Wednesday, 18 March 2015

Random acts of kindness

I decided to keep going with my #40actsof kindness blog because it got a good response last time and I want to encourage others to try it! Do something generous today, I promise you'll get back more than you give out. 

11) Gave out lots of hugs, took more biscuits for my classmates, and ran after a lady who dropped her babies hat.

12) Offered someone my seat on the train.

13) picked out some special friendship quotes that fitted my closest friends and text them to them :) 
14) I sent a card to my friends little boy who is lovely! 
15) I sent another card to a couple of friends in hospital.
16) I drew a special birthday card for a friend.
17)I bought an Easter egg for a local appeal.

18) I wrote to a young cf lad to try and encourage him to stick to his meds routine and to eat which is always hard when you feel so poorly

19) I have a few friends going through hard times, so I've been trying to support them and let them know I'm here to help if I can.

20) I bought some 'just because' presents for people today.

21)After my clinic visit I  bought my mum an ice cream from @ScoopGelato.

22) literally cannot remember this one but I definitely did one! 

23) Missed my good deed for the day so I will make it up when I can.

24) Today I've donated to Comic relief. 

25) today I took these cakes for my special Irish girl ;) gave out a lot of hugs, and bought some comfort food for a friend who's having a tough time. I also received an RAK from the wonderful Roberta Pudney and her lovely girls. 

26) Mother's Day, so snuck down in the early hours to hang some best mum bunting ;) went to stay with my friend Gemma and her beautiful baby Louis, I bought a couple of little gifts with me.

27) I helped cook 1 meal, and made another myself for baby Louis so his lovely mummy could freeze them in portions. 

28)Was up for another scan at my hospital and sent a little care package up to a friend who's staying on the ward.

29) Mummy Tremlett's birthday today so I made her her favourite berry pavlova :) 

I would LOVE to hear if you do a random act of kindness, comment and let me know :) 

Friday, 27 February 2015

Give a little love!!!!

Ok so I'm not really religious, and I don't usually give up anything for lent. But this year I heard about an idea which I've kind of adapted for myself. Basically instead of giving up for Lent, you give OUT in the form of giving to others. This is something I feel really passionate about. I've been in some very bad situations in my life, it's been tough, and scary and horrible and exhausting and some days it still is; but there have always been people who have given an act of kindness at those times to let me know I'm not alone. I've been very lucky and have already taken steps this year to start giving back but this was a more official route. There is so much hatred and sadness every time you turn on the news, why can't we all in our own small ways make people's lives better each day? It really doesn't take much.For me, a chat with a nurse while I'm in for treatment makes me feel loved and welcomed, someone pulling out a mat for me in drama class because I'm knackered means tonnes because someone cares, a hug, kind words, being polite, a lovely text, a little card (post in particular makes my day!). All cheer me up. Most of these things are free or less than a couple of pounds. Anyway here are my last 9 days of RAK's random acts of kindness, I hope they inspire you. 

1)  donated to charity and held the door open for someone who struggled to walk.
2) bought my mum some flowers and gave money to someone collecting for charity
3) sent some pretty cards to friends who needed cheering up.

4) took homemade cookies for my drama group
5) treated my doggy to a new chew and donated to comic relief.
6) I bought tea and a brownie for a homeless guy on a freezing miserable day. By far my favourite so far.
7) I forgave the dog for scratching me, made my nephew his favourite cheesecake and bought him and his sister some sweets.
8) signed my dad up to eBay and PayPal.
9) said thank you to someone who has helped me with flowers, cookies and a card.
10) today I am donating to a friends just giving page and due to popular demand from Facebook I am being kind to myself while I'm not feeling so good watching a film and having a bit of a rest. Being a bit kinder to myself keeps coming up so maybe I'll incorporate it a bit more despite feeling it's a bit of a cop out ;) 

 This sounds kind of corny but, as someone who has been there, when you look back on your life at the end you will be happy to know you made a difference, it's what will matter. You will also remember those who stuck by and were kind to you. So let's all make the world a little nicer, do something nice for someone today, it doesn't have to cost you but make someone smile!  Xxxxx

Monday, 16 February 2015

The future?

