30. Kate Middleton stole my thunder

‘The Amatino-Gosling residence are pleased to announce that they are expecting a baby!!”

Just as it got to an appropriate time to tell people, the bloomin’ Dutchess of Cambridge got in there first, stealing my thunder entirely. The attention of the world’s press was drawn to the King Edward VII hospital and away from North Manchester General …

It’s funny because I was never really interested in babies until I hit 30 in October 2011. Up until then I had been focused on my career, striving for the next step up, the next case, the next rung on the pay-scale. And then it hit me. Like a brick over the head. Problem was, babies weren’t the only thing that hit me when I hit 30. Being 30 hit me. And so did MS.

It was during 2011 that I began to deviate from ‘me’, from who I am, only I didn’t see it at the time. I became anxious, lost confidence and pushed away those closest to me. In hindsight I made some pretty poor decisions which at the time seemed like a good idea. I felt like I couldn’t cope. Even getting up in the morning and getting myself to court was overwhelming. I didn’t want to speak to people, was snappy, and spent increasing amounts of time on my own. But even then I couldn’t sleep or concentrate on anything.

Things came to a head in the November whilst Christmas shopping in Boots on Market Street. The 3 for 2 gifts in the Christmas section were so overwhelming, the shop so busy, the music so loud … I became hot like my head was going to explode and my chest was tight. I just couldn’t do it. And so I abandoned my shopping and walked out of the shop, straight up Market Street and back to the sanctuary of my flat without stopping.

It was then I realised that something had gone wrong (after all I love shopping!) – the confident, lively, friendly, professional woman I strive to be had become introverted, anxious and lonely. And so I went to see my doctor.

When you are given life changing news, whether it be the death of a relative, the loss of a relationship or in my case an illness, no matter how well you think you are and how well you appear to be ‘dealing’ with it, it has an effect on you somewhere deep inside. And it is only a matter of time before you can’t ‘deal’ with it any longer and it’s ugly head emerges through the surface and no matter how hard you try you can’t smother it or push it back down to where it came from.

As a society it seems to me that we are very reluctant to admit that there is a problem; we see needing a helping hand as a sign of weakness; we view help such as counselling or medication as pointless or a cop-out.

Well let me tell you, there’s something amazingly liberating about sitting down with a total stranger and telling them your worries, fears and what it is that keeps you awake at night. Things that you are too afraid to admit to your nearest and dearest for fear of upsetting them or allowing your ‘brave face’ to slip. And there is nothing wrong at all in accepting help in the form of medication for a few months, to help get you back on an even-keel and make Boots Christmas section more manageable (after all most forms of depression are caused by a chemical imbalance in the brain).

Infact you’d be surprised at the amount of people you know, family members or friends dear to you, who have had similar problems and similar help. If you were brave enough to discuss it with them of course.

And so by late Spring 2012 I was pretty much back to my old self. So much so that I was able to put right some of the rather questionable choices that I had made. I’m just incredibly grateful that the people who had bourn the brunt of the situation were still there for me when I did. (Thank you Tom for always being there – I love you.)

Oh how much can change in just a year!

And so now I am ready to embark upon a new chapter in my life MS and all – the most exciting, challenging and rewarding chapter to date – that of being a mum.

The day we found out was a pretty strange day all round.

I had an interview for an internal job – a promotion – which was quite frankly a steep step up, the other two interviewees having ten years experience on me – but nevertheless I had got through the application stage. The interview was at the Preston office and my letter said that my interview time was 11am. But as usual, things didn’t quite go according to plan. I arrived in good time and went inside … only to be told that my letter was wrong and that they weren’t expecting me until 2pm. I then spent the next 4 hours effectively killing time and, well, thinking. Thinking so much that I made a diversion to Boots on the way home.

At the same time Tom was in court in Sheffield. Sheffield where his sister lives and had, that day, had our beautiful nephew Oscar. And so after court Tom went to the hospital to visit them.

