MS Forced My Marriage. To A Neurologist.

Receiving your MS diagnosis has to rank up there as one of the suckiest things imaginable. For most of us it is about sheer uncertainty that follows the words, “You have Multiple Sclerosis”. You may have known it was coming but you didn’t really expect it. To win the Really Bad Luck Lottery.

One moment you are wondering what is wrong with you and the next you are thrust into a mental washing machine of terrifying thoughts and emotions. What does it mean? What will happen? When will it happen? How bad will it be? Can I take it? What if I can’t? What about my relationships? What about my ability to support myself? Will I need a wheelchair? And so on. For the rest of your life there are never-ending variations of worrying about the what-ifs. It is very dull.

I have broken several bones in my life and each time I have been given an accurate prognosis based on the type of break, the fix, and my engagement with the rehab. It isn’t perfect, but it has rarely been inaccurate. Either way, there seems to be a certain clarity that neither I nor any of the people I know with MS have ever been fortunate enough to receive. If you bust a bone the orthopaedic doctor replies in a way that answers the broken-bone equivalent of some of the questions in paragraph one. However loosely. A relationship with the Orthopaedic Surgeon is a time-limited experience. They fix it, dispense rehab advice, and move on. We have both had a forced relationship that we could both end.

However, the standout feature of having a chronic condition that won’t kill you is the nature of your relationship with healthcare professionals and the healthcare system. It is entirely different. From the day of diagnosis you are forced into a long-term relationship – whether you like it or not – where your new partner is usually dictated by the geography of your local hospital.

Digest that for a moment; your new long-term partner is a function of where you live. Where. You. Live.

An MS diagnosis makes us the victim of a forced marriage – not arranged – where we never even got to meet the other half first.

One of the issues with MS is that you don’t die from it, you die with it and that fact seems somehow to make it less serious in the eyes of many. That is wrong, as anyone with MS will tell you. It is sad to say, but there have been odd occasions where death has seemed momentarily preferable to the MS. That is how much it sucks to have MS.

This unconscious downgrading of the seriousness seems to underpin a perennial confusion held by many of those treating our MS or having to deal with our MS. It is between understanding how MS feels and how it actually feels to have MS

Talking of feelings, nothing is more frustrating than not knowing if something is within your control. I have never ever met a patient that hasn’t wanted to intervene in some way in an attempt to control their newfound forever friend. We cast around, instantly becoming less risk-averse, read everything we can find, hear all the input from people ‘just trying to help’, and become far more suggestible to woo. After all, who doesn’t want a magic cure? I certainly do.

More than once in my 27y of MS, I have woken up feeling like I have never slept, or there is a new unexplained buzzing in my ears or pain somewhere. Is it MS? Everything now runs through the ‘is it MS’ filter. It is natural to seek an explanation for these new weird episodes in your life and who seems the most likely person to do this?

Why, it’s your new partner, the neurologist. That’s who. That incredibly learned person that you were forcibly married to at the point of diagnosis. And because we are now in a long-term relationship I want them to understand a bit about me; my hopes, dreams, aspirations, fears and so forth,. I expect them to shed a bit of light on what is going on, and I want the them to ask me how far I am willing to go, and offer me treatment based on my risk tolerance, not on their risk tolerance. It is me who has to live with it day to day, not them.

So, as my new partner, I expect quite a bit. Additionally, of this magic needs to happen in twenty-minute segments once a year. Perhaps unrealistically, but there you go, most long-term relationships have unrealistic expectations in them. Mine are clouded with genuine fear and worry because that is what MS does to you. I am not always the rational one any more.

In a rational world, I would like to think that my neurologist understands my frustrations, my fears, my uncertainty, my attitude to risk etc that I am feeling, but it doesn’t feel that way. Whilst medical school these days emphasises the patient more than it ever did, it still doesn’t cover forced long-term relationships. I get that it is a tricky balance as I realise us patients can be tricky buggers, over-egging things, being hypochondriacs, dangerous know-it-all’s educated by Dr Google and so on. It would be great to think that nestled in the vast amount of schooling that they have received the topic of long-term relationships with patients who don’t die quickly but get sicker and deteriorate over time is included. So far, I am not aware of any relevant training prior to being forced into a relationship with us. Awks for them as well, but then they don’t have MS. The fact remains that in choosing Neurology they have entered a field where they too are forcibly wed to patients by the vagaries of geography.

