40. It’s a wrap …

Last month I was asked by the MS Trust to take part in their project called ‘Making Sense of MS’.

The aim of the project was to put together a catalogue of information for people who have been recently diagnosed with MS. I was asked to be interviewed as part of a series of short films for their website giving my experience of diagnosis amongst other things.

To be honest I was pretty chuffed to be asked. Chuffed that they thought I might actually have something useful or interesting to say. Although this did imply that I had myself ‘made sense’ of MS. In reality I don’t think I have. And I don’t think I ever will. But nevertheless I agreed to take part.

The filming took place at the Midland Hotel in Manchester. For those of you who don’t know, this is a pretty swanky hotel in the centre of Manchester. It houses the renowned ‘French’ restaurant currently occupied by Simon Rogan. It was famously the place where Rolls and Royce first met and the luxury car manufacturer born. And it is also where Posh and Becks used to hang out in their early days of dating.

Of course I submitted my rider in advance – red peanut M & M’s, a bottle of Nolet’s Dry Gin on ice and choice from the full autumn-winter Jimmy Choo collection.

In reality I got a sparkling mineral water and a warm welcome from the lovely MS Trust people. (Well they are a charity I suppose)

The filming took place in one of the hotel’s suites. It was set up with an armchair infront of a curtain as if it was in someone’s front room. Someone with a very plush front room.There were bright lights set up shining on the chair and a camera pointing the same way. I felt like I was on a talk show. Or mastermind. I sat bolt upright in the chair whilst a lady powdered my nose and another plumped the cushions around me (and who, I was told, was due to work with actual Jude Law and actual Colin Firth the very next day).

It was unfortunate that this was the week my hair dryer had chosen to explode and I had to use a borrowed one with the same drying power as an asthmatic puffa fish. And also the week that I had come down with conjunctivitis so my eyes looked like I had had a heavy and unruly night on the gin, been pepper-sprayed whilst committing a public order offence and then spent a sleepless night in a police cell.

But hey the show must go on as they say in showbiz ;)

I was asked a series questions by the filmmaker – a lovely man who had donated his services and who has a good knowledge of the subject as his wife also has MS – which I tried to answer as best I could.

The whole thing lasted about 10 minutes. It felt like 30 seconds. And then followed the best bit – he actually said the words ‘that’s a wrap’.

I could get used to this I thought. Well, if I had better hair and eyes. And anything else worth talking about.

There were nine of us, I think, in total who were interviewed and parts of what we said taken and included on the MS Trust website which you can find here:

http://www.mstrust.org.uk/interactive/mstrust/tag/making-sense-of-ms/

If you are someone who has recently been diagnosed then it’s well worth a look. If you want a giggle at me it is also worth a look.

I am of course available for further filming work upon request and would settle for just the m&m’s to be honest … Contact my agent.

That’s a wrap folks.

As you can see it’s a very serious business being interviewed!
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39. My MS week.

This year the 28th April to the 4th May was National MS week. A whole week dedicated to raising awareness about MS.

 

26th April – MS Life

For me it started on Saturday 26th April with MS life. Avid readers of this blog will no doubt recall I wrote about this back in 2012. For less avid readers or new visitors you should check it out (Post 21 The MS Convention).
MS Life can best be described as a big old get together for people with MS. That isn’t to say it’s exclusive nor that proof of diagnosis is required by big burly bouncers on the way in … ‘if you’ve not got at least one numb limb you’re not coming in …’ After all us MS-ers are a pretty friendly bunch.

But I can’t imagine why anyone without MS nor supporting someone who does have MS would want to go. That would be like me going to a Star Wars or classic car convention … I just wouldn’t be interested. So it would seem that out of the couples and small groups of people there it would be safe to assume that at least one of them has MS and that the others were there to lend support. But then again who knows, who am I to say what constitutes a good day out.

The main purpose of the event is to share information. For research scientists to explain their work and what they hope to acheive. For medical practitioners to offer help and guidance. For manufacturers to demonstrate their products. For fellow people with MS to share their experiences.
A whole big circle of information, like a file sharing website dedicated to MS.

