Friday 10 February 2012

Hurtful Hateful People

The yesteday I had a rather nasty comment on my group in facebook. The person implied that I was after fame and getting money for my charity. They said that I was now rubbing my health and happiness in other peoples faces, who weren't going through a good time, that they had even felt sorry for me when I was ill, but implied that now I wasn't ill they weren't interested and felt sorry for my donors family as there has been no mention of them. The person subsequently deleted there self from my page after numerous others responded to the comment. I personally sat back and just thought about it. The comment upset me, not because any of it was true but because someone had set out to be hurtful and unkind, that this person obviously only knows the surface story and has not taken any time into trying to know or understand me.

I'm not going to lie, the attention I have had from the press has been very positive and kind and I have enjoyed that in a sense. Would I go through everything iv gone through just for the attention, certainly not, but it has given me a greater perspective over life and a greater understanding of other peoples misfortunes and suffering, which is why the comment on me rubbing it in peoples faces is so hurtful. The reason I share now is to show people just how good transplant can be, that there is hope after end stage CF or other terminal diseases requiring transplant as the only option. I want people waiting on the list to not lose hope, to hold on and fight till the very end because even then there is a tiny ray of hope that things will turn out good as they did with me. I also want to show people who ain't on the donor register that if they become donor that in the horrific circumstances of there death that perhaps they can help save a life and what a difference that can make.

The comment that 'now I'm asking for money for my charity' well to begin with its not my charity, I'm raising money for various charities that have helped save my life and make it better, I'm doing this because i want them to carry on  delivering the first class help they have provided and carry on saving other peoples lives, I don't want anyone else to suffer the way I did. I don't see how wanting to help people is a bad thing.

They say it as if I'm receiving money out of the things I do, I'm not. I didn't receive any money for the documentary, I receive no money from the news papers, the magazines sometimes contribute money, I have donated these funds to charities in the past and other times it has covered costs for doing them.

The charity ball, so far if anything has cost me personally, I will take my own money out of the funds but otherwise all I receive is the knowledge that some how in some way I might be changing the world for a better place. Is that a bad thing?

The comment that implies this person found it more enjoyable when i was ill, to me, shows that they are obviously in a lot of emotional pain themselves, for that, I feel sorry for them, that they seem to enjoy other peoples pain as a way of feeling better, the signs of a true bully.

Lastly, my Donor, all I can say on this is I feel disgusted that they have even mentioned my donor, It is none of any ones business about my donor. They have no right to even mention them, they do not know how i feel about them, or what I do each day to honour them, there are things in my life that even to me are personal. This is one of them. All I can say if thank you every day and believe me I Do. I have discussed various feelings in this blog before about them, I do not wish to re iterate them. I'm still grieving for them to.

So I felt compelled to write this blog, perhaps the best thing would be to ignore this ignorant and unintelligible person, to not feed the troll so to speak, but I feel affected by what people say and its not so easy to rise above it. Human emotions are a difficult thing and yes I am full of them.

Ill leave you with a few articals about me, one i didn't know was going to be printed and another magazine one. Express and Echo

Pick me up

Lastly I would like to Invite you all to the '2nd Chance Ball' named after this blog.
Please feel free to email me for tickets or enquires, my email is on the poster above.

Also a big thank you to the generous people who have sponsored me so far, http://uk.virginmoneygiving.com/team/kirstiesbigbreathbikeride 

Im doing a bake sale Sunday and Tuesday to run along side LLTGL Valentines day bake sale, I will blog on how they go.

Thanks for reading.

29 comments:

  1. You give me hope. I hv end stage pulmonary hypertension and fibrosis. I am listed for a heart/double lung transplant at Papworth. I hv had someone complain I raised funds with friends for Papworth (£7500). Bet I can guarantee they'd accept a transplant if they needed one. Noone should be in need of a transplant. To those who are, they understand. Even if you give one person hope, you should carry on doing your incredible work

    ReplyDelete
    Replies
    1. Great comments Kristy, I am a non-CF Bronchiectasis patient at Papworth and I am sure that Papworth is at least the equal of any Transplant centre.I wish you the very best for the future and you get your transplant. God Bless, Kelvin (bubbly on BRUS)

