41. 50 shades of MS.

It was the night of Valentines Day. The house was quiet. Suddenly the silence was broken by a loud groaning sound that could be heard oozing through the floorboards upstairs. The noise gradually got louder until a strained voice shrieked ‘Don’t stop!’ and the groans climaxed into an ear-pinching yelp. The cats sought refuge under the sofa. 

Whilst this could be mistaken for a home re-enactment of scene from a recently released film … it was not. 

For the last 12 months or near enough I have been having real problems with muscle tightness and stiffness (no rude jokes please). It mainly affects the backs of my legs. It’s like the muscles are in a knot, all scrunched up, and are incredible painful. They feel tight to the touch. 

Apparently this is yet another symptom of the varied and downright odd condition that is MS. 

Let me explain. 

In order to move your arm, the muscles at the front of your arm shorten or contract (increasing the tone) whilst the muscles at the back of your arm lengthen or relax (decreasing the tone) (tone being the resistance to movement or level of tension in a muscle).

Sometimes the brain signals are interrupted midflow and the muscle is left in the shortened or contracted position hence the tightness and discomfort. From what I have read this can also happen if there is damage in the spinal cord … the message to relax the muscle either doesn’t get through or gets mixed up and so the muscle remains tight. A bit like Chinese whispers I guess. 

It’s incredible how many bodily functions are controlled by the nervous system. So when your nervous system is a bit doolally some crazy stuff is bound to happen.

And so on Valentines Day evening my very understanding husband was attempting to relieve my leg muscle tension using a very painful sport massage foam roller thingy whilst I almost cried with the pain. Who said romance was dead?! 

The week after this I got my first physio appointment. 

The physio asked me to rate the pain on a scale of 1-10. ‘About a 4’ I replied. ‘I have had a baby’

‘You must have had a really bad labour’ she replied.

Given that had been about a 7 I took this as a compliment and clinical confirmation that I am hard as nails. As I did the fact she was impressed at how far my legs can bend back towards my head.

And so she gave me a series of stretching exercises to try to help the muscle tightness business.

And it was whilst I was there I discovered I cannot walk in a straight line.

I have always known this though you understand. I have been told on many occasions by people I am walking with as I make them verge out infront of an oncoming tram or into a privet, that I am not walking in a straight line.

As I tried to walk along a painted line on the ground, one foot infront of the other, the problem was obvious. I am just too wobbly and don’t have the requisite balance. In particular my right leg, the one that has always been particularly mischievous, refuses point blank to step on the line.

I’d be screwed if ever required to walk a tightrope. 

I left, my circus / acrobatic ambitions shattered, with my muscle stretching exercise sheets in hand…

… but with the excuse that next time I am snaking along the pavement it is not down to my heels or one to many g and t’s … But this crazy thing they call MS.

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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.

33. In my condition ….

The other day Tom and I came out of Marks and Spencer Food to find a post-it note stuck to the window of his car (luckily it was his car and not my brand new shiny one or what followed could have been a whole lot worse). Written upon the post-it note was a phone number and a name which, for these purposes, I shall refer to as ‘Mrs J’.

Just as we thought Tom had picked up a secret admirer from M&S, the Parking Attendant man scurried over and explained that the details on the post-it note were those of a lady who had just crashed into the side of our car.
I asked where she was and he said that she had left.
I asked why she had left given that (a) it was her fault, (b) we had only been away for 10 minutes and (c) it was obvious that we were in M&S and so it would have been at least courteous to come into M&S to find us. He said that she was very old and upset and so he didn’t think she should wait especially given that he was there and was a witness.
I asked if he had seen what had happened. He said that he had not. I therefore explained to him that he was not a witness. He insisted that he was ….

Thereafter followed a further 10 minute cross examination during which I became more cross and Tom, ever the pacifist, became more embarrassed. Ultimately victory was mine however as the Parking Attendant man crumbled under the pressure and admitted that Mrs J had not left at all – she was parked in the space next to us and had been sent into M&S by him to have a coffee to calm her nerves. This raised serious concerns over the driving competence of Mrs J given that in manoeuvring her rollerscate-sized Kia Piccanto into the space next to us she had managed to take off half her bumper.

