23/2/14 Perdido Sin Ti
That means "lost without you" it's something Paul put on my face book page last week whilst I was out.
It is so true for both of us, we are both lost without her. I hope it doesn't sound self pitying, I'm just saying it as it is,but life is empty and lonely now. As much as we try to get on with our existence, everyday has the same never ending quietness. There's no "Mum can you just" or "Dad will you bring", no belly laughs, no chatting, debating or arguing. There's no coughing, medication, Physio or visits to the hospital. (never thought I'd miss hospital appointments). No friends visiting or us going out together for a meal or to see a film. There's just an emptiness that takes some filling and some days are so hard to get through it's a pleasure to go to bed and rid yourself of the day.
I cope most days by filling the hours with whatever I can find but there are some where I just want to curl up and die to get rid of the pain of losing Rebecca because it hurts so much. I feel like that at the minute, tears are never far away but I've been here before and I'll get through it soon but It's not a nice place to be in.
We've lived and dealt with CF which was an enormous strain and we've watched our daughter suffer and be taken by it. But CF hasn't done with us yet, we've now got to try and live the rest of our lives without the most important person in our world and that doesn't get any easier and I don't think it ever will. We are scarred by CF and that's my reason for raising money to help find a cure, no child should have to suffer this horrible incapacitating life shortening illness and no parent should lose a child.
With this in mind please visit the two following links to websites 1) CF Trust to blow up a balloon and show support and 2) my just giving site to donate.
https://www.cysticfibrosis.org.uk/no-party
http://www.justgiving.com/Sue-Marley-MBE1
Fundraising
We are doing a Tombola in Carlton Lanes shopping centre Castleford on Saturday 8th March courtesy of my sister in law Pamela who has organised it all. So if you've got a few minutes and a couple of quid spare, call in and see us.
No date as yet for the cricket match but hopefully this will change soon.
My swimming training is coming along brilliantly. I've been swimming twice a week with my niece Brogan and friend Maggie. Me and Brogan did 2 miles last Thursday and I would imagine I'll be doing the 2 miles with Maggie shortly. I'm sure I'm getting webbing between my toes and my skin is becoming scaly, as long as I don't get bulging eyes I'm sure I'll be fine.:)
I've had my first assignment as a media volunteer which I'll be working on over the next few weeks so something else to keep me occupied. I'll let you know how I go on with this and will update as soon as we get a date for the cricket match.
Cheery bye for now and thank you for taking the time to read.
Sue xx
Sunday, 23 February 2014
Sunday, 9 February 2014
9/2/14
Little steps, raising awareness and a bit of begging.
This may be a longish post but I hope you read it
The last couple of weeks have been good but I've kept very busy with trying to get donations for the cricket match and training for my swim. I've had quite a few things donated and I'm now up to 80 lengths of the pool, so mucho progress being made. We're still waiting for a date and then we can confirm our celebrities but more about that later.
We went to an evening wedding reception last night and though we were both a bit apprehensive about going, we did and we both enjoyed ourselves. I did feel a bit tearful when I saw my friend Ann (groom's Mum) getting into the car dressed for the wedding, she looked lovely but it hits home what I'll never experience. I know Rebecca did get married and it made her happy in her last days but it wasn't the joyous occasion you normally have for a wedding. At that point we were still hoping for a miracle and that she might get better and be well enough to have the one she lovingly planned. But, that didn't happen and it's something I'm learning to live with and in time hope I can go to one without too much sadness.
Now for trying to raise awareness about Cystic Fibrosis
CF is a horrible illness that can pop up anywhere. In our family we know some are carriers of the gene and CF can still be passed on to next generations. Only Rebecca was plagued or unlucky enough to suffer from it and that makes the rest of my family bloody lucky because it could quite easily have been one of my nieces, nephews or great niece if their fathers/mothers had also carried the defective gene.
Below is a little extract from a blog I read, the girl is in her twenties and it's a little insight into living with CF
This is probably going to be a negative post, but I don't even care, I need to vent! It's been 2 and half weeks and I have already plummeted back down to how I was pre-admission. I know I will try to go for a few more weeks without IVs, but it's going to be torturous weeks of pain, exhaustion and frustration. Then 2-4 weeks of IVs to get myself back up to the 50's percentage of lung function. So that's basically around 6 weeks of the pain etc for just 2 weeks of "healthy" living. It's just not fair! And during those 2 weeks, it's not as if it's like a holiday from CF, you still have to do the endless routines of physio, nebs, force-feeding, exercise, tablets etc. I just want a break.
When you're feeling this low, looking to the future seems gloomy too. Unless a cure, or miracle medicine is found, what does the future hold? Most likely, more frequent admissions, decline of lung function, less independence, transplant list, early death. As negative as it sounds, that's the realistic conclusion.
