Tag Archives: multiple sclerosis

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 17 2015
4 Comments
Symptoms and Treatment

System Shutdown – Prepare to Standby …

shutdownYou just know, don’t you?

As soon as you wake in the morning, get up and fall smack into the nearest wall, you just know.

MS is not only content with corrupting your system, it’s staging a total takeover bid.

I had one of those days yesterday.

Usually, I can keep stuff under wraps, get on with life despite the inner physical and mental turmoil that MS brings. Not so on one of those days.

My vision was blurred, I was exhausted and I felt utterly, totally crushed. I could feel my brain shutting down to Basic Mode.

Inside, I was horrified. Worst case scenarios were filtering into what was left of my brain. My main aim was to get through the day and still appear relatively normal to The Teenager; so long as I could nod and smile in the appropriate places, hand out some money and put a wash on, I was covering all bases.

The Teenager had other ideas: he fancied a heart-to-heart about the football relegation zone, who was headlining the Reading Festival next year (gah) and the merits of various protein shakes. I nodded and smiled in the appropriate places. I think.

I fell asleep on the sofa at 10am and woke up three hours later to find a glass of squash with a post-it note from The Teenager attached, reading, ‘Good Morning! (smiley face)’.

Later on we had the Loose Jeans Drama. He was going out for a sixth form party. He got dressed (over several hours). Finally, he came flopping down the stairs, arms swinging loosely, an angry look on his face.

‘Look, just, like, look.’

‘Oh. Very nice dear. You look lovely.’

‘No. I don’t. Look. I can’t go. Looks stooopid.’

Pause. His hair? His shirt? Not enough Lynx? Too much? I had to be very, very tactful.

‘Er, you look, well, so handsome.’

‘Yeah, right, mums always say that, like, d’ur. Noooooo. My jeans.’

An hour-long drama cut short, he has lost a lot of weight at the gym. His jeans are loose. Very loose.

‘Well, it just shows off how much weight you’ve lost? Hmm? No?’

‘Ahhhhhh. You just don’t understand. Can I have a tenner?’

He left in a whirl of Facebook updates and texts, cursing his jeans. I collapsed. I have no idea how I survived the day. A day spent doing nothing except lying on the sofa, unable to concentrate, frightened and hoping that tomorrow would be different. It was an MS blip. We all have them?

I lay virtually unmoving until 9pm and crawled into bed. I slept for nine hours straight, woke up, didn’t trip into the wall and life looked a little, only a little, brighter. For now.

As for The Teenager, he had a great time at the party, even with loose jeans.

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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 11 2015
4 Comments
Symptoms and Treatment

Give and Take

backflipIf I could do backflips and turn cartwheels, I would.

For the first time in over four years, I have zero nerve pain in my legs. It’s nothing short of a miracle.

Yesterday, after consultation with my MS nurse and GP, I doubled my dose of Pregabalin. Within hours my legs felt, well, normal. I prodded them, stood up, sat down, walked across the room.

Ah. Of course. As with anything MS-related, it gives with one hand and takes with the other. Sure, I could feel my legs, but my balance was shot. I staggered around the kitchen, unaware The Teenager had snuck up behind me for a fridge-rummage.

‘Wha’s up with you, muv?’

‘S’alrigh’. Meds. Strange.’

‘You’re talking funny.’

‘Yar.’

‘Can I have a tenner for the cinema tomorrow?’

‘Erm, yesh.’

I was slurring my words. My head was spinning and I felt drugged. The Teenager found the last yoghurt I’d been hiding behind the jam and wandered off, tutting.

I flopped onto the sofa, polished off the chocolate Buttons and tried to think. Pregabalin is also prescribed for Generalised Anxiety Disorder as well as neuropathic pain, so I guess that’s where the drugged, cotton-wool-brain feeling came from. It can also affect balance and speech. Excellent.

I weighed up the pros and cons. The nerve pain is manageable during the day, excruciating at night. I’ve spent hours whimpering on the sofa in agony, unable to concentrate on anything. Whole evenings have been wasted. Could I swap this for a spaced-out feeling? Would I trip more than usual?

I’m going to give it a go.

The pain in my legs has defined my life too much and is a constant MS-memento. Unfortunately I still have the numbness in my feet, so the foot-drop is here to stay and sometimes I can’t feel my feet at all, although the pavements are there to remind me as I trip over yet again.

So for now, I will ricochet around the house, falling over the rugs and the cat, but I won’t mind so much as my head will be floating around somewhere else. I haven’t been outside yet – I’m about to get ready to take The Teenager to town for lunch.

Should be interesting?

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