There are quicker ways to get to Blackpool …

Paul Hodgkinson is usually on the other side to me. By that I mean he is usually defending whilst I am prosecuting. And so we dislike each other greatly and barely speak save to exchange snarls across the courtroom …

Having said that he can’t be all bad as next Sunday 8th July 2012 he is cycling from Manchester to Blackpool to raise money for the MS Society (I don’t think anyone has told him that there is a train if he fancied a day out by the seaside).

If you would like to support him and this excellent cause you can do so below (I do actually quite like him, but don’t tell him that ;))

http://www.justgiving.com/Paul-Hodgkinson

Good luck Paul – hope you got a comfy saddle!!

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6 months, 6,661 readers later.

Six months ago today I wrote my first ever blog post ‘How it all began’. I didn’t really know who would read it but I wrote it anyway. It actually helped me a lot – writing down what had happened to me and how I felt about it, without the need to ‘censor’ the unpleasant details for friends and family, was actually pretty therapeutic in a funny kind of way.

And so I carried on writing about my experiences as they happened in the same frank, honest and I hope amusing kind of way – just the way that I am, I think.

Since then my blog has been viewed 6,661 times (as of now 9:49am on Saturday 30th June 2012). The busiest day by far was 7th January 2012 with 487 views – which coincided with my friend Jennie posting the link on her Facebook account and increasing my readership by 486 (up until then my mum was the only reader). Now there are regularly days when it is viewed around 100 times – they can’t all be my mother – surely?!

The ways in which people find my blog interests me greatly. Many, who presumably know me in some way, simply type ‘Nicoletta Amatino’ or ‘Glamorous Girls Get MS’ or something similar into Google. Some, however, make me wonder what it was they were actually looking for – I certainly don’t think it was my blog. My favourites include*:

‘have or had or having to take my or her or their or our nylons or stockings or tights off’

‘why cant you use yellow dabber for bingo’

‘glamorous girls flashing’

‘how likely i am to get run over by a bus tomorrow’

‘HHJ Lever’

‘nicoletta amatino husband’ (an admirer perhaps?!)

*sorry if any of these were you*

I have ‘met’ lots of fabulous people through writing the blog and through twitter – some who are living with MS like me – some who aren’t – but all have been supportive, understanding and in fact complimentary about the whole thing.

When I am writing I sometimes forget that most people I know and many that I don’t are going to read what I have written. And so there are now a lot of people who know all about my propensity to pass out, my weak bladder, my monster bites, my falling over and a whole host of other embarrassing stuff.

But if it makes someone giggle, especially someone else going through the exact same thing, then I don’t really mind.

There’s lots more to come so keep reading.

Nicoletta x

23. I’m a celebrity …. and I have MS.

Upon hearing the news I sent Jack the following tweet:

‘Hi, I have MS, was only diagnosed at Christmas. I write a blog if you fancy a giggle, it’s GlamorousGirlsGetMS.com

Good luck x’

‘PS. Pearl is the best name ever! Fact! This is my Pearl’

(For those of you who don’t know, Jack’s new daughter is called Pearl … as is my cat.)

Perhaps needless to say but I didn’t get a reply. I guess he’s probably had quite a lot of support already.

I have to say I was slightly aggrieved that my diagnosis in December hadn’t attracted quite the same level of press attention. But then again ‘barrister and lover of cats and gin’ doesn’t have the same ring as ‘adrenaline junkie and son of Ozzy and Sharon’.

Nevertheless Jack’s ‘coming out’ can be nothing but a good thing.

MS is a condition that does’t generate as much interest as some others. It’s rarely in the press and MS charities aren’t as dominant as the cancer charities for example. Yet in the past week MS has been all over the bloomin place, trending on twitter, on the news, featuring on talk shows…

And I thought I was special.

Obviously an increase in awareness is excellent. On the other hand, however, there has been the usual sensationalism and pessimism that goes hand in hand with publicity. The old ‘can you die from MS’ misapprehension has reared it’s ugly head again. (The answer, by the way, is no although those with MS can expect a slightly shorter life expectancy than otherwise might be expected.) As has the ‘I gave my child MS’ myth. (If you ask my mum – yes she did – if you ask a medical practitioner – no she didn’t).