Later that night he returned home gushing with the news and excitement of having met his nephew at only a few hours old … ‘Nic, I really want a baby…’ he said … ‘Well funny you should mention it’ I said ….

I didn’t get the job, afterall my mind was on other things at the time, but for the first time in my life I didn’t mind.

If the last 18 months have taught me anything it’s that you have to go through bad times in order to really appreciate the good times.

‘And we’re all owed joy sooner or later, the trick’s to remember when it was or to see it coming …’

Carol Ann Duffy


29. Back by popular demand.

In the past few weeks I have been asked several times whether I am still writing my blog. Well the answer is, of course I am! In the general sense of the word of course, as I haven’t actually written anything for over a month now…

The problem has been, you see, that not much has been happening on the MS front. My MS hasn’t been up to much and so consequently I haven’t had much to write about. That isn’t to say that I haven’t been up to much – in fact quite the contrary. I could tell you about my recent trip to New York, my weekend to Belfast with the girls, the arrival of my new nephew, the crazy few months that I’ve had at work – but none of those things have anything to do with MS and as this is an MS blog I guess I ought to stick to the point.

Having MS is now just one of those things and not something to which I give much thought. Well not on a regular basis anyway. As I’ve said before, if it were not for the daily Copaxone injections, then I could quite easily forget about it altogether. In this regard I count myself very lucky. There are people who think that having something ‘wrong’ with you must mean that there are things you ‘cannot do’ – but this is could not be further from the truth. In fact it makes me do more than I did before. To make the most of things. Because life is precious and ought to be lived to the full.

Anyway back to the point … something MS related did happen this week. And so it only seems right that I write about it.

On Friday I went to see my consultant at the MS clinic for the results of my recent MRI scan. Fortunately I was off work and so didn’t have the usual mad-rush-to-hospital-rush-back-to-court situation that usually accompanies my appointments nor the series of work phonecalls and texts whilst I was there. Unfortunately the hospital obviously didn’t know that I was off work and did not have the usual mad-rush-to-hospital-rush-back-to-court situation that usually accompanies my appointments and had given my an appointment time first thing in the morning thus preventing any sort of off-work lie in.

I sometimes feel like a  bit of a phoney at the MS clinic and Friday was a particular example. Looking around the waiting room makes me question whether I have the same condition as the other patients. I don’t have any difficulties in getting around, any outward signs that something is wrong. It makes me feel like a bit of a fraud, like my appointment time could be better used by someone else who actually needs it.

I did the walking test as is the norm at these appointments. The fact I got the quickest time in the clinic that day (under 12 seconds) only added to my feelings that I was wasting everyone’s time. I managed to subdue my victory lap and ‘Mobot’ on the grounds that it was wholly inappropriate in the circumstances.

The results of the scan were also positive. The existing lesions on my brain (shown on the previous scan as white spots) have improved, healed, and so become less visible. It is likely, although not certain, that this improvement is due to the Copaxone injections. On the down side there was one new white spot which hadn’t been there before. As my consultant explained, the Copaxone does not provide 100% protection against the formation of new lesions, although my take on it was that this was pretty good all round. Especially in light of the fact that this lesion hasn’t resulted in any new symptoms.

It seems that Lucy Lui and the other angels have managed to keep a lid on things. Think that anger management course I sent them on must have been beneficial ….

The consultant described my MS as being ‘inactive’. Whilst that is something I am definitely not, it certainly seems to be the best situation for my MS.

At this rate Lucy Lui and the girls will be taking up Buddhism…

… and I might have to diversify this MS blog …

28. Cement mixers, spanners and lady piercings.

It’s almost 12 months since I had my last MRI scan. 12 months since I was shown the cross section of my brain with the lighter grey patches. And 12 months since I was told I had MS.

On the one hand that feels like a very long time ago. A lot has happened since then and MS has become part of my everyday life, objectified by my daily use of the bingo dabber for the last 6 months.