In a quest for answers and a bit of certainty, MS patients will also look to their doctors for emotional as much as purely medical help. All doctors will have heard variations on the question, ‘What would you do in my shoes, doc?’. Usually, they swerve them neatly as I am pretty sure this is a scenario covered off in ‘Being A Doctor 101′. To pass that beginners module they soon learn to cleverly redirect it, refuse to answer it etc but they rarely say, ‘I don’t really know the answer, but let me go and find out and I’ll get back to you’. That is because many still exist in a hierarchical world where that is simply an unacceptable ceding of control and a display of weakness.

We are not trying to wrestle the intellectual high ground from them, say ‘ha’, or gloat over something we know and they don’t. We are scared and worried about the future and have been thrust into an unplanned long-term relationship with them, and we look to them as the font of all knowledge. However unfair that may seem.

We would very much like to be treated more as an equal and not an annual inconvenience where our partner half fixes a smile, says how lovely it is to see us again, asks after the interest of ours they may remember about, makes understanding cooing noises, pokes and prods us for a bit and then come off as the font of all knowledge with everything to do with us and our condition.

“See you in twelve months; send in the next patient.”

We want more from this relationship. It can’t be transactional, we all need to be all-in, all the time.

The Gift That Keeps On Giving

Can you remember growing up when the school fete always had a drum with the numbers folded up and for the final event of the day some older worthy cranked the handle a few turns, dipped their hand in, and produced a little scrap of paper with a flourish? With great care, they’d unfold it, squint at the number and then read it out. The hushed crowd would consult their row of ticket stubs bought to support the school under the pretence that they wanted the value basket of meat or the half-case of Blue Nun? When I was a kid that was the highlight of the day. The anticipation, the crushing defeat, the look of triumph on old Mrs Miggins’ face as she trousered the plonk? All of that. It was the competition of the year. You wanted to win it but you never did.

How about this for a lottery win? You’ll have to change gear – I’ll wait, the gears are a bit worn and unlubricated at this point and are altogether slower if you have MS – and remember the time you actually won another lottery. One that you had never heard of, one that you don’t recall entering, and one that you definitely didn’t want to win. When you did find that your number had been chosen you couldn’t just decline it or quietly re-gift it after a respectable amount of time had passed?

That is what it is like to get an MS diagnosis. The confirmation of diagnosis conversation is about being randomly gifted something you didn’t want, can never give back, gets worse over time and you have for life. In the lottery of life, you lost out big-style.

You can break many bones (as I have) and perhaps you are never as good as you once were, but they can be put behind you with time and physio. A well-known London Neuro has had some very unfortunate first-hand experience of just this recently. Thankfully, they are recovering quite well.  However, MS is not one of those things you can recover from. MS is incurable. It is manageable for most people, but it is incurable for everybody. You don’t make a recovery no matter how hard you try.

In the last 15 or so years, a plethora of medications to treat the disease have come on the market. None of them are cures, they are all just chemical brakes. Some are the old asbestos-lined drum brakes, and some are the latest carbon-ceramic ones. They are all just brakes though. They can slow down the process, but they can never stop it. The overall aim of these disease modifying treatments boils down to two components. These are:

  • to delay the onset of disability and
  • to reduce the severity of it when it occurs.

That is it.

No cure.

None.

Just brakes.

MS patients are terrified by the thought of losing their physical and mental abilities in the insidious creep of the disease. For many of us there is a tipping point where we go from oscillating between good and bad, into a gradual decline where the only update you hear is about getting worse.

Having MS is about becoming progressively disabled as you age. The accrual of some of these disabilities is visible to others though many are not. Walking with sticks, needing a wheelchair or a colostomy bag are things others see. The crippling fatigue – that you can only describe as tiredness, which doesn’t do it justice – is one and the so-called cog-fog is another but no one sees it. You feel lazy and a slacker and want to do better but you just cannot get out from under this damn feeling of being Sisyphus.