I haven't really known what to post here. I wasn't sure if I wanted to talk about myself particularly because it feels strange no after transplant. I am incredibly grateful for my second chance and there isn't a day that goes past where I don't thank my donor for giving me this extra time. I also know that there are many people who weren't so lucky. Either they didn't get the chance at a new life or things went badly for them, or they are experiencing serious bumps in the road. 

So in a way I feel that if I post about negative points post transplant I will be doing others a disservice, will appear ungrateful or would dissapoint others. But this blog was always supposed to be honest and if I can't be honest there is literally no point writing. Also I have recently realised that by sharing negative as well as positive times doesn't diminish a gift that even if no one else believes me, I am eternally thankful for, neither does it diminish other people's struggles. 

At the moment I'm having some bumps in the road. As I have mentioned before I have a virus Epstein Barr virus that is related to glandular fever. Because I am immunosuppressed I will never be rid of it and the level in my blood will jump up and down randomly. Unfortunately this makes me feel pretty bloody awful. If you have had glandular fever you will know the crippling fatigue that comes with it, imagine that this just randomly hits you for weeks or months at a time for the rest of your life and that's what it's like right now. Recently the level doubled in a week and was the highest I've experienced. It's been a scary time not feeling well and not knowing what's been going on. My hospital were awesome and got me an emergency appointment to check me over. I spent time with my consultant who was amazing taking time to reassure me. As a result of high levels of EBV you become at higher risk of developing lymphoma, which is also pretty scary. So I've been placed on a drug, not specifically for EBV but which might help, there is very little that can help with this particular virus. I'm also getting a Ct scan to check for anything untoward. 

I'm not done yet though. I have low iron levels so just got an iron infusion to hopefully boost those up. Constant headaches have been revealed to be the result of severe sinus disease so I have also been referred to ENT clinic to get that investigated, it could also mean a sinus surgery at some point. 

Side effects from iron and virus meds are making me feel even worse. I can nap and sleep all night and still be exhausted in the morning. I have tonnes of headaches, stomach aches, joint pain, muscle weakness, nausea, and this bloody uplifting fatigue that makes me want to shut out the whole world and just hibernate. 
I want to maintain a life. But it's very hard to balance this and the fatigue. I miss friends, book stuff in, cancel it, get down from being stuck inside. It's really hard physically and mentally. I do a drama course on a Saturday and it's been unbelievably hard to get to it, the people are amazing, the tutors are fantastic and I adore it but it's hard too. Drama, singing etc is what I've always wanted to do with my life. It's kept me going through some god awful times. But even now on the other side of those times it still seems like a dream that won't ever come true. Not because of la k of persistence, effort, etc but because my body and energy is letting me down again. I know people who work, study, live independently post transplant and I feel a world away. I couldn't work or study full time, I definitely couldn't run a home. Im still reliant on my mum despite not wanting to be. It is very hard. The life you see opening up before you is limited and worse than that limited by the body that's always caused you problems. You hope that this is behind you now. I also feel a need to do what I can while I can. There are examples all around me of lives cut short or broken by illness. You are always aware this could happen to you. 

It's a really tricky road and hard to navigate some times. It's great to have a drive within you, it's what's for me this far, but does it become a bad thing when you are thwarted by something maybe you can't overcome? 
I hope I don't offend anyone with this post it wasn't intended to. I just need to vent some of these feelings in the hope it might help. 

Tuesday, 6 January 2015

There but for the grace of God go I

Being a member of the cystic fibrosis and transplant community is a huge honour, to know incredible people, to follow their journey's, sorrows and joys, share in triumphs and have a degree of understanding that no one else who haven't experienced these things possibly can. CF sufferers aren't able to meet much face to face as they can cross infect each other with dangerous bugs so relationships are formed online and become just as strong to us (if not stronger) as people who see each other physically on a regular basis. They are supportive, caring and have created some beautiful friendships.
 There is a black side to this though. You see a lot of friends suffer, battle and die. It's a risk of making such friendships but makes it no easier to handle. I will be 28 this year and off the top of my head I've lost at least 9 good friends plus a lot of faces and names that while not talking so often to you still follow their journey and stories and it still hurts to hear that they have passed.