By this point I’d had enough of the half truths of the Parking Attendant mafia and so insisted that we speak to Mrs J herself – either he go and fetch her or we go in M&S and find her.
And then it came. The following words actually came of of the Parking Attendant’s mouth …

‘In your condition why don’t you just go home and let your husband sort this out’.

As the words came out all the blood rushed to my head and steam began to come out of my ears. I could see Tom’s eyes widen in horror and fear of what was about to happen. Anyone who knows me will know that this was not just red rag to a bull – it was red rag with neon red flashing lights and a background chorus of ‘ne’er ner ne ner ne’er’.

I was outraged on two levels:

Firstly the suggestion that I was somehow incapable because I am a woman.

And secondly the suggestion that I was somehow incapable because I was visibly pregnant.

The misogynist’s double whammy jackpot score – a pregnant woman!

Although in reality the Parking Attendant man should have considered himself lucky that I was obviously pregnant – otherwise I may well have knocked his block off.

In any event he must have realised that I was not the kind of woman who would ‘just go home and let my husband sort this out’ and scurried off to retrieve Mrs J from the M&S cafe (who, incidentally, was neither very old nor upset and clearly another victim of the Parking Attendant’s sexism – although her atrocious parking was inexcusable).

Later someone on twitter asked me whether in referring to ‘my condition’ the Parking Attendant man had been referring to my MS. Clearly in this case he hadn’t – the man made the comment because it was obvious that I was pregnant. Oh and a woman. It isn’t obvious that I have MS. Even when my MS was at it’s worse and my leg was numb no one could really tell that there was something wrong with me simply by looking.

Having something that makes you obviously ‘different’ must be very difficult. Whether it be the use of a stick or the use of a wheelchair it seems that this is often viewed as a sign of ‘vulnerability’ by others and therefore incapability. How patronising! This made me feel quite lucky that my MS is something I am able to keep quite private – it isn’t apparent from my appearance – and it’s not like I’ve written all about it on the Internet or anything … And yet at the same time I feel guilty for feeling lucky in this way.

Having said all that it was only a few weeks before that I had complained about the complete disregard shown to the fact I was pregnant on the packed-rush-hour-free-bus when I was forced to stand up for my journey across town whilst juggling my work bag, handbag and bump. I wonder if the Parking Attendant man would have stood up and given me his seat owing to ‘my condition’?

No, I don’t think he would either.

Guess we can’t have it both ways eh?! And maybe we’re all not so different from the Parking Attendant man after all.

32. My baby, MS and Me

There’s a section in the middle of my pregnancy notes entitled ‘Medical History’. They ask a whole manner of odd questions when you’re pregnant. The one that disturbed me most was ‘whether the father was a blood relative’. I wondered how many people actually answer ‘yes’ to that question?! To be honest, even if he was, I’m not sure I’d be telling anyone about it. But hey, who am I to judge.

The most interesting thing that I had to write in this section was about my MS. It seemed a bit tame in comparison. A bit mainstream. What type it is, how long I’ve had it, what medication I was taking …. and that’s the only place in the notes that it appears. Which is quite nice really. To be honest I don’t really know what I was expecting … the letters M and S stamped across the front (this isn’t just any MS … it’s Nicoletta’s MS) … a different coloured folder … some sort of symbol to make my notes stand out … but no, for once it isn’t just all about my MS. Instead it’s all about my baby. Which is as it should be I guess.

Infact MS isn’t playing much of a part in my pregnancy at all. My everyday symptoms (pins and needles mainly) have all but gone and have been replaced with chronic acid indigestion and incredibly painful boobs. When, at my appointments, I am asked how I am the inquiry is aimed at my growing bump and not at the funny grey patches on my MRI scan. The chatter at my yoga class is of pregnancy ailments and midwives and preparations … no one there even knows that I have MS.

Of course that isn’t to say that my MS has been completely forgotten (although with the improvement in symptoms and the sabatical from the bingo dabber it could easily have been).

It seems the most important issue that has arisen is the question of whether it is safe to have an epidural during labour. There is some research to suggest that having an epidural can worsen or speed up the progression of MS and, moreover, I have read that this can be more acute where MS symptoms manifest themselves in the legs. This was of particular interest to me as my MS began with numbness in my right leg and still lingers with pins and needles.