The idea of not being able to string two thoughts together is also incredibly annoying. It is a million times more annoying than the feeling you get when you arrive in a room and stand there blankly knowing you came in for something but know that you have totally forgotten what that thing is. It is that. With bells on. It is the frustration of knowing you are mentally underperforming, knowing you can do better, knowing you used to be better but no longer being able to connect it all up as easily, if at all. And the most frustrating thing of all that? Knowing it is the MS deterioration and will never improve.

You can treat some of the effects of MS with other medications, be they drugs that help tight muscles unwind a bit so you can walk a little less balled up and with less pain, to drugs that help clear the cog-fog a bit. They are all sticking plasters and nothing is the same as it once was.  I feel pathetically grateful for these little bits of relief.

There are not that many chronic diseases that are as long-lasting as MS and as disabling as MS. These days you rarely die of MS, you die with MS. This rather sorry fact means that it is hard for people to take it as seriously as a person you know  (has happened to me a few times) who is killed by cancer in 6-24 months. Their struggle becomes heroic in the eyes of people they have never met. Yes, they fought it hard and nobly. Every single day. And it won, every single time. And then, over time, most people forget them. This is the bugger with MS. It just doesn’t go away and it doesn’t just kill you either. It is there. Gradually disabling you. And you know it and people forget you.

And yet the same refrain keeps playing; MS is incurable.

MS means you will deteriorate. Slowly at times and faster at others but all the deterioration shares a common theme. It will not get better and it cannot be reversed.

I write this, not as a pity party piece, but because I am increasingly frustrated with the care I am receiving. Or not receiving.

With previous doctors, I never questioned the idea that they got it – my MS and MS in general – to a greater or lesser extent. By getting it, I mean at a human level. Not just the aetiology of the disease, the examination of stained slides under  microscopes, the conferences, the papers, the books, but the way this ghastly disease is ever-present in my life and my mind. Every day. Wondering what the next episode will be. As a patient you just want your neurologist to have a degree of empathy with how it feels to have MS.

Not how MS feels, but how it feels to have MS.  They are two different things entirely.

For the first time in 26y of MS I suddenly feel that I no longer have a neurologist who shares my treatment goals, gets me, gets my attitude to life and my attitude to MS. Instead they are a complete ‘book smart but not people smart’ sort of person. I think they find it very hard to actually engage with patients and aren’t a great communicator. It certainly isn’t intentional, just quite tone deaf to feelings.

On this journey you need friends and allies and most of them come from the medics that treat you. You need to turn to them and you want to rely on them and when you suddenly feel as if your only advocate is you, the main researcher is you, there is just one person fighting your corner (hint: still you) it is quite upsetting. Discombobulating is a word I like the sound of but rarely have any real reason to use. Here it is perfectly onomatopoeic and describes the feeling exactly. It is discombobulating. A team effort has suddenly turned into a whack-a-mole process where you are constantly anxious that you have overlooked something, failed to ask a question, failed to take a stand or overlooked something you didn’t know you didn’t know but it turns out it would have been helpful if you did know the thing you didn’t know you didn’t know. And your brain ain’t what it used to be and you know that your mental decline alone is probably allowing things to pass by unremarked on. Things you hope that the neurologist will remember.

On top of this I chuck in ageing – I am 51 now – into the pot and know that there are several things that don’t happen after 55 because you cross some invisible Rubicon which disqualifies you from doing things, like taking part in a clinical trial, for instance. Just the idea that one day in 2024 a switch is flicked and my eligibility is no more is quite worrying.

I want stem-cells. AHSCT, which is the nearest thing to a reboot of the body’s immune system, is not a guarantee that I will skip merrily into a halcyon future. I get that. It is, however, the last shot for me. The fact that my neurologist is a hand-wringer par extraordinaire means that they don’t really believe in that. Perhaps they might be a bit more sympathetic if I were very disabled – a doctor way of saying that they know it is risky and if you die it was your last shot so worth it – but they don’t see it as something for people who are not yet as disabled, like me.