I think the common misconception is that you expect it to a certain extent when dealing with serious illness, that friendships online can't be THAT close, that you somehow get used to it. But you don't. It hurts, a lot and aside from the loss of a wonderful person, it makes you fear for your other friends and for yourself. It is a shock reminder of what a tightrope CF and transplant are, one slip is all it takes before things tumble away and that is bloody terrifying.

Recently the world has lost two bright souls. Sinead, a lady I didn't know until last year when she got in touch and asked me some advice as she had been having biopsies because of EBV, the virus I have that gives you a greater chance of developing lymphoma. I was lucky that my biopsy came back clear, sinead was not so lucky and was diagnosed with post transplant lymphoma. A lymphoma which is surprisingly common because of our harsh immunosuppressants. Sinead regularly contacted me asking how I was, what I was up to. She was caring, friendly and truly grateful for the time her transplant had allowed her. I was gutted to hear that just before Christmas she lost her battle. She was a lovely, kind, generous woman who in her last message had simply said that she "was finding things tough".
We also lost a major member of the transplant community, Emily Thackray. You may have heard of her as she campaigned for CF and transplant awareness with a fiery passion. She did tonnes of media work and with her friend set up transplant charity LLTGL. Emily was everyone's friend. A pink and sparkly force to be reckoned with. I followed her blog and journey before I knew I needed a transplant. Her blog inspired me to start this one.she had some bloody hard times, I met her in hospital when she was very sick, I can remember her walking slowly waving to me in a sparkly pink glory. She always had a smile for you and supported everyone. She got her transplant 8 years ago and it was a privilege to watch her recover and get stronger, to see her journey progress as I started my own. Later Emily visited me a couple of times for LLTGL work while I waited for my transplant. She was also one of my first visitors after transplant assuring me it would get easier when she knew I was struggling through a hard recovery. Emily used every minute of her time supporting, helping, caring loving others and making the most of her amazing gift. She got married bought a house, worked as a teacher, and recently thanks to a surrogate became a mummy to a beautiful girl called Sophia. It broke my heart to see her struggle in the last few months with pneumonia, see her improve then plummet again. She received a second transplant but this is an even more difficult operation second time around with many possible complications and recovery longer than the first. Unfortunately these complications became too much and the woman who was so bright, resilient and beautiful passed away. It was only then that you realise the extent of how many lives she truly touched, there were so many amazing stories. She will be greatly missed.

These weren't just online profiles, they were people, brave, caring wonderful people. People I called friends as did many others and they are missed and grieved as friends are.

Being around lives that hang in the balance whether when Ill or waiting for transplant or post transplant is a strange experience. It's uplifting, inspiring, wonderful, difficult, frightening and heart breaking. There is definitely a sense of worry and "there but for the grace of God go I". There's also the stories that inspire and you hope will live on with friends when you are gone. For me it certainly reminds me to live as much as I can, to try and make people happy and do good deeds when I can, and makes me value those who support me. Unlike some I know, I tell people a lot more how I feel for them, I let them know they are loved, or that I appreciate their friendship or value them. And if the one thing my wise friends leave behind its that gift.

Friday, 14 November 2014

The great debate.

Ok so I'm still just getting back into blogging again so I'm easing myself in gently (or not as the case may be!) without talking about my life specifically. A couple of weeks ago my friend Carla and I were featured in the Daily Mail in a debate about Organ Donation and the opt in or opt out situation.
Obviously because its for a paper, they needed to add a bit of drama to it so we were pitched arguing opposing sides, Carla opt in and myself opt out. Read it here

Now in reality I do support opt out, but the thing I support most is organ donation. Whether its opt in, opt out, or whatever I want to see more people getting the organs they so desperately need, not losing my friends who haven't been as lucky as I am and generally more results because I know personally how transplants can save and transform lives.

I feel I need to clarify and go into more detail than the article was able to cover. So yes for the sake of the article I had to state one way or other and sitting on the fence wasn't an option. The truth is as I said above to get more awareness of organ donation and more successful transplants. I think there are a lot of misconceptions about the opt out system which despite touching on in the piece you can see didn't get through to readers based purely on the comments section of the article.

The opt out system is still a CHOICE is the first thing I want people to realise. As the name says you can opt out. So if you have strong feelings about not being a donor for whatever reason, or you only want certain organs taken then you still have that choice. No one is taking that away from you or governing your body by the state. In this respect you have as much of a choice as you do with the opt in system.

