remains in my mind. I feel churlish complaining about my tiredness or weak arms.

If anyone knows a young carer, please reach out. They need care too.

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