I think that idea is nuts. They have no idea what it is like. If I, an informed patient is willing to take the risks then I struggle to see why I can’t do this. From a pure economic viewpoint I am on an awfully expensive 6 monthly infusion and if nothing changes I am likely to make it another 20 years. That is a lot of money. I will decline in that time and I will need greater input from the health care system, extra services like physio, an FES machine for my right leg, orthotics, the drugs I already take to make the infusions not ruin my skin, the ones to help me grasp at a semblance of mental normality for a few hours a day, and so on.

AHSCT is about £90k privately. However, if it is just costs being covered in the calculation then I imagine it is a fair bit less on the NHS. It either works long term and everyone is a winner or it wears off in a few years, so it is break-even: or at worst I am killed by the cure and – financially speaking – the NHS is the winner. There are variations in between but you get the gist. My beef is that my attitude to risk feels overlooked despite how informed I may be.

This is not all Negative Nancy stuff. Life goes on. I do stuff, I volunteer for MS charities, I pursued PhDs for a while but have failed so am going to take some professional qualifications to try and find work that I can fit into the restrictions on my life because of my MS. I wake up every day and am thankful that when I open my eyes I see daylight and that I am able to do many things some of my MS friends cannot do. I admire how they get through it every day, wonder if I could show the same fortitude, wonder when it will be my turn, and try to keep such thoughts from my head as they are not conducive to being productive.

Overall, though, I am really dogged by the neuro thing. I think I’ll have to change. That means losing a relationship with one of the most amazing MS nurses I have met and schlepping to a hospital that isn’t on my doorstep. The thing with the NHS is that it is theoretically possible to do this but if everything goes like clockwork it will take a good year. And in my head the countdown to 55 is becoming ever louder.

It Is My Cargo

I wanted to hate it and I am told that I should hate it. Hate it like one hates a sworn enemy, that I must fight it and that a true fighter calls themselves a warrior. However, I do not hate it and I am certainly not a warrior. Truth be told, I always feel much closer to a devout coward than any sort of warrior.

Hating it and fighting it consume so much of the energy that I ought to conserve to manage my life, and who wants to live life on a permanent war footing anyway? That must be tiring and living is tiring enough; I am idle and lazy, and am not getting any younger so where is the fun in that?

If it is a war, it is an unwinnable one. Given that we often work so hard to deny the inevitable endpoint by avoiding the topic of the hard stop faced by all of us, we end up skirting the unwinnable part of any war on It.  But the journey always ends, for everyone. That is the only certainty. That and taxes. However bumpy the journey and whatever the cargo we carryif it is treated as a series of skirmishes and not a grand battle (the kind that needs a warrior) then it becomes far more manageable and far less tiring.

Reverting to the topic of youth for a moment longer, there are benefits in getting older and it is worth noting that when skirmishing with it, youth and enthusiasm are rarely as effective as age and guile. It is the application of cunning and intelligence, combined with a good dose of backstabbing and trickery, both tactics of age, that are more effective and can be a great deal more satisfying at times.

To manage it effectively one must first understand the classic ‘How do you eat an elephant?’ conundrum. You cannot do this in one sitting. Instead, you must cut it into bite-size pieces. And (to stretch the metaphor we’ll make it an everlasting elephant), in order to keep things interesting, you must learn to make a variety of dishes. Some are grand efforts and others are best served to the dog. That is the way of things and the way of life. Whatever additional or different wrinkles get added to your life, the tactics remain the same. Deal with it piece by piece. Long-term plans are for fools. Ask anyone who has tried.

The additional cargo can also be viewed as interesting, because it is. It grants us a journey that stands out from the other boring and regular ones that most of our fellow travellers have. It requires a special understanding, a greater level of engagement. And, if you do engage and do not look away then it makes a better person out of you, it sharpens you. It does not dull you.  It may be a biological bully of an enemy, but it is the type of enemy that I want to keep closer than any friend.