On the other hand, the last 12 months have flown by and, fortunately, nothing has really changed MS-wise. The pins and needles are the same as they were a year ago and there certainly hasn’t been any deterioration in how I am or how I feel.

But whilst there haven’t been any outward changes I am very curious to know whether the same can be said for inside my head. My consultant agreed when I last saw him. He said that a further MRI scan now would serve as a useful comparison with the scan from last autumn. Plus, apparently the injections reach maximum effectiveness after 6 months and so it would be useful to see what they were upto.

And so last Tuesday I had another MRI scan.

The first thing of interest was that my appointment was a 7 o’clock in the evening. I, of course, thought this was marvellous as it meant that I did not have to take any time off work. My friend, of course, said that I was the only person in the world who would be glad not to have to take time off work and so I was therefore mad. Whichever was you look at it, for all the criticism of the NHS, it just shows how hard they are infact working and made me re-address my feeling that as soon as you have something wrong with you the expectation is that you cannot hold down a responsible job….

That said I seemed to be the only person in the radiology unit at Hope Hospital last Tuesday evening. Apart from the receptionist who chatted on the telephone for the whole time I was there save only for stopping to draw breath and ask me for my name. And apart from the lady who came out into the waiting room and asked me whether I was there for a scan. I tried to think of some witty ironic reply given I was the only patient sat in the MRI scan waiting room at 7pm on a Tuesday evening and as lovely as that was, it wasn’t my idea of a good night out … but my lesioned brain failed me and the only response I could come up with at short notice was a rather predictable …. ‘yes’.

The scan itself was pretty much the same as the others I have had. They don’t bother me as much as they used to but I still don’t understand why they have to be so loud. It’s like being in a cement mixer with a load of spanners and a really stinking gin-fuelled hangover.

A while ago I met a lady who told me about the time she’d had an MRI scan. She had removed all metal as is compulsory because of the magnetic thingys … her jewellery, her bra and so on and had the scan. It was only when the radiographer emerged very concerned as to why the scans were black that she remembered the piercings in her, erm, lady area. There then followed a hunt in the hospital for a pair of pliers in order that she could remove them and have a successful scan….

Luckily my scan passed without any such embarrassment. Although exactly what is going on up there remains an unanswered question until ‘results day’ next month…

27. Daily punctuation.

There are some conditions that make themselves known on a day to day basis. Their symptoms are never far away, their effects always hanging around in the background, like a lingering smell that no amount of fabreze can shift.

Well MS isn’t really like that, or at least it isn’t really like that in my case. I work full time as normal. I exercise, socialise and do all the things I did before with very little adjustment. Ok, as I’ve already explained, I have to be careful to manage my tiredness and can’t quite burn the candle from both ends and the middle anymore. I get pins and needles and numbness, mainly in my hands and feet, but again this is hardly something to be complained about in the grand scheme of things and certainly doesn’t stop me doing my thing in court, the gym or the nearest gin palace…

So, in fact, I could quite easily forget I had it. Quite easily forget the shenanigans going on in my head after all, it’s been pretty quiet recently in the kung-fu-kick-ass world in which my Charlie’s Angels immune system operates. It seems Lucy Lui and her pals have hung up their cat suits and taken a break from attacking my nervous system in favour of a nice cup of Earl Grey and a twin set and pearls (less chaffing than the Lycra and a little more forgiving I find …)

But of course whilst things are all quiet on the MS front, everyday is still punctuated with a reminder that this may not continue to be the case. Everyday when I stick a needle into my wobbly bits and do my Copaxone injection. Because that’s not what ‘normal’ people do is it? It’s a sign that there is something wrong. People don’t inject themselves for any other reason. Even those who inject themselves to get high do so not because they are happy and just want to be insanely happier but because of a need to mask and distort something that is very wrong or upsetting and, from what I have seen, ends in very little else than misery, pain, and numerous court appearances.

