7. I might get run over by a bus …

Human beings are inherently rubbish at knowing what to say when presented with bad news. That’s not a criticism, just an observation I have made. I am guilty of it myself. We just don’t know what to say, scared of saying the wrong thing or making it worse. We automatically try and ‘look on the bright side’, finding a comparison to someone worse off than ourselves, to make it not seem as bad. It just seems to be human nature, how we are wired up.

And it is true, I might get run over by a bus tomorrow. But more likely that I won’t. And it is true, I might never have another episode of MS. But more likely that I will and will have to learn to adapt and live with it. Because sometimes there isn’t a bright side to look upon. Things are just as they are.

This must be a very difficult concept for parents to come to terms with. Certainly mine have spent the last 30 years trying to put things right for me. Like pulling me out of the grid by my ankles when I fell in head first when I was 3. Picking me up from Guide camp when I was homesick and delivering me back there the following morning after a night in my own bed. Driving to Sheffield at night when I locked my keys, wallet and phone in my car. And so the list goes on …

But this is one thing that they can’t fix. They can’t change. And I know that they find that very difficult.

And so it is I have tried to protect them, shelter them from the reality of the situation. As they have sought to protect me for the last 30 years, now I try to do the same for them. Certainly when my mum read my first post ‘How it all began …’ she remarked that I had never told her it was that bad.

But that, I have found, is where friends come in. Friends don’t need to be protected. They don’t have the same guilt, the same fear of not being able to put it right. I have cried with my friends about recent events but I also have had a good laugh with them too. Infact a certain group are currently saving to buy me a Ted Baker designed, swarovski crystal encrusted mobility scooter and hopefully will have managed to save enough if and when the need for it arises …

I’ve found that sharing my situation with friends often encourages them to share their own experiences of things that they have been through that are connected in some way, experiences that I would never have otherwise known about. And so it has brought us closer.

Some people are better at this than others. Some people struggle with what to say, it makes them feel awkward. But it doesn’t mean that they don’t care.

One such friend of mine is Neil.

I met Neil back in 2003 through his now wife Philippa. I sat next to Philippa at Bar School. I nick-named her Phylis. It soon became clear that Phylis and I had a lot in common and so we became friends. It soon followed that Phylis and Neil and Me and Tom started socialising together going for meals, drinks, pub quizzes and annual trip to the Halle concert at Tatton Park complete with a very sophisticated multi-course picnic.

Neil recently described himself as ‘effectively useless at dealing with difficult situations’ in relation to my diagnosis. However he also offered to assist with my injections once they arrive which I took as a sign of deep concern and not that he wants to stab me …

Anyway Neil came up with the most amazing idea. On 22nd April 2012 he is running the London Marathon. And he has decided to run it for me.

When he ‘asked’ me whether it would be ‘ok’ for him to do this I wept. Luckily it was via text message and so he didn’t know I was crying or he would probably have gone to pieces … I couldn’t believe that he wanted to do this for me. It was amazing. For as long as I can remember I have wished, no yearned, to be the proud owner of the holy grail of footwear … the sexy red soles … the sharp sophisticated heel … the buttery soft leather … a pair of Christian Louboutin’s … they were the only thing that could cheer me up and after all I deserved them in light of recent events.

It was then that Neil explained he was in fact going to do the marathon in aid of the MS Society. Not shoes. My heart sank …

On a serious note, Neil’s efforts are truly amazing. This will be his third marathon and so I am expecting him to place quite highly or perhaps even win, him being a dab hand and all. His training is well underway and only last week he was forced to run a half marathon on a treadmill whilst on a work trip to America. Although he’s still got nothing on me on the walking test … he’s rubbish at speed walking in stilettos.

If anyone would like to sponsor Neil you can do so here:

http://uk.virginmoneygiving.com/NeilWilkinson

So thank you Neil. I’ll be there on 22nd April to make sure you aren’t slacking. And I don’t know whether you know, but some extra vitamin D might help … I was thinking a little trip to the Maldives???

