Tag Archives: loneliness

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.

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The Loneliness of the Long-Term Diagnosis

Since being diagnosed with multiple sclerosis, I have never been surrounded by so many people (usually of the medical variety) yet felt so utterly alone. Bereft, cast out, somehow ‘other’. Just over a year ago, I was living a fairly normal life, doing fairly normal things. Sure, we all feel different at times, a bit lonely, a bit out of the loop, but with any luck, we soon gather ourselves together and re-join the masses.

Being stamped with an indefinite diagnosis however, permanently removes you from normal society, whether you like it or not. I felt a sense of shame ‘admitting’ my diagnosis to friends and family and was angered at their awkward, embarrassed reactions. Perhaps the slightly musty, old-fashioned image of MS does not help matters, despite it technically being a young person’s illness. Wheelchairs, catheters, trembling and paralysis were the most common words mentioned by my well-meaning friends along with the horror on their faces as they briefly considered the scenario of wheeling me to the park, wrapped in a tartan blanket to feed the ducks.

How to describe the aching loneliness of waking in the early hours of the morning, rigid with fear? Or the recurring thought: This. Cannot. Be. Happening. To. Me. But it is happening, and each new medicine, neurology appointment, MRI scan, blood test and flu jab add another thin layer separating the me now from the me then. My life was tossed up into the air one day last year and as it has fallen back down, there is a new order, a new symmetry and system to my life. Normal life must fit around appointments, fears and anxiety must be measured against reality and worst-case scenarios, and precautions taken.

I have lost friends. They simply peeled away, apologetically. I have made friends with the deep fears in my mind. I have faced up to them, stared them down, but still there is the gnawing loneliness. Or is it simply facing up to life as it really is? Unpredictable and utterly random.

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