I'd like to ask all my family and friends to visit the link below and blow up a balloon to show your support of CF. It's the 50th anniversary this year of the CF Trust being founded but there's no celebration because although life expectancy is 40ish only 50% of people with CF will live to that age, the other 50% probably won't even reach there 30's like Rebecca.
Please take two minutes out of your life to click on the link and also share it with your friends. The only way to beat CF is by finding a cure and to find a cure we need support.
https://www.cysticfibrosis.org.uk/no-party
Now to the begging:)
I'm training hard and going to the swimming baths twice a week. I'm now up to 80 lengths and hopefully will have managed two miles (128 lengths) before the end of February.
When I'm swimming my chest is tight until I get used to the exercise, people with CF feel like this all the time and they have to learn to live with it, their chest never gets better
Please visit my website and donate a bit of cash, It doesn't have to be much even a £1, it all counts.
I'll be putting the link on facebook regularly so if you see it, even if you don't sponsor me, please share it with your friends. That way it'll raise awareness and hopefully attract some donations.
http://www.justgiving.com/Sue-Marley-MBE1
Please look out for my just giving link and share it pleasssssssssssssssssssseeeeeeeeeeeeee.
Tatiby for now
Sue x
Little steps, raising awareness and a bit of begging.
This may be a longish post but I hope you read it
The last couple of weeks have been good but I've kept very busy with trying to get donations for the cricket match and training for my swim. I've had quite a few things donated and I'm now up to 80 lengths of the pool, so mucho progress being made. We're still waiting for a date and then we can confirm our celebrities but more about that later.
We went to an evening wedding reception last night and though we were both a bit apprehensive about going, we did and we both enjoyed ourselves. I did feel a bit tearful when I saw my friend Ann (groom's Mum) getting into the car dressed for the wedding, she looked lovely but it hits home what I'll never experience. I know Rebecca did get married and it made her happy in her last days but it wasn't the joyous occasion you normally have for a wedding. At that point we were still hoping for a miracle and that she might get better and be well enough to have the one she lovingly planned. But, that didn't happen and it's something I'm learning to live with and in time hope I can go to one without too much sadness.
Now for trying to raise awareness about Cystic Fibrosis
CF is a horrible illness that can pop up anywhere. In our family we know some are carriers of the gene and CF can still be passed on to next generations. Only Rebecca was plagued or unlucky enough to suffer from it and that makes the rest of my family bloody lucky because it could quite easily have been one of my nieces, nephews or great niece if their fathers/mothers had also carried the defective gene.
Below is a little extract from a blog I read, the girl is in her twenties and it's a little insight into living with CF
This is probably going to be a negative post, but I don't even care, I need to vent! It's been 2 and half weeks and I have already plummeted back down to how I was pre-admission. I know I will try to go for a few more weeks without IVs, but it's going to be torturous weeks of pain, exhaustion and frustration. Then 2-4 weeks of IVs to get myself back up to the 50's percentage of lung function. So that's basically around 6 weeks of the pain etc for just 2 weeks of "healthy" living. It's just not fair! And during those 2 weeks, it's not as if it's like a holiday from CF, you still have to do the endless routines of physio, nebs, force-feeding, exercise, tablets etc. I just want a break.
When you're feeling this low, looking to the future seems gloomy too. Unless a cure, or miracle medicine is found, what does the future hold? Most likely, more frequent admissions, decline of lung function, less independence, transplant list, early death. As negative as it sounds, that's the realistic conclusion.
I'd like to ask all my family and friends to visit the link below and blow up a balloon to show your support of CF. It's the 50th anniversary this year of the CF Trust being founded but there's no celebration because although life expectancy is 40ish only 50% of people with CF will live to that age, the other 50% probably won't even reach there 30's like Rebecca.
Please take two minutes out of your life to click on the link and also share it with your friends. The only way to beat CF is by finding a cure and to find a cure we need support.
https://www.cysticfibrosis.org.uk/no-party
Now to the begging:)
I'm training hard and going to the swimming baths twice a week. I'm now up to 80 lengths and hopefully will have managed two miles (128 lengths) before the end of February.
When I'm swimming my chest is tight until I get used to the exercise, people with CF feel like this all the time and they have to learn to live with it, their chest never gets better
Please visit my website and donate a bit of cash, It doesn't have to be much even a £1, it all counts.
I'll be putting the link on facebook regularly so if you see it, even if you don't sponsor me, please share it with your friends. That way it'll raise awareness and hopefully attract some donations.
http://www.justgiving.com/Sue-Marley-MBE1
Please look out for my just giving link and share it pleasssssssssssssssssssseeeeeeeeeeeeee.
Tatiby for now
Sue x
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