Tag Archives: diagnosis

Oct 28 2012
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My Ramblings

A Recipe for Changing Your Life

happy housewifeThis is best for the novice cook – the less experience you have, the better. But do make sure you choose your ingredients carefully!

Ingredients

  • A good few relapses – drop into mixing bowl, one after the other in rapid succession.
  • One firm diagnosis of multiple sclerosis – this could take you a while to obtain, so be patient.
  • Two evil bosses. If these are difficult to find, check under stones, where they are fond of crawling out from.
  • A liberal sprinkling of heavy-grade bullying at work, of the nastier  and more vicious variety.
  • For added panache, throw in an unfair dismissal along with a copy of the Disability Discrimination Act.
  • Finally, a good dash of steroids, MRIs and a lumbar puncture.

Method

  • Mix all the ingredients together well. You are aiming for a gloopy, gungy consistency
  • Simmer at the highest temperature for just over a year.

Best served with

This recipe can be hard to stomach so make sure you have the following:

  • The best friends you can find (you know who you are)
  • A darn good support network – http://shift.ms/ and http://www.msrc.co.uk/  are amongst the finest
  • Copious amounts of wine, chocolate and laughter

After digesting, pick yourself up, dust yourself down and get out of the kitchen. There’s a bright, shiny new world waiting for you…

 

 

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Oct 24 2012
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Work and Studying

Confused but Elated

Boardroom, 9am, yesterday morning. The Showdown.

Five minutes later, I’m in the car on the way home, blasting out music, giggling away to myself like a maniac. I am free.

To recap, on Monday I was dismissed from my job of two years on ‘health grounds’. It’s for my own good, of course. I was given no chance to bring a representative with me, which I believe is illegal and I mentioned that point several times during the meeting. They were prepared, I was taken completely unawares. I asked for two months and they said they would get back to me in the morning.

Tuesday morning. They agree to my ‘demands’ on the understanding that I will work from home. I am to go back in on Thursday morning to collect my belongings, pick up a memory stick full of the documents I need, give them a chance to gawp at the ‘sacked’ girl then leave behind that sad, sorry part of my life forever.

How do I feel? Shocked, confused, delirious with freedom from bullying. It’s a truly disgusting scenario and I still find it hard to digest. Can this really happen in 2012? I am confused as I suddenly have so many options. My world has opened up in a delicious way. I will no longer have to face day after day of endless criticism and exclusion. I no longer have to creep around, ‘apologising’ for my very existence and a diagnosis of multiple sclerosis.

Will I take it further? I am speaking to an MS lawyer on Monday. I am going to keep all possible avenues open. But for now, I have 9 weeks of guaranteed income. I will be my own boss.

This will be a fresh start.

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Oct 20 2012
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Emotions

My dad, his MS

My dad died in the 1970’s, aged 35, from complications arising from multiple sclerosis. I was four and a half. I don’t think I remember him, as I find it difficult to distinguish real memories from what I have been told.

Over the years, of course I missed my dad, but was it hard to miss what I had never had in my life? I pieced together his MS progression, picking up hints here and there. Back in the 1970’s, MS was often referred to as ‘creeping paralysis’ and was a deadly diagnosis. MRI scans were not actively used until at least the 1980’s, there were no disease modifying drugs and people like my dad were routinely written off and sent home to cope as best they could with what little they had.

I recently heard that my mum had invested her meagre savings into buying a serum from the Eastern-bloc, which would apparently halt, then reverse my dad’s symptoms. She paid a dubious middle man and her money, and the serum,  were never seen again.

Now I have MS, confirmed through two MRI’s, showing the progression of my illness in devastating detail. I have my pick of drugs. I have a whole MS team behind me and have been assigned a neurologist and MS nurse. There is physiotherapy, yoga, counselling and an incontinence nurse if I need her plus a whole raft of support groups and forums. Do I feel lucky?

Yes, of course I do. I was fortunate enough to be born into an era of medical expansion and discovery. Hopefully we will have a cure for MS within a decade. Whilst I was going through the diagnostic process – a tedious, frustrating, point-ticking process – I put a photo of my dad on my kitchen windowsill so I could see him every morning. ‘Thanks, dad’, I would say as I put the radio on. Of all the things you could leave me with, you had to pass on this. Cracking legacy. I was angry, furious.

In a strange way though, having MS made me feel much closer to my dad. With every new symptom – and there were many – I would align myself with him. Did he have this, did he have that? I felt as if we could have been kindred spirits. I may have his eyes, his mannerisms, his fearlessness, but that is only what I hear, what I have been told by other people. Now, I have something I know he experienced.

Is that odd? I hope that I can take every opportunity going, as my dad did not have the chance, or lifespan, to do so. If I can somehow honour his memory in this way, then I will do everything I can to do just that.

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Oct 12 2012
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Symptoms and Treatment

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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Sep 24 2012
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Emotions

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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