So good on you Mr O for admitting your membership of the MS club. Your membership card and pin badge should be in the post. It entitles you to an unlimited pass to the neurology department of your local hospital. And if you’re really lucky, a bingo dabber …

If this continues though, I’m going to have to relinquish my own membership and get something that’s, well, more exclusive. 😉

22. The Relapse Clinic.

‘I feel like I’m falling apart’ I told Karen, an MS Nurse Consultant at Hope Hospital.

“Well we’ll put you back together’ she replied.

I’ve never had a ‘relapse’. I mean I don’t think my leg going numb could be classed as a ‘relapse’ as it was the first MS-thing that had happened to me. Perhaps that was simply a ‘lapse’ which makes what has happened to me during the last couple of weeks my first relapse.

It started 3 weeks ago now with dizziness and feeling unsteady on my feet and developed into pain, numbness and pins and needles in my hands and arms and numbness in my right foot again …

And so I have been to the Relapse Clinic at Hope Hospital on the last two Wednesdays.

Karen explained that as I had something wrong with my hand I would need to do a new test – the peg test.

There was a board with 9 holes in it – 3 rows of 3 – and a section in which there were 9 pegs each about an inch long and thinner than a pencil. The test involved picking up the pegs one at a time and placing them in the holes before taking them out again one by one and putting them back in their section of the board. First with my right hand and then with my left. Whilst being timed. This way my test-times could be compared to see whether my hand was getting better or worse on later occasions.

I found this harder than the walking test. Firstly because I am quite strongly right handed my left hand is pretty rubbish at the best of times. And secondly because my right hand was feeling numb and clumsy and sore and so I found it hard to pick the silly little pegs up. My first finger and thumb didn’t seem to want to grip. I felt like I was wearing a woolly glove. And as most of you will know it’s hard trying to pick up very small things when you have gloves on in the winter.

Apparently there isn’t much that can be done in the event of a relapse. There isn’t a cure or a pill that can make it stop. A short course of high-dose steroids can be given but that it more to assist recovery than stop the relapse. And of course painkillers to help with the pain.

It’s really just a case of seeing what happens. Of giving my Charlie’s Angels kick ass immune system time to realise that it has got the wrong baddie – that my nervous system isn’t the enemy and they can, in fact, live along side each other in peace and harmony like the Waltons … (see post number 3 ‘The Science Bit’)

The one ‘good’ thing that has come out of all of this MS stuff has to be the people that I have met. Whether it be other MSers in person or on twitter, or the fabulous medical practitioners who are helping me. Nothing it seems is too much trouble, no question too stupid. I’m not just another patient with MS to them, I am Nicoletta …. and from these recent visits it seems I am … Nicoletta the patient who passed out in the waiting room after the blood test … oops.

21. The MS Convention.

These days there seems to be a convention for whatever you are into – whether it be food, craft, lego or star trek – there are events and get togethers where people sharing similar interests can congregate and revel in whatever floats their boat.

And, believe it or not, MS is no different. MS Life is an event organised by the MS Society where us ‘MSers’ (the MS equivalent of trekkies) can get together.

And, believe it or not, this MS event takes place in Manchester of all places, right on my doorstep.

This year it took place on 14th/15th April at the Gmex exhibition centre.

I went along on the Saturday. There was a full programme of events taking place, with various talks on different aspects of MS, research and treatment, with different experts. There was a section called ‘ask the experts’ where you could speak to MS nurses, consultants, neurologists, physiotherapists, occupational therapists – a whole host of experts all in one place, available to answer questions which was pretty amazing.

I wandered around, looking at people. Trying not to let them see that I was looking at them. I could have done with sunglasses. Trying to work out which member of a group or couple was the ‘MSer’. After all none of us were wearing the equivalent of ‘tekkie ears’. Some were obvious, mainly because they had difficulty with mobility and used a scooter or stick, but others weren’t at all.

