The Lauren Currie Twilight Foundation does a fantastic job of raising awareness about Vasculitis.
It’s a nasty nasty condition and many of my friends and family could read this article and identify all too readily with it’s contents, as the story is eerily similar.
I’m still here thanks to the magic of lots of ongoing chemotherapy and a wonderful NHS team; the LCTF work hard to make sure patients with all forms of the disease have access to top class service too.
A plea to all my fellow medics out there.This morning I read a disheartening tale of the misuse of the term “quality of life”.
Here’s the thing.
A Spinal Cord Injury is a devastating thing, and everyone who sustains one goes through all the stages of grief associated with a life changing event.
But it’s not the end of one’s life. Life has changed, yes, but it’s by no means over.
So, when someone is young and very newly injured, and they end up back in hospital with an infection – that is NOT the time to start talking to their family about their “quality” of life.
Yes, their SCI made them more at risk for this pneumonia, yes their O2 requirement is high just now, and yes it looks a bit bleak.
But the fact they go back to life in a chair after you fix their infection DOES NOT automatically make their quality of life worse than someone who’ll go back to a life on legs.
The amount of times I’ve been in the situation where things have “looked a bit bleak” are now too numerous to count.
Almost every time I’ve been in those situations I’ve had at least 5 minutes of wanting to give up; because I’m human.
So if you gave me that option in those 5 minutes I’d maybe take it; but that’s not what I’d say 5 minutes later.
So Please. Please. PLEASE.
Time these discussions appropriately, and Please Please PLEASE remember that your interpretation of “quality” is not necessarily that of your patient’s.
Seek to understand just how they live and what “normal” is for them, and then you can talk to them about the “quality” of their life.
Not long after I was paralysed, one of my consultants said to me “Elizabeth, someday, not in my lifetime, and maybe not even in yours, but someday, folk with spinal cord injury will have a wee box on their belt which will carry signals from their brain and they’ll tell it if they want to stroll or sprint. Someday!”
He’s absolutely right, someday indeed!
This news is very exciting, and far far more so than exoskeletons etc but it’s not the miracle the media are making out; this is the equivalent of a computer taking up the size of two rooms in order to do one simple sum.
We’ve got a long way to go, but it’s great we’re headed in the right direction.
You can see more about today’s news from the University of California at the link below;
Scarily accurate! Especially no.3!
I find it really quite insulting when folk theatrically jump out of the way when I’m behind them; it happens at least twice a day, and it’s just unnecessary!
Hello everyone! 🙋 I recently watched the short videos that Scope and Channel 4 did about some of the things that you really shouldn’t do when you are talking to someone with a disability. It inspired me to do this blog of my top ten things to not do when you are around someone in a wheelchair.
1. Bend down to talk to me.
Just an FYI I’m not a child, there’s no need to bend down and talk to me like I am one.
2. Talk to the person I’m with instead of me
3. Jump out of my way as if I have no control over where I’m going…
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“When you have an accident the doctors try to get you to accept the situation – that you’ll never walk again. I’ve accepted that. But I never had those thoughts about cycling. I never accepted that. I just kept wondering how I could cycle again”
I understand exactly what Martyn Ashton means here; the fact you can’t continue to walk after SCI doesn’t mean that you can’t continue to live as you did, and do the things you did before, you just have to figure out how to do them with a twist.
Read his piece in today’s Telegraph
Two years ago on this date I was driving up to Fintry Primary School, not knowing if anyone was going to show up for the Open Day that I’d planed together with the local Disability Sports Officer and friends at The Bradford Bulls.
I needn’t have worried…!
The Dragons celebrate our second birthday today, and you can read about our exciting birthday present over on the Club Website.
Happy New Year! Or is it? We’re 22 days into 2015 and I’ve spent 17 of them in the hospital… which sucks a bit!
The woes of the last few months have seemed pretty endless, and it’s mostly down to one cheeky wee bug, ESBL. Public Health England state that “There are only two oral antibiotics and few intravenous antibiotics that are effective against such infections” and boy don’t I know it.
I’ve had 4 bouts of Urosepsis since October, and each one has required longer and longer courses of Domestos style IV antibiotics in hospital, that have then continued via my portacath at home on the OPAT Service.
The clever doctors that come up with funky treatment plans for these difficult-to-treat infections have themselves said that we’re at the last chance saloon now, once the last line drug stops working, we’re stuffed.
That’s not something I want to think about, but I’ve been so sick with some of the episodes lately that I’ve had to think about it. I’m never going to not be immunosuppressed, and I’m never going to not be a paraplegic who needs to catheterise. Thus I’m never going to not have this problem; I’ve got multi-drug resistant wee bugs (literally) and that’s that.
I’ve had to make the difficult decision to stop Infliximab because the risk of dying from an overwhelming infection is slightly higher than the risk of losing more sight or having a large vasculitis flare elsewhere – the definition of choosing between a rock and a hard place. I’ve also had to restructure my attendance at University because 4th year Medicine is a test of anyone’s endurance when well, never mind for someone who has spent 14 weeks of the previous year as an inpatient.
So right now things are tough, and there’s no obvious way to fix them. However, my goal in life remains the same; instead of counting the days til I’m “better” (because let’s face it, that day is never going to come) I intend to make the days count… til they’re up.