Last time I went to MS life it made me sad. It was like giant slap round the head with a mobility scooter. A moment of realisation. A big fat dose of reality. Of the future as it could be. This time was a much more positive experience. Maybe it was because I knew what to expect. Maybe it was because mentally I am in a much better place than I was in 2012. Or maybe it was because I had the two people I love the most in the world by my side. Whatever it was I felt positive. I laughed with the guys demonstrating the motorbike like attachment that turned their normal wheelchairs into speed-demon-wheelz. I chatted with the lady from the MS Therapy Centre in Trafford Park of all places. And best of all I met a friend I had met through Twitter, through us both having MS.

Maybe it wasn’t so bad afterall.

 

28th April – New Magazine

As part of MS week ‘New’ magazine were doing a feature on women living with MS.

The MS Trust contacted me having read my blog and asked if I would be willing to take part. I have always been quite open about having MS – afterall I write this blog -so I didn’t really have any reservations about it. I was interviewed at length over the telephone. I was asked about my diagnosis, my symptoms and about my life during a friendly chat with the journalist who was writing the feature. They even arranged for a photographer to visit us at home and take some photos. Very celeb- like! It was a lovely sunny day when he came and we went to the park. I don’t like having my photograph taken and so posing next to a tree with lights poised in the undergrowth didn’t come naturally to me. Having said that I was really pleased with the results and Raffaele was undoubtedly the star of the photo-show.

It was just a shame they didn’t also send along a hair and makeup team. And a rail of designer sample garments for me it chose from. And a pair of killer Louboutins … But hey ho, there’s always next year.

 

2nd May MS Society Cake Break

For the past year or so the MS Society have been running a ‘Cake Break’ campaign. The idea is that people hold a cake sale / coffee morning to raise money to help fund the work done by the charity. This seems to be a really popular idea at the moment especially given the recent upsurgence in baking.
My friend Wendy and I decided that we would hold a Cake Break in our office. This was a particularly good idea as Wendy just so happens to be an amazing baker. My friend Neil had just completed the London Marathon for the second time for the MS Society and I thought it would be a good way to add to his fundraising without having to actually run anywhere…
We decided on 2nd May pretty much my chance. We were going to hold it sooner but dates had already been snapped up by other charitable endeavours at work and so we settled on 2nd May. We didn’t realise it was MS week at the time but in the end it worked out to be a great end to the week.

We got several volunteers to bake and numerous customers who selflessly rose to the challenge and polished off the lot for £1 a slice. The fact that we raised £250 goes to show just how much cake was consumed that day.

My running days might be over owing to my wobbly-MS leg but to be honest I was never any good at it anyway. I’m still a pretty good cake-maker. And an even better cake-eater. And anyway, if you can’t do it in heels then it probably wasn’t worth doing in the first place ;)

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38. Crochet

My MS hands are learning to crochet.

My MS hands do not like to crochet.

They do not like to grip the hook. They do not like to hold the yarn.

They show their displeasure by stiffening up. Cramping and seizing up. Like lobsters held hovering over a boiling pot as the reality and inevitability of their fate sinks in.

Messing up the tension. Making progress painfully slow.

They do not care much for typing either. Well not for prolonged periods. Or for lots of writing. Or needlework.

They detest the peg test at the MS clinic and refuse to cooperate properly whilst the seconds on the stopwatch skip by.

They tolerate the teeny touch screen buttons on an iPhone. Poppers on baby grows. Butterfly backs on earrings. Small buttons.

They like to hold hands.

They enjoy manicures and wearing blingy decorations. Clutching soft leather handbags. The warmth from a mug of tea. The cool from an iced g&t.

They are fond of cooking as long as it doesn’t involve too much chopping.

They love to stroke the silky soft hair on bambino’s head as he drifts off to sleep.

They are clumsy. Knock things over. Drop things (luckily not bambino).

They are kept well moisturised in an attempt to avoid premature ageing.

They have a distaste for jars and bottles of the screw-top kind.

But most of all my MS hands detest pressing the plunger on the bingo dabber.

Even crochet isn’t that bad.

