Aug 10 2013
10 Comments
My Ramblings

Reasons To Be Cheerful

gooddayMy last few blog posts have been somewhat dark.

I’m not quite sure why but it probably has a lot to do with being on sick leave after the Campath treatment and spending far too much time at home on my own.

It’s definitely got nothing to do with the fact that I will be turning *40* on Tuesday (gulp). Not at all. Not even a teensy bit, although I am being rather melodramatic about it – ‘that was my last ever Thursday as a 30-something’ or’ that’s the last full moon I’ll ever see in my thirties’, before reaching for another chocolate chip cookie to console myself.

So in an attempt to cheer myself up, I am compiling a little list of things that have made me smile over the last few weeks (in no particular order):

  • I’ve almost finished my last ever essay for my university course. Six long years. Nearly pulled out two years ago when my brain decided to stop working, but got there in the end. 
  • An old friend I haven’t seen for years and years got back in touch.
  • Re-discovering the joy of toast.
  • I’ve been shortlisted for the MS Society Digital Media of the Year award – chuffed beyond belief, and The Teenager is coming with me to the awards ceremony in London (if he tidies his room and promises to behave).
  • I put a whole load of grated carrot in The Teenager’s bolognese and he didn’t notice.
  • A friend in America sent me over a package filled with fabulous presents.
  • Wandering round Ikea and managing not to buy any candles for the first time ever.
  • Cutting my own fringe with dodgy MS hands. So bad, it’s good.

I was talking to someone the other day, who asked me if there were any unexpected good things about MS. Without hesitation, I found two. First, the support from other people with MS. Who knows where I would have been without it. Second, the fact that something like MS makes you scale life right down to what’s important. I appreciate everything now, however insignificant.

Life is looking up. I will soon be ready to re-launch myself into society again and I can’t wait.

Tagged , , , ,
Aug 08 2013
19 Comments
Emotions

This Is What MS Feels Like

lonelinessImagine you had a life-long friend.

This friend’s been with you through everything. Every high, every low. Seen you through weird and wonderful adventures across the world, the birth of your child, a near-fatal car crash.

One day, this friend turns on you. To begin with, you don’t really take much notice, you’re too busy trying to get on with life. You ignore the niggling doubts. You trust this friend implicitly, with your life. But the warning signs become hard to ignore. You’re sure they’re drugging your coffee, it’s the only thing that could explain the overwhelming fatigue. They begin messing with your mind, mixing up your thoughts, your emotions, garbling your speech.

Things escalate badly. They begin pushing you over and tripping you up. You never know when it’s going to happen and you start to live in fear. Your balance is shot to pieces, the pain is uncontrollable. You start going out less, hiding yourself at home. You’re bullied at work because of the friend, who by now is an enemy. This will ultimately be an excuse to fire you from a job you love. Friends abandon you, leaving you even more isolated. Your family can’t begin to understand what’s happening to you, no matter how many times you try to explain.

Your income drops as you have to reorganise your working hours, your social life is non-existant. Simple tasks become mountains you have no hope of scaling. Just getting through each day in one piece becomes your sole aim. Fear and loneliness are now your constant companions, keeping you up into the small hours, frantically working out what your new future will look like, if you have one at all. Every area of your life is rapidly changing beyond recognition, so fast you can barely keep up. Your son cries in his bedroom. He can’t cope and you don’t know quite how to console him when you can’t even reassure yourself.

This is what MS feels like. Your body, your friend through life who has never let you down before, attacks you from every single angle.

Drugs, treatments and a superb support network have restored some kind of order to my life, although it is not the life I had before. But those black, dark days will remain with me forever. And they may, just may, reappear at any time. Carpe diem.

Tagged , , , , ,
Aug 06 2013
27 Comments
My Ramblings

My MS Is Worse Than Your MS

My MS is worse than your msFor me, the best side effect of having MS is the support of fellow MSers.

MS nurses, neurologists, charities are brilliant, but there’s nothing like talking to another person with MS. They just….understand.

Whether they’re virtual friends made on Twitter and through blogging or people I’ve got to know in person over the past few years, the support is incredible. No worry is too small to share, no question too random.

So why is there an insidious underbelly of hierarchy among people with MS? When did MS become a competition? I have heard many variations on these comments:

  • ‘You’ve only got relapsing remitting? Hah! You don’t know the half of it.’
  • ‘Oh, I’ve been in a wheelchair for years, you don’t know how blessed you are.’
  • ‘How many times a day do you fall over/trip/stumble?’
  • ‘You’re  lucky, there’s nothing they can do for me. I just suffer with it.’
  • ‘Wish I could be in remission, I just get worse and worse.’
  • ‘Are you sure you’ve got MS?’

