Safe Haven or Prison?

homeI had a very interesting chat about the early stages of my MS the other day.

One thing that cropped up again and again was how isolated I felt.

The foot-drop, the stumbling, the jaw-dropping fatigue – they all conspired to keep me at home.

I no longer socialised, preferring to invite my few remaining friends over to mine instead, where I could lounge on the sofa, safe in the knowledge that they wouldn’t judge me or the amount of tears I cried. Or how much cake I scoffed.

I went out far less and began to place internet shopping orders for everything – groceries, books, a radio, even a packet of batteries. My lovely squishy sofa became a hateful place where I spent hour after hour sleeping my life away.

My window was a torture instrument, displaying an endless reel of everything I was missing out on. My kitchen morphed into an obstacle course, showing off the ingredients that lay rotting in the fridge and languishing in the cupboards. Meals were ready-made and unsatisfying.

In short, my home became a prison, and the more I was isolated, the more I became isolated. It seemed a vicious circle and one I couldn’t find an escape from. I realised I was in serious danger of living my life from my sofa, comfort-eating, feeling sorry for myself and developing a serious lounge-wear habit.

I don’t often talk to myself, preferring to offload to the cat instead, but this time I gave myself a shaking down. This had to stop. I used to love my house – it was a place where I was bringing up The Teenager. I had stamped our style all over it; it was fun, bright, comfortable and, well, home.

Over the next couple of months, I ventured a little further out. Ok, I got tired, I tripped up. I dropped a whole cup of coffee over myself. I started to think, who cares? And why do I care so much? It wasn’t easy. It was painful and embarrassing, but the alternative, that looming prison-home was far worse.

Nowadays, I have accepted that life will never be like before. Spontaneity has gone, never to be seen again. The rules have changed and I have to change with them or be left behind. I’ve worked out my high-energy points and low-energy points and put them to good use. I accept there will be down times, when I have to rest or pay the consequences. I make the most of the up times.

My house has returned to it’s former state – it is a place I feel safe and comfortable in. I love it. I love my squishy sofa. I love my kitchen – it plays host to fresh ingredients and a sprinkling of ready-meals and they happily co-exist. I have a stack of books ready for when all I can do is slump on the sofa, as elegantly as possible.

And now, when I’m having a really bad MS week, I’m tussling with my house again. I have a pile of uni books to read and I could do with wrapping myself in clingfilm and lying down somewhere quiet in a bid to lose weight.

My house could be a prison, or it could be a safe haven I can return to …

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The MS Olympics

ringsI’m enjoying the Olympics.

I’m also thinking, ‘you think that’s hard, try juggling The Teenager, Work, Studying and MS. Pah.’

Honestly though, I’m not really so mean-spirited, but I do sometimes think I put in an Olympic performance most days. We all do, don’t we?

If MS could be an Olympic sport, it would surely be the hurdles; you’d be standing there looking at a sea of impossible things to get over safely and with dignity intact.

Sadly, that’s not always the case; I would probably stumble flat on my face at the first hurdle, lie there for a while staring at the sky, humming gently to myself and let everyone else overtake me. A bit like life really.

Mind you, I think my performance could be vastly improved if I had access to an Olympic network of nutritionists, physios and mind-training-coaches. Plus a little bit of sponsorship wouldn’t hurt either – I would quite happily wear a discreet logo (or even a huge one) if it meant I had a few grand in the bank.

It’s interesting listening to the competitors speaking to the news broadcasters straight after their performances, especially when they lose – ‘I gave it my all, but there wasn’t anything else I could do really. I gave it 110%.’ How true. I need to bear this in mind when I come up short to my own expectations – I’ve passed many a day beating myself up for not doing this, not doing that. Or as an Olympian would say, ‘I had nothing else to give.’ Yes. So us peeps with MS are actually strangely similar to world-class athletes?

When MS strikes, things you take for granted become hurdles, things you can see you just have to get over. There’s no other way. Weird stuff like formulating a sentence when you’re shattered or trying to navigate a staircase when your balance is shot (me last night). Or attempting to pour boiling water into a cup without first-degree burns.

MS requires tremendous mental strength. We may not be physically able to do what others take for granted, but boy, do we have tenacity in bucketloads. It gets us through the day.

Therefore, I think everyone with MS and other chronic illnesses should give themselves a huge pat on the back. When the Olympic rings are packed away and the last firework goes off in the Closing Ceremony, don’t forget, we’re still here, trucking along, facing each day with fortitude.

And if we don’t come up to our benchmark ‘good day with MS’, well, ‘we gave it our all.

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An Awfully Big Adventure …

taxiLast weekend, The Teenager spent his first night Alone At Home.

I was off to an MS Society meeting as a Council member, in Carmarthen, 64 whole miles away.

I planned to stay overnight on the Friday as we’d arranged to hook up with local peeps connected to MS that evening, before the meeting on Saturday.

So far so good.

Would The Teenager manage to hold the fort, feed the cat, lock the doors and hang up his towels for 24 hours without parental supervision? Worth a shot?

It started well: I’d booked an early train, smug in the knowledge that I could read my book whilst sipping a cup of coffee and admiring the beautiful coastal scenery from my reserved table seat next to the window.

Erm. No.

The previous train was cancelled so when mine pulled up, it was a free-for-all. Elbows, swear words and shoving. I somehow pushed my way to my seat (now fully occupied, natch) and started to cry. Honestly. I went red, stuttered and pleaded. I explained the MS and nerve pain and I sat down in the vacated seat, embarrassed and humiliated.

Almost two hours later, I arrived, dragged my case and headed for a taxi. The hotel was up a steep hill and half a mile away, the sun was blazing and I was close to collapsing. Long story short, I was refused a taxi; my journey was too short. I offered to pay a tip. I explained the MS. Again. I was still refused.