Point number 2 is that there are problems with both systems. For an opt out system to work we would need to massively invest in the system. It would need funding for education, to make sure everyone understood the way it worked, that they could opt out, how to do that and to reassure everyone that their wishes were respected. It would also need huge investment into the infrastructure of transplantation, if you are suddenly carrying out more transplants you will need; hospital beds to accommodate patients, more ITU beds, More ITU staff (nurses doctors, anestetists, surgeons, etc), you would need more specialist transplant consultants and bigger transplant clinics, more drug production, physios rehab etc. to name just the tip of the iceburg. If opt out was introduced without these measures then it would wholeheartedly fail.

However our current opt in system also has faults. Apathy being the main one, the people I meet that just haven't got around to signing up are huge believe it or not. Why would you think about it when you aren't effected by it? Death is a taboo, people worry they wont be saved if they are donors, that the hospital staff might not treat them as well, that they just aren't sure what they want after their death, that talking about it might make the worst happen. It's sad but true and completely understandable. But being involved in the transplant world for so long shows that the information to settle your mind is out there if you want to look for it. I was talking to someone the other day and we were saying that it is your last wish that can be fulfilled by your family. To give (or not) your organs is your final decision, which should be made clearly by you. Sadly in most cases your family will decide this for you. Most people don't know that currently your family can over ride your decision about organ donation. So if they don't know that you wanted your organs to be donated and are on the organ donor list, they are able to say no when asked. That is a loss to others and to you as no one should make that decision but you. Therefore it is so so important that you make your own decision and then let your family know what you want.

We need donors, so many lives have been lost this year because of the lack of donors and so many lives are on hold waiting for that call that can change their world. Neither the opt out or opt in systems are perfect and for the record I do believe that right now we have the best system in place for where we are, we just aren't ready to commit to what opt out needs yet. However what also strikes me is that we need more education, awareness, discussion. If the article I did can that and get people thinking about their wishes and even possibly signing up then that is the absolute best I can hope for.

Its also part of the reason I wanted to start this blog again, to keep campaigning, spreading the word and showing what life after transplant is like. You never know what a difference it can make.

Tuesday, 11 November 2014

So, what would you like to know?

So haven't written on this blog for nearly a year. My blog for a long time was a real life line to me, somewhere to vent, cathartic to write, educating and awareness raising, something I could do when I  everything was falling apart for me. I made friends, helped others going through transplant and shared in peoples lives all of which was surprisingly unexpected but wonderful.

Then after transplant, it got harder to write, I wasn't in a good place and didn't want people to think I wasn't absurdly grateful for my precious gift but at the same time, it was a huge, frightening, all encompassing change which is still full of problems and challenges but without someones generosity I wouldn't be here to even contemplate these issues. So for a long time I didn't feel able to write.

But lately I think that maybe I still have something to say. And maybe you still want to listen. Anyway I'm going to try and start blogging again. About life now, after transplant, the good, the bad and the ugly. There is  a shocking lack of knowledge about life post transplant which is often seen as a magic cure, which it isn't if I'm brutally honest.

So I would like to know any topics, questions, issues you'd like to see spoken about here. I can only speak from my experiences but would love to write again (I've missed you) and want to address things you'd like to know.

So bombard me, there is no question to embarrassing or stupid! xxx

Tuesday, 31 December 2013

2013 and beyond!

Shocking lack of blogging from once again, BUT I couldn't not write you all before the start of a new year.

I hope you all had a very happy Christmas, ours was different, hectic, and above all lovely! Whatever you did or how (if) you celebrated I hope you were surrounded by the ones you love.

