Monthly Archives: November 2012

Nov 25 2012
7 Comments
Emotions

Happy Anniversary, MS (you suck)

cream pie on faceHey, MS, Happy 6 Month Anniversary! After a year of hell, I was officially diagnosed on 25th May. I don’t need to tell most of you how horrendous the diagnostic process can be, suffice to say I am overjoyed never, ever to have to go through a lumbar puncture again. Have you seen those needles?

Having MS sweep into your life is like having an ugly, unwanted house-guest move in with two huge suitcases and the kitchen sink. For ever. No matter how much you try to get on with life, work around them and keep ignoring them in the hope they will go away, they stick around.

Not content with that, they inflict pain on you mercilessly in unexpected ways, physically, mentally and emotionally. They rack up extra costs, they stop you going out as much as before and they chuck out your high heels (that was a cheap, low shot, MS). They rob you of your health, your confidence and your zest. They frighten your family and taunt you about your diminishing prospects.

If MS were a person, they’d be arrested and banged up for life.

So how do I feel, six months on? The absolute permanence of MS horrifies me. It will never go away. The progression of it, too,  is something I tuck away in the furthest reaches of my mind, only to be thought about in very dark moments. I hate the constant fear, the gnawing anxiety of a relapse just around the corner. I hate the way MS has shaken my life so completely to its foundations that nothing is the same as before.

I know, I need to embrace this illness. I should accept that MS is now indelibly imprinted on my life. I need to Think Positive! Meditate, do yoga, give up the sweets, the alcohol, the stress. Don’t we all? If pushed, I would say that the one thing MS has given me is the ability to appreciate things more. Not in a hippy-dippy, mung-bean eating way – just enjoying small pockets of time when everything is ok, I don’t take so much for granted now.

I am still debating whether to get a tattoo, to mark this little anniversary. Something small, just between me and MS. I want a barcode, with the words, Best Before 25/05/12. Or should that be Best After…?

 

Tagged , , ,
Nov 24 2012
7 Comments
The Teenager

Going on a Long Guilt Trip

Still no let up from the crushing MS symptoms. Still don’t want to say ‘relapse’ out loud. Worst thing is though, all the guilt has come flooding back.

The Teenager has been incredible since this whole MS thing started, and has started telling his friends, ‘my mum’s got what Jack Osbourne’s got’. The height of cool.

But he crumbles sometimes, unexpectedly, and it’s the saddest thing to witness. One day I told him off for not brushing his teeth. Five minutes later I hear loud crying from upstairs. I find him frantically scrubbing his teeth, taking huge, gut-wrenching sobs. ‘I hate MS, I hate what it’s doing. I hate you having it’. My heart broke into tiny pieces.

I try my hardest to hide symptoms from him. I sleep before he gets home, stuffing the duvet down the back of the couch. I have also trained myself to cat-nap and be instantly awake the minute he comes back from school. I write down key points about his school day so I don’t forget them, such as maths test, horrible PE teacher, German homework. I use Touche Eclat under my eyes so I look more awake and his rugby kit is always, always clean and ready. It’s a matter of pride.

But the guilt is relentless. I should be doing more with him. I should take him to town after school one day for a surprise and buy him a new pair of Vans. I should plan interesting day trips. We used to love baking together (thank you, The Great British Bake Off!), but we haven’t done that in a while. I haven’t the energy to clean the kitchen afterwards. The Swedish chef from The Muppets has nothing on my son.

So, I cut corners. I pass off M&S food as my own, leaving the chopping board out as ‘proof’ of my hard work. I spring money for pizzas (cool mum!) to save cooking, I buy more treats than usual and make sure his Lynx supply is fully stocked. I allow lots of sleepovers, so I know he’s having fun, but it gives me much-needed space too.  I make sure I am there for him, as much as I can be.

