Category Archives: Daily Life

Dec 10 2012
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Daily Life

Having the house to myself…

I love The Teenager to pieces, but I also love the weekends he is away. Does that make me a bad parent?

He comes back from school on the Friday and stays for a while before being picked up. It’s a strange half hour. I know I’m going to miss him, but ‘freedom’ is just around the corner. When he leaves, there is an unusual silence in the house and I have a whole weekend to savour it. The PS3 isn’t droning in the background, the laundry pile disappears, The Teenager isn’t shouting match updates to me every ten minutes and I can sit back and relax. This parent is strictly off-duty.

Being a single parent with MS is hard. I can’t sign out for a few hours or a day. I need to be present and in control at all times, but MS doesn’t make allowances and I struggle sometimes. The days I am fatigued are the worst.  There are times I almost resent not being able to go to bed early or having to schlep out a couple of times a week to pick him up from rugby or football training. So during the weekends he is away, I can let the mask slip. I don’t have to pretend everything is alright.

I can also do exactly as I please. I can catch up with The Real Housewives, America’s Next Top Model and Come Dine With Me. Guilty, trashy pleasure. I can sit and eat ice cream right out of the tub without having to share. I can have an evening out with friends and do proper grown-up things. Or I can just potter around the house, flitting from one thing to the next without having one eye on the clock.

I think it’s just having bit of time to catch up with myself, take stock and charge the batteries up. Yet much as I enjoy the time off, I’m like a kid at Christmas when he comes back on the Sunday. Everything in the house feels….right again. Except for the laundry pile, the toothpaste round the sink and the disappearing food…

p.s. a very clever lady on Shift-MS suggested ‘Reading Between The Wines’ as a name for our new book club – sheer genius!

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Dec 06 2012
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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 04 2012
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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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Dec 03 2012
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Daily Life

Woo Hoo! (Possibly, Maybe)

I woke up yesterday morning and felt strange. I had a shower, made coffee, put the cat out and still felt strange. I had….energy. How bizarre. Where did that come from?

After a couple of weeks of feeling punch-drunk with tiredness, this was altogether frightening as well as exhilarating. How long will it last? How many things can I cram into this window of opportunity?

I have to calm down and think straight. I rummaged round in the kitchen drawer and pulled out my list of ‘Things To Do When I’m Not Tired’.

I scanned through it. None of them will happen. I’m definitely not climbing a ladder to get the leaves out of the guttering. With my balance? And I won’t be painting the bedroom doors – what if I get hit with fatigue half-way through? The doors could remain semi-painted for weeks, months. So my revised tick-list is a little less ambitious. Cook dinners from scratch, vacuum through whole house (not just the bits I can see), sort out accounts, shred that pile of old paperwork and get rid of the cobwebs that have been tormenting me from the sofa.

The thing with MS fatigue is, when the door of energy opens, you have no idea whatsoever how long it will be before it slams shut again. A day? A week? My mind was buzzing. So many things to choose from. I could watch a complicated, subtitled film and actually follow it, I could attempt to cook a mushroom Wellington, I could dust off my Nordic ski poles and go walking.

I spent most of the day doing almost nothing, paralysed with indecision yet marveling at actually having energy and a clear head. I read half a book, as I had the energy to concentrate and not drift off. I wrote more lists of things I have to do. I caught up with my emails. I know I should have done a whole lot more, but I was just enjoying the sensation of being fully awake. The fact that I could do things if I chose to was enough for me. Being able to think straight without my head being full of cotton wool gave me a chance to get my head in order.

I have a busy week ahead. I’m hoping to keep the energy going and tick some more things off my list. Give me a break, eh, MS?

 

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Dec 01 2012
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Daily Life

Hitting the Brick Wall

I am still tired. But tired doesn’t cover it. I have hit the infamous MS brick wall of fatigue head on.

It’s darned difficult to convey the whole MS fatigue thing to people, but I’ll try. I go to bed exhausted and have nine hours sleep. I wake up feeling as if my head’s just hit the pillow. Overnight, someone sat on both my arms, leaving them numb and painful. The sensation in my feet disappeared, so I walk like a wonky robot, not quite sure when I’m making contact with the ground.

My head’s been stuffed with cotton wool and I’m feeling spaced out and disorientated. My balance is shot to pieces and my hands shake. I am so, so, so tired.

I went out in the morning to pick up my blood test results and some books from the library. I looked awful. The matchsticks keeping my eyes open kept falling out and I staggered to the counter in the health centre. Holding on for dear life, I managed to ask for the results, stuffed the envelope in my bag, went back to the car and sat for fifteen minutes until I could get my head straight. In the library, I struggled to get the books in my bag and headed for home.

Now I will spend the next five hours until The Teenager is home from school trying to pull myself together. Luckily the annoying PPI companies have taken the hint and stopped calling, so the phone is quiet. The post has already been delivered and the cat is out.

I can’t remember the last time I thought, ‘ooh, it’d be lovely to have a little afternoon nap – what a treat’. Now it is an imperative, it’s something I have to do, rather than wanting to do. There is no other option. The alternative is to be a raving zombie with red-eyes and gibberish for conversation. If I sleep for two hours, I may just be able to reassemble the spaghetti carbonara ingredients I had to shelve yesterday, ready to have a home-cooked meal on the table for when The Teenager comes back from rugby.

Life goes on and sometimes I feel it is just passing me by while I sleep, but tomorrow is another day.

p.s. I would love to hear how other MSers describe fatigue to people?? I’m running out of ways to explain…

 

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