Every pregnant woman has a named Obstetrician on their notes although from what I can gather, all being well, many do not actually ever meet them. Because of my MS I have been to see my Obstetrician. We chatted about my MS and she too came to the conclusion that it did not present any cause for concern either during pregnancy or labour. She did, however, highlight the epidural issue and so referred me on to see an Anaesthetist.

I don’t know whether this is common to all patients, or whether the nature of my occupation sets off alarm bells and the flashing neon warning lights of potential litigation should something go wrong, but I often find it hard to get a straight answer on issues of a medical nature. I know that once armed with the facts and the statistics the choice is ultimately mine, but I’d appreciate the opinion of the medical practitioner concerned, their views, their guidance. Afterall they are the expert. And that’s why I have gone to see them. In the legal world in we call it ‘advice’. And as with all types of ‘advice’ whilst it’s up to the recipient whether or not they choose to accept the aforementioned advice it’s often a useful tool in their decision making process, especially where the advice-giver has some expertise in the area upon which they are advising …. Anyway ….

My appointment with the Anaesthetist was a little disappointing to be honest for similar reasons to those outlined above and I wasn’t much wiser when I came out than when I went in.

I have decided however, of my own volition I might add, to avoid an epidural if at all possible. Having spent the best part of 2 months unable to feel my right leg from the sole of my right foot right up to my lady bits and having seen the images from the MRI scan showing the lighter grey patch on my spinal cord which caused this, it seems that having a needle inserted into my spinal cord with the sole purpose of numbing my lower body is a very bad idea indeed. The potential drawbacks, the potential effects longterm, whilst all potential and unproven, would be so far reaching and so bad that they seem to me to be far worse than the short term pain during labour.

I guess it boils down to this: I feel I owe it most importantly to my baby and also to my husband not to do anything that may jeopardise my health in the future when they will both need me.

Afterall this is just the beginning. And my MS will just have to get used to the fact it ain’t the most important thing on my notes anymore.

31. A truckload of worries.

Being pregnant raises a whole truckload of new worries aside from my MS which, for a worrier like me, is a bit of a mine field. Is the baby ok, am I eating the right foods (cheese seems to be a hit right now), am I doing the right things, how the hell will it come out …?!

For once MS has taken a back seat and isn’t one of my main worries. And with good reason. For not only is my body busy building a baby from scratch, but it’s busy keeping my MS in check too.

Apparently during pregnancy MS goes into a ‘neutral’ state and so doesn’t cause any major issues. Infact existing symptoms can improve. I have to say that so far I have found this to be true – the ongoing pins and needles I have in my leg and on occassion in my hands seem to have subsided for the first time in a long time. Sadly this isn’t true for all women – those with very active MS aren’t so lucky – but those with mild or inactive MS like me often find being pregnant beneficial. It seems that this is due to the huge surge of hormones during pregnancy which, as well as causing me constant sickness for the first 14 weeks, are also have a calming effect on Lucy Lui and her kick-ass pals that make up my immune system. The Obstetrician compared these hormones to the steroids that are used to treat MS relapses. Well they’ve certainly stopped the Angels in their tracks.

All this is pretty good news as I’ve had to stop my Copaxone injections … whilst I haven’t found any direct evidence that disease modifying drugs are harmful, they are largely untested on pregnant women which I guess stands to reason – willing volunteers are probably few and far between.

What also stands to reason is the down side to all this … following birth MS can worsen and result in relapses although the protective effect of the hormones can be prolonged by breastfeeding. I guess this is hardly surprising given all the hard work that has been put in building the baby and fighting off MS at the same time. It’s no wonder the body is on the tried and vulnerable side and something that I will have to deal with when the time comes.

Another obvious worry is whether my MS will be passed on to my baby. All kinds of things can be passed on but I am pleased to say that MS isn’t one of them. According to the MS Trust there is a 1 in 40 chance of a child of a parent with MS developing MS themselves. By way of comparison the risk of developing cancer in a lifetime is 1 in 3, diabetes 1 in 33 and cardiovascular disease 1 in 6 – so not bad odds on the MS front then!

On the whole things are pretty positive which means I’ll just have to find other things to worry about …

… Tom and I have travelled to some amazing places … the Maldives, Venice, New York, Paris, Dubai to name a few … it’s therefore rather amusing that our baby should have come to be in Tenerife of all places …

‘Tenerife Amatino-Gosling’ – now that is something to worry about!