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6. Gin, jabs and jelly-legs …

As I’ve already mentioned there isn’t a cure for MS. No magic pill or potion that will set my immune system back on the straight and narrow and remind it who the targets of it’s aggressions should be …

… Instead, there are drugs that can help reduce the number and severity of relapses and these are called Disease Modifying Drugs.

You remember we talked about the protective coating around the nerves – the myelin – that comes under attack from my misguided immune system which mistakes it for the bad guys … (See post 3 ‘The Science bit’) ….  Well Disease Modifying Drugs work by mimicking the myelin and building up the layers. In other words body armour for my nerves offering added protection for when my immune systems launches a kung fu style attack.

Whilst this all sounds very positive there is actually no clear research as to the long term benefits. Clinical trials show a reduction in relapses of around 33% compared to what would have been expected where there was no treatment.

Weighing it all up it seems to me that a 33% reduction is better than a 0% reduction and so I have decided to give the drugs a go. Given my MS is at an early stage, it seems like a good idea to start layering up my myelin with body armour whilst I have the chance, after all if I start now I might build up some light artillery and if I’m really lucky some weapons of mass destruction too.

This was all explained to me by my consultant and MS nurse at my last appointment. They were also of the view that it was a good idea. I agreed, expecting them to write me a prescription for a pill that I could collect at Boots on the way home. But there wasn’t a prescription, a pill or even a potion.

My MS nurse, who is lovely by the way, took me into another room to show me the requisite kit. A months supply of 30 syringes, ready filled with a drug called Copaxone.

Blimey. Injections. Everyday. Done by me. Yikes.

It was hot in the room. It was really hot and claustrophobic and the walls were closing in. I could see stars. I was sweaty. I was going to feint. My legs went like jelly. I had to hastily go outside where I gulped the fresh air and sipped a glass of water. I’d only just been shown the needles. Good start eh?!

It turned out that whilst I will have to do the injections everyday, by myself, I will be assisted by a plastic pen thing that I will load with the syringe, place onto my skin and ‘click’ the button whilst the pen does the actual injecting bit.

This freaked me out somewhat. In my job the people I meet who inject everyday do so for very different reasons, have track marks up their arms, ulcers from repeated use of injection sites and in extreme cases flesh-eating infections (that last one wasn’t a joke).

Apparently I can avoid all of the above by following the instructions on good injection procedure and technique and by rotating injection sites every day between a choice if eight.

It still feels me with dread. ‘I’m going to end up like a colander’ I told one friend. ‘That’s no good, the gin will leak out as soon as you have drunk it’ he replied.

I have since spoken about this with friends, and in fact a couple who have had to do something similar albeit for limited periods of time (and without the assistance of a pen thing I hasten to add) and they managed it.

I hope that once I get going it won’t be too bad, that I will get used to it, that it will become part of my daily routine like putting my face on and brushing my teeth.

At the moment I am waiting. Waiting for the call to be told that my jab-kit is on it’s way. Waiting to receive delivery of it at my flat. And waiting to make the call to my MS nurse to arrange a time for her to come round and teach me what to do …

5. Speed walking in stilettos.

Not wanting to blow my own trumpet but I’ve always considered myself fairly proficient at walking. I never really had a problem with it apart from the odd gin-induced mishap … or in fact last week when I fell flat on my face on The Avenue in Spinningfields having taken a cheeky detour to the Ted Baker sale (karma perhaps).

Anyway I never thought that walking was an issue until I started going to the MS clinic at Hope Hospital.

On the first occasion in May 2011 I was called from the waiting room into a private side room by a lady, I think she was a nurse. She was holding a clipboard in one hand and had a stop watch hanging from around her neck. “I’m just going to do the walking test” she said. The walking test?! I had just walked into the side room with her. Presumably she had seen me. Was that not enough? How did she think I’d got to the clinic through the hospital warren, or from the car to the hospital for that matter?

It then emerged that the walking test is a timed walk of 25 metres, along the length of the clinic waiting room, whilst everyone sits there, watching, waiting for their appointments.

“But why?!” I hear you cry. Well quite frankly I don’t know. But in usual barrister style, I saw anything that involved the word ‘test’ as having a competitive element and thus being a challenge.