      Delete
  2. Hi Kirstie This is Julianne! Reading this made me feel real angry!! Like you said they obviously havnt got to know you because if they did theyd see just how much of an inspiration you are not only on educating people about CF and organ donation but to people like myself who are beginning the same journey as you did and for me to see you as you are and hearing your updates on how great your doing really gives me a positive boost!! These people are obviously clueless hence why they write silly things!! As for your amazing donor we all know how much you think of them and how much your contantly thanking them for the gift you recieved so dont ever think youv not done enough!! I dont need to say keep on with all your charity work because I know you will!! Just dont let the small minority of small minded people get you down us CF'ers are stronger than them ;) x x

    ReplyDelete
    Replies
    1. These ignorant people are jealous and have no understanding of how desperately ill. people are to have to experience the trials and rewards of having life saving transplantation.
      They cannot even begin to comprehend the emotions behind the decisions made by the donors and their families. If they had to walk a mile in our shoes then they might not be so quick to judge. They are bullies. No more and no less. Their ignorance is beyond belief. This is the reason why you should continue highlighting your case and how you have now a future to look forward to with your new husband. More donors are always needed. There are donor banks now for those still with us that wish to help others who are misfortune the enough to suffer with serious health issues. The medical service has moved on in so many ways . You Go Girl because us recipients are not only grateful to our donors in their selfless decisions,but to the sometimes grieving families on their loss.Ignore these poor misfortun ate people as they are very much the minority. Teach them the benefits of your own experience and let them pray that they remain healthy throughout life so they maybe lucky enough to not have to go through the hard,painful journey of others. God Bless You xx

      Delete
  3. My friend had end stage CF and didn't get a transplant in time. You give me hope that others might not have to go through what she did and that more people will sign up to be donors. You're making a positive difference and I think the amount you do for others is amazing. xxx

    ReplyDelete
  4. Some people just have no idea of anything at all and are only happy when things are going wrong and I would say due to how much their lives are not going well cannot deal with happiness and good news....I think what you are doing sharing your story with us all is wonderful and I hope you continue to do so

    ReplyDelete
  5. I am disgusted to hear about this person Kirstie. I follow your blogs on here & follow you on Facebook & watched your documentary & private messaged you as l am going through the tests for a lung transplant right now & l have found following you a great help. You are an inspiration & what you have been through in your short life is awful but look at you now! You are amazing. Never ever forget how special you are & we all know that you thank your donor everyday & that you never ever forget them. There is some cruel wicked people out there & it makes me sad that you have had to deal with such a person but you are way better than them & like you say they must be in alot of emotional pain themselves. I hope you are feeling abit better as l can understand how such comments get to you & it's easier said than done to not allow them to get to you. You are the one who comes out on top though & your the better person & there's so many people out there including myself that admire you. Stay strong girl. Much love sent to you. xxx

    ReplyDelete
    Replies
    1. Good comments Sarah, great that you found the time to defend Kirstie when you are so ill yourself, I wish you the very best in the future in your fight against CF. I wish you all that you wish yourself,God Bless, Kelvin(bubbly from BRUS)

      Delete
  6. i didn't see the comment but the way you have written about this pretty much sums it up, they obviously have alot of issues in there life they cannot deal with therefore are handling it all in the wrong way!!
    you have done an amazing thing throughout your journey pre and post transplant and for people like me, it has helped me at my hardest times and no doubt will continue to help me until one day i get to your position!! :) all my love keep up the good work...and as for the donor comment they obviously havent read your blog! and you have so much support dont let this knock you! as you no urself x

    ReplyDelete
  7. I can't believe someone would say something like that to you!! You've been such an inspiration to me as I've followed your Blog over the last couple years. Thank you for being such an amazing, beautiful & strong young women (:

    ReplyDelete
  8. Oh kirstie sweet angel!! This is maddy- I'm in fun cf'ers unite and your transplant group- I honestly fell in love with you and your fight, I've got end stage CF so- It's like I was watching what i'm going through- with a happy ending. I can't get a tx for various reasons and I've made my peace. I'm in hospital at the mo- been in ICU for 2 weeks and I've had rumours flung around about me on the internet by a mother of a cf child who is 40 (i'm only 21 now) saying I didn't have CF, that it was all in my head- that I was a liar and a scammer because she sent me a few things and I stuck up for someone she didn't like when she bullied them. This spread to an 'international' group and then some aussie's jumped on the bandwagon because I wasn't in their CF groups in Australia and before I knew it- I had people from America talking about me, people from Australia out-ting me- and jsut people in general talking about me- Again, This time I was in ICU and as you know how stressful, vulnerable- everything BAD happens when you're in ICU I felt like it was the end of the world and my world was over and why did I wake up- why did I survive this to have to go through this stupid thing, mean people- but you know- it made me see who was REAL, who I could trust and that some people will love me- other's will hate me- but most people are just selfish and want a bit of drama- the worst thing I could do, is lose respect for myself and give them that satisfaction and attention (THAT THEY NEED, NOT ME) when I need to enjoy this time I've got- and remember every beautiful moment of life, no matter how bad it might be at the minute- we are STILL breathing somehow. You've at least got a fan in me. I think you're the best- and I think the best revenge is them seeing you do so well, It's probably killing them- because babe, you're only getting better.

