Tag Archives: chronic illness

Chancellor, be not proud…

john-donne

I’m sure you studied the metaphysical poets at St Paul’s, so perhaps you’ve forgotten your Donne, George Osborne.

No man is an island; remember that when you ‘incentivise’ ESA claimants by making them £30 a week poorer, and deprive disabled people of essential support so you can pass on tax savings to the wealthy.

John Donne’s message (if I remember my GCSE English) is that all mankind has an equal value in the eyes of God, and that the loss of one is a loss to us all; though I’m an atheist, I’d agree with the sentiment.

Multiple sclerosis is insidious and unpredictable. One day I might be ok; the next I may wake up unable to walk. There’s a strong probability that progressively I will lose some of my mobility and day-to-day life will become increasingly ‘challenging’. I don’t need the benefits now, but I can see a day when I will, if there are any left by then.

Who knows for sure if they will be joining me on this journey? How near or far they are from shifting from being part of the ‘hard-working family’ to being one of ‘the disabled’ cohort? Nobody knows. Not even you George.

As comedian Bill Hicks said, ‘non-smokers die too’. It just isn’t fair, this health and disability lark.

We can improve our odds through diet, exercise and abstinence but ‘you and me baby, ain’t nothin but mammals’,  vulnerable to innumerable diseases, conditions, and environmental factors outside our control.

Be it ‘our own fault’ or genetically determined, bits of us will end up misplaced, missing, scaly, swollen, painful or just useless. From cradle cap, lazy eye and glue ear to ingrowing toenails, prickly heat and varifocals, most of leave as we came in, as wonky fruit: tasty bundles to be valued despite physical imperfection. We have so little control over where we sit on the spectrum, and how we move along it.

You can control Capital Gains, school opening times, and the width of the M62, George. But you can’t control who becomes disabled, to what extent, or for how long. You talk about ‘controlling disability benefits’ as if you can control disability.

Disabled people can’t snap out of it and get a job, or cast aside their incontinence and mobility aids because that will balance the books.

Of course, you could show the UK population that when disability strikes them, as it will, directly or indirectly, they will still be entitled to a safe, dignified, valued and productive life, whoever they are.

Hell, George, you could turn the whole thing on its head! Remove the fear, and explain that we’re all in it together: we are all disabled people, today, tomorrow or in the future.

You could have some faith in the British public too. More than 100,000 have signed the petition to have the travesty of your cuts debated in Parliament.

They will cheer for the disabled ‘superhuman’ paralympians in Rio, and the disabled former troops competing in May’s Invictus Games. And so many of them – of all political hues – are cheering every day for the people they live and work with, who happen to be further along the disabled spectrum; so very many are supporting, caring, advising, encouraging and loving. What do your actions say to them?

You won’t bother sending to know for whom the bell tolls, Osborne. It’s got your name on it.

 

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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…’ 

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…

There’s no calorie-free Welsh cake for chronic illness

Go on, have a Welsh cake
Go on, have a Welsh cake

 

My great-granddad Pop was a kind man who encouraged me and my sister to have a treat after we’d been out playing on the beach.

Taking off our matching anoraks in the snug middle room of his and Nan’s Tenby  cottage, we’d be told ‘Go on, have a Welsh cake’.  And there would be a plate of freshly made Welsh cakes to enjoy. With butter, yum. Sometimes it got a bit tricky. Pop would be insistent that we enjoyed more cakes, while Nan, from the kitchen, would shout out ‘DON’T spoil your tea’,  in a warning tone that seemed risky to ignore.

I’ve internalised this call and response from 35 years ago. Nan saying ‘stop, think’ when I reach for food. Which is handy with MS, because – as with any chronic illness – there are so many times when I feel I ‘deserve’ a treat. Sometimes I fight the urge; many times I give in.

Hospital appointment that used up four hours in travelling and waiting? Go on, have a Welsh cake…

Weekly injection of Avonex. Aren’t I brave? Go on, have a Welsh cake…

Just making it through a day at work and getting home…  Go on…. you get the picture.

Unfortunately, there are no calorie-free Welsh cakes, chocolate eclairs, ice-creams, peanut butter sandwiches, or gin and tonics (though, as a fat-free 50 calories a measure, spirits have their place. Of course, staying Drinkaware).

Comfort food hits the spot better and more quickly than any ‘why not spoil yourself with a relaxing bubble bath and a few scented candles’ alternative.

But nobody said life was fair.  For me, being overweight would add to the MS burden, so I’m trying to avoid it. Fatigue and problems with walking can make it harder to be active – and it’s even harder to be active when you’re overweight.

So in the meantime, someone, please invent a special harmless treat for people with chronic illness – Go on, you know you want to.

I’m posting early this week because we are off to be the ‘support car’ for my big sister Laura Wright on her 100k Isle of Wight Challenge walk this weekend. She’s setting off about now and I wish her lots of luck, though if anyone can do it, she can.

She was the one who clambered up the cliffs in Tenby, while I assessed the risks from below. She’d always be ahead on the path, disappearing into the distance at speed, in pursuit of the next adventure. When her mind is set on something, it gets done, and always with care and without complaint, however tough the challenge.

She is raising money for Diabetes UK, a great charity for another chronic condition, where Welsh cakes have to be very strictly rationed.

You can donate via Just Giving.