Category Archives: Emotions

Dec 31 2015
32 Comments
Emotions

You Do Not Have To Be Alone With MS

aloneOn the cusp of 2016, this is a post to thank everyone for their wonderful support for me and my blog over the last three years.

You’ve watched me grow from being bullied and sacked simply for having MS, changing career, coping with three courses of Campath, going back to university and most importantly, bringing up The Teenager despite MS.

 

MS can be a lonely, frightening and isolating illness.

It doesn’t have to be.

If you are reading this and you are feeling alone, please reach out. There are fantastic Facebook groups, tweeps on Twitter and blogs you can connect with. It can be a relief to be amongst people who just … understand.

Whether it’s making sense of foot-drop, cog fog, wibbles and wobbles, there’s a lot of us who know exactly what you’re talking about.

Personally, I don’t know where I would have ended up without the help and encouragement I’ve had from other people – my blog has been a lifeline. Every single comment has helped and I can’t begin to thank you all enough.

My wish for 2016?

I don’t want anyone with MS to suffer in silence.

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Dec 19 2015
8 Comments
Emotions

So You Can’t Miss What You’ve Never Known?

Dad2It’s strange.

I grew up ‘knowing’ my dad died of MS.

I was guided to a window shortly after his passing and shown him travelling to heaven.

A lot of people get angry when I tell them this  – you don’t die from MS.

Well, back in 1978, you did.

There were no MRIs, no disease modifying drugs, nothing.

Technically, he died from a complication arising from his MS; in my mind, he wouldn’t have had this complication at the age of 35, without having MS. Which came first?

So, yes. It was normal to grow up with one parent. I missed him at seminal points in my life and often wondered how he would laugh, how he would hug me, how he would sit down with me and put the world to rights. How he would protect me. I strove to bring the photograph to life to no avail.

When people found out my dad died when I was four, they were sympathetic, of course. And I would reply,

‘You can’t miss what you’ve never known.’

I was adamant. A protective mechanism?

I now stand corrected. You really, really can.

At 37, broken and alone, I missed him more than anything.

Think of the conversations we could have had! I would compare symptoms, speak with someone who understood exactly what I meant by ‘fatigue’, ‘nerve pain’, ‘abject terror’. He would have held my hand and understood.

When I was going through the diagnostic process, I felt closer to that figure in the photograph than never before. Now I knew. Now I had an inkling of what he had gone through.

It was this that made me choose Alemtuzumab as a treatment option – I was going to blast MS with everything my dad never had. Call me sentimental.

On this sentimental strand, I would like to think he would be proud of me and all that I have achieved, despite MS. Sure, I have collapsed, reached rock bottom and felt like there was no tomorrow.

But everything I have done since, whether it is making The Teenager toast or writing a book, it is all with my dad at the back of my mind. According to others, he was intrepid, fearful of nothing.

I would like to think I have picked up where he left off.

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Dec 13 2015
10 Comments
Emotions

I Like Long Walks On The Beach …

me… I also enjoy cosy nights in front of a log fire, watching a romantic dvd and snuggling up with the one I love, the snoogly-woogly peep.

Don’t we all?

Especially when we’re writing dating profiles. Is there anything worse?

My first attempt was at least honest:

‘Slightly, chubby, divorced 42 year old with stroppy Teenager and confused cat seeks soul mate. P.S. I have MS. Apply within.’

I didn’t post it.

Now I am of a certain age, and have been single since being brutally dumped when I was first diagnosed with MS, I think it would be kind of nice to have a Significant Other.

Someone to share a croissant and hot chocolate with? Maybe we could browse around a second-hand book store before linking hands and wandering to the nearest cafe. We would navigate the cobble-stones and laugh when I tripped. Again. We would exchange smug, knowing looks.

He would Understand. He would smile at my speech hiccups, when I swap consonants and slur (just a little). My Scottish accent would of course win him over. He would take my arm and guide me when he saw that I was weaving around like crazy.

I can picture him, rugged face, scarf (I know, weird, huh?), piercing eyes. If you find him, please let me know.

Back in the real world, I have read all the advice. First and most importantly, the majority of people meet the love of their lives in work. Last Thursday I was surrounded by nine men. I was quite overwhelmed at one point and had to take a Diet Coke break.

However. Four were scaffolders (all married), three were solar panel electricians (all married, one unhappily), two were plumbers (both married).

So that’s a no-go then.

