Monthly Archives: October 2013

Oct 30 2013
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Emotions

Surviving Limboland

LimbolandAccording to Dante’s Inferno, Limbo is the first circle of Hell. With good reason.

Someone emailed me last week, asking how to survive MS Limboland, that awful, terrifying period of waiting to be diagnosed.

Some of us are ‘lucky’ enough to be diagnosed relatively quickly, others wait months or years. Emailing back and forth, we came up with ways to get through MS Limboland:

  • Learn about the process of diagnosis, the McDonald criteria. This is vital to understand just why Limboland exists and how long you might spend there. Your neurologist will probably want you to meet all the criteria before giving a firm diagnosis.
  • If a suspicion of MS is raised, find out if you can have access to your local MS team, the MS nurses in particular. They are a fantastic source of support and information.
  • If you want to learn more about MS, stick to the trusted websites only, such as the MS Society, MS Trust or Shift MS. But bear in mind the forums, although monitored, are other people’s opinions and experiences.
  • Seek out support from close family and friends, but choose who you tell carefully. The last thing you want is to be more worried about how they are feeling than looking after yourself.
  • Think carefully about whether you want to disclose your possible MS diagnosis at work.
  • Be prepared for people to tell you horror stories about friends/people they know who had MS. Don’t listen! MS is unique to every single person.
  • You might have to be proactive in speeding up the diagnostic process – don’t assume you’ll sail through the system. When you have your first appointment with a neurologist, take someone with you so you don’t miss any important information.

Helping others through Limboland is important to me. I followed very few of the above points, and as a result I had a pretty miserable, lonely time.

I assumed I would be diagnosed the first time I saw my neurologist (hah!), I googled everything about MS (and frightened myself silly) and I made the mistake of confiding in (up until that point, friendly) colleagues. In reality, my diagnosis took 10 months, I since found out that no, Diet Coke did not cause my MS and my colleagues are now my ex-colleagues.

Wouldn’t it be great if there was a booklet given to everyone in Limboland outlining these points? If you think there’s anything missing from the list, please let me know.

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Oct 28 2013
6 Comments
Emotions

Every Moment Counts

blue sky thinkingCancer Research UK has launched Every Moment Counts, ‘a platform where people who have been touched by cancer can upload and share precious moments, both everyday and extraordinary’.

The idea behind it is that when you’ve experienced cancer, these moments make you suddenly hyper-aware of the here and now and of how wonderful it is to be alive. It’s sad but so often true that sometimes it takes a serious illness to remind us of this.

People like me who live with MS may not face a life-threatening diagnosis that cancer can bring, but we do have to adjust to a lifelong, degenerative and incurable illness. Life as we know it will never be the same again.

I’ve spoken to a lot of people with MS over the last two years, and we all feel that MS has made life more precious. The mundane can seem magical, we value our friends and family much more and we just seem to appreciate life in a new, more vivid way.

MS makes us stop in our tracks and take stock. What once seemed important no longer is and vice versa. The old rule book is torn up and thrown away. Although MS can appear to condemn us to a life of misery and uncertainty, it can also liberate us from old routines and destructive habits, both mentally and physically. After the obliteration of diagnosis, we can rebuild our lives in a way we choose, where we can savour precious moments so much more.

Someone told me recently that one day they just sat and watched the clouds, something she hadn’t done since she was a child. As for me, MS has made me see my life through new eyes. I’ve weathered the storm and come out the other side.

I sometimes feel like a child again, taking pleasure in the most simple things. Meeting an old friend for coffee and having enough energy to hold a conversation. A hand-written letter arriving with the post. Baking a tray of chocolate brownies with The Teenager.

Every Moment Counts is a brilliant idea, for all of us.

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Oct 26 2013
16 Comments
Symptoms and Treatment

I’m Not Failing, I’m Sleeping…

sleep tightI had one of those earth-shattering, life-changing  moments of clarity the other day.

I closed my eyes at 10am, just to have a quick cat nap.

Two hours later, I woke up. I was incensed, maddened by the sheer waste of time and looked with dismay at my unaccomplished ‘To Do’ list.

As I stumbled into the kitchen to make a cup of strong coffee, tripping over the cat (she’s tiny but deadly), I stopped in my tracks. MS fatigue. I expect everyone else to take me seriously about how debilitating it can be, how much of a real symptom it is. And yet… I don’t.

Instead, I see it as a major inconvenience, something to be tolerated if I am to get through the day intact. It’s a distraction, holding me back from my real life. Or is it? I take my other MS symptoms seriously and factor them in, so why don’t I do the same with my most significant symptom, fatigue?

