Category Archives: Treatment

How I made it through the MRI with Manilow

Barry Manilow greatest hits album cover

Having an MRI scan is like being massaged by a xylophone, with a cage over your head

MRI scans are not fun, especially if you are claustrophobic (the only sensible phobia in my opinion. Who’s got a good thing to say about being trapped?).

I’ve just ‘ridden the tube’ for the third time and, I’m proud to say, I managed to be entombed for 25 minutes without suffering a whimpering panic attack. Like a horse refusing its bridle, it took me at least four attempts to accept the plastic head support being lowered over my face on previous occasions. (Think Hannibal Lector’s mask in Silence of the Lambs.)

It’s ear plugs in, headphones on, cage down, and trundle backwards into the tunnel, I can see my feet , but DON’T LOOK UP!

‘Oh Mandy…’

Ok, I confess that one of my coping mechanisms is singing Barry Manilow songs to myself. Don’t ask me why. I’m not really a fan. ‘Copacabana’  got into my head once, and the repertoire has grown steadily since.

I recited my mantra: I’ve done this before; I am safe; it will end

As the first wave of panic washes over me, I recite my mantra: I’ve done this before; I am safe; it will end.

My amygdala is shrieking ‘Noooo, get out of here!’ and I toy with the button they give you to press for help.

‘Oh Mandy, well, you came and you gave without taking …’

I force Barry’s words through my mind again, and then remember that my sweetheart Ben is waiting outside and has promised to buy me a drink, if I survive. Then I’m thinking Talisker, a nice large Talisker. Which takes my mind into the duty free of an airport departure lounge, where I’m waiting for my gate, with a neat little carry-on case and holiday dreams.

‘… and I sent you away. Oh Mandy.’

No. I really don’t like this. I can’t get out. I can’t get out. But I don’t have to panic. Just yet.

Every few minutes the machine belts out a fresh rhythm

The noise is a useful distraction too; it sounds very wooden and discordant for something so hi-tech. As a new scan starts every few minutes, the machine belts out a fresh rhythm, and judders away beneath me violently. I try to visualise modern dancers moving in time as my spine vibrates.

‘Oh Mandy …

Don’t panic! Oh, I’m not actually panicking. This is getting a bit … boring.

Then all sound and movement stops. Anxiety builds. They’ve forgotten about me! They’ve gone home and left me! I’m trapped!

But these scanner nurses/attendants/operatives are too business-like for that; this privately run mobile scanner is parked in Queen’s Square to cut hospital waiting lists, not scoop up patients like the Child Catcher in Chitty, Chitty Bang Bang.

I felt like a character in Resident Evil

For my first scan, three years ago, I had to find my own way through labyrinthine corridors to a basement MRI department, dragging a drip trolley and wearing an open-bummed gown. I felt like a character in Resident Evil.

This time it was a warm, rain-fresh Sunday afternoon (yes, Sunday), with the promise of treats, and lots of love and support waiting for me.

It came to an end and I was safe. They pulled me out, took off the mask and let me go. The relief was sublime; the sense of pride was powerful too.

And there was a pub across the square, so I didn’t have long to wait for my single-malt reward.

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It’s legs crossed about bladder drug decision…

ladies.jpg

My bladder-control drug  is ‘seriously old, I mean seriously, decades old’, says the seriously young doctor in the uro-dynamics clinic.

Somehow I feel this is my fault. Like, durrh, why are you taking that old-fashioned junk? Umm, because a GP prescribed it…

The side effects are naff. Dry mouth I knew about, but dry eyes? ‘Oh yes, it causes dry eyes too. Dries up all your mucus…’  A head-slapping moment of realisation – THAT’S why my eyes have felt full of sand for more than a year??? ‘Oh yes… Natch.’  I quickly process how much I’ve spent on dry eye spray and move on.

I am prescribed the latest drug on the market, which has fewer side effects, and leave feeling nicely on trend.

‘No, I can’t prescribe that without a letter and a decision from the CCG team’ says my  GP at my drugs review the next day. ‘It’s a seriously new drug’, she explains.

And I’m left feeling as though it’s my fault again.  I’ve jumped a queue by mistake and a man in a suit is rattling his Times at me. ‘Gosh, so sorry’, I fluster in my head.  ‘Of course I should have tried some more mature drugs before racing ahead with those bright young things.’

It is is down to cost and accountability. NICE hasn’t said the new drug is the most appropriate treatment to calm bladders made excitable by MS – (I want to go again, pleease can I go again? You’ve only just been!).  GPs in the new clinical commissioning groups can’t prescribe it long-term just because an enthusiastic hospital doctor has decided to give it a whirl.

As an empowered patient, I have to ‘just get a letter’ from the hospital justifying the prescription… wish me luck.

*Both doctors – the ‘seriously young’ one (simply a lot younger than me) and the cash-conscious GP – saw me promptly, were friendly and explained what they could in the time available. It’s the system that needs tweaking, not the people.

 

 

 

 

ECG – easy as 1,2,3

ECG taken in March 2015
The ECG nurse won’t let you leave the room if anything is up.

The ECG was slotted into my ‘group education’ morning about fingolimod, the new MS drug I’m in the running for.

And education it was: we got facts, gave details and will have to pass blood, heart and eye tests to get onto this second-line disease modifying treatment. The six of us waited for nurses, bloods, our ECGs – very quick once the machine was fixed – and then for the 1-2-1 medical history check where I realise there are lots of things I haven’t got wrong with me.

Fingolimod (trade name Gilenya) modulates your immune system by keeping your T-cells ( a type of white blood cell) trapped in your lymph nodes, where they can’t vault the blood-brain barrier and attack the myelin that coats your nerves.