I want to know its strengths, its plans, and I really want to know its weak points. We will not stand off against one another posturing on a battlefield of prejudice and misunderstanding. I will speak sweetly to it, wrap my arms around it and bring it in close whilst making soothing sounds. Then I will hit it hard, where it hurts the most and where It is weakest. It is a bully and a they are never swayed by verbal bluster, they are defeated with by your actions, your lack of fear. Even if, underneath, you are petrified. Soon you become less afraid and that is liberating.

My actions will bend it to my will. I will poison it with the most potent elixirs that science can find, and I will adjust my life to hurt it and hinder it at every turn. This is not a one-time event; this is an ongoing series of skirmishes. I may not win them but if I can hold it to a score-draw then I will take that.

After all, the journey ends the same way for all of us, despite the different and interesting cargoes we carry. I intend to enjoy the rest of my journey. It is not all about the cargo. The journey through life itself is a many splendored thing that I can shape to my will. If I do not, then it will become heavier and heavier and I will see and feel nothing but my cargo: and I will have lost.

Dominic Shadbolt May 2020

The Centurion

So it’s my one hundredth post and I feel that I ought to go above and beyond to delight your eyes and tickle your neurons.  Am not sure if length compensates for quality, but here goes nothing…

This post will look back over the last year or so and may even cast an eye to the future. Mostly though it’s going to be a fun if slightly rambling ticklist of what has happened and what I have learned, about myself and others.

Let’s start with the big stuff then. On Boxing Day 2011 we took the very difficult decision to get divorced after fourteen years of marriage. Having eloped and gotten married three weeks after meeting I figured we had done pretty well considering. Our biggest surprise was at how shocked others were.   The one ginourmous issue was our daughter and making it ok for her. As we weren’t fighting terribly it wasn’t the down tools and storm out with loads of screaming and shouting scenario so we tried very hard to go about it like grown-ups and included H in almost all of the discussions and very patiently and carefully explained it all to her, because we felt it was much better to be open, honest and to be seen to be acting cooperatively rather than adversarially. So far she appears contented with the fact that we are happier not being married, which is better for her as well. I like the fact we do the odd meal and movie together as a family.

As an aside; I am baffled at how others could even consider using their kids as a weapon to wield against the other person. That is just inexcusable selfishness.  Despite our differences I know that L is a great Mum and is a thoroughly decent person. H knows we both love her, we live close to one another and she is always welcome at whatever house she chooses. She is approaching teenagedom so it’ll get more interesting I am sure. I was a ghastly know-it-all. Gulp.

Until the decision to divorce I had been a stay at home dad for the previous four years so essential to effect the divorce was for me to go back to work. It took a a few months but I landed a decent job as a – get this for a mouthful – Global Strategic Account Manager in the publishing industry. This started in June ’12. It was hard fought for but I won it and was given a decent salary. Result. Oh, and by the way, I was a publishing industry outsider which was the alleged reason why I was hired. Fresh eyes, new approach, we need to turn around a decline etc etc… Ha.

Paddy Wagon

Look Ma, no gears!

Having have had v. mild MS for the last 20 odd years I am fortunate enough to still be very physically able and am still a bit gullible when silly challenges are suggested. I agreed, with a mate, to enter a 24h, 240 mile (386km for you metric folks) cycle ride from London to Brussels. After all, who wouldn’t see this as a way of raising money for the local MS research team? Oh yeah, we decided to do it on single speed, fixed gear bicycles ‘cos who doesn’t like to up their game by making it a little harder? Uphill? Cowboy up cupcake and pedal harder. Downhill? Relax Grasshopper and spin.

Climbing took a back seat, as did other stuff and I upped my swimming for the cardiovascular benefits, got a proper bike fit and started entering events and training hard. I recall May 27th 2012 being a quite lovely morning. I woke early and as I had an hour or two before the day started proper I went for a ride to make this my first 200 mile week on my fixie. Wham, threw away banana skin (stop laughing) and unsettled myself so much I hit the floor. Hard enough to crush my helmet, shatter my right collarbone and snap my right femur just below the head. I have covered this before but 3 ambulances and 6h of surgery later I was not a well chappie.