37. Not brave enough.

I always knew the bingo dabber was pretty rubbish. You only have to look at it to know that. The design is clumsy and the mechanism even more so. It’s quite simply spring loaded. When the trigger is pressed the spring is released and pushes the needle followed by the plunger into the flesh. Well more specifically my flesh (I don’t have to share it, it is mine and mine alone). Always at the same speed (quick), always at the same force (forceful) and always making the same ‘boing’ sound. It makes no adjustment for the area of the body (my body) that is being injected. It does not distinguish between sensitive upper arms, easily bruised thighs and more fleshy tummies. For a while now I have felt that not only does the bingo dabber do nothing to minimise injection site reaction but that it does infact make it worse.

I last went to the MS clinic a couple of days before Christmas (festive I know) and we discussed the down sides of the bingo dabber. It was whilst I was there I was shown another type of bingo dabber. Only this wasn’t a bingo dabber at all. It was an all singing all dancing space aged injector thingy complete with inbuilt mini computer. Several injections are stored in it at once. The depth of the needle and the speed at which the contents are released into the flesh can both be adjusted for each injection keeping reactions to a minimum. Wow. This was the Jimmy Choo of auto injector pens. It made the bingo dabber look like a flip flop from the bargain bin at Deichman Shoes with a sweat-rash-inducing man made upper.

I had lusted after the Jimmy Choo auto injector pen for only seconds when the MS nurse broke the sad news to me – it was only compatible for use with another drug. Not the drug that I am on.

The worse bit was that drug is only injected weekly – yes weekly – compared to mine which is daily. So my bingo dabber gets used seven times more frequently yet is exactly seven times more crappy. It didn’t make sense.

I have thought for some time that it may be better for me to try injecting without the assistance / hinderance of the bingo dabber. You know, actually stick it myself and press the plunger. Be brave about it.

I was given a quick demo of how this could be done using the same pretend-flesh-gel-pack thingy that was used when I was taught to use the bingo dabber almost two years ago. I should have known it was a bad idea when on the first attempt the needle wouldn’t pierce the pretend-flesh-gel pack and bent sideways. And all the time the shiny Jimmy Choo space aged auto injector sat on the side flirting with me.

I chose to give it a go for the first time on Christmas Day. I don’t really know why I chose Christmas Day of all days but it seemed like a good idea at the time. Maybe it was the prosecco. Maybe it was the festive spirit. Maybe it was my Christmas pyjamas. Whatever it was I was feeling brave and so I went up to bed armed with my pre-filled Copaxone injection and a sense of purpose.

I took the syringe out of the wrapper and warmed it between my hands. Having considered all the options I decided my tummy was the best spot. It’s usually the ‘best’ area anyway as I have the least reaction there and it’s the least painful especially since the post-pregnancy wobble. I pinched some of the wobble between the fingers of my left hand as instructed and holding the syringe in my right put the needle to my skin.

It’s amazing how hard the skin is. How hard human flesh is, even on wobbly areas. I expected the needle just to go in but no matter how hard I pushed it wouldn’t. Ok so I didn’t push very hard. Infact I didn’t push at all. I just couldn’t. I wasn’t brave enough.

There’s something very strange about actually sticking a needle into your own flesh. It messes with your head. After all we are programmed to protect ourselves not hurt ourselves. When we fall we put out our hands to try and minimise the damage. If something flies towards us we instinctively put up our hands to protect our head and face. And this was no different. My brain was shouting ‘don’t hurt me’ ‘don’t do it’ and paralysed my hand from pushing any further.

After a couple of minutes of paralysis I admitted defeat, popped the syringe into the bingo dabber and proceeded as normal.

I haven’t been brave enough yet to try again. I’ve had a few well meaning offers from people offering to do it for me but the thought of that is even worse. I even know several people who have had to / do inject themselves without an auto inject device and to be quite honest I don’t know how they manage.

It seems to me that the only was forward is for the makers of Copaxone to pull their fingers out and make a better auto inject device. An even shinier and fancier version of the Jimmy Choo injector. And if they can’t quite manage that just now, I’d settle for an actual pair of Jimmy Choo’s to be going on with ….