I wondered whether they were looking at me, wondering the exact same thing.

I wandered around looking at the different stands … mobility aids … assistance dogs … bladder and bowel care products (catheters) … disability law service … carers … off road wheelchairs … contemporary walking sticks … riding for the disabled ….

‘Bloody hell!’ I thought. ‘This is like … well … (not wanting to sound un-politically correct, as if everyone could hear what I was thinking) … stuff for disabled people! People who can’t do things. Who need help with things. This isn’t me!’

I suddenly thought that me being there was a terrible mistake as none of this stuff seemed to apply to me at all. I contemplated leaving there and then. But then again I hadn’t been there very long so I went to the refreshment area, got a complimentary coffee (and a huge bun to cheer myself up) and sat down to ponder upon what to do next.

As I arrived at the Gmex I had been given one of those cotton shopping bags with the MS life logo on the side – a ‘goodie bag’. It had stuff in it … the programme of talks and events … an MS pen … some leaflets … and a brochure of ‘mobility products’ with a state of the art mobility scooter on the front being ridden by a grey-haired lady who looked very pleased with herself.

“Bloody hell!’ I thought. Again. ‘Do I look like someone that needs a mobility scooter catalogue?!’. After all I had walked there from my flat without so much as a stumble.

In need of some moral support, some assurance that I was not … ‘disabled’ … I text Tom who was in Spain on a stag doo and told him that I had been given a ‘scooter catalogue’.

‘Ooh, do you want one’ came his reply a few minutes later.

‘Want one?! Want one?! What kind of f**king reply is that?!’ I thought, furious. This was not the time for jokes or flippant quips. How bloody insensitive.

But, rather than storming home in a huff, I had a look through the programme and chose some talks that interested me; one on managing relapses, one on how to cope with diagnosis and finally a scientific one on disease modifying drugs. These were actually very useful and I learnt quite a lot in-between catching sneaky peaks at the rest of the audience and playing ‘spot the MSer’.

By this time the day was coming to an end so I decided to leave. On my way out  I stopped at the ‘ask the experts’ area and had a quick word with an MS nurse about my monster bites (injection site reactions – see blog 18. ‘Bumps, bruises and bio oil’). She asked when I had been diagnosed – Christmas – and whether I was there on my own – yes – she asked whether my family knew about my diagnosis – yes – and how I felt about it – ok(ish) – she said I seemed to be dealing with it really well, especially the injections.

Now you know when you are putting a brave face on things, but infact, inside, you are upset. And your brave face does not crack as long as no one is nice to you. And then someone is nice to you and your brave face slips to reveal your true face underneath? Yes that. Well that’s what happened then. I had been ok (just about) up to then with the mobility aids … assistance dogs … bladder and bowel care products (catheters) … disability law service … carers … off road wheelchairs … contemporary walking sticks … riding for the disabled …. even the bloody scooter catalogue … but as soon as the MS nurse was nice to me I realised that I was not ok at all. I was devastated. And so I decided to go home.

Luckily that evening I was rescued by my friends Wendy and Mark and their niece Sofia who cheered me up no end with a trip to the cinema and a pizza.

What an amazing event. But so upsetting at the same time.

Some time later I brought up Tom’s rather heartless response to my text message about the scooter catalogue. It turned out that when I said ‘scooter’ he thought I meant ‘scooter’ as in ‘Vespa Scooter’ as I had learnt to ride one last summer… and when he said ‘would you like one’ that’s what he meant …

Well yes actually … I would like one … a black Vespa with a tan leather seat would be much more my style. And that sounds like an offer to me … 😉

20. ‘Frequency and urgency’

‘Hmm … frequency and urgency …’ my lovely MS nurse said knowingly when I told her about my latest problem.

She explained that it was probably down to my brain getting the signals all mixed up again.

I imagined it to be like one of those old fashioned telephone exchanges up there. You know, when telephone exchanges were manned by glamorous girls wearing pencil skirts and red lipstick, with headsets, who took incoming calls and directed them on to their destination by switching plugs with wires attached on a big board … except the glamorous-telephone-exchange-girls in my brain have been on the gin at lunchtime and keep sticking the plugs in the wrong holes.

