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.
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.