36. Back to ‘normal’.

Tonight it is 20 weeks since bambino was born. 20 weeks! Wow how time is flying by. And wow how my life has changed.

I now spend all my cash on Ted Baker baby clothes instead of Ted Baker dresses. I chat about weaning instead of my day in court. I drink more tea in cafes and less gin cocktails in bars. My diary is filled with baby groups instead of conferences and social events.

And whilst my life has changed rapidly so has bambino. He now has the most infectious giggle. Only yesterday I taught him to ‘high 5′. When he’s tired he winds my hair between his fingers.

Oh how my life has changed for the better.

But sadly my MS has not followed suit. It’s lagging behind, a bit slow on the uptake, missed the memo that said ‘only change for the better here please’ …

I’ve been back on my Copaxone injections for almost 3 months now and I have to say they are worse than ever.

The pain of the actual injection is terrible. It stings like hell and the day after is incredibly sore. The location I chose makes little difference. Thighs are especially excruciating and to be avoided. The ‘best’ and so my ‘favourite’ site is my post-pregnancy-still-wobbly-tummy which absorbs the pain. I’m sure it never used to be this bad.

When I very first started taking Copaxone in early 2012 I remember it being painful but that largely stopped a matter of weeks later. I would often get large red, often hot, often raised, and often itchy marks at the site – which you may remember I affectionately termed ‘monster bites’. These too have made a comeback.

In an attempt to improve the situation I’ve switched to doing the injection in the evening. I used to do it in the morning before I left for work, mainly to get it out of the way and to stop me anticipating it all day, but I’ve found that it doesn’t really work to do it whilst bambino is around. I don’t like him to see me doing it. I don’t know why as right now he wouldn’t really know what I was doing, but as he gets older this will undoubtedly become more of an issue. Especially as I currently spend 10 minutes afterwards hopping around in agony. (And having given birth on only gas and air I like to think I’m not a softie!)

My symptoms have also made a return.

The funny pins and needles heavy feeling I used to get in my legs, particularly my right, now comes and goes again as it did before. The tiredness – oh so heavy limbs like wading through treacle tiredness – also comes and goes. Most recently I have had sharp and achy nerve pain in my arms which seems to be worse when I am particularly tired. Days of feeling like my limbs might actually drop off followed by days of feeling completely ‘normal’.

On a more positive note, having said all that, I don’t think I have had what could clinically be termed a ‘relapse’ nor have I had the post pregnancy ‘dip’ which many women with MS experience. In other words it could be a lot worse!

And so whilst everything around it is changing my MS is pretty much back to ‘normal’. Well I say ‘normal’ – as anyone with MS will tell you when it comes to MS ‘normal’ is a very changeable thing indeed.

35. Hello my old friend.

I decided to breastfeed my baby for a number of reasons:

i) The obvious benefits which we all know and so I will not repeat here

ii) I thought it would make me skinny

iii) Because it would help my MS

Yes, in most cases exclusive breastfeeding continues the improvement in MS symptoms seen by many women during pregnancy. I guess it stands to reason – if the primary focus of my body and most notably my immune system is making milk (or indeed a baby) and all that entails, the resources left for attacking my nervous system are pretty limited. In other words if Lucy Lui and the other cat-suited, glossy-haired angels were preoccupied with passing on important immunity to my baby then they wouldn’t have much time or energy left for raging a war on my nerves…

And so following the birth of my baby I set about doing what is said to be the most natural thing in the world. What followed is a very long story with which I will not bore you afterall this is an MS blog and not a ‘Trials and Tribulations of Breastfeeding’ blog. But put it this way; after four weeks had passed by he was the only one getting skinny which, when it comes to newborn babies, is a very bad thing indeed.

During this time I was introduced to a piece of NHS kit which I had never come across before … the ‘Lactina Electric Plus’ Breastpump. Yes, this was the ‘Plus’ model. I’m not sure what the additional features were but I’m pretty glad they didn’t give me the ‘Basic’ version …

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What you can’t see in this photograph are the two clear plastic tubes which plug in at the back and the two funnel-topped-bottles which attach to the tubes and sucker on to your boobs whilst the yellow piston on the machine moves back and forth making a ‘swoosh suck’ sound.

