26/1/14
Ups and downs and new focus's
My new focus is communications volunteer with the CF trust.
I went on a training course to Manchester yesterday and really enjoyed it. I met 6 other people who have volunteered all with connections to CF. A parent, uncle and cousin to a person with CF, someone who had lost a friend to CF and lady who has CF. All have the same thing in mind - wanting to help find a cure for this horrible illness. The job will entail helping the Regional Fundraising managers get information into the media about events or cases of interest. I'm looking forward to seeing how it evolves and I think it will be up to me how much I push my involvement, hopefully it will come in handy for advertising our events.
Can't wait to get started.
Great North swim training
I've been to the baths 4 times now and so far have managed to swim 64 lengths with Brogan and 32 with Maggie. Stamina wise I didn't find the distance difficult but my shoulders and neck really ached so I hope this gets better with time. If it doesn't I'm sure I'll put up with it like I did with running, It can't feel worse than how I felt after the Great North Run.
For me it's all about the challenge of pushing myself to my limits as most CF sufferers have to do every day of their lives just to live relatively normal life. I also like to give people value for money when I'm asking for sponsorship. This leads me nicely on to telling you I've set up a just giving website and is open for donations:) Please free to visit anytime and give me your money.
http://www.justgiving.com/Sue-Marley-MBE1
Ups and downs - just getting it off my chest
I'm really struggling at the moment, feeling down and unable to pick myself up. The weather doesn't help being so dismal all the time but I just can't shake off the depth of despair I feel at losing Rebecca. Some days are much worse than others but the loneliness and emptiness I feel never seems to get any easier, maybe it never will, I suppose I'll eventually just learn to live with it. I get on with my life the best I can filling my time with work and charity stuff and that helps because at least I'm being useful especially where CF is concerned, having said that, I hate the bloody illness with a vengeance, I just don't want it to carry on taking young lives. I try to be as up as I can when I'm with other people because It must get on their nerves being in my company if I'm down in the dumps all the time. Poor Paul, he has to put up with me being a morngy bugger but I know he understands because he feels much the same, he just deals with it better than me and thank goodness he does or we'd both be in trouble.
But, I like to be optimistic and tomorrow is another day and you never know we might get a bit of sun to cheer me up.
Toodlepip for now and thank you for reading.
Sue X
Oh before I forget ,if you want to write a little memory about Rebecca FB me and I'll include it on page 2 of the blog
Sunday, 26 January 2014
Sunday, 12 January 2014
12/1/14
Christmas - New Year - More Goals
Here we are and the 5th Christmas without Rebecca has come and gone.
I think I now have the build up sorted, I just try to ignore it. Don't get me wrong I put some decorations up and went to a works party and enjoyed it, I just don't think too deeply about it. I ignore the Christmas songs in the shops and don't let my eyes stray to cards for daughter and try not to think what I would be buying had things been different.
Christmas day I now get through OK by doing things slightly differently, it's still painful but bearable.Boxing day was enjoyable, we did things a little bit different which made a slight difference and I consumed several pints of lager which helped. The only trouble is that as much as I change things it's still the same, I can be in a room full of people surrounded by family and friends but still lonely because the person I want to be there isn't. New year neither me or Paul could face, we were invited out and at first were going to go, but then couldn't. We decided to just let it pass quietly by without any fuss. Without Rebecca it's not easy for either of us to look forward to the future. That sounds self pitying I know and we do have a wedding and a new baby to look forward to which we are very much looking forward to, but it's not the same. Until you have walked in these shoes, you can't understand the hollow feeling you live with every day.
Having said all that, we both got through the Christmas period without too much crying and are OK, no lingering feelings of grief.
So on to the new year.
This year is the 50th anniversary of the CF trust being formed. In those 50 years even though there is still no cure, there are now more adults living with CF. The life expectancy has risen from teenage to late 30's early 40's. Having said that, there is much more work to be done because only half of the people with CF will reach the new life expectancy and young lives will continue to be lost. I have heard this weekend of a 24 year old girl who lost her battle on Friday, she suffered with the same bug in her lungs as Rebecca and was also turned down for a lung transplant. More work needs to be done on finding treatment for this bug Cepacia, because at the moment there aren't any really effective antibiotics to eradicate the damned thing.
I said a few weeks ago I wanted to do more about raising awareness so I've applied for a job as a communications volunteer. I'll be working for the CF trust as a volunteer for several hours per week dealing with writing press releases, case studies and other communications. I'm going on a training course in Manchester on 25th January to find out more about the job and I'm really looking forward to it, so I'll update when I know more.