On the first occasion I had gone to the clinic before court. I was wearing a suit and my usual killer heels. Suddenly my competitive streak reared it’s head. If I had known I’d be doing a walking test I’d have worn more appropriate footwear, my running trainers or at least flats. I’d have warmed up or at least done some pre-walk stretches discretely in the waiting area. But as it was I was completely unprepared. And as anyone who does my job knows, this is bad news.

I asked if I could at least remove my shoes but my request was denied on the grounds of ‘health and safety’ although I was more likely to have suffered a health and safely mishap speed walking in my stilettos than I would have in my stockings alone. Either way it would have made for an interesting entry in the Accident Book.

I had to stand at one end of the waiting area, poised on the starting block, until the lady said ….. ‘go!”. I then walked as fast as one can in killer heels on a polished vinyl hospital floor whilst the lady scurried behind me, gripping the stop watch.

13.85 seconds. I asked whether I could be given a handicap allowance given my footwear. “No” I was told.

In October 2011 I went to the clinic again. It never occurred to me that they do the bloody walking test every time. After all I had proved I could walk last time and had managed it without incident in the intervening five months. I kicked myself, literally, with my stupid stiletto. Why hadn’t I worn different shoes.

14.66 seconds. An increase of almost a second. This just wouldn’t do.

So, by the third occasion in December 2011 I was ready. I attended the clinic in good time to perform some warm-up lunges in the corner. I was wearing my flat knee high boots. In the interests of retaining some glamour and dignity I had drawn the line at my running shoes given the dress I was also wearing.

I stood poised at the starting line taking deep slow breaths. Anyone would have thought I was in the starting blocks for the Olympic 100 metre sprint final. “Go….” the lady with the stop watch said …. and I was off down the waiting area as the other patients looked on…….

13.53 seconds. The quickest yet. A personal best. Get in!!!!

The sad thing about the walking test is that whilst everyone gets to see me doing it, I get to see them doing it too. I watched the lady, of around 40, who shuffled along the route, one of her legs clearly not behaving in the way she wanted it to. I watched the man, older perhaps in his 50’s, take what seemed like an eternity to get from on side to the other using his stick as I willed him to finish, partly to save his own blushes and partly to save mine as tears welled up in my eyes at the thought of me there in years to come, still in stilettos, still trying to speed walk, but with a stick and my personal best being measured in minutes instead of seconds ….

4. My mum gave me MS …

My mum gave me MS. Or at least that’s what she thinks.

You see my mum has Rheumatoid Arthritis which is also an autoimmune condition – a condition in which the immune system gets the good guys and the bad guys mixed up (see post 3 ‘The Science bit’). And so she thinks that the reason my immune system has taken a wrong turn is down to her; that along with the colour of my eyes and an artistic streak, she passed on an immune system that was faulty and not upto the job.

But MS isn’t directly inherited and there is no single gene that causes it. Infact, I haven’t been able to get to the bottom of what does cause it. It seems that nobody has. That nobody knows. It’s just ‘one of those things’ which is a rather unsatisfactory explanation for someone as nosey as me.

What made those grey smudges appear on my scan? Where did they come from? Why did they pick me? How long have they been there? When did I get MS? Why did I get it?

A whole host of questions which will always remain a mystery, like whether the Loch Ness Monster really exists and whether the people on The Only Way is Essex are actually real …

It seems that a lot could be down to where I live. Apparently the number of cases of MS increases as you move further away from the equator. In other words you’re less likely to get it if you live somewhere hot and sunny but more likely to get it if you live somewhere cloudy and damp. So as much as I love you Manchester, you haven’t done me any favours on this one …

Research suggests that levels of vitamin D could be a contributory factor which I guess makes sense given the links to sunshine – one of our main sources of vitamin D. And we certainly don’t get much of that in these parts.

Sounds like a good excuse for some long holidays to far flung tropical destinantions if you ask me. After all every cloud has a silver lining and all that.

So mum whilst you did give me your big blue eyes, confidence, feisty determination and an inherent belief in girl power – like your massive bangers MS is something that you definitely didn’t share with me.

