Dec 07 2012
8 Comments
My Ramblings

But You Look So Well…

hunchbackFive words guaranteed to raise the blood pressure of us ‘invisible’ MSers, ‘but you look so well’ is normally accompanied by a sharply raised eyebrow and a sceptical look. Obviously I’ve been making the whole sorry saga up and have accepted help and sympathy under false pretenses.

The meaning behind these words is stark. You said you were ill, but you’re clearly not. Go away, you attention-seeking drama queen.

I get asked to explain my symptoms. Dodgy balance, extreme fatigue, wonky hands, difficulty walking in a straight line, falling over. They nod then say, ‘well, at least it’s not cancer, eh, bet you’re glad it’s nothing more serious?’  Would it be ok to beat them about the head with my walking stick?  It’s got to be useful for something. There is an illness hierarchy and MS languishes somewhere near the bottom.

Sure, on the surface I do look fine, and since being diagnosed with MS, it’s important to me to still look my best. Adapting to the role of a ‘sick person’ has been a difficult transition and one I am still going through. Yet, for society to regard you as an ill person or a person with a disability, you need to conform to their expectations, otherwise you can just whistle for support.

I should stop washing, start wearing baggy-kneed leggings bought in bulk from Primark, rub chip-fat into my hair and under no circumstances dare to put even the merest hint of make-up on. I must give up work, apply to go on the Jeremy Kyle show and start hanging out in Poundland, spending my benefits on cheap junk food.

A well-meaning friend joked that MS fatigue is a pretty cushy symptom. You get to doss around on the sofa all day, doing nothing more taxing than changing the telly channel. What they don’t see is the fear, the anxiety and the utter terror of an uncertain future. MS is sneaky. It’s symptoms can strike at any time and there’s no set pattern. You can be chatting away in Starbucks, feeling quite normal, enjoying your latte when suddenly the cup drops from your hand. Or you can be walking along the street when your foot just drops from under you. Socially, MS is dire. It steals your confidence.

So if you see a person with MS looking well, just think of the effort they’ve made despite everything. And don’t mention the Poundland carrier bag full of Frey Bentos pies and Bacon Bite crisps…

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Dec 06 2012
2 Comments
Daily Life

Starting a Book Club…

MS does funny things to your mind. I used to be a voracious reader, but since being diagnosed the most complicated things I read were the instructions on a microwave meal or the telly guide. I couldn’t seem to concentrate and my mind wandered all over the place.

Happily though, I am now back to reading two or three novels a week and the local library is once again staggering under the weight of my book orders. With this in mind, I was chatting to a fellow MSer yesterday and we have decided to start our very own MS book club. I have offered to host and The Teenager will be bribed with a packet of biscuits and bottle of pop to stay upstairs, bless him.

I have past form on the whole book club front. I used to run one years ago, but the clash of personalities was the final nail in the coffin. Once the wine was flowing, arguments would break out. Not about the book we had all read, but about politics of all things. It was ugly. So with this in mind, we will plan things a little differently.

First and foremost, we will all have MS, so concessions will need to be made. Fatigue could cull one or more of us on book club day so we might have to hold it by Skype, each of us on our respective sofas. We will all have a lowered tolerance of alcohol, so we need to be careful (like that’s going to happen…). And we really need to think about choosing short-ish books, just in case. Topsy and Tim anyone?

I am childishly excited though. After months and months of fatigue and general couldn’t-give-a-damn attitude to life, it’s good to be reintroduced into society. Rather than just reading about the world I was missing out on, I will be taking part. Touch wood, I’m on the up and up and life has never looked better.

Any book suggestions would be gratefully received so if you have a brilliant book you’d like to recommend, let me know. Something that will make me look cultured and intelligent would be just fine…

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Dec 05 2012
2 Comments
The Teenager

Because I said so…

‘In my day’ are words I never thought I would say. But I do, a lot. As well as ‘when I was your age’ and ‘because I said so’. When did this happen? It all makes me feel rather…old.

When I was pregnant, I swore that I would never turn into a boring old parent. I would be cool and trendy (these words alone are a dead giveaway of my age).