I hate what MS is doing to our little family. If I can just hold everything together, we will be fine. And maybe I won’t need to have Dominos on speed dial…

Tagged , , , ,
Nov 23 2012
8 Comments
Symptoms and Treatment

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 , , , , ,
Nov 22 2012
Leave a comment
Daily Life

I Used to Like My Cat

When he  was younger I teased The Teenager that when we left for work/school, the cat would jump onto the sofa, switch the telly on and watch QVC. He believed me for years, bless him, but recently I’m beginning to think it’s true.

Now I’m working from home, the cat is engaged in a campaign of warfare against me for invading her territory day after day.

Back in the bad old days of MS, when I was having continuous relapses, the cat was an angel. She would curl round me as I lay on the sofa, lie next to me in bed at night and she was just generally sweet and comforting. If she could have made dinner and washed up, I’m sure she would have.

Now though, she torments me. I wouldn’t be surprised if she changes the locks next time I leave the house. I sit at my desk trying to work and she is there, shooting me evil looks. I make a cup of coffee and I find her next to the kettle. I go upstairs to fetch something and she is on my bed, glaring at me. The only time she seems happy is when I put my coat on to go out. She trots around the room, purring. When I get back in, she starts the weirdy-staring thing again.

And she miaows constantly. It used to be cute. The cat rescue place warned us she was ‘a talker’ when we chose her. How lovely! How sweet! Now it drives me to distraction. I snickered when she miaowed so hard she lost her footing and fell off the window sill, but the next day she threw up all over my sofa.

So we are uneasy house-sharers at the moment. We circle each other, neither of us willing to give way. She knocks over ornaments and picture frames. Deliberately? She wants out, then she doesn’t. Then she does. Then she won’t go out the back door, insisting she goes out the front window instead. She drapes herself on the bottom stair. She lays mangled, decapitated birds and mice by the back door and once brought a live mouse inside. We still can’t find it.

I’ve got news for her though. I was going to buy her a Whiskas stocking for Christmas, but she’s just been scored off my Christmas list. So there.

 

Tagged , ,
Nov 21 2012
2 Comments
Work and Studying

The Christmas Work Party…For One

A delicious thought struck me the other day. This year, for the first time in well over a decade, I will not be going to a Christmas work party. Technically I am still employed until the end of December, but I’m guessing I’d be as welcome as a new MS  lesion on an MRI scan.

This means I won’t spend days (weeks) agonizing over my party outfit, striking the right balance between chic and trashy. I won’t need to find a ‘jolly’ pair of flashing Christmas tree earrings, or drape tinsel round my neck and I won’t need to get involved in a Secret Santa present-swap, so no sneaky trip to Poundland then (I highly recommend the candles and picture frames – wrapped in expensive paper, who’d know?).

Most of the work parties in recent years have been excruciating exercises in ‘office bonhomie’. The boss is generally dressed down in dodgy ‘cool’ clothes, they’ve put twenty quid behind the bar and we all sit there with a limp cracker and a single party popper. Conversation stumbles along until enough cheap alcohol is consumed and it’s at this point that all hell usually lets loose.

Old resentments spring up, snarky comments are traded and the boss just sits there, eyes glazed,  trying to get us all to tell rude jokes. Inevitably, one or more of the women will rush to the loo, crying, followed by a gaggle of other women, eager to be the first with the gossip. With Christmas carols playing on a loop in the background, one or two will attempt to grab random drunken men for a dance and the smokers will decamp with their drinks to the back terrace and remain there the rest of the evening.

Am I sad then, to be missing out on all this fun? Er, no. It’s a relief. So I have decided to throw my own party for one. I’ll go to Waitrose for a nice selection of party nibbles, pour some Cava, put Cliff Richard’s Christmas CD on and have a fabulous time. There’ll be no need to dress up, so I’ll have a ‘pyjama party’ dress code. There’ll be no embarrassing photographs being emailed round the following morning unless the cat has developed opposable thumbs and there will be a sense of relief not to go to the office the next day only to be met with raised eyebrows.

So, to all of you who have an office party to go to, good luck and raise a glass to me…I’ll be thinking of you.

 

Tagged ,
← Older posts
Newer posts →