I usually like to keep this blog positive and upbeat but I am warning you now this will be far from that... in fact it will probably turn into a bit of a moan, but I am hoping it will help me, and maybe some people out there understand a bit better!
Ok so the downsides to campaigning....
- It's stressful
- Things don't always go your way
- Other things move down your list of priorities - I didn't have much me time when the filming took place
- Putting yourself out there in the public domain is not always a good thing
- People don't always agree with what you are doing
- People aren't worried about criticising you personally or your family
Ok so the last one on this list has been bugging me quite a lot recently...
I have had some comments on my Battlefront page which have been negative and in fact hurtful... someone even went far enough to say that they would be disgusted if I had received their sons Kidney when he died. Other comments included that I shouldn't be misleading people about my campaign saying that it is a happy ending when its not, then there are people saying I am obese, and then criticisms of my family for not donating their kidney to me. All of which cheered me up no-end as you can imagine!
So I don't feel the need to explain myself, as someone very close to me would say "This is my life and I choose to love it!" but I am going to explain a bit more about my kidney transplant in the hope it will answer some of the queries above. In simple terms...
Yes, I have had a kidney transplant
No, this isn't a cure
Yes, I will always have Kidney disease
Yes, I will probably need to go on dialysis again in the future
Yes, If I am lucky I may receive another transplant.
Yes, My parents both got tested to become donors for me, they weren't suitable due to medical reasons
Yes, the anti-rejection tablets do have side effects
Yes, I suffer with some side effects...
I am loosing some of my hair (it is getting thinner by the day)
I often get shaky hands
I get burning sensations in my hands and feet
I sometimes have night sweats
I still can't walk a great distances as one of the tablets I am on causes my knee to swell
I have a moonface - due to the steroids
The anti rejection drugs mean I am at a higher risk of cancer - specifically skin cancer.
Yes, I have put on weight - I am the first to admit this
Yes, this is not all down to the steroids - But they do play a part.
Yes, I have been over indulging, but wouldn't you if you had to stick to a strict renal diet for four years?
No, I don't intend to do this forever.
Yes, I intend to get fit and eat more healthily, not because of the nasty comments, but for me and the longevity of my kidney!
No, I have never been, and never will be stick thin... DEAL WITH IT
Yes, this kidney transplant has transformed my life and the life of my family
Yes, I think this is a happy ending, I am the happiest I have been in ages - I am grateful for every single day I have been given off dialysis, even if the transplant only lasts a few years.
No, I don't intend to dwell on this any longer than it takes me to write this blog
Yes, The side effects of the tablets are a small price to pay for a happy and healthy future free from dialysis and the restrictions that come with it.
Some peoples comments do put doubts in my mind about whether I am doing the right thing putting my self out there for criticism, but I passionately believe in this cause and I am not going to let it stop me.
This is my second chance, I am going to live life to the full, I am determined to use my new found freedom to raise awareness of Organ Donation, the need for more organ donors and promote the plight of the people still on the transplant waiting list...
Tomorrows blog will be a more postivie one, I promise.... I intend to make it a complete opposite one to this one...
The benefits of transplantation and the positive aspects of campaigning... of which I can assure you there are many!