I would give my child freedom to express themselves, to follow their own dream all the while gently nudging them along the right path. Then he turned into The Teenager and I find myself trudging the same old path as my mum did.

The Teenager and I communicate in single sentences. I say, ‘put your coat on, you’ll get cold’, ‘turn that racket down’, ‘close the fridge, you’re wasting energy’ and ‘I gave you coat hangers for a reason’. He normally replies, ‘yeah, whatever’ with exaggerated rolling of the eyeballs. One day I asked him to turn off his computer and get on with some homework only to be met with ‘like, duh, I’m just emailing it to my teacher.’ What?!

I told him ‘in my day the internet didn’t exist’. He looked momentarily stunned. Wide-eyed, he asked me how I survived, did we have Sky Planner, how did we meet up with friends? Yup, I felt practically prehistoric, a dinosaur.

Now we have MS in the whole equation, it’s slightly tricky to get the balance right. I make up for my bad days with treats. The chip shop will no doubt be sending me a Christmas card this year. I buy little cakes for after school, I let him have more sleepovers than usual and I still wash his rugby boots. I don’t want him to feel his childhood is overshadowed by MS, and luckily for me a lot of my symptoms are invisible.

But for now, we are trucking along just fine. If you’ll excuse me, I’m just off to settle down with my People’s Friend and a cup of tea. Ooh, and a nice Garibaldi biscuit. Lovely.

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Dec 04 2012
6 Comments
Blogging

Possibly the best comment ever……

Hi all!

I just had to share this amazing comment I had with you – I know I’m boasting, but it’s absolutely made my day (month, year):

 

This is a general comment on your blog, although am delighted that you’ve got that zest for life back. Long may it last!

No, really just wanted to let you know that (IMHO):

1. You are so funny. I’ve actually hooted with laughter (yes, hooted. Guffawing (who invented that word?!) doesn’t even come close) at some of your entries and even on rereading (no I wasn’t high, courtesy of steroids), your writing is screamingly funny).

2. Being able to write so well that your reader’s engrossed in your ups and downs takes real skill. I can actually visualise your experiences at work. Ever considered a series of short stories/blockbuster/serious writing?

3. You’re also amazing. Juggling a new, unexpected life with a son and everything else takes real strength of character. Congratulations. Hope that your job hunt is successful. More importantly, that the drugs work and that you get better and better.

I can understand if you don’t want to publish this. But just hang on in there, you’re doing good!

Kind regards,
Honeysuckle

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Dec 04 2012
6 Comments
Daily Life

I’m Still Going…

Well, this is fabulous. The energy levels are holding up and I feel on top of the world. A lot of my ongoing symptoms seem to be disappearing too, except for the numb left arm. But hey, I still have the other one.

The only drawback is that I woke up ultra early. Even the cat didn’t come downstairs for another hour, it was that early. After getting nothing done the day before,  I whizzed through a couple of hours of work, put a load of laundry on, plumped up the sofa cushions, rearranged the food cupboards and watered the plants. At 7am I woke The Teenager with a cheery yell but judging by the grunts coming from under the duvet, he wasn’t feeling quite as awake as I was.

But the sun is shining and I looked back on my recent fatigue with a shudder. You don’t realise just how awful it is until it’s over. So tedious, so mind-numbingly boring and so depressing. I know this might not last though, so I am laying down plans for how to cope the next time the fatigue juggernaut rolls around:

The sofa becomes the centre of operation. Therefore it is vital to have everything within easy reach. It’s amazing just how much you can get done whilst lying down – emails, paperwork, phone calls, Twitter. Must make sure I have remote control to hand, that there’s a good stack of programmes on Sky Planner (nothing too taxing – Come Dine With Me, Escape to the Country and America’s Next Top Model), a couple of magazines and a generous supply of snacks.

With a bit of luck, you can also socialise from your sofa. Invite a friend over and casually suggest they swing by the takeaway. If you’ve got a teensy bit of energy but not enough to go out on a Friday night,  have a friend over for a bottle of wine. Stay on the sofa, but prop yourself up (you don’t want to seem rude). When they leave, just slide back down and resume resting position.

Simples.

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