I'm not quite sure how to wrap up 2013, when I think about it I went in with pretty average expectations and a few highlights to look forward to, but it ended up shaping up as a very important, wonderful, year. I finally, finally graduated, gained a first which I never thought possible and made the walk in my cap and gown that I had waited so many years for but never expected to do. I had an incredible weeks work experience on Les Miserables which was one of the most joyful experiences of my life, I cannot describe what it meant to me to be there that week with so many, happy, kind, welcoming faces who loved the show and theatre as much as I do. I went on my first holiday alone to Euro Disney for my transplant anniversary (more updates about this next time) a huge confidence boost for me. I have really improved with my cake skills and grown a small business of my own. I've made many trips to London widening my net and again building more confidence than I've ever had travelling, its still hard a lot of the time but I'm doing it. There have been hugs, days out, time spent with my family, I've drunk numerous teas, cocktails, eaten and cooked some yummy food, met some great people and had a life I can actually live. I've done more awareness work and hopefully will get more opportunities in the future as it's something I love. Some things have worked out differently than I expected and some paths have had to change but that's not necessarily a bad thing. Even me who likes to control everything sometimes has to change, but so long as its the road leading to where I want to go, who cares?

I have met lots of new people: some acquaintances, some new friendships and some friendships that I think will last the distance. A lot of relationship's have changed, some have ended, some that were rocky have improved we shall see what becomes of them, some people have stepped up and been there when I've needed them and some have fallen to the background, some I need to try harder to build on in the new year and I think I have met some truly special friends. The most important thing is I'm less stressed about them now, if it's meant to be it's meant to be, what's important are the memories we make along the way.

In other ways it has been a very hard year in some ways. I was finally able to admit that I've been suffering with depression and high anxiety, I hope that this will be made easier for me to cope with next year so I can enjoy my life the way a truly want to. A huge tragedy has been the losses we've experienced in the transplant community. It may sound silly to some people, that most of the interactions I've had with these people have been  online however as I'm many others will testify, this doesn't make the connection any less. It's hard to hear of someone struggling and passing away, knowing you'll never text or tweet them again, knowing you'll never chat or nod to them at clinic. It's also hard to see the negative side of organ donation and the problems that can develop, knowing one day they will effect all of us. These people are so many to mention so apologies to those who aren't named, Josh, who I met in hospital and came to reassure me about a procedure I was having, Nicola, who loved her family and helped so many other transplant patients with her charity work, Josie, who always had a beautiful smile and kind words in clinic, Gareth, the brother and son of a wonderfully kind, caring family, Katie, Clare and Gerard who all played a big part in the CF community.

Another wonderful lady. Melanie also lost her fight with cancer this week. I met her once this year which I am so incredibly grateful for, but we kept in regular contact via email. She was a brave, beautiful, caring, smiley, lovely lady with a real zest for life. She fought bravely and always made time for others, she was the wig mistress on Les Mis and although off work arranged for me to go and see her "wiggie" friends, my best moment while there. That was her, always thinking of others and that was shown in the outpouring of love towards her and her family. They have all played parts in many people's lives, more than they probably imagined. Like the others in past years, Jen, Jess, Sam, Robyn, Nick, Sarah, Portia, Rachael, Craig, Paul and the many others, they will never, ever be forgotten.

I have struggled a lot with so many losses and found it hard to cope or understand the senseless of it. Sometimes I have wondered if would have been better of saving myself the hurt and never meeting them but that would be completely disrespectful and unfair to all those little interactions that in the grand scheme seem nothing but really meant something to me, I wouldn't give those up. Someone told me that while we are still here we have to shine the light for those that aren't, its very true. So while remembering them I will try to keep putting happiness and kindness into the world on their behalf.  After all one person can change so many lives, look what my donor did for me.

I've been quite scared for 2014, 2013 was a hard one to top. But I was sitting here last year worrying about the same thing. I think I've learnt (to some extent, I'm a stubborn lass) that you can't pre-empt the good things that come our way, they are usually hiding round the corner when you least expect it. My transplant definitely taught me among other things that its the little things that mean the most; a cool drink of water on a dry mouth, being able to walk around freely, the amazing feeling of a hot shower, the taste of your favourite food, the comfort of your own bed and the hug from someone you love. Enjoy them, because if they disappeared I guarantee that these would be the things you'd crave.

Anyway enough waffling, what I'm trying to say is,  I hope you all have a fantastic new year celebration whatever you're doing, and that the new year brings you happiness and health thank you for your incredible support this year, I am eternally grateful. Goodbye awesome 2013 and thanks for the great times and memories. 2014 let's see what you've got!

Last word as always goes to the indescribably kind, wonderful, generous, incredible, beautiful, person and their family who gave me this unbelievable gift of seeing this year, I can never thank you enough but I will try to make you proud.
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