I write this from the (dis)comfort of a Ryanair flight, travelling home from a week in the sun…. A week where the worries of work, life and even the autumnal weather were left firmly behind in Manchester, albeit only for 7 days until I return and collect them all again.
But my MS worries were not left behind in Manchester, under the stairs along with all the other gubbins. No, because my MS worries have to travel with me. That daily punctuation I described happens wherever I am. It is an adventurous globetrotter, fearless and relentless in my pursuit. It is of course … The bingo dabber.

As I explained earlier this year the bingo dabber does not travel alone. She likes to bring some friends along for the ride, like bingo dabber groupies. This time there were 7 of them. 7 pre-filled Copaxone ‘shots’ as my twitter friends in the States like to call them. And if that were not bad enough the groupies are of a rather delicate disposition and so are very particular about how they travel, demanding a cool bag and ice packs and necessitate a VIP pass onto the plane signed by my MS nurse (although for the second time now no one at Manchester International Airport batted so much as an eyelid as I passed through security with an arsenal of sharps and were more concerned as to whether my lipgloss was in a sandwich bag for which they charged me £1).

So whilst most people go on holiday to escape their biggest worry and get a bit of rest bite, I have to take mine with me.

To be perfectly honest I’ve seriously considered giving up the jabs. Unlike the consideration I gave to giving up gin and shopping in Ted Baker, the jabs are one thing I think I could give up and actually stick to.

When I was diagnosed in December 2011 I was given two options by my Consultant … To start the medication now in the hope of obtaining maximum benefit and protection (because that’s what the drugs are – prevention rather than cure) or waiting and doing nothing and basically seeing what happens.

I remember, at the time, he told me that some people find that the injections serve as a daily reminder of something that they didn’t want to be reminded of and so they took the decision not to bother. I remember, at the time, thinking ‘Why, they must be crazy! How could I possibly forget that I have an incurable neurological condition?! I don’t need to stick a needle in my thigh everyday to remember, like a note on a cork memo board where the board bit is my leg and the cork bit is my flesh! These people must be mad!’ I thought, at the time. And so opted for the injections almost without question.

But now, almost a year on, I completely understand what he meant.

The problem now it that I am on the roundabout and don’t think I can jump off….

I could, perhaps, forget I have MS altogether and be a whole lot cheerier because basically there is very little wrong with me. (And in fact, as I have also already mentioned this could be as bad as things get for me. Or they could get a whole lot worse such is the unpredictability of it all) Only I cannot forget because every morning I have to inject myself. But I inject myself because it seemingly ‘protects’ me from having anything wrong with me. The problem is I don’t know whether it’s the injections that are keeping me well or whether I would be well anyway…. Which is where the roundabout comes in.

Going round and round is making me pretty dizzy. But I’m not brave, or perhaps stupid, enough to jump off.

26. Tired of fatigue.

The words ‘I’m really tired’ are often met with the response ‘Me too, I couldn’t sleep last night’ or ‘Me too, I had a really busy weekend.’

Saying how tired I am sounds really pathetic, like I just need an early night and to pull myself together. But the tiredness I have experienced with MS is like no tiredness I have ever experienced, ever before.

You know when you have flu and your arms and legs ache and feel so heavy that it’s like you’re dragging around lead weights with you … well MS tiredness is a lot like that. Like trudging through mud or walking through the water in a swimming pool. Everything requires so much more effort than it ought to.

It isn’t a sleepy head tiredness but a physical one that seeps up my limbs like water into a sponge.

The problem is, I don’t really have time to be tired. My job isn’t the sort of job that makes allowances when you’re not on top form – it carries on regardless, like a tank over rough ground, crushing everything in it’s path. And if you can’t keep one step ahead of the tank then you get squished.

Plus, there’s a lot more to me than my job. I’m always out and about doing something. I’m a bit of a party girl to be honest, after all it would be such a shame to let all those shoes go to waste … I’m lucky and have lots of lovely friends that I spend time with. I like to frequent many of Manchester’s finest restaurants and bars 😉 – in fact one of my friends refers to me as a ‘Manchester tour guide’. I enjoy fundraising and working with the Birdhouse Fund – a Manchester women’s charity. I go to the gym. I’ve just started circuit training. I go running. I like doing courses and learning new (non law!) things. Occasionally I even try to fit in a bit of time with Tom!