Reader, I thought I was going to die. It took me almost an hour to stagger to the hotel. I stopped numerous times, heat intolerance bearing down, my legs yelling in pain. I arrived at the hotel eventually and crumpled in a heap at the reception desk. Not the best start.

Anyway, The Teenager. Throughout my epic journey, he’d been texting me:

‘Where’s my goalkeeper gloves?’

‘Can I order a game off Amazon? Got your credit card saved :-)’

‘It’s on offer :-)’

‘You know when I go to the Reading Festival, can I have some spending money?’

‘Can you transfer £1.28 to my account so I can buy a calendar for my phone?’

Back at the hotel, after lying down for an hour, I had a brilliant evening and went to bed looking forward to breakfast in the morning; there’s something about hotel breakfasts, with their mini pots of jam and rubbery scrambled eggs.

The next morning, I checked in with The Teenager:

‘Morning! Have you fed the cat?’

‘Nah. She’s dead.’

‘Oh.’

A bit later;

‘Mum. Ok if I have some friends over for breakfast?’

‘As long as you clean up. How many?’

‘Eight.’

‘We only have a tiny house?’

‘S’ok.’

Our meeting went well and I packed my things together ready to go home. My phone beeped:

‘Oh yeah, I’m going to go for a world record’.

‘In what?’

‘Most chicken nuggets eaten in 3 minutes.’

‘The current record is 31.’

‘I did 20 in 1:10.’

‘Ah. Ok.’

‘You looking forward to having a record-breaking son?’

What could I say? I got home, aired the lingering smell of bacon, eggs and beans and was greeted by a very-alive cat.

We survived.

p.s. a follow-up – BBC Wales picked up the story of the taxi refusal and reported it here. Also, Carmarthenshire Council have traced the driver through CCTV and will be inviting him in for an interview …

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Feeling Awfully Tubby (F.A.T.)

pashminasDespite the lack of thyroid meds, my gland still refuses to play ball and my weight stubbornly refuses to drop.

Not one teeny tiny eeny weeny pound.

The remnants of a relapse haven’t helped, but, really?

So. I’m in the middle of a conundrum:

  • First, the scary thought – this could be me, like, forever.
  • Second, I may never, ever feel the unparalleled joy of a size 14 pair of jeans, ever again.
  • Third, I’m so unremarkable that people don’t even sympathise with, ‘such a shame she’s so large, she has such a pretty face.’
  • Fourth – plastic surgery?

Where do I go from here? Well, I’ve counted my options; I could:

  • Brave the Larger-Ladies stores
  • Buy fun-and-large-jewellery to draw attention away from tree-trunk thighs, triple chins and chipmunk cheeks
  • Dye my hair a ‘wacky’ shade (blue/pink/magenta) so people don’t notice I’m actually a walking, talking blob

It doesn’t help that The Teenager has transformed his body over the last year and is now a strapping 6′ 4” muscly-peep and scrutinises everything he eats to the nth calorie. He’s offered to take me to to his gym – preferably late at night – just in case he bumps into his mates. He shows me simple exercise I can do with cans of beans and bottles of Evian.

No matter how many times I play I Am Woman, it doesn’t help.

Invincible? Erm, no.

I have a new plan – invest in those large pashmina/throws. M&S sell a nice range. Just wear all black underneath, chuck on a pashmina/throw and a bit of an attitude and I could be ready to go? Or are they picnic blankets in disguise? Was I in the wrong department?

It’s a learning phase. I must bring forth my inner loveliness, whatever that means. People may balk at my bulk, but I should always present a positive and shining aura.

I’m trying.

Tbc …

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Missing. Inaction …

inactionWhoah.

This relapse (spike in symptoms/exacerbation/whatevs) has drained me.

After falling face-first into some gravel, things have progressed steadily downhill.

Plates have been flying, I’ve become intimately acquainted with every wall in my house – and discovered every sneaky cobweb – and to top  it all, vertigo descended yesterday and has been plaguing me ever since.

These last two weeks have been an exercise in containment – getting away with as little as possible to keep up the facade that I’m ‘doing OK’.

I’ve cancelled meeting up with friends. I have a birthday present to deliver that’s now three weeks overdue. I won’t be taking guitar lessons for the foreseeable (long story). Life, for the moment, consists of a need-to-do basis.

I had an initial meeting with my dissertation tutor and I agreed to hand in 7,500 words of a novel by mid-September. Lol. I’ve written just over 100. To be fair, they are excellent words and it’s just a shame there’s not more of them.

I’m becoming a little fed up of lying on my sofa after work with a Dulux paint chart, eyeing up the walls, just to pass the time of day. I’ve bought a tonne of gossip magazines, caught up on my Sky Planner and watched a wide range of subtitled films. My head aches.

I hate being forced to do the minimum; I am a doer, not a wait-er. I would rather drag myself to work than lie in bed. However, I might just be made to do that very thing, and fairly soon. The endocrinologists agreed today that after two years of yo-yo medicines, I will have an operation to remove my thyroid, as I developed Grave’s disease, a 1-in-3 chance of having Alemtuzumab treatment.

It was a chance worth taking, but the logistics will take a little working-out. Two weeks off work, unable to move my head and the possibility of a husky voice; the last one seems a fairly benign symptom though. Mariella Frostrup?

Anyway, as always, life has to go on and I am co-ordinating from The Sofa HQ. I watch the hours passing on my clock. I go to work, get home, collapse, go to sleep, get up and do it all again. Why? I don’t have a choice.

Today, I met a new endocrinologist. He was reading through my file as he ushered me into the non-soundproof clinic room.

He said to me, ‘Wow, for someone with MS, you do a lot, don’t you?’

‘Yes’, I answered.

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