Glowing Report!

I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.

So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.

Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!

So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!

I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!

Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!

Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.

Transplant Programme

There was an excellent programme on last night about organ donation. It showed the points of view from the family of the donor, a 65 year old lady and the recipients who received her heart, liver and kidneys. I thought it was put together very well and explained the process great, it also showed how the donor is treated with respect and how important it is to let your family know of your wishes as it is them who have the final say.

It made me feel honoured to know people who have been part of this journey and how many people are involved to try and help save a persons life. It made me realise how difficult it is for the families who agree for their loved ones organs to be donated, but also how proud they felt when they received a letter telling them how many lives had been saved.

Its not an easy watch, but worth it.

Click here to watch

Jo Was Neglected

Remember Jo?

She passed away last November after finally getting on the transplant list. Well it turns out the reason she died is because the medical staff did not look after her properly when she was admitted to hospital with suspected Meningococcal Septicaemia.

Words cannot describe how I felt yesterday and today as I have read articles about how she was treated. She didn't deserve this, don't these people realise that they are responsible for peoples lives? She is dead because of their neglect, it makes me sick.

I can't fault the NHS in lots of areas, the CF care I receive is brilliant. However these particular people let Jo down, I just can't believe this is what became of her after all her battles with CF. It makes me scared that I rely on these people, just like Jo did, and in her time of need they didn't help her. It's enough to put you off going to A & E for life.

For some of the articles click here and here

Link to the local News

Honesty the Best Policy?

I have been trying to decide whether to post about this or not as it is very sad and I don't know the people involved very well. Infact I used to read this ladies blog but stopped as I found it too raw and if I am quite honest, scary.

As a person with CF it is very hard to read about the views of someone as they watch the person they love die, particularly when that person is your 7 year old son. It's bad enough knowing I am probably going to die younger than I should do, its worse knowing that my family and friends will be left behind to deal with it but its even worse reading about a family going through this when the said person is only a child and it makes me feel like I am one of the lucky ones. Connor did have other medical problems as well as CF, however his decline I'm sure was similar to that of someone with just CF, because of his other condition he was not able to be listed for a lung transplant. I admit, I stopped reading it, out of sight out of mind.

However today I learnt that Conner has lost his battle with CF and I took the plunge to read the blog entries leading up to his death. Reading about his mother planning his funeral, ordering his casket, she describes how the grim reaper sits on the families shoulder, it's not a nice read atall. Yet I feel I should congratulate her (if that's the right term?!) on her honestly right up until the end. People don't discuss death enough, infact in one of her posts she describes how people started to avoid her as it makes them feel uncomfortable. As I have already said, I stopped reading the blog, I am guilty of what she describes and she doesn't even know me. I admire her for her strength and brutal honesty. I only hope this strength can help her through the next few weeks and months to come.

RIP Conner and may your spirit continue to live through your family

Here is the blog if you would like to have a read - http://notsobrightandshiny.blogspot.com/

Rollarcoaster Week

What a rollarcoaster of a week!

Pete and I have been making some important decisions regarding the surrogacy and I will discuss it on my blog in due time. However I have other things that I feel are more important today.

Firstly, on Friday another CF friend was devastatingly taken from us. Nicola was not on the transplant list but was having a terrible time and had become very ill over the past year or so. I don't really know why, it was very complicated and she didn't talk about it all the time, infact the news of her death was a great shock and even though I didn't know her that well I shed a tear for her. Because it was unexpected (to me anyway) and hit me with a big dose of reality, people with CF can go downhill quicker than you think and it take lives, it doesn't care how lovely, caring and beautiful that person was. It kills them, one minute they are here and you think they will hang in there, they have to - the next minute a family member informs you they are gone. You wish you had realised they were that ill, but then you realise it wouldn't have made a damn bit of difference and abit of normality is probably what they needed to try to keep fighting and feel like they were living and not dying.

Beautiful Nicola - 1983-2010

This sad news has been followed by extremely great news, although to be honest I am very worried at the moment! My favourite girl and best friend Victoria received her 'call' last night and is in theatre as I type getting new lungs! I will be thinking (and worrying) about her day and night until I know she is recovered and on with her new life, please keep her in your thoughts and prayers.

Please also spare a thought for the donor and their family (transplant is always a good news, bad news situation), without their kindness in such a difficult time, Victoria would not be getting this second chance at life.

Victoria doing what she does best ;o)

Jess on the News

A Fighter to the End

I'm very sad to say that Jess who received her transplant between Christmas and New Year has passed away.

This is not the way her Christmas Miracle was supposed to go, yet she was so very poorly and weak, she had waited for her transplant for too long. If she had received it earlier who knows? Not all transplants are successful, it's a risky procedure. However I think that every single time it is still better to at least give someone the chance. Been on the list gives that person hope to continue fighting, a future to look forward to.