And the absolute killer when it comes from someone with MS, ‘But you look so WELL.’ I’m glad to say these people are in the minority, but it still cuts deep. Should I not be allowed to say I’m in remission for fear of upsetting other people? Shouldn’t we be celebrating new advances in disease modifying drugs rather than sneering at those who have the opportunity to take them?

Then there are those people for whom MS becomes their entire raison d’être. They exist in an MS bubble, proud of their suffering status. They are unwilling to say or do anything that’s not connected to the huge cross they bear. And more often than not, these people aren’t even the worst affected by MS. Whilst it is comforting to be surrounded by fellow MSers, this does not define my life, just as MS doesn’t. I may have to live with MS but it certainly isn’t the focal point of everything I do. That would be as good as giving up.

For me, it is far more positive to show that you can live a rewarding and fulfilling life alongside MS. We might not be able to cure MS just yet, but we can begin by dropping the competitive element. Aren’t we all in it together?

Tagged , , , ,
Aug 04 2013
7 Comments
My Ramblings

Please Give Generously

collecting tinYesterday I helped out at our local MS Society’s flag day collection in town after receiving an email pleading for more volunteers.

The orange stand was hard to miss and I was kitted out in a yellow sash, an ID card and collecting tin. I’m still not back to full speed energy-wise, so I sat on a picnic chair and spent the time chatting to people who came over to donate money.

It was a fascinating but disheartening snapshot of the public perception of MS. The consensus seemed to be that MS is an ‘old person’s illness’, that we all end up in wheelchairs and there’s no treatment for it. Maybe having three pensioners and me at the stand just reinforced this myth.

Strangely, younger people were more willing than older people to come over and donate and a good few stopped to talk about people they knew with MS and the impact this had had on them and their families.

The other volunteers told me donations had dropped significantly in the last few years, perhaps not helped by the fact that so few society members were willing to help on collection days. Out of over 250 members in Cardiff, only five were out yesterday. Surely it’s not asking too much to give up a couple of hours once or twice a year?

And there’s the nub. We all want good, local groups and most of us need the support of other people with MS at some time or other. These groups need donations to exist. Yet a lot of us complain the groups are old fashioned, depressing and full of ‘old’ people, even though MS is mostly diagnosed between the ages of 20 and 40. So why aren’t we joining these groups, bringing in new life, fresh ideas and extending a helping hand to newly diagnosed people?

What’s the point of complaining about something yet refusing to be part of the solution? If we want local support groups to be more open to change, we need to begin at the grassroots level and get out there, be visible. If we expect the public to dig deep in their pockets, how about we give generously of our time too…

Tagged , , , ,
Aug 02 2013
2 Comments
Daily Life

Busy Doing Nothing

nothing happenedI’ve had a very productive week doing very little except recovering from Campath.

You need to put in a lot of preparation work to do nothing. First up, food. I’ve spent hours on the computer putting together a shopping list for Ocado home delivery to save me the hassle of going to the shops.

With a brain functioning at less than zero, it was a Herculean task. I also Blame The Brain (TM) for the abundance of snacks and chocolate that found their way into my virtual basket and the lack of proper, grown-up things such as leafy green vegetables and washing up liquid.

Next, The Teenager. Unlike me, he’s had a busy week doing an awful lot and needs frequent cash injections and food (see above point). He’s also keeping me ‘entertained’ with a detailed breakdown and analysis of the upcoming football season, so I’ve had to try and concentrate as he throws in random pop quizzes to check I’ve been listening.

Then there’s the cat. She also wants feeding. On Tuesday, her Go-Cat crunchy biscuits didn’t quite fill the gap so she brought in a barely-alive bird and dropped it at my feet. I screamed, she ran away with the poor thing and proceeded to eat it, head first, outside my window, casting me triumphant glances as she munched away.

I am also not studying, not doing any housework, not getting rid of the cobwebs (18 and counting, plus two large, dead spiders spinning around, eww). I am busy lolling on my sofa, reading trashy magazines and watching trashy telly. This keeps me occupied for hours and hours, leaving no time to just do nothing. To break the monotony, I went with the boss to Ikea the other day to look at kitchens. I’ve never been one to turn down free meatballs.

I did nothing much at Ikea either but on my way through the Market Hall, I picked up a lamp I didn’t really need. Ikea does strange things to the mind. It’s virtually impossible to leave without buying anything, even if it’s just a 60p hotdog or a dustpan and brush set.

So that’s been my week. Next week I’m planning to do more of the same. It might look like I’m doing nothing but I’m rushed off my feet…

Tagged , , , ,
← Older posts
Newer posts →