December CSS Awareness Post
Written By Mary Lynch
Fancy a trip to Corfu….sorry, no it’s not a competition! Well, I did go in 2008 and it was a life changing trip. ‘What happened?’ you may well ask.
I arrived safely but the next day started a chest infection. Wasn’t overly worried as had been suffering from asthma for about 10 years and had these on and off over that time. However as the week progressed I got worse. A doctor wanted to admit me, but I said no… just about made it home. Got hospitalised and went on a nebuliser; within hours felt better and said to my son – they’ll discharge me soon. Ha! Little did I know what was round the curtain of my hospital bay! The Dr came in and said: ‘we’re keeping you in, Mary, and you’re going to our cardiac ward for observation’…..Little bit worried, but when we got there they calmly told me: ’you’ve got double pneumonia and have had a heart attack in the last 12 hours’. Shock or what? Well, my lovely son and I sat and digested it, understanding I’d be in hospital for a few days, but not too anxious as I felt a lot better. Less than 24 hours later I got the shock of my life – a different Dr came to my bedside; very old fashioned type ‘I’m the doctor (I know everything) you’re the patient (don’t need to know much)’ type of one.
He calmly says: ’Looking at your tests and history I think you’ve got something called Churg Strauss syndrome, (CSS). Don’t worry, I’ll be back later in the week to discuss further…’ and off he trots. ‘WHAT?’ I say to the ward sister. She says “sorry don’t know, never heard of it, but we’ll get you some info”. PLEASE READ ON, this is my story and important…..
HAVE YOU HEARD OF IT? I doubt it. Not many people have and not a lot of doctors either. It’s a very rare incurable disease – I mean as rare as about 1.5 people in a million get diagnosed (always wanted to be special!!)….. And so I was in for many shocks over the coming months. Finding out it wasn’t curable, that I had got to what they call the 3rd final stage of the disease, that there are very few doctors with experience of it in the UK, and that the treatment can be worse than the illness itself. It’s a very rare autoimmune disease (in simple terms your blood vessels are attacking your body) and was only discovered in 1951 – just 4 years before I was born! They recently changed its name from CSS (named after the doctors who discovered it) to – EGPA – Eosinophilic Granulomatosis with Polyangitis – yep what a mouthful, I’m sticking with CSS!!
I’ve now survived over 6 years since diagnosis and my specialist thinks I may have had it lying dormant at stage 1 (late onset asthma and sinus issues – yes that simple – weird or what? – don’t panic symptoms develop) for up to 10 years before that. Prognosis used to be a survival rate of only 46% at 6 years as long as you had treatment! The management treatment now seems to be working for most of us, but it’s not great and causes a lot of additional issues, mainly side effects from the toxic drugs. For me – heart, lungs, diabetes, stomach, bones (to date had two ‘false’ bits to replace knee and part of foot put in); nerve damage….the list goes on. At one time I was taking 36 tablets just in the morning to stay alive….Thankfully that’s gone down considerably, but it’s a juggling act every day with the drugs, which include low dose chemotherapy, as well as one 6 month round of intravenous therapy. My specialist calmly says to me – ‘we’re managing it, Mary. You’ll never get better but let’s not let it get any worse’. It has a few times since, and I’m certainly not even as well as I was in 2008; each year there is a bit more deterioration. I’m now only under 6 different consultants for my various add-on’s.
It’s very difficult coping with all this information, all the tests and treatment, and getting your head around a very different life than you thought you might continue to have. I medically retired early from an exceptionally busy job, can’t work properly full time again, have days when staying in bed (yes) – is actually tiring and painful, and am now registered disabled. One story that was shared with me early on was the ‘spoon’ story – it made me realise how I needed to cope and to also help others understand. Briefly (as it’s a long one, I’ve adapted it slightly) it’s about a lady with a chronic illness whose best friend thinks she understands fully. But when the lady again says ‘I can’t come out because….’, her friend isn’t too pleased….So she tries to explain what it feels like: If you had 20 spoons and each one meant you have the strength and energy to do something, how would you manage your day? she asks. ‘Well, her friend says, I’d use one to go to work for the day…..’, NO….let’s start again, the lady says. ‘Firstly, you’ll use one to just get out of bed, then another to get washed, and another to dress. By then you’ll definitely need to rest before breakfast, than it will take another spoon say to make and eat it….then another to travel to work……’ and so the story goes and shows that probably just by the end of the day – before dinner even -she would have exhausted her 20 spoons and needed to borrow some from the next day! The friend then twigged and said: ‘Now I understand…everything can sap you of the little strength you have some days, and when I ask you to then come out for a meal or film, you might have already used all of your spoons or more that day’.
A sad tale, but one that is true for many people who have some form of illness or disability, to get through each day and make choices about how they wish to live.
My fabulous son, family and dear friends have been a tremendous support, so have a small unique group of fellow CSS’rs, who I chat to on-line every day. We sustain and encourage each other with advice and laughter to get through the difficult days and tell each other about the good ones.
I am sharing my story because I want you to do two things for me. No, not money or fundraising (although you can donate if you wish to the association). This story, my story, is also in memory of one of my fellow CSS’rs, Kevin a young family man from the USA, who died quite suddenly earlier this year from CSS, so our little group agreed to do a post at the start of every month in his memory to raise awareness of the illness and every day struggles we face.
TWO THINGS –please read my story and the attachment to learn more about CSS, secondly please share this with ALL your FB friends, to raise awareness of this rare but at times dreadful disease. Someone you know might be in the early stages – if just one person thinks –‘I’ve got those symptoms’ and gets diagnosed and treated early…just think how helpful that would be. THANK YOU SO MUCH.
For further information –www.cssassociation.org
Ps – apologies to Corfu – it was a lovely trip and the CSS would have triggered fully at some stage anyway. It just happened to be in Corfu!
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