Jess was such a fighter, this is a picture from a sponsored walk she did in 2009. Even in her last days she was determined to raise awareness of organ donation. Hopefully her efforts were not in vain. Please click here to join the organ donation register.

I didn't know Jess that well, however I followed her progress and she helped me with my cf presentation last year. She was well known on the cf forums and was a major advocate for the Live Life Then Give Life charity, she will be greatly missed. RIP Jess xx

Christmas Miracle

I hope everyone had a Merry Christmas! I'm still in the middle of Christmas since we are going to see all Pete's family on Wednesday so I am not going to update on Christmas yet.

However I wanted to post a positive story, I just read the news and I am SO happy!

Jess is 20 years old and has been waiting for a lung transplant for 4 years, so since she was 16. (just think of all the teenage years she has missed out on). Her lung function is 9%, she was rushed to A&E before Christmas and spent Christmas in hospital, to be honest I think a lot of us thought she wasn't going to make it and finally lose her battle. Infact I said to Pete the other day I didn't think she had much time left.

I have just read that she has had her lung transplant this morning!!!! Please pray she gets through the first few days as they are going to be hard, she was very, very poorly for the operation and not out of danger yet. Also please spare a thought for the family and friends who have just lost a loved one and agreed to this organ donation, without them Jess would not have this extra chance of life.

Christmas miracles can happen!

Jo's Send Off

On Friday it was Jo's funeral, I wish I could have gone but it was a long way and I couldn't have gone on my own. I said a prayer for her at 11am which was the time of the service. Her friends on the CF forum (including me) put our money together to help give her a good send off. Jo loved cake (she ate a whole Victoria sponge every day to put weight on) and she loved Betty Boop, so here is what we sent her..... She would have loved it! We also sent her some flowers. I really miss her and still can't believe she is not here anymore, it's going to take some getting used toIn other news I have been busy... getting filmed! I'm not going to say anything else as it's not getting aired until Easter time, but watch this space!

Today we have been to look at five bungalows, yes five bungalows! We have seen one we LOVE! So watch this space too!

I'm starting to feel better I think, still getting tired easily and chest is still getting pains but it is starting to feel less tight. I don't think I have lost anymore weight but not put any on either, just keeping it steady now. I keep feeling lightheaded and like I can't see properly which is strange, I think it must be the voriconazole as it can cause visual disturbances. It feels like I'm in a daydream and not in my body, not good at times! I've been to the gym twice this week and walked Alfie so at least I am getting back to the exercising, it always goes on halt when I'm on my IV's as I never have the energy to go.

I am currently watching X Factor, so far I have voted three times for Olly. I knew he'd be in the final! Olly to win!!!! This is the first time I have watched the x-factor final in years, every year I'm always out! Yet another sign I'm getting old....!

Meeting Jo

Well now i am back on the voriconazole the dreams have started already, my days might be boring but nights are certainly livening up!

Last night I had a nice but also sad dream. I dreamt that Jo (my friend who passed away last week) was following me. Remember I have never met Jo so it's abit weird that I would dream about her been an actual person because I don't know how she moved, spoke etc. Anyway I kept seeing her in places that reminded me of her but no-one else could see her. For example Pete and I were watching car racing on TV (Jo liked watching F1 etc) and she was sat on our other sofa laughing at the TV and I asked Pete and he couldn't see her. She was wearing some blue soft jogger type pants, a green top and her face was all pink like she was really healthy. I don't think she said anything to me but she did smile at me. I also saw her when we were in a cake/coffee shop. We were at the till and she was sat down watching us and waved at me when I saw her. I just love dreaming about people you know you can never see again, I used to try dream about my cat Guinness when he died as I just wanted to remember how it felt to stroke him and hear his purr. I did once dream he was on my bed and I could feel his weight and warmth on my feet and I could hear him purring, but then I woke up and went to stroke him and obviously he wasn't there, I was gutted.
I'm writing about this dream because I want to remember it. I feel like I have met Jo now and I don't want to forget how it felt.

I did then go on to have some other crazy dreams that involved me living in a house full of water and slides and we were on some kind of big brother programme. I can't remember it that well but I do recall been interviewed at some point on some very high platform and been really scared as I could fall off!

CF Friends

I realised I never post about my cf friends unless they pass away..... which I don't like! So I'd like to introduce you to some of my living cf friends (and they better stay that way!), I have physically never met any of them due to cross infection rules however talk to them online on a regular basis and I find them very supportive and they probably know more about me than my 'real' mates. I'll show you an example of this, I bet that they all know I am on my IVs at the moment and having a rough time. Whereas my friend who I have known since I was a toddler asked me last night if I had a cold because I was coughing, even though I have told her at least three times in the past two weeks that I am not well and on my IVs and also informed her I am having an extra week of them. She then asked me how long I have IVs for and also kept prodding my arm for me to pass her the drink, I had to remind her my needle was there! She is a lovely friend but you have to laugh...! :o)

Anyway my friends... I have quite alot so if I don't include you I'm sorry with a cherry on top..!