Thank you…

As you all probably know I’m not on Facebook so when on Friday evening Jennie suggested she ‘poke’ my blog or whatever it is you do on Facebook I agreed. But after a Bellini and several glasses of wine I underestimated the power of Facebook. By Saturday afternoon I was receiving comments on the blog, texts and messages on twitter. I had been well and truly ‘outed’. Like the time HHJ Lever asked me which Chambers I was from and I had to admit to the packed court room that I was …. CPS.

I have been absolutely amazed and touched by the response. Not only has everyone read the blog but you all seem to like it and have taken it in the way it was intended. So a huge thank you. I know you don’t need me to tell you not to be sad about it. And it’s ok to talk to me about it. All I ask is that you keep reading.

Lots of love xx

 

3. The science bit …. because I’m worth it.

I didn’t know anything about MS at this point. What I did know was that it didn’t sound good. I certainly didn’t take it in and to be honest, 12 months later, I probably still haven’t.

A short time later I had to have a second scan at Hope Hospital. The appointment was sandwiched between me finishing work and having my hair done, both back in the city centre.  I arrived with little time to spare (as usual 😉 and found that the radiology department was at the opposite side of the hospital to the carpark, along corridors, upstairs, through doors, downstairs, along more corridors. I ‘ran’ as fast as one can in heels and arrived, hot and bothered, but just in time for my appointment. It was only then I saw the sign which said they were working with a delay of an hour on appointment times. A hour?! I only had 90 minutes to have the scan, drive back into town and make it to Toni and Guy. And I couldn’t miss it. After all my greys were coming through thick and fast.

As I sat there waiting I seriously considered leaving so that I could make my hair appointment. The scan seemed unimportant and inconvenient compared to my colour and cut, especially as I was going out the following night. I got more and more twitchy after I telephoned the salon and discovered that I was their last appointment. Looking back I’m glad that just as I had prioritised my hair over my health and decided to leave, my name was called and I had no choice but to have the scan. Incidentally, I made it to town in time to have my colour and had the cut two days later, so all was well in the end.

Following this I was referred to a specialist MS Consultant at Hope and a specialist MS nurse who explained what all this meant …

MS is an autoimmune condition affecting the nervous system. The immune system, as you probably know, usually fights infection and bad stuff – think Lucy Lui in Charlie’s Angels (cat suit, glossy hair, kick ass moves). MS basically means that my immune system is confused and mistakes the good guy coating on my nerves (called myelin) for the bad guys (like bacteria) and tries to fight it off kung fu style. Unsurprisingly the myelin does not like this and becomes upset and damaged which in turn disrupts the messages from my brain (I know it doesn’t take much as the best of times) in their travels through my nervous system.

The best example I was given is to think of the nervous systems as being like an electrical circuit with the brain and spinal cord being the plug sockets and the rest of the body being appliances plugged into it, like hair straighteners* for example. If the plastic coating on the wire to the plug on your hair straighteners becomes damaged, girls we all know they will become temperamental, emit sparks (as mine did once!) or give up working altogether. Well myelin is like the plastic coating and damage to it has the same effect on the nervous system – it becomes temperamental or emits sparks and in severe cases spontaneously combusts. (Ok the last bit was a joke)

*boys, please insert power drill or computer into this example.

It was this damage that caused the numbness in my leg, a physical symptom of de-mylination, which is referred to as a ‘clinical episode’.

In order to diagnose MS it is usual for the patient to have experienced two ‘clinical episodes’ which are defined as symptoms that have lasted for more than 24 hours. So, this could be bits going numb, difficulties with vision, speech, bladder – anything that is controlled by nerves which is pretty much everything that involves any sort of movement.

There are also different types of MS; ‘relapsing remitting’,’primary progressive’ and ‘secondary progressive’. Most people who are diagnosed initially have relapsing remitting. This is just as it sounds – flare ups or relapses followed by remission – so my leg went numb but then gradually got better. Relapses can, however, leave lasting damage like the ongoing problems I have with numbness and tingling in my leg – a result of the damage to my nerves caused by my kick ass, yet confused, Lucy Lui immune system.

Most people who start with relapsing remitting MS go on to develop secondary progressive. This is where symptoms do not go away completely after a relapse and there is a steady increase in disability.