I’d rather live each day knowing that I’ve achieved something I want to do, than languish in a mindset of fear about when the next (or last) infection will come, achieving nothing but getting frustrated and grumpy. I don’t intend to be foolhardy or reckless, but I do know that there are times where I have to make the decision to go to an event or participate in an occasion and then deal with the consequences afterwards. If I go to a friend’s wedding and then wake up with a temperature then next day, then so be it; I’d rather know that I’ve eked out as much as I can from whatever time I have, all the while trying to kick these bugs into touch. So when people ask why I’m still doing Medicine, and why I refuse to give in, my answer is simple:
Published at 10:36AM, December 6 2014
‘Worrying about body image is toxic’
Here is a list of what I’ve learnt in the past four and a bit years:
1. There are a couple of tiny compensations for paralysis. Being able to pee like a bloke, for one. The ability to whip my leg bag out of the top of my trousers and discreetly empty it anywhere is handy. So is the gift of slow time and stillness, which has educated me in euphorbia, cosmos, goldfinch and yellowhammers.
2. Reaching into fridges from a chair requires arms 5ft long. This is a critical problem. Nothing frustrates me more than being unable to get things from the top shelves or that have been pushed to the back. Especially chocolate.
3. Cobbles are the enemy. And gravel. Not words. If we really want to tackle inequality and social justice, we need to stop obsessing about semantics and change the school curriculum to put every 15-year-old in the country into wheelchairs for a week as part of their life skills course. Ditto undergraduates doing planning, architecture and engineering degrees; plus all those able-bodied bods advising on disability (a growing industry), who rarely have a clue about what really constitutes an accessible environment. Ditto all health workers in training, from doctors to porters. Because when it comes to walking, ain’t nobody got a clue what they’ve got till it’s gone.
4. Worrying about body image is toxic. If I could do one thing, it would be to reclaim the hours I wasted over the decades before my accident, fretting about weight, clothes, appearance, self-doubt. Knowing what I know now, I wish I could liberate three generations of girls and women to enjoy their bodies. It’s healthy and it works, sisters – so stop looking in the bloody mirror and criticising yourself. Get out there and play, run, do sport, study, work, dance, laugh, travel, hug, love ’em and leave ’em, devour every damn opportunity life offers you. You can move and you’re alive. Energy is sexier than anything ever invented by Burberry or Gucci.
5. The ratio of disabled parking spaces to the number of blue badge holders seems to be 1:1,000. Which means I can rarely park easily. Which puts me off leaving home in the first place. Which makes me feel scared and stirs an irrational resentment of other blue badgers who may well be dying, or crippled with pain, but who can walk. What’s wrong with a bit of grade inflation? Any political party that brings in a new, higher category of spaces and badges for us elite, the totally, utterly, wrecked, pitiful and wheelchair-dependent, will get my vote. Bright pink would be a good demarcation.
6. Truisms are true. Hope, positivity and a sense of humour are the most vital attributes in the world. You should go for that ambitious job; you should tell people you love them; you ought to make the most of every minute. What you take for granted is precious.
7. I miss being able to see over hedges.
8. Horse riding is very dangerous. But it’s only marginally more dangerous than cheerleading. In America an estimated 100 out of 7 million riders die per year (0.0014 per cent) and about 2 out of 500,000 cheerleaders are killed (0.0004 per cent). Not to mention the toll of head and spinal injuries. I know it’s academic for me now, but I’m quite glad I didn’t crash and burn wearing tan tights and waving pompoms.
9. Life is not fair. You don’t realise how many other people it’s not been fair to until it happens to you as well. Nor do you realise how many wonderful people devote their working lives to helping us, for a meagre reward. Experiencing the kindness of strangers has been a profound education for me.
10. Power, influence, wealth, prizes and celebrity are very nice but they are nothing – mere dust – compared to health. The more comfortable your life, I suspect, the more your sense of security and entitlement grows. Nothing bad can happen to me. But, take it from me, it can. I would give up all I possess in a nanosecond if I could get my body back.
11. Hands that work are without price.
12. Most of all, I miss being spontaneous. Going to visit my son. Cooking a quick meal. And going somewhere without telling anyone. But, hey, I’m here to write this list.
Melanie Reid is tetraplegic after breaking her neck and back in a riding accident in April 2010
Frustration. There’s a lot of it going about. Dismay. Resentment. Exasperation. It doesn’t really matter which term one chooses – all convey the same message – all sum up that default state of mental turmoil, which rears it’s head, trying to gain the upper hand each time there’s a new setback.
Setbacks; there are a lot of those going about at the moment too. Scleritis, UTIs, Colitis, Shingles, Pneumonia. Literally every fortnight for the past six months there has been a new issue.
A different system goes wrong, meds need tweaking, something else pops up that needs attending to, it’s relentless.
I often feel like giving up. For a fleeting moment I’ll take the newest development associated with this stupid disease and have a few moments yelling at it in my head. I’ll argue that I don’t have the time for it, I have a busy life to lead, doesn’t it know this?
Tomorrow I’m supposed to be at Dundee Dragons for a big event. It’s not going to happen.
Sunday I’m supposed to be at a birthday party. It’s not going to happen.
Monday I’m supposed to be starting a new medical school rotation. It’s not going to happen.
Friday I’m supposed to be flying out to a friend’s wedding; (as yet that one is on the “not happening” list in pencil) We’ll see.
Each time there’s a new obstacle thrown in the path, I feel like one of those bop bags that continues to smile and come back for more, no matter how often it’s pummelled.
The thing is though, whilst I can get very very very mad that my plans are being thwarted by a body that just will not stay well, I can’t remain that way.
Using up precious crumbs of energy on feeling angry is like hoping to win the grand national on a rocking horse. You can put endless amounts of force into making your steed move, but it will never get you across the line.
If I’m going to own this thing, I need to hang on to every modicum of endurance I can muster. Each scrap of mental fortitude and emotional valour needs to be stored up, not wasted.
There is simply no room for fretting or moping, because if I give in and languish in a mindset of “Why Me?” I’ll have no energy left to concentrate on getting well, and doing the things I want to do, albeit on a revised timetable.
So as I lay here willing this latest set of bugs to kindly depart, I have to keep reminding myself to avoid getting on that pesky rocking horse.