I can’t believe August was the last time I posted here!! I really don’t know where the time has gone. Well when I think about it I guess I do, since then I have zip wired across a North Wales Quarry, held three music events, two Hospital Fun Run events, attended and presented three talks to audiences wanting to hear what it’s like to live CF, made a short film about living with my condition and inbetween endured at least 8 weeks of intravenous antibiotics. Wow I knew I’d been busy but writing it down has made me realise just how much.
All worth it though as the original fundraising target of £10,000.00 in 12 months actually became £14,000.00 !! The fundraising journey has been tiring at times but incredibly rewarding & enjoyable. I’ve met some amazingly generous people over the year all of whom have touched my heart. To all of those involved saying thank you does not seem enough!
It’s official, I have caught the fundraising bug! Although I will not be having as an eventful or busy year as the last, I can’t help but think of fundraising ideas continuously. My efforts have not gone unnoticed and I’ve been offered my dream job for the Cardiff & Vale Health Charity, so just as well the fundraising juices are still flowing. I’m over the moon and this wasn’t my intention at the start, so surprised but incredibly chuffed I’ve been given the opportunity. Added bonus that I can work from home, so treatments and meds can continue uninterrupted!
Currently doing my own intravenous antibiotics at home, as per usual the bed waiting list was ridiculous. Unfortunately they are still nowhere near the £1.3M needed to refurbish the new ward. This is deflating at times but my mission continues!
You can watch my short film here: https://www.youtube.com/watch?v=8lFPc0RAfJw
Whilst chatting and laughing with fellow CF sufferers in a forum we have concluded that these are the things not to say to someone living with the condition:
You don’t look ill.
That’s a good cough you could get two weeks off work at least with that.
You’re just getting older.
Everybody gets tired.
Have you tried natural remedies?
You should give up the fags.
It must be nice not going to work.
Wish I had time for a nap.
If you’re tube fed why bother shopping for food?
You can’t park there you don’t look disabled.
If you’d just get out more.
You need to do more exercise.
I know exactly what you’re going through I have asthma.
You’re so lucky you can eat what you want and not put on weight.
At least you can’t see your illness.
You’ll be alright in the summer though won’t you?
You look far too young to have a serious illness.
Saving the best unti last I feel… Can I borrow your oxygen those stairs nearly killed me.
So humans we can all be a little daft sometimes, yes myself included but shall we all think before we speak. To all my fellow CF sufferers I’d like to share this message:
For those of you that know me, yes you could say I’m confident and for those who know me really really well yes you could say I’m quite loud but for some unknown reason public speaking has always put the fear of God into me. I’m not exaggerating when I say I’d rather have teeth pulled out without anaesthetic than speak to a room full of people.
Today I took a giant leap out of my comfort zone and agreed to give a twenty minute talk about living with CF, alongside a genetic counsellor, to sixth form students at the University Hospital of Wales. I must of been having a funny five minutes when I agreed. However having spent a day preparing for it there was no way I was wimping out. I certainly didn’t want to let the students down either.
So I’ve just returned and am I glad I faced my fears! I didn’t take to it like a duck to water but kept my nerves under wraps and the students seemed engaged, throwing lots of questions at me towards the end.
I can only think that my fundraising efforts over the year and the interesting and generous people I’ve met along the way have inspired me to do this and am I glad I did. I feel like I can achieve anything now.
I’ve had a lovely morning and met some more fascinating people. Sharing life experiences is most definitely a good thing.
“You wrap your arms around each other even though you can’t touch!” So true and said by my wonderful mother. Due to risk of cross infection amongst CF patients we can not be in each others company let alone give eachother a hug but boy we find other ways to support one another when the chips are down.
Over the last 12 months I’ve had the pleasure of getting to know Kayleigh all be it mainly on our hospital stays together but over this period of time I hope she would agree we’ve become firm friends.
It’s been an emotional roller coaster since kayleigh popped her head around my door at 4.30am yesterday to tell me her amazing news! I wanted to hold onto that ambulance and go with her. She deserves this gift so much and if all the love and support she has can make her better she’ll be bouncing around in no time!!
I urge that that everyone considers organ donation, it saves the lives of inspirational people like Kayleigh.
Read Kayleigh’s story here: http://organdonationwales.org/Your-Stories/kayleigh-old/?lang=en
My stay on the ward has been very different from previous stays and tragically I’ve experienced something that although probably inevitable given the number of years I’ve been coming to the hospital, felt nonetheless bizarre and very sad.
A young lad with CF six months post double lung transplant, staying across the corridor from myself lost his life on bank holiday Monday. I didn’t know him but the heartbreak on his families face was gut wrenching. Such a blow that his second chance at life wasn’t meant to be.
Bank holidays are quiet anyway but the silence on the ward that evening was deafening. The nurses did their best to hide it from the other patients but it became apparent that we all knew what was happening. Still now not one member of staff has mentioned what has happened.
Family and friends have asked me how I am since his passing and I’m really fine but I do keep thinking about other people’s feelings as if I’ve detached myself from the situation (unintentional coping mechanism maybe). How must his family & friends feel, how must those in last stages of CF feel, those on the transplant list feel, how must the nurses feel as they go about their day trying to act like nothing’s happened. It felt so so surreal.
As a nation I don’t feel we talk about death freely enough, we are too afraid to, too afraid it’ll hurt us too much but I feel if we talk about it more we could be a little more prepared. At the same time I wonder can we ever be. One thing I do know is that time is precious!
‘Woke up today feeling very grateful for what I have, not the material objects but to have so many wonderful people in my life, to still be breathing and realising that the little things are often the big things. Never take life for granted, embrace every minute, tell and show those you care for that you love them, do it today and do it more often’. Beth Clarke – 05.05.15
It’s been such a busy time lately but it’s time to recoup and start some intravenous treatment again. I’ve been struggling for a few weeks and unfortunately I must give in and rest. I’m little more disappointed this time as it’s my first wedding anniversary this weekend and I’ve had to postpone our night away. It’s not the end of the world just very irritating. CF’s impeccable timing strikes again.
Unfortunately the hospital bed situation does not improve and will not improve until the new ward is built. I was meant to go in as an inpatient yesterday however an emergency patient took my spot. I understand there will always be someone worse off than myself so I’ve started home IVs whilst I wait for my hospital bed to become available. All of this again highlights how important our Better Life fundraising is. All is going well and having it as a focus has been brilliant. We have currently reached £2,000.00 and feel we are doing well.
Next fundraising event half of Bertha’s Army – Ceri and Jackie walk London to Brighton on 23rd May. They’re training hard and their dedication is commendable. Here they are last weekend completing a 30 mile walk. Luckily the weather improved as the day went on.
You can sponsor their walk at http://www.justgiving.com/berthasarmy
Hi ho hi ho it’s off to the hospital gym I go. I’m trying to be jolly about it but the truth is I’d rather stick rusty nails in my eyes.
I think it goes back to my hatred of PE in my school days. Probably to do with our dragon of a teacher, with her shell suits and Maggie thatcher hair do. Self written ‘get out of PE’ letters didn’t wash with her.
I know the gym has great benefits for me and cf patients alike. It can build muscle groups, improve posture, clear sticky mucus (gremlins) from your lungs, it can alleviate stubborn digestive problems and strengthen bones preventing osteoporosis common in CF. I know all this I really do but yet I still detest it.
Okay okay I’ve put the rusty nails down. Hi ho hi ho…
I suppose I may work off a couple of slices of cake I ate at the weekend too. Our Easter Bake on was a huge success and although we still have money coming in we think we’ve raised about £580. Yum that’s a lot of cake! Amazing.