Tecfidera Product Shot

Tecfidera (BG-12)

My other big MS news is to do with drugs. I have been on a two-year trial and am one year into the follow-up of an oral MS drug. It turns out that it is the hot new thing and had just been approved in the US (approval by the FDA is the big hurdle in drug development). Catchy name as well. Tecfidera just rolls off the tongue. Still, it’s better than Dimethyl Fumerate I suppose. Additionally, it beats the bejesus out of injecting daily. That was no fun carrying around all the paraphernalia.

Me and my beloved daughter

I got out of hospital after just a week (sheer bloody-mindedness is a powerful thing and being in hospital is really crap) and pushed very hard to start my great new job as it was all part of the “gain economic independence so we could get divorced” masterplan. I was v scared that it would all end in disaster but I didn’t really appreciate just how badly I had banged myself up. Life loves it’s little curve balls though and disaster duly struck! I lost the job after only 2.5 months. Pushed or made redundant? All I can remember is that it was a combination of circumstances, but I certainly didn’t help myself by being very drugged, to the point where I had started to perceive my perma-stoned state as normality. BEWARE long-term opiates. It is v insidious the way in which your reality is altered, firstly with big hits of pharmaceutical grade heroin – much needed roadside and post-operative relief – and then I was tapered onto seemingly harmless Co-codamol tabs. They worked magnificently well as pain control but whilst taking them I was a sleepwalker in my own life and it took quite a while for the after-effects to go. Knowing what I know now I’d go for the pain every time. On the bright side I made some interesting new friends.

2012-10-02 13.18.28

The Spitfire – loads of gears.

Another bike was required but with gears and somehow I came to own a Spin Spitfire, which is c 7.5 kg of titanium awesomeness.  A minor hitch is that after the big injuries have abated a bit the smaller niggly stuff is here. My right ankle is still so messed up and I can’t ride this thing of beauty. Still, with the shit winter we have had it is a blessing in disguise. If it had a bell it would sound like “Bllliiiinnnggggg Bllliiiinnnggggg” !

Freshly unemployed I was really feeling at a loss but also felt like I was at a significant juncture in my life, and shouldn’t waste it. On my bucket list has been to earn a degree. Not really to do something with, as that’s a bit late now, but just to do one. I know I am bright but it would be putting my money where my mouth is. Long story short I have been offered a place to read history at Ruskin  College in Oxford. I have been told that saying “Oxford” is tantamount to “passing off” and it isn’t part of the university proper, although  I’m not that bothered as it is better than going to an ex-poly. It is sort of kind of as there are interrelationships with some parts of “proper Oxford”. Most importantly is that I know I should do it and, short of being offered an awesome job (that is one that is better than just being well remunerated but is actually interesting, with interesting people), I shall.

A history degree from Ruskin. How cool is that? I don’t care if it is from one of the newest colleges. Besides, as an Oxford student an entire years swimming at the groovy Rosenblatt Pool is just £80. That alone is a great incentive.

pool

A great place to unwind.

2013-03-23 15.29.32

Thing of beauty.

The other bucket-list item I ticked off was getting a 911. It is not as whimsical as it sounds as it has been the only car that has captured my attention ever since I was a kid and, without being too melodramatic, I reckon the MS will get me at some point so before I toddle off to Switzerland I need to know I have had one, once. So I decided to get a decent one that had been well loved and wasn’t going to do its brains in depreciation. It costs less to insure than the massive estate car (station wagon for you dang foreigners) I was driving around in. It requires a steady diet of premium petrol (that’s gas for you dang…) and tyres so I expect to be buying shares in the oil & rubber companies to mitigate the expense.

Who knows what the future holds. I have a good feeling though as I think all sorts of previously unforeseen avenues will show themselves. I am grateful to be here and happy and surprised at the way things seem to be turning out for the better. However, before I get too contented I must never forget that life is a cruel mistress and is probably just waiting for the right moment to bugger things up again.

If there is a lesson then it is only for me, as it smacks of a kind of arrogance to start telling others what to do just because that’s what worked for you. However, it seems to be the formula for many a lucrative line in self-help books so perhaps I am missing out.

My only advice would be the following; Illegitimi non Carborundum which translates as Don’t Let The Bastards Grind You Down.