Tag Archives: diagnosed

Oh, So I’m Ill Then?

An odd thing happened to me at my latest blood test (apart from being compelled to buy chocolate…). I have blood tests every month, so no news there. But this time, I had a new nurse.

She must have been reading my notes before she called me, as she came through to the waiting room, gently tapped me on the shoulder and gestured for me to follow.

Puzzled, I put away my book and went with her. In her room, she pulled out a chair and almost helped me to sit down. I was starting to get a bit worried. Did she know something I didn’t?

She sat down, clicked through her computer screen, then turned to me with big, sad eyes and said, ‘you poor, poor thing. You’re what (looking back to screen), only ten years younger than me, but you’re so, so brave, so strong’. Huh? ‘Oh, we don’t see many people with MS here’. She asked me how I was coping with the diagnosis, what my fears for the future were and whether I had to make any…adjustments. Wheelchairs, catheters and walking sticks flashed through my mind, none of which I need. Yet?

This got me thinking. I’ve been through a horrendous year and the diagnostic process isn’t easy. There’s no single test, there’s a set of criteria you have to tick before you move from a ‘single’ attack to ‘multiple’ sclerosis. It’s incredible what you can come to think of as your new normals and you just shift your life around them. I think I’m doing pretty well and I don’t live my life as an MS victim/sufferer, I just happen to have MS. But things like this pull you up short, and the fear rises again. I really am ill?

Finally, she took my blood pressure. ‘Mm, it’s awfully high. Are you anxious about anything?’ Not before I came in here, I wasn’t….

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Job centre blues

After burrowing around in the murky depths of disability and work legislation, I have now been assigned a Disability Employment Advisor and on Monday I went to visit her at the local Job Centre. To cut a very long, sorry saga short, I have been bullied quite badly at work ever since my diagnosis of multiple sclerosis was confirmed and I need to find a new job. Pronto. Can you believe this is still happening in 2012?

Anyway, I’m told to bring my CV and turn up at 11.20 sharp. I arrive early and am met by two doormen. Bouncers? Honestly, they stand there in dark suits, look me up and down with raised eyebrows and I’m half expecting them to say ‘sorry love, you can’t come in here looking like that’. I’m on the list though, so I’m in.

I’m directed into a vast, bland, utterly depressing room with splashes of green logo and dotted with a bewildering array of prams, shopping bags and people slumped on the sofas. Other people are hunched over large ‘job generating machines’, pressing and clicking buttons like they’re playing one-armed bandits in a pub. I pick my way through the crowd, perch on the edge of a dingy sofa and wait. And wait. The staff call people up to desks, looking bored out their skulls (well, they already have jobs) and still I wait, my CV wilting in my sweaty hand.

Finally, I’m called. We run through the ways MS can get in the way of working, my skills, my career aspirations and which hours I can work. My advisor then turns the computer screen round so I can see it. Two possible jobs. Cleaning and daytime pizza delivery. Huh?

She tells me I am over-qualified for most of the jobs they have, but due to my reduced working hours, childcare issues and disability, that’s all they have. I thank her, walk unsteadily to the door with as much dignity as I can and leave it all behind. On second thoughts, I go back, slip past the bouncers and yank a ‘How Did We Do?’ form from the front desk.

On it I write Abandon Hope All Ye Who Enter Here, shove it in the box and go.

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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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