Glamorous just isn’t the word.

All that was missing was the rest of the herd and a big stinking pile of manure.

The Lactina Electric Plus Breastpump reminded me of something. It seemed familiar somehow despite the fact that I had never had reason to pump my boobs previously. And then it hit me …

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The utilitarian yet clumsy design. The use of gaudy yet hardwearing plastic. The hard yet straight lines. The indiscretion of the thing. Yes, it reminded me of the bingo dabber.

I guess I shouldn’t have been surprised, both items being NHS issue and all. They had clearly both been designed by the same person. A person who had taken their brief literally and suceeded in making something functional, fit for purpose, that did the job for which it was intended. But a person who had never had reason to use the items themselves. For if they had they’d have made them a little, well, prettier. More discrete. More user friendly. To make unpleasant yet necessary activities a little more bearable.

It was somewhat ironic that I had traded use of the dreaded bingo dabber for use of the Lactina Electric Plus, after all that was arguably worse … at least the bingo dabber worked instantly and didn’t necessitate prolonged periods of sitting with my boobs out. At least I only had to use it once a day. And at least it was easily set up and so could be hidden away in a cupboard when visitors arrived unexpectedly.

By this point I was by no means breastfeeding exclusively, leaving Lucy Lui and the other Angels with time on their hands. Time to get up to no good, afterall the devil makes work for idle hands and all that.

And so I have traded the Lactina Electric Plus Breastpump back for the bingo dabber and have started my daily Copaxone injections once again. Hopefully I’ll get some armour plating back on my nervous system before Lucy Lui and her pals wise up.

And maybe the bingo dabber wasn’t soooo bad after all.

34. A pre-existing condition.

Ok so I’ve been meaning to get round to this for ages. It’s amazing where the time goes these days. Feeding, nappies, washing … oh it’s incredible the amount of washing generated by someone so small … and the hours spent just, well, looking at him.

And here he is, Raffaele Ricardo Amatino Gosling, born at 2.20am on 22nd June 2013 weighing 7lb 12oz.

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The last six weeks have just flown by. And I’m pleased to say that my MS has been nowhere to be seen.

During my pregnancy, at one of my extra appointments due to my MS, I saw a Doctor that I had not seen before. She said that they would ‘prefer’ for me to have my baby in the Consultant-lead Labour Ward rather than the Midwife-lead Birth Centre. When I questioned why this was she said it was because I had a ‘pre-existing medical condition’. Well yes of course I did – I was pregnant and by this point I had been for sometime. She said it was becasue I have MS. I asked her what difference this would make as I had already been told that MS would not effect my labour. The only thing I couldn’t have at the Birth Centre was an epidural and having discussed matters with the anaesthetist (post 32. My baby, MS and Me) I had ruled needles in my spine and numb legs quite firmly out thank you very much. She looked at me like I was trouble and said ‘well we will see’.

Luckily for me the Midwives did not share the same view as that Doctor and ultimately I was given the ok to have my baby in the Birth Centre despite my ‘pre-existing condition’.

Without sharing the gory details … after an 11 hour labour, only 4 of which were spent at the Birth Centre, my baby was born in the birthing pool. Not an epidural in sight. A few hours later and we were all home.

The yoga, relaxation and exercise I had done during my pregnancy really helped. My pre-existing medical condition did not hinder things at all. Having heard endless tales of horrendous labours and births I count myself very lucky to have had such a positive and special experience. Not many women can say that, pre-existing medical condition or not.

If I had taken what the Doctor said at face value, if I hadn’t questioned her reasoning, then my experience would have been quite different and perhaps not so good.

If anything, having MS has made me more determined not to let it effect the things I want to do. No matter how bad the pain could ever have been there was no way I was going to admit defeat and be transferred up to the labour ward for an epidural.

Well I call it determination … Others may call it stubborn … But when it comes to pushing 7lbs 12oz out of your lady bits maybe they’re one and the same thing.