Tag Archives: Limboland

Reach Down, Raise Up

MS sometimes feels like a ladder.

Six years ago, it felt like I was somewhere around the bottom, in the murky depths, desperate to get a handle on the slippery first rung towards diagnosis, treatment and, well, ‘thank goodness I now have an explanation for what the hell’s been going on for the last year‘.

I spent hours and hours on the MS Society forums, asking question after question. Patient people who had been there before answered every niggle, every question, no matter how weird it sounded.

They reached down and pulled me up and I will forever be grateful to them for their guidance and support.

Limboland is a cruel place to be; essentially, you wait there in the ‘hope’ you have another relapse and are then moved from a single episode to ‘multiple’. So, you pray to get worse, to get better, because it’s only then that you can access the treatment that will potentially stop the next relapse.

I vividly remember the elated posts from fellow ‘Limbolanders’, ‘Finally!! I’m diagnosed!’ I was envious beyond belief and confused in equal measure. How can you be so happy to have MS?

I soon found out.

Like a magic door opening with a secret code, my eventual diagnosis offered up a myriad of treatment options.

Next week I’m taking a day off work to train with the MS Society as a Support Volunteer. The focus is firmly on the social model of disability, which centres upon choice and control.

I hope to learn skills which will allow me to reach out to pre-diagnosed people and those who are newly-diagnosed; I want to learn how to offer non-directive support and take on board an individual’s unique circumstances without judgement.

I’m looking forward to the course and giving back at least a tiny bit of the support I received all those years ago. If I can ease someone’s journey into life with MS, I’ll be over the moon.

Volunteering often sounds like a massive commitment, and I will be honest as to how much time I can offer, but it could be as little as one phone-call a week, or one quick coffee. Hopefully I will be able to offer more, but if anyone is thinking about volunteering, go for it.

I’d love to meet that one particular person on the MS forums (amongst many others) who took me through, step-by-step everything I asked, with her incredible medical knowledge.

I probably never will, but the one thing she said to me is, ‘if you found help in what I have offered, do the same, when you are ready.’

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In The Beginning, There Was Cake….

scrummy yummy cakeSome of you have asked how my whole sorry MS story started, so here is the potted version.

Like many things in my life, it began with cake.

Leaving a friend’s house after enjoying a slice (okay, two slices) of delicious cake. I turned to say, ‘thanks for the cake!’ but it came out as ‘thanks, Kate’. Odd. I tried again. Same thing.

I went home perplexed. The Teenager was away for the weekend and over the course of the next two days my speech deteriorated, I was exhausted and my balance was shot. I knew something was seriously wrong.

I eventually ended up in hospital, talking gibberish. The clues were all there. The overwhelming tiredness over the previous six months, the dodgy walking, the simplest tasks taking forever. Throw in a childhood in Scotland and a parent with MS and I guessed the rest.

I assumed I would be diagnosed there and then (ha!) but that was just the beginning. Until I had a further relapse, I was in Limboland with no idea how long I would stay there. It took a year to hear the dreaded words, ‘highly active/rapidly evolving relapsing remitting MS’.

That year was probably┬áthe worst of my life. The lumbar puncture was a vile, medieval torture, the MRIs were terrifying and I lost count of how many blood tests I had. I lay awake at night, rigid with fear, worrying about the future. A lot of people say the day they are finally diagnosed is both the best and worst day of their lives. I agree. After all the waiting, the anxiety, the fears, it was a relief to finally have some answers. But it doesn’t make it any easier.

My main priority was to keep life going on as normal as possible for The Teenager. I would sleep in the afternoons, setting my alarm so I was awake just before he got home from school, duvet tucked away behind the sofa. I hid my anxiety. I became best friends with the pizza delivery man.

Those were dark, dark days. They are behind me now and an uncertain future still lies ahead, but isn’t that true for everyone? And as for cake, well, it certainly hasn’t put me off…

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A Helping Hand in Limboland

sad stick womanSometimes I wish I could go back in time to that terrifying morning when I woke up and couldn’t speak properly or walk in a straight line. If I knew then what I know now, I would have been a very different person. For someone whose father had MS, I knew surprisingly little. I had no idea what ┬áCIS was, what an MRI would show, why I had to have a lumbar puncture.

I was in Limboland. I might develop MS. Or I might not. It is a cruel waiting game. I didn’t understand the ‘multiple’ part of multiple sclerosis. I left the clinic after that first relapse utterly petrified. What was I to do now? I had been given a couple of MS leaflets and information about how to contact the MS team. But if I didn’t yet have MS, why would I be given that? I was bewildered.

I accessed a few forums, one dedicated to Limbolanders and I gained a huge amount of information (a very, very special mention to ‘Rizzo’ who was amazing in answering all my queries). The forums were a lifeline, but at a cost. A lot of people had been stuck in Limboland for years, some well over a decade. Despair and anger oozed from the forum. We were all in a nasty, dark waiting room and I would feel a painful stab of strange envy when someone posted that they had been diagnosed, and were now leaving us behind; they had the golden ticket.

I read everything I could about the McDonald criteria, ticking off the four points bit by bit. Finally (but only 10 months later), I had my ticket. My brain threw up more lesions, far too many and I was diagnosed. Possibly one of the best and worst days of my life.

I wish I had been handed a step-by-step guide to life in Limboland, clearly explaining the whole diagnostic process, the frustrations, the waiting. Could someone please publish this? Letting us know that you have to go through so much, from first relapse to eventual diagnosis. Break us in gently. Please don’t throw us in the deep end.

So, to everyone diagnosed with MS, look out for the Limbolanders. Treat them kindly. Be an inspiration and show them we are not so bad, it’s not so scary. There is a life after diagnosis. Aren’t we all proof of this?

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