Primary Progressive MS is the least common form and from the outset symptoms steadily worsen and disability increases.

From what I have been told I am currently in the ‘good’ category or things although that does not mean that this will always be the case.

My most recent scan in November revealed that I have 2 new areas of damage on the top of my brain, which showed up as paler grey smudges on the scan, although these have not shown themselves as physical symptoms yet. Despite me only having had one clinical episode I have been given a diagnosis due to the arrival of these new smudges.

This means that I am lucky and have been diagnosed at an early stage and it was recommended that I start treatment now for maximum benefit. Well, I say treatment – there isn’t a cure for MS – but rather drug that will armour plate my nervous system, toughen it up so that it is as hard as nails and prepare it for the next kung fu attack …

2. Down the rabbit hole …

For those of you who have never had an MRI scan it’s a rather curious experience. For a start there can’t be any metal inside which means no jewellery, bra, shoes, zips or even elastic hair bobbles which have a metal join. Rather than strip off into a hospital gown it was suggested to me that I wear leggings and a jumper so that I could just take off my bra and shoes and this seemed more comfortable somehow.

I had my first scan whilst my leg was still numb although the feeling had started to come back and it didn’t feel as awkward. Much to my relief I hadn’t had any episodes of incontinence and my lady bits were starting to feel normal.

The scanner itself was a huge ‘thing’ with a narrow rabbit tunnel in the middle, so narrow that I worried whether my bum would actually fit inside. It made really odd noises, clanging and banging and releasing air as if it was breathing. If I hadn’t known better I’d have thought it was broken. (I did make enquiries, just to double check, and apparently the ‘breathing’ is normal and simply the cooling mechanisms …)

I was required to lie down on a narrow stretcher which emerged from the depths of the tunnel. I was given a rubber ball attached to a wire that I could squeeze if I needed to come out quickly. I held this in my clammy hand, firm enough to keep hold of it just incase, but gently enough so as not to look like a total wimp by pressing it before it had even started. I was given headphones to wear -partly to block out the noise of the scanner, partly so the radiologist could talk to me and partly so that I could listen to the radio! My knees were propped up by a triangular shaped wedge and my head held still by padding around it. The worst bit by far was the plastic frame which was then clipped into place over my head and face to keep it still.

The radiologist then disappeared and emerged behind a glass window in the adjoining room.

The stretcher slowly moved until I was swallowed up by the depths of the contraption like Alice down the rabbit hole, before coming to an abrupt stop. It was then and only then I opened my eyes. The top of the tunnel was about 6 inches from my face and despite rolling my eyeballs in all directions all I could see was beige plastic. No inner workings, no radio waves, no flashing lights, not even a selection of doors and a rabbit wearing a pocket watch. I was secretly relieved that my bum had fitted in although it was the closest thing I can think of to being in a coffin. But perhaps without the peace and quiet.

I’ve had three of these scans now and whilst unpleasant they are actually not that bad once I learnt to relax despite the claustrophobia, terrible clanging noises and the dreadful local radio that is played through the headphones at full blast.

Each one I have had lasted for about 20 minutes inside the scanner although that has been made up of shorter periods of actual scanning.

The results of the scan are absolutely amazing. Like your body in shades of grey with the skin removed. Cross sections from each side and as if looking down from above.

Following my first scan I saw a consultant neurologist for the results. By this time the feeling in my leg was pretty much back although it felt, and still does, weird, numb and pins and needly when I got hot or cold particularly when exercising. It felt amazing in comparison to how it had been and so I wasn’t actually that bothered.

The consultant showed me the scan pictures on his computer screen and I was amazed at how clear they were and how detailed. As one friend later said to me in good humour, “Wow that’s amazing. They actually found your brain.”

He then pointed out two small patches on the top of my brain which were slightly lighter in colour, like it was smudged. And one lighter and clearer patch on the spinal cord towards the lower part of my back. He explained that this patch was the probable cause of the numbness in my leg. “Oh, and what causes that then?” I casually enquired, still amazed by my insides. “MS” came the reply, equally as casual ….