Next piece of advice is, ‘talk and interact with everyone you meet, they may just surprise you!’

Erm, ok.

I went to the Co-Op and lurked around the steaks. Aha. A man. ‘Um, garlic butter or just, you know, butter?’ I asked, with an artfully-raised eyebrow. He scarpered. I was the strange person in the steak place. It’s come to this.

I slunk home, defeated.

I re-wrote my profile: ’42 (but don’t look it), divorced (happily), one Teenager and no cats. MS. Apply within.

So far, zero replies. But you never know?

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Dec 02 2015
2 Comments
Emotions

Pre-Relapse Stress Syndrome

worryAnyone else have Pre-Relapse Stress Syndrome?

After a rocky road back to some sense of recovery following my third course of Alemtuzumab in September, I am once more mired in my usual emotional mode – worrying about when the next MS relapse will strike.

Considering my last relapse began next to the hot-dog-and-fries stand in Ikea, I have reason to worry.

One minute I was holding a well-thumbed Ikea catalogue in one hand and a hot-dog in the other when splat, I was catapulted into outer MS space, floating around, my legs turned to jelly, my brain to mush.

I dropped the catalogue, but managed to hold on to the hot dog as I tried to tell my mum something was very, very wrong and it had nothing to do with the ketchup pump being out of order.

I don’t know why I was so surprised. I’ve had relapses start in random places before – walking up a garden path, sitting in a cafe eating a slice of carrot cake, in the middle of a book shop.

And there’s where the stress lies; it’s the Not Knowing. You can’t make a contingency plan. It’s a bit like having an MS UFO permanently hovering around just waiting to zap you up, mess around with you and spit you back out again.

I try to get on with normal life – my usual routine provides the solid framework I cling to. If there’s something I begin to struggle with, I’m suddenly alert. Dropped a cup? Poured boiling water over my hand? Walked into a wall? (hello again).

It’s not a great way to live, but it brings me back to mindfulness I wrote about in my last blog post – taking and experiencing life as it comes. Not projecting forward, just remaining in the moment. Om.

It’s definitely harder than it sounds. The slightest thing and I’m panicking. The relief when an episode comes to nothing is immense.

As it goes, I haven’t been back to Ikea since February. The trauma is still raw.

But. I could really, really do with ordering a family-sized hot-dog meal and eating it all by myself.

I blame the thyroid meds.

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Nov 28 2015
8 Comments
Emotions

Mind Full?

balloonI don’t know about you guys, but when I wake in the morning, the first thing I do before tumbling out of bed, is mentally scan my body.

Recently I’ve been waking up with completely numb hands, so I wave them around for a bit until they return to normal.

Weeks ago, it was cramps in my legs (I didn’t wave them around – too energetic. And weird).

I use the waiting time to take a few deep breaths and compose myself for the day ahead.

Downstairs, when I fill the kettle, I think about the kettle and only the kettle, after dropping it one too many times. Ditto my mug; my mind is purely on the task at hand.

Fast-forward the day and when I walk to the car, I carefully place one foot in front of the other, ready for the inevitable foot-drop (whoops, there it goes). I am totally aware of my surroundings.

So it was interesting to read an article recently about the benefits of mindfulness for coping with MS. The exercises were spookily similar – being totally aware of waking up and getting out of bed, concentrating on every movement. Yup. Making a cup of coffee – concentrating on every movement. Yup. Walking. Yup.

Whaddya know? I’ve been effortlessly mindful since I was diagnosed. In a way.

I remember telling someone a while back that one of the ‘benefits’ (and I use this word loosely) of MS is that it concentrates the mind – on what is important and what’s not worth bothering about. I started shrugging off earlier niggles and annoyances. I started being thankful for small pleasures.

It helped that my brain went into jelly-mode and could only handle so much information at one time and when you’ve got a limited Brain Space, you just want to fill it up with good things. I did an inventory of my life and chucked out the dreck.

I began to be mindful of how I wanted to live my new life with MS. This is where writing comes in. I adore it. I live and breathe reading books, newspapers, menus, Ikea catalogues, anything. I always wanted to write but always doubted I could. MS created that space.

So I’m trying to use and build on this mindfulness. However, there are still certain things I will never be able to do, no matter how mindfully I apply myself to the task – creating the perfect sweep of eyeliner, using one of those stove-top Italian coffee pot thingies, cutting my own fringe and baking the perfect brownie (just ask The Teenager).

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