    ReplyDelete
  9. Kirstie unfortunately some people are somehow sadly jealous of you popularity .If they sat back and thought correctly about it would they choose to gain popularity in the manner that it has come to you .You have gained yours because people are truly inspired by you in the way that you have handled all that you have been through.No one would choose to spend there youth so ill and tired and disabled in order to gain a life changing operation which subsequently then makes them a public figure. I am sure you did,nt ask for this for yourself.What you have done in a very successfull way is highlighted not only the disease itself but the need in general for organ donation and the sheer brilliance of those who carry out these procedures for the life giving and life changing acts which they are .As for the people who donated there organs and there families I feel certain that they do so simply for the betterment of others lives who so desperately need them and derive a sense of giving that no other person can feel .Kirstie you carry on with your work because you are doing a TREMENDOUS job in a very charitable way do not be put off by doubters or people who try to put a negative slant on something so positive for they have not clearly thought things through .To those people who do create negativity to matters such as these just remember your lives are not yet over (think about it ).To summarise continue to be the Kirstie who we have all come to love and respect and as for the pole exercise go for it angel because you are really good at it and you enjoy it .Wish you well Kirstie God bless you .

    ReplyDelete
  10. Hi Kirstie,
    I am an 'end-stage' CFer and have enjoyed following your blogs pre and post transplant! It is ridiculous to say that you are 'rubbing people's faces in it' now you're feeling so much better and have a new zest for life. It is a tribute to your donor that you are doing all that you are now, and you are also raising so much awareness of organ donation and for CF. I know several people who signed the organ donation register after watching your documentary. I guess what I really wanted to say is that keep on going girl! You are an inspiration and your story gives me hope, I'm sure that it gives many others hope too.
    Sam x

    ReplyDelete
    Replies
    1. Lovely words of support for Kirsty, Sam. I am sorry you are in such dire straits and hope that the tide turns and you get to live a lot longer and enjoy some times with the people you love. I wish you all that you wish yourself, God Bless, Kelvin(bubbly on BRUS)

      Delete
  11. Kirstie, I really hope you don't get any more nasty comments on facebook.,
    I also can't understand how soneone could be so nasty to someone as nice as you.

    Harry W

    ReplyDelete
  12. Kirstie, easy to say hard to do.These people who posted such awful statements are to be pitied and you should not answer these imbeciles again as to argue your point with them lends credence to their arguments ( in their own peanut sized minds ) You are an inspiration and just by living out your life as you are is pulling many people out of the depths of depression, if one person is filled with hope your story will have been worth being put in the publics eye. I imagine that you have helped many thousands of people who were giving up hope, in addition you have raised much needed funds and lastly but by no means the least, you alone, have made people think about donation and indeed have given of your time freely to sign up personally hundreds (if not thousands).These basket cases need to realise that you have not been handed life on a plate but that you will have to work at making this a really wonderful miracle. I fail to see what they expect from you in mentioning the donor, all comments you have made about the donor have been full of respect, love and undying gratitude. So bless you, try not to be affected by a miniscule minority who are obviously very sick people. Love and Hugs, Kelvin (bubbly on BRUS)

    ReplyDelete
  13. My first instinct Kirstie is to just tell the poster to fuck off and not let them get to you. Seriously. It's not worth it and you don't need to justify yourself in any way or form.

    And my second instinct is to say that remember there are trolls otu there who will just post random comments to wind people out. They are nasty sick people and the best thing you can do is block them.

    Oh and if the troll is reading this, from me to you, fuck off and do something productive with your life.

    ReplyDelete
  14. This kind of bullying is faceless and gutless.

    Don't waste any of your precious life on sad f-ed up people who don't count.