The plus points? 70% reduction in relapses, slower disability progression, a daily pill rather than injections, no regular flu-like side effects. Big thumbs up.

The negatives?  If you catch a cold, scratch yourself in the garden or eat some dodgy buffet food, the T-cells can’t help you fight infections in the usual way. ‘Sorry mate, stuck in these lymph nodes. You need to get onto those  other lymphocytes – the B-cells – or maybe give the leukocytes a bell.’ (Don’t take my word for it)

Our questions about ‘Will we get colds all the time? Will my acne return? I’m rather prone to cysts… How do we get antibiotics quickly’ Can I eat raw cheeses from Borough Market?’ were met with the infuriating but honest MS answer: ‘It’s different for everyone. We’ll keep a close eye on it and see what happens…’ 

It is ‘immunomodulation, not immunosupression’ we were reassured. It was not like aggressive chemotherapy. I nodded politely at the time but my comfort came from trust in the MS nurse, rather than really ‘getting it’.

At least we weren’t alone – sharing the experience always helps, you get to share stories of subtle symptoms, relapses and steroids. How we laughed! We did actually, quite a lot.

So now we wait some more. I need an eye check because I’ve had uveitis, and there’s a risk that… but if that’s ok, and my blood is ok, then I should get my first dose in June.

And that has to be followed by 6 hours on an ECG machine, with constant monitoring by a cardiac nurse in person and a cardiologist remotely. That’s because fingolimod slows your heart rate down on the first dose and there’s a risk that…. oh never mind, you get the picture.

‘It’s different for everyone. We’ll keep a close eye on it and see what happens…’ 

Suspicion on steroids

At least when wide awake at 3am I was able to enjoy Suspicion, directed by Hitchcock and starring Joan Fontaine and Cary Grant. Iplayer and iPads are wonderful things. I was contemplating a drama in Gaelic before spotting this thriller, which I’d never seen before. What starts as a rom-com, with Grant a fast-quipping and kissable rogue, slides into an unsettling mind game where it is impossible to tell if he is telling the truth. Because he does lie, a lot – or is it all the time?
Joan Fontaine won an Oscar (the only one for a Hitchcock film) for her affecting performance – passionate, smart, silly, confused, smart and ultimately, suspicious. And she is quite beautiful throughout – in a fascinating timeless 1940s way that you could never dream of replicating. Which made it an unthreatening watch from my pyjamas and bundle of pillows, with Roger the cat trying to find his niche on my feet.
This has happened before when I’ve had a course of IV steroids to speed up a relapse, as is happening right now. I feel really tired, stay up as long as possible, get into bed and stay wide awake. Run-of-the mill side effect…
I try to go with the flow – enjoyed an hour of an Inspector Maigret audio book (I am also hooked on Audible) before the film, and tried hard with my mindfulness meditation app afterwards, before being foiled by random leg spasms. What’s that all about, eh? Roger didn’t know either.
Of course, sleep came two hours before my alarm went off, to get me back here in the day unit by 8am, to watch the drip for an hour and listen to a bit more Simenon.
I’ll let you know how it goes tonight.

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Stuff CBT, I need some anger management

 

 

 

Two hands rip up a piece of paper, in the style of Roy Lichenstein

I found two bits of paper while doing some sorting out yesterday that made me sit down and think. And then get cross.

One was a CBT (cognitive behavourial therapy) appointment letter for next month, and the other was a doctors’ note, referring me for CBT six years ago, to see if it would help me with my ‘unexplained’ chronic body pain.

This will be my fifth set of CBT. The therapist-before-last decided that I had obsessive compulsive disorder because I was convinced that there was something ‘wrong’, all the time. There was, I had MS, which was hitting me physically and cognitively at random. It wasn’t an out-of-body experience, it was a buggered-body experience. I didn’t just imagine thinking was getting harder, it was.

And I’m so angry about that.

I’m more angry about that than I am about having MS. It isn’t ‘fair’ but life isn’t fair. There are many, many ‘unfair’ conditions that afflict probably the majority of the population at some time in their lives. Imperfection is the norm. And rotten things happen to the nicest people. We are vulnerable creatures.

I am so angry that I spent years not knowing what the problem really was, and that nobody worked it out. There should be no stigma with mental health problems – that is one of the unfair conditions – but the source needs to be properly identified.

I’m so angry that I was so very hard on myself and kept pushing, and blaming, and trying to figure out why my efforts to feel better and have more energy never worked.

I think it would be good for me to go a bit Gestalt, and scream at an empty chair – which can be filled by all the GPs who didn’t spot what was really wrong.

But here we again with the measurable CBT. I am grateful for any help I can get and realise I’m fortunate to have the chance – and I would urge anyone to step past my cynicism and try it. CBT does help.  It ALWAYS helps to think about your thinking and talk about it to someone who wants to help you and is trained to do it. Always.

I am expecting to score feelings and to be told about black and white thinking, catastrophic thinking, guessing what other people  are thinking, and confirmation bias (which translates to ‘see, I told you that would happen!’).

I will observe and track my thinking patterns and try to make them more positive as the weeks progress.

I will be a good, compliant patient who does her homework, as I always did at school. My depression and anxiety scores will improve.

At the end of the course, probably 7-10 weeks, there will be a graph to show how much ‘better’ my improved thinking is making me feel.

There is a confounding variable, of course, which is my knack of working out what people want to hear and instinctively saying it to get a better score (at least that’s what I think I’m doing).

All I have to do is carry on thinking ‘properly’. That’s the hard bit. Maybe this time will be more successful, because this time we know who the enemy is – and it isn’t me.

I’ll let you know how I get on…