Over the last two years, I have railed against the pointlessness of all this sleep. I flounce to my sofa in anger, utterly fed up at yet another hour passing me by with absolutely nothing achieved. This had to change.

Rather than getting angry, I am now going to start respecting this fatigue, just as I accept that nerve pain, foot drop and stumbling are part of my life now. I can’t change it, so I will accord it the same respect. The fatigue is my body’s way of telling me to slow down, my brain needs a rest. I will view it as a valid symptom, not a major annoyance.

I tried out this new way of thinking yesterday. I had some things to do in the morning, and could feel the fatigue creeping up. Back home, my brain shut down. The To Do list was put to one side, I got my duvet out and fell asleep. I woke up feeling better, accepting that this is my life now. I can’t change it, but I can change how I approach it. I can absorb it into my life or I can go on forever feeling angry and a failure.

And you know what? I feel that in some way I have made peace with myself. I’m not failing any more.

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Oct 24 2013
8 Comments
The Teenager

Paper Round (And Round)

read all about itIn my day (here we go again), I had a job when I was 14. So when The Teenager turned the same age in August, we had a little chat.

I explained that had he been born 100 years ago, he’d be going down the coal mines as we live in Wales. Luckily for him, that was no longer a viable option, so he’d have to look for something else.

Last summer he set himself up as a car-washer, lugging round a bucket and sponge, knocking on doors. He did quite well until he got bored with windscreens and wheel trims.

So with my rousing speech ringing in his ears (it will give you discipline! it’s character-building! you’ll be earning your own money!), he went to the local newsagents and signed himself up  for a paper round. He also seems to have signed me up too.

He started on Monday, along with probably the most apocalyptic rain to hit in months. I waved him off at 6.30 am (You can do it!), set my mobile ring tone to loud, made a cup of coffee and waited. Sure enough, within nine minutes, there was an anguished phonecall.

‘Come and rescue me, pleeeeeaaaaase. I’m soaking, I can’t see anything for the rain, my papers are wet and I wanna come home.’

I trudged out to the car and searched for him. There he was, a miserable, hunched figure holding a luminous bag bulging with undelivered papers. He’d managed to cram three soggy newspapers through letterboxes then got lost in the maze of back streets. I set the sat nav and we searched through the driving rain for the remaining houses. By the time we got back home, we were both thoroughly fed up.

After we’d dried off, it was time for another chat (lecture). ‘You should have done a recce the day before. You should have planned your route. Responsibility, discipline,  blah, blah, blah.’ We finally came to a tearful agreement. Each day, he would find the next street on his route and I would meet him there, so by the end of the week, he could confidently do the round himself.

I have my reservations how long he’ll last. Just this morning I asked him what he would do when he was in London with his dad one weekend a month. Quick as you like, he replied, ‘well, you’ll do it for me, won’t you?’

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Oct 22 2013
6 Comments
Work and Studying

Grace Under Fire

everything will be ok in the endA year ago today, I was called into the boardroom at work and fired.

No warning, no procedures followed, this was simply the culmination of a terrible year of systematic bullying which began shortly after my disclosure of MS. According to my employers, MS had made me a liability in the office and I was told to leave.

Looking back over that horrific day, I can see just how far I have come. I am no longer that cowed, bullied, humiliated person who got in her car and drove home in a daze, stunned by what had just happened.

This all took place during my MS diagnostic process, itself a torturous time of relapses, waiting, scans and more relapses. So not only was I facing up to a new life with a degenerative illness and all that entails, I was also at my lowest ebb from the relentless bullying meted out by my colleagues.

At first I was too tired to fight back. Bullies are clever. They slowly dismantle your self-esteem bit by bit. Undermining you, they make you doubt yourself and your capabilities. They shift the goalposts so often you can’t keep track. When that doesn’t break you, they will ostracize you, spread lies about you, snigger as you walk past or suddenly stop talking when you enter the room. School yard tactics maybe, but incredibly effective in the workplace.

Fast forward another few months and my employers settled out of court after I launched tribunal proceedings. I’ve been asked many times why I have never named the company or sector I worked in. I’m under no legal obligation not to do so, but I am not a malicious person. To do that would mean sinking to their level, playing them at their own tactics. Why bother? I have walked away with grace, with my head held high.

Instead, I now campaign for MS and employment rights and I try to help others going through similar situations. Isn’t that a better use of my energy than holding on to bitterness and regret? The few times I think about my ex-employers, I feel saddened that these people felt it necessary to bolster their own fragile egos by deliberately inflicting pain on me when I was in such a vulnerable position. I needed support and help back then, not merciless bullying.

That which does not kill you can only make you stronger? A well-worn cliché maybe, but so very true.

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