I can easily fill every evening and weekend …. but then again I love it that way. I can’t sit still.

And so I seem to have a constant battle with myself when it is suggested that I ‘rest’ or ‘take it easy’. That seems like a sign of weakness to me … an admission of defeat. I like to make the most of things and the uncertain, unpredictable nature of MS has made me try to do this even more. And if I am one thing, it’s stubbon. I don’t give up easily. And I certainly won’t be giving in to MS easily.

Problem is, I am tired of being tired.

That said, I’m not adverse to a little ‘tweak’ here and there. After all the odd early night and pampering session never hurt anyone.

And this is where the acupuncture comes in … I don’t know how, I don’t know why. But I am sure it’s working. Working at giving me more energy and making me feel less tired. I have now had four sessions over four weeks and I feel better than I have done in quite some time which can only be a good thing.

And we know what more energy means … fitting more in 🙂

25. One day, 8 needles.

I’ve always been up for giving news things a go. Whether it be walking a marathon by moonlight for Cancer Research, learning to ride a Vespa or my somewhat brief snowboarding career which came to an abrupt end after an unfortunate incident with a ski lift …. nevertheless the motto ‘Don’t knock it ’til you’ve tried it’ holds a lot of weight with me.

And so I have applied the same logic to my MS. Don’t get me wrong, if someone told me that eating kangaroo testicles in an ‘I’m a Celebrity Get Me Out of Here’ style would help, then I’m not saying I wouldn’t have my reservations … but if there is a chance of something helping then I am willing to give it a go … within reason of course 😉

And so it is that last week I went for my first acupuncture experience.

I may inject myself everyday now, but that doesn’t mean that I relished the prospect of having pins stuck into my body. The bit I didn’t like was the thought of having to lie there with them stuck in. What if the fire alarm went off and we had to evacuate the premises? What if a spider dropped down from the ceiling towards my face causing me to leap up from the bed? What would happen then eh?

These were the thoughts that crossed my mind as I drove to the appointment after work last Wednesday. That and how much it would hurt.

The acupuncture lady had come recommended by a friend so I had a rough idea what to expect. She was lovely and took a comprehensive history from me about what had happened to me, my symptoms and my diagnosis before she did anything else.

She took my pulse in both wrists and looked at my tongue which I thought was quite interesting if not a bit strange – what was she looking for? What did my tongue tell her about what was going on in my brain? I tried to relax as I lay on the bed. It was pretty difficult whilst dreading what I knew was about to happen. I questioned myself about why I was doing this voluntarily and not only that, why I was actually paying for it ….

The actual sticking-in of the needles was nowhere near as bad as I thought it was going to be. The acupuncture lady told me to take a deep breath then to breath out as she stuck the first one into my tummy. She explained that breathing out relaxes the muscles and so keeps any discomfort to a minimum. I have to say that there is definitely some truth to this. Only on Monday of this week I employed the same technique whilst having my lady-bits waxed and have to say it really took the sting out of things …

There were seven needles in total, in addition to the one I had already stuck in myself that morning. Three in my tummy and two in each leg. All in at the same time. As I lay there I had the same thoughts as I had on the journey … what if  there was a sudden earthquake? What would I do then? I couldn’t look down at myself, at the pins sticking out of me. Instead I looked up at the blue sky through the skylight above and tried to stop picturing myself as a voodoo doll with millions of needles sticking out …

After a while the acupuncture lady removed the pins one by one. I felt relieved in a funny kind of way; not that it had hurt but relieved that I could now move without fear of dislodging them.

That night I slept like I hadn’t slept in ages, although when I woke up the following day I felt shattered, even more so than usual, and achey all over.

Apparently it will take a few sessions for me to feel the benefits.