And so my bladder seems to have shrunk to the size of a baked bean.

… about 10 minutes after I have pee’d I feel like I need to pee again. And so I go to pee again. Except when I try to pee again, I don’t really need to pee again and cannot pee again. Probably because the frequency with which I feel I need to pee does not match the frequency with which the human body is required to pee unless one has drunk a whole swimming pool.

Then sometimes, when I do actually need to pee, I go from needing to pee at an acceptable and infact normal level of urgency to incredibly urgent in a very short space of time. Indeed a space of time far shorter that is sometimes convenient given the demands of everyday life and a job which requires me not to move from the courtroom for long periods of time.

It seems that this is known as ‘frequency and urgency’ in the business.

It was suggested that after I have pee’d I hang around a little in the cubicle to give the now tipsy girls in the telephone exchange time to catch up. In other words stand up for about a minute before sitting down again and having another go …

‘Hello caller, how can I direct your call … Hic?’

‘Hello glamorous-telephone-exchange-girl, it’s the bladder calling, please can you redirect me to the brain?’

‘Why certainly bladder, re-directing you ….’

*Cue much to-do in the telephone exchange as the glamorous-telephone-exchange-girl fumbles around with the plug from the bladder, wishing that she’d had a sandwich in preference to that liquid lunch whilst I stand self consciously in the cubicle, willing the seconds to pass until eventually (about a minute later) the call is connected and the message gets through that I need to go again ….

It was also suggested to me that I may benefit from pelvic floor exercises – the mere mention of which instills a sense of unease into most women …
I had a rough idea what they involved but wasn’t sure. So I did what any girl would do in this situation and asked my mum ….. who gave me a detailed run down over afternoon tea.

And so now I am proficient in both pelvic floor exercises and killing 60 seconds in a toilet cubicle …

I just wish someone would give those telephone exchange girls a talking to … although it is arguably never too early for a G&T ….

19. Forecast …. rain/sun/cloud/snow

The other day I read this on twitter:

‘If you want to accept your MS, visit a lung cancer patient. 97% fatal 6 months – 5 years. They’d trade places in a minute.’

This had been written by someone with MS but luckily it wasn’t directed at me. I say luckily because if it had I would have had to reply. With a number of expletives. Because it made me mad. And upset.

Ok, so MS isn’t going to kill me. But it is, in its own way, a life sentence.

The worst part by far is the not knowing, the uncertainty, the fact that even the doctors can’t tell me how it is going to affect my life. I may be fine for the next 10 years. But then I may have a series of relapses and find my mobility severely restricted. I may wake up tomorrow with new symptoms. Problems with vision, speech, balance, bladder, tremors, pain. Or I may not. Because that is the problem with MS. There is simply no way of knowing what is going to happen. And that uncertainty is, in some ways, worse than a prognosis that is poor, but definite.

The best way I can describe it is it’s like having a grey cloud hanging over my head – at the moment I am doing ok, things are pretty sunny, carrying on pretty much as normal, things are just a bit overcast now and then – but I never know when it will start to drizzle or worst still develop into a full blown storm complete with thunder and hail stones. A bit like the weather forecast, MS cannot be trusted.

Having MS really has fu*ked with my head. It has made me question everything.

My career, my relationships, my future.

I always thought I had a forever to do things, to go places, to have a family. Being told that forever may not be quite as long as you thought or may be limited in some way is an extremely difficult thing to deal with.

Do I carry on along the road I am on or do I strive for something else, with the possibility that I never find it? Do I bring things forward, try and fit them in just in case? Or do I carry on as normal, not giving into MS, and run the risk that I may have to take an alternative route in the future according to my limitations?

I cannot imagine what it must be like to be told that there is a time limit on life and my heart goes out to those with incurable diseases such as those mentioned in that ‘tweet’ I quoted.

But equally I too am living with an incurable condition and whilst it won’t kill me the feelings of grief, anger, pity and sadness must surely be the same.

‘Not knowing what the future will bring means you have to flourish in the now’