Kirstie Mills is a Life Life the Give Life Ambassador. She is 21 and has Cystic Fibrosis “She is in desperate need of a double lung transplant and declining rapidly. Doctors told her last month that she has approximately six months left to live without one.”-lltgl
Thursday the 6th June saw Kirstie fulfill her dream to marry her fiance Stu.
Many congratulations to you both and my thoughts and prayers are with you in the hope you get your transplant and a chance of a well deserved happy life together! Click here for video Click here for Kirstie’s Blog
So after a few false starts, fingers crossed I will have the opportunity along with my friend Dessie to raise money for Kidney Research UK. We are taking part in the London Bridges Walk and trying to raise money and awareness for the charity along with 100’s of others on the day I hope!
The walk takes place on the 10th July and incorporates 8 of London’s bridges over about 7 miles.
With me (touch wood) running on a fairly even keel at the moment and with my friend there to help hopefully it should be a great day out!
Thank you Mr Lennon for the title quote. A comment that strikes a particular chord with me.
I’ve spent a lot of time either putting off plans until I’m lucky enough to have a transplant, or making tentative plans for after I’ve been lucky enough to have a transplant. The truth is though that life is passing by while I have refused to make or carry out plans for the short and medium term.
And somewhere along the way I’ve started to lose my sense of humour as well – something I need to remedy! So its settled, I’m going to be a famous photographer, musician and swimming athlete after my transplant, though granted probably not all at the same time…. Now what to do in the meantime?!
I’m hoping to move shortly to a place of my own, a little piece of imaginary independence, quite important to all of us as we get older! And employment? Well I’m still looking, still applying, still waiting, ever hopeful! I did stop long enough to evaluate what would be my perfect job if everything was hunkydory which was basically to use the skills I have gained over 35 years to try and help others. Ideally photography would be in the mix somewhere, although if necessary it would be a way of bringing in a little extra spending money in my spare time. So to that effect I’ve started homing in on the areas of employment that are aimed at helping people, typically called the Third Sector in this country, somewhere in-between the Public and Private Sector, where both private and public donations are used to fund improvements to the lives of those of us not so fortunate.
Live Life Then Give Life
Those of you of a healthy disposition I beg to spend ten minutes looking at this link: LLTGL Life Stories.
Even those of you without a healthy disposition! After finding out that I could myself donate my organs should the worst happen I joined the donor register online. Apparently 3 people die every day in the UK while waiting for a transplant…
If you’re feeling particularly keen about raising awareness as I am, I can recommend the T shirt which can be ordered from the following page: Clicky
I’ve certainly turned a few heads walking around town wearing one!
Finally a special thank you to a special someone.
I wont deny that the last few months have been challenging in the extreme. My parents business struggling, my low self-esteem, a couple of health scares, worry over my transplant assessment, depression over dialysis and general loneliness to mention a few (crikey what a whinge!)
Somewhere along the line someone broke down my carefully placed barriers, got inside, put an arm around me and somehow kept me afloat, that special someone means the world to me.
I wish things could be different so you could always keep me afloat, and I wish you could see for yourself how special you are, but alas you’re destined to make some other git happy!
I on the other hand will have to keep on looking for “Someone Like You” 😉
I bought this book on the recommendation of a fellow renal patient on the Kidney Patients Forum, and I have to say it is an inspirational work. The author Carla Ulbrich, known as “The Singing Patient” was diagnosed with an auto-immune disease and amoungst other complications suffered from Kidney Failure. Her anecdotes and short stories together with some of her lyrics and poems make very positive reading and is full of sound advice for people living with chronic illness.
Well I had my assessment and they seem very happy with me, So I remain active on the waiting list – Woohoo!
In the meantime I will continue to try and lose weight and increase my fitness, and try and remain positive!
Firstly apologies for no updates for so long. Life has been….interesting!
So we’ve brought a New Year in, bringing with it a realization that I’ve been on my own now for nearly a decade! Sad to think that for one reason or another but mainly to do with health and self image I have taken myself off the market for so long. Seems like the blink of an eye! One thing I have promised this year is that I’m not going to be so hard on myself, it is after all not my fault that I have renal failure and have had since the early nineties, people can either accept that or not – I no longer care.
Hi Ho It’s off to work I go…or not It was about November last year after our beloved new government set out plans to reform the benefits system and get people back to work that I decided that I would like to at least try and get back into work. I have no idea if I will cope or not but I will be letting myself down if I didn’t give it a try. After a few failed applications I wrote to my MP asking for advice for someone like me. Someone with a life threatening illness who has been out of work for a long while. She kindly wrote back suggesting the Shaw Trust and wishing me luck. The Trust specializes in getting people on Incapacity benefit and people out of work long term back into employment and can supply training to that effect. Apparently.
I signed up to the Trust on the Pathways to Work Scheme only to find on my second visit that they were having their funding pulled and my adviser had been given her redundancy! No training will be available and as of the end of March I will be signed off from them. Bloody Marvelous.
So I’m on my own again trying to apply for work in a time where every job is hotly competed for!
To Date or Not to Date….
Now back to dating briefly! I have been experimenting with dating sites and actually managed to arrange a date with someone recently. There were a few obstacles, such as I live in Norfolk and she lives in London…. but I thought to hell with it lets give it a go! I caught the train down to Kings Cross where I met up with my date. We seemed to hit it off quite quickly and went to the Natural History Museum and saw the Wildlife Photographer of the year exhibition, then on to the Victoria and Albert Museum. I have to say it was a very enjoyable day but it turned out my date had some very serious issues of her own which when I was brutally honest with myself made me come to the realization that added to my messed up life it would be too much for either of us to take on. If you ever read this Beena, then I apologize and hope you understand…!
Unfortunately the offer I had on that site has expired and I cant afford to continue with it, which is a shame because it was a format that I quite got on with. Ah well! Will have to stick to the free ones!
Swimming and Gymming..!
I made a sort of New Years Resolution with a difference this year. Normally I don’t do resolutions but rather do something when I feel like it, but this year I have decided to try and get my weight down and be as active as my body will let me. I go to the gym 2 to 3 times a week now and swim 2 to 3 times a week. Now, when I talk about the gym, I’m actually on strict orders to do only light to moderate exercise so to a normal person it probably seems totally unworthwhile, but I have lost a lot of weight and have to say feel better in myself. All the machines I use are set to their easiest level but it still puts my pulse rate up high! I may have mentioned it earlier but although dialysis is a very effective treatment for kidney failure, it does take it out of you and can lead to muscle loss, the heart being the most important muscle! So it make sense to eat a good diet and exercise as best you can.
This Tuesday I have a Transplant Assessment at Addenbrookes to see if I am still a suitable candidate for a transplant. I am hoping they will be happy with me and that my ECG and chest x-ray don’t throw up any nasty suprises….