It’s weird really because I don’t actually know what the benefits will be. I just hope that I will feel, well, better somehow. And then who knows what will be next on the list … I’ve always fancied skydiving actually …

24. A lovely pair of jugs.

Today I received a letter about my forthcoming appointment at the ‘Continence Clinic’. (This was following my ‘frequency and urgency’ problem described in post 20)

As if this were not bad enough in itself, the letter contained something which I am supposed to complete in advance of the appointment. It is entitled ‘Continence Chart’.

The instructions read as follows:

‘You need to get a jug which measures in millilitres.

You should use the jug to measure your urine each time you go to the toilet from when you get up in the morning until the next morning.

Put the time in the 1st column and the amount in the 4th column.

Everytime you have a drink, you should put the amount in the 2nd column and what kind of drink it was.

Everytime you become wet/damp you should write this in the 3rd column. You should also write down if you need to change your pad or clothes because of wetness.

Please complete the chart for 3 days and 3 nights.’

Upon reading these instructions I was faced with more questions than I was answers;

‘You need to get a jug’ a jug?! Surely they don’t expect you to measure what goes in and what comes out with the same jug?! Surely that should read ‘You need to get two jugs’ – clearly marked Jug 1 for liquids in and Jug 2 for liquids out – and even then they would need to be purchased, after all it hardly seems appropriate to pee in my kitchen jug then measure out the milk for the yorkshires, even if it had been through the dishwasher in the intervening period. And what if I were caught short and needed the jug when it was otherwise engaged on legitimate kitchen-business?!

‘You should use the jug to measure your urine each time you go to the toilet’ -so every time I need to pee, I have to pee into the jug. Whilst this could be quite handy on long car journeys, it does not seem to be particularly practical in everyday life. For one thing it means that the jug would have to be available each and every time I need to pee. Which means carrying it with me at all times whether that be to the office, to court, to the supermarket, a restaurant a friend’s house … and call me fussy but I don’t fancy that much. And even my huge Mary-Poppins-style-work-bag does not have sufficient capacity to accommodate a jug.

Plus, not only would I need to pee into the jug, note down the amount of pee within in the jug and pour the pee into the toilet, I would then have to wash the jug out in the hand basin! Again far from ideal when one is in public convenience. ‘Look at that nutter with the jug’ people would think whilst slowly edging back towards the hand driers.

‘Everytime you have a drink you should put the amount in the 2nd column and what kind of drink it was’ – This presents it’s own difficulties it seems to me. There would, of course, be no difficulty in recording a pre-packaged drink because the volume is always printed on the packaging – 330ml for a can of diet coke for example (as long as I drank it all). I could even measure the capacity of my favourite mug at home and record that everytime I had a cup of tea. No, the problem would come when having a non-pre-packaged-drink when not at home. Can you imagine ‘Excuse me Mr Barman, exactly how many mil is that Porn-Star-Martini?’ or when at a friend’s ‘I’d love a coffee thanks, but could you measure the capacity of your mugs first please?’. Can’t imagine I’d have many bars or friends left to visit. Unless of course I took my own jug with me (jug number 1 used exclusively for ‘liquids in’ you understand) and emptied the contents of every drink I was about to consume into it first …. no, I can’t imagine that would go down very well either.

‘Please complete the chart for 3 days and 3 nights’ – 3 whole days and 3 whole nights. So it wouldn’t even be possible to complete the task over a weekend having cleared my diary of all social engagements to spend the weekend in the privacy of my own home with my pair of jugs.

As with a lot of things to do with MS it seems to me that the ‘Continence Chart’ isn’t designed for people who have a job. Or infact any sort of social life. The walking test I can cope with, the peg test I can manage, but the peeing-into-a-jug test is step to far. And I’m simply not doing it. I am rebelling. Staging a protest. (Even though I am a little bit scared that I will get in trouble when I go for my appointment ….)

Anyway I have to leave this there ….. I really need to pee ……