On the fund raising, I've entered the Great North Swim with my niece Brogan, my friend Maggie and her friend Emma. My other niece Kayleigh and Dean her husband to be, are also hoping to join us. Swimming 2 miles doesn't faze me, swimming in Lake Windermere does a little bit, but if Rebecca could face and live her life the way she did without much fuss, I'm sure I can rise to this challenge. I shall of course want paying for doing it, so get saving up. Remember this date SUNDAY 15th JUNE:) I've chosen this date as It's near Rebecca's anniversary and I've decided I want to mark her passing with a positive outcome, something she would be proud of.
Come March, my brother Rob is hoping to start organising a walk from Scarborough to Whitby. On completion of this we hope to join Whitby regatta where we hope to have a tombola stall. More about this as it evolves.
The cricket match is still on the cards but we're not sure at this stage when it will be. It won't be early September though as I have a wedding to go to on the 7th. I have started writing letters requesting donations but not much response as yet, it is early days though.
Probably next up will be a tombola stall in Castleford in March, so if you have any unwanted gifts, I can put them to good use.
Hopefully we will try and do as much as possible to help celebrate the 50th anniversary and raise loads of dosh for CF as well.
Sorry for the long post but just wanted to update as much as I could.
Tattybye for now. x
Christmas - New Year - More Goals
Here we are and the 5th Christmas without Rebecca has come and gone.
I think I now have the build up sorted, I just try to ignore it. Don't get me wrong I put some decorations up and went to a works party and enjoyed it, I just don't think too deeply about it. I ignore the Christmas songs in the shops and don't let my eyes stray to cards for daughter and try not to think what I would be buying had things been different.
Christmas day I now get through OK by doing things slightly differently, it's still painful but bearable.Boxing day was enjoyable, we did things a little bit different which made a slight difference and I consumed several pints of lager which helped. The only trouble is that as much as I change things it's still the same, I can be in a room full of people surrounded by family and friends but still lonely because the person I want to be there isn't. New year neither me or Paul could face, we were invited out and at first were going to go, but then couldn't. We decided to just let it pass quietly by without any fuss. Without Rebecca it's not easy for either of us to look forward to the future. That sounds self pitying I know and we do have a wedding and a new baby to look forward to which we are very much looking forward to, but it's not the same. Until you have walked in these shoes, you can't understand the hollow feeling you live with every day.
Having said all that, we both got through the Christmas period without too much crying and are OK, no lingering feelings of grief.
So on to the new year.
This year is the 50th anniversary of the CF trust being formed. In those 50 years even though there is still no cure, there are now more adults living with CF. The life expectancy has risen from teenage to late 30's early 40's. Having said that, there is much more work to be done because only half of the people with CF will reach the new life expectancy and young lives will continue to be lost. I have heard this weekend of a 24 year old girl who lost her battle on Friday, she suffered with the same bug in her lungs as Rebecca and was also turned down for a lung transplant. More work needs to be done on finding treatment for this bug Cepacia, because at the moment there aren't any really effective antibiotics to eradicate the damned thing.
I said a few weeks ago I wanted to do more about raising awareness so I've applied for a job as a communications volunteer. I'll be working for the CF trust as a volunteer for several hours per week dealing with writing press releases, case studies and other communications. I'm going on a training course in Manchester on 25th January to find out more about the job and I'm really looking forward to it, so I'll update when I know more.
On the fund raising, I've entered the Great North Swim with my niece Brogan, my friend Maggie and her friend Emma. My other niece Kayleigh and Dean her husband to be, are also hoping to join us. Swimming 2 miles doesn't faze me, swimming in Lake Windermere does a little bit, but if Rebecca could face and live her life the way she did without much fuss, I'm sure I can rise to this challenge. I shall of course want paying for doing it, so get saving up. Remember this date SUNDAY 15th JUNE:) I've chosen this date as It's near Rebecca's anniversary and I've decided I want to mark her passing with a positive outcome, something she would be proud of.
Come March, my brother Rob is hoping to start organising a walk from Scarborough to Whitby. On completion of this we hope to join Whitby regatta where we hope to have a tombola stall. More about this as it evolves.
The cricket match is still on the cards but we're not sure at this stage when it will be. It won't be early September though as I have a wedding to go to on the 7th. I have started writing letters requesting donations but not much response as yet, it is early days though.
Probably next up will be a tombola stall in Castleford in March, so if you have any unwanted gifts, I can put them to good use.
Hopefully we will try and do as much as possible to help celebrate the 50th anniversary and raise loads of dosh for CF as well.
Sorry for the long post but just wanted to update as much as I could.
Tattybye for now. x
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