    ReplyDelete
  15. I didn't see the comments but iv'e followed your blogg for a couple of years.Please don't waste your time on sick people who have nothing better to do than try wind others up.Hopefully the karma train will be on its way!!! Keep doing what your doing hun cos your amazing xxx

    ReplyDelete
  16. The older I get the less I understand some people. Just ignore them Kirstie, everyone with half a brain (even me ;-)) knows just how ill you were and just how inspiring your story is and how important the organ donation message is. xxx

    ReplyDelete
  17. Kirstie,
    Don't let negative people get to you. Your story is an encouraging reminder to anyone that we should live everyday to it's fullest and to not let sickness get us down. Thank you for sharing your journey!

    ReplyDelete
  18. Kirstie - keep doing what you are doing - don't let anyone stop you! - you are truly amazing! I am going to pass the info about your blog to my daughter - her brave and courageous husband had a lung transplant due to CF a year ago last October. Sadly, he got an infection and passed away 6 months ago today but he was truly overwhelmed by being able to breathe normally and not have to drag the oxygen around anymore. I wish he could have had longer.
    What an encouragement to read about you - I am sure you are helping so many people with your amazing story and courage - probably more than you know. Good luck and good health to you my dear!!!

    ReplyDelete
  19. Hi Kirstie - I've been following your blog since it was linked through Rachy's. I had no idea you did a documentary and I'm watching it on TLC now! (American station)
    Hugs,

    Jodie from Canada

    ReplyDelete
  20. Kristi... Don't listen to ignorant people. They simply do not understand your situation completely. Fortunately, and unforturnately, I do. My mother had a lung transplant in 1998 and I am very much aware of the effects of transplantation and ongoing complications. I also understand the great need to give back. After my mom's transplant, I did volunteer work for a donor awareness program, made monetary donations to the University Hospital where she had a her transplant and even donated plants and gift baskets to patients and their families waiting for transplants. I have to say, watching your story on TLC last night left me feeling overjoyed and sad at the same time. You are simply amazing. Your spirit is incredible. I do understand the obstacles you have and will be given but also know that your will and determination will allow you to prevail. You are an inspiration. I am so glad I watched the program. Best wishes to you and thanks for sharing your story.

    Chris from U.S.

    ReplyDelete
  21. you deserve all the happiness, attention, love, joy, ... I think you are a superstar and you should enjoy all the positive, happy things that are happening in your life... don't worry about people that don't mean well.
    annabelle

    ReplyDelete
  22. I follow Sharlie's Angels on FB and have just found the link to your blog. How anyone can say such things is beyond me. If they have nothing nice to say then they should say nothing. My great niece was born with CF she is the first in our family to have it so it was quite a shock at first. Keep up the good work there are many many more people who need help. Linda

    ReplyDelete
  23. I have one word to say about anyone who would say anything negative about you ... JEALOUS ... And that is simply it. Why people would be jealous of someone who has suffered so much in life, I can't even comprehend. But if its CF they want, to make themselves look good, then they are people who have something seriously wrong in their heads. Disgusting behavior, don't you dare ever listen to people like that. I know how easy it is to look at yourself and wonder if they have a point, but they DON'T. Full stop. Keep up the good work honey, your an inspiration! x

    ReplyDelete
  24. Great post you done really great job I am waiting to read more coming from up. Thanks for shearing keep blogging!

    ReplyDelete
  25. Dont let the trolls get to you... they are not right in the head.
    Your story is inspiring and needs to be told. I love to read stories like yours so please keep up the great work!

    I'm approaching 40 this year, with pretty bad cf. My Fev1's are down to around 25-30%, but I still hold down a full time job just about. I had testicular cancer on top of cf back in 2006. But got it sorted. The docs had been talking about submitting me for a tx back in 2001 but i had kept putting it off. Then when I got the cancer in 2006 they said that I wouldnt qualify for a tx. Now im almost out of remission I can be considered again.

    I've had FEV's around 30% for a long time now, seems nothing can reverse it. So i may start to go down that transplant road - but Im trying to delay it if possible, not sure why, but I keep putting it off another year. I hear stories about long waiting lists, so your work in raising awareness is fantastic.

    I stumbled across this site as I was reading up on transplants on the internet and I was just so shocked to read about the negative comments that I had to leave a comment. Please try to ignore such people and be stronger than them, they obviously have issues and are trying to knock your positive energy down to their level. Keep at it!

    ReplyDelete