Tag Archives: tired

Eyes Wide Open

Eyes wide openI have developed an annoying symptom recently.

Some evenings, when I’m reading a book or watching an exciting TV programme (Hannibal, Pretty Wicked Moms), I go from wide awake to instantly zonked.

No reprieve. It starts right out of the blue; my eyes start rolling and I’m pinned to the sofa, completely aware of what’s coming next – total oblivion. In that slim interim, I know I should get up and walk around, problem is I just can’t.

It’s suddenness is frightening. Apart from that, The Teenager sneaks downstairs and slurps down countless yoghurts while I’m in the Land of Nod. He probably also clones my credit card to buy online games, who knows?

Anyway, I had my review with the neurologist (a very nice man – *waves*) just over a week ago. When he asked me if I had anything I was concerned about, I launched into the saga of my numb big toe, my odd left foot, my odd right foot and this most peculiar Insta-Sleep (just add yawns).

He prescribed me Amantadine, warning me to take them no later than 2pm, otherwise I would be up all night – I wish. Yes, I was sorely tempted. But, I took them as instructed and nothing happened for almost a week. Then, blam, I was……awake. Fully. The grass was green and the bluebirds were singing. My life was suddenly in blinding Technicolor.

I worry though that the tablets mask the underlying symptoms. Am I pushing myself too far? Will I reach a point of collapse? Will this new-found energy enable me to exercise more? Bearing in mind that last Monday, the few squats I attempted with my lovely trainer led to four days of agony. I’m not joking. I walked up and downstairs at home like a crab, meh.

Also, the tablets have given me the most amazing dreams, so vivid that when I wake up in the morning I have to remind myself what is real and what is imaginary. I have the most marvelous conversations with friends and family, but I find out to my dismay that they are entirely one-sided.

I will keep trying with the tablets. I made the mistake of telling my boss. He offered to trade me two packets of Jaffa Cakes for a tablet. I wasn’t tempted. Much.

Tagged , , , , ,

What Not To Say To Someone With MS

Cardiff-20130530-00192When I was going through the whole MS diagnostic process, people said the strangest (and hurtful) things to me.

It was hard enough coming to terms with MS, far less finding smart replies to insensitive comments. Everyone has an opinion and they can’t wait to give it to you.

Even after diagnosis, the comments still keep coming, perhaps because MS is, for now, a mostly invisible illness for me and trying to convey the symptoms to other people is as difficult as counting brain lesions without an MRI.

So here’s my handy print-out-and-keep list of what not to say to someone with MS. Give it to all your newly-diagnosed friends to prepare them for the onslaught and before long, they’ll have ticked every one, several times over:

  • You need to stay positive.
  • You’ll be fine, they can do wonders these days.
  • My auntie/friend/great-uncle Billy had that, and they’re great now.
  • When are you giving up work?
  • I’ve heard Diet Coke and chewing gum can give you MS. 
  • You get to sleep a lot? Wow, great symptom, wish I had that. 
  • Hey, it could be worse. 
  • But you look so good!
  • If you get a blue badge, can I borrow it?
  • Have you tried (insert any number of miracle cures here…)?
  • You’re so brave.
  • You’re cancelling our evening out…AGAIN??
  • At least you don’t actually look disabled. 
  • You’re not using that old MS excuse again, are you?

So what should they say? Best piece of advice is not to presume things, just ask me questions. Ask what it means to me and my life. Everyone’s MS is different.

And if you don’t know what to say, say nothing. Just give me a hug and crack open the chocolate….

Tagged , , , , ,

What I Want For Christmas

Well, here we are…..Christmas Eve already. How did that happen? Seems I’ve been snoozing the time away, but at least the presents are wrapped, the fridge is stocked with wine and there’s enough chocolate in the house to graze (gorge myself) on over the festive period. The advent calendar has been disemboweled and is on its way to the recycling bin.

I have finished my massive house clean. The house is aired and the dead mouse which has been lying outside my back door for weeks has finally been laid to rest in the compost. I have three days of fun and frolics lined up before The Teenager visits his dad the day after Boxing Day. Where though, can I find some extra energy? I am so, so tired. Exhausted. All I want for Christmas is energy.

MS and Christmas is a double-edged sword. It’s great that it becomes socially acceptable, almost mandatory, to have a little kip in the afternoon, wine glass in hand, paper hat askew,  but the run of get togethers, one after the other can be hard. I’m turning into a tired and crabby old Grinch.

Anyway, enough whingeing. I’m just about to programme the Sky planner, filling it up with Gone With The Wind, Miranda, Downton and all the other usual suspects. My sparkly top for Christmas Day is hanging in my wardrobe, I’m resigned to wearing flat shoes and I think we’re pretty much ready for Christmas. I don’t plan on doing anything more strenuous than choosing what to eat next, which Quality Street to snaffle and reading out bad jokes from crackers.

I wish you all a fantastic Christmas. Thank you so much for your comments over the last few months – I love receiving them. On Christmas Day and Boxing Day I will be choosing some of my favourite posts, kind of like a top ten countdown, in true Christmas fashion. Cheers and have a good one! x

Tagged , , ,

An Unwanted Duvet Day

Just when I think I’m doing pretty well after the Campath (Alemtuzumab) treatment I had over the summer, along comes a day when it all comes crashing down.

I’ve been feeling more and more tired over the week, the numbness and tingling has increased, I’m stumbling more than usual and I’m not in complete control of my body. I haven’t had a week like this in months and I hate it.

Yesterday, I woke up, got dressed, saw The Teenager off to school, went to the shop for a paper and some yoghurt then went home and back to bed. And that’s it. This is as bad as the darkest days I had at the beginning of the whole MS business. Will it last? Is this just a blip? I can’t even begin to say the word ‘relapse’ out loud for fear of jinxing myself.

Everything is difficult. I lie for hours, knowing I need to get up and work, cook lunch, catch up on phone calls. But some inner force is pinning me to the sofa. My limbs are heavy, I feel like I’ve been run over and I’m getting worried. Lunch was hysterical. I only had pasta and a jar of pesto in the house and normally I could rustle that up in five minutes. Yesterday, it took me an hour. Set the water on the hob, go and lie down. It boils, I put pasta in, go lie down. Pasta boils over, turn heat down, go lie down. Pasta is cooked, I leave it in the pan for half an hour and go lie down. I drain the pasta, add the pesto and heat up. Leave on side, go lie down. Re-heat in microwave. Go lie down and fall asleep.

If this sounds incredibly boring, it is. It’s soul-destroying. And lonely. I dread seeing The Teenager’s face when he comes back from school. He will take one look at me and know. Mum’s tired. How depressing.

Fingers crossed this is temporary and it will be business as usual very soon. I will cook The Teenager a mouth-watering roast at the weekend, I will do the housework (even the ironing), I will dust away all the cobwebs I counted while I lay on the sofa. But for now, I’m off to the sofa for a quick lie down. Again.

Tagged , , , , ,