Victoria - She is waiting for a lung transplant, had her 6TH false call on Monday night and is currently in hospital so send her some kisses!

Pete - Is super cool and a great laugh! He is a big fan of Alfie so gets my vote :o)

Chantelle - Is a mummy and she lends me lots of books, shes a very good library! hehe

Megan - likes to talk about spatulas (sorry, an inside joke)

Gemma - party animal !

Emma - Is going to be a mummy in a few weeks!

Jac - Has had a lung transplant and has a tiny cute doggie called Seb, she is also a psychologist which is pretty cool!

Sophie - Recently had to give up work so send her some hugs! I know what a difficult time it can be. She also lost one of her close cf friends today. RIP Anna (it's been a seriously sh!t week)

An Alternative Ending

Once there was a young woman called Jo. She was beautiful, feisty and independent. The trouble was that she was stuck in an ill body that meant she couldn’t do the things she loved and instead felt isolated and an annoyance to her parents that had to help care for her.
Jo’s body was so ill that she needed a lung transplant, however she was underweight and needed to put a lot of weight on. It was difficult and sometimes she thought she would never put the weight on, she felt hopeless at times and had to remind herself of the bright future she could have if she got a new pair of lungs from a kind donor and their family. She would forever be grateful to them because in their time of sadness they would have saved Jo’s life.
Jo finally put the weight on after months of struggling and she was accepted on the list. All she had to do was wait and try to keep positive by thinking of the things she would be able to do free of her oxygen, aches and pains and wheelchair.
She finally got the call however the lungs were not suitable for transplant. This happened a few times. Each time Jo thought ‘this is it, I’m going to have a life’ and every time the lungs were not suitable her heart sank just abit more but she stayed determined at all times.
Eventually after waiting for over a year a pair of lungs were suitable and transplanted into her.
6 weeks later she was home, ready for this new life, quite scared because of all the things she would be able to do that she had never done before but also excited that death and illness would not be on her mind everyday, just the everyday worries like other people!
After a few months she decided to move out and live on her own, something she had never expected to be able to do. It was a challenge as she had always been looked after but it felt great. She couldn’t believe how much energy she had, so much to do and so much time now she had her new lungs!
She decided to start a course at her local college, to make new friends and finally get that education she never got because she was too ill to attend school full time. She met a guy on her course and for the first time fell in love, something she had never had the energy for before plus it’s hard to meet someone when you are at home or in hospital all the time.
Jo relished her new life, she didn’t take anything for granted and wrote to the donor family to thank them for the gift of life they had given her. She felt free, independent in mind and body for a change and purpose to her existence.

This story is the future I would have chosen for Jo. Sadly it will never happen because Jo passed away yesterday morning at 5.30am. She never got her transplant, she was on the transplant list a few months after gaining the weight and will never have the life she dreamt of. I feel useless, there was nothing I could do, I couldn’t even go down and visit her to alleviate some of her loneliness.

Jo I am so sorry you never got the life you deserved.

I am donating the money I usually spend on Christmas cards in memory of Jo this year. Please consider making a donation however small to help see off CF, and if you are not a registered organ donor then please, please register!

Sad News

I am absolutley gutted to have just read that Vicky passed away last night. After been in hospital for over 6 months she finally gave in, is no longer in pain and has gone up to Heaven. She will be joining her fiance who also passed away in 2006 (also due to cf I believe). May they rest in peace together. My thoughts are with her close friends and family, they should be proud of her because she was such a strong and lovely little lady.

Gone Mad!!

Proof that Louis always had to be different!!

http://www.echo-news.co.uk/news/4297383.Teenager_chose_to_donate_his_body_to_professor_s_Body_Worlds_exhibition/

On another note sorry no blog update for a few days, they are usually flying in! Also general lack of communication with the outside world. I have been inspired to start writing my own story, I used to write alot as a child and then have had writers block for around 16 years! I had a fantastic dream on Thursday and have been frantically trying to put it onto paper or should I say onto laptop! It's occupying my mind every minute, its kind of an obsession at the moment. In the meantime I shall leave you with a picture of Alfie on our newly acquired walk which has assisted me greatly with a quest for description in my supposed 'story' that is emerging from my quite daft brain!

PS - do not bother asking me about what the story is, I won't even tell Pete. It's a personal thing.

Happy Easter!

I've been busy so haven't had time to do my blog for a few days and I couldn't be bothered to do it when I wasn't busy, I'm sure you survived! On Thursday I went for my practice hair and make up for the wedding, I thought it looked nice but my mum said she didn't like the lipstick and my make up looked too natural, I also got told I looked pale. Thanks!! I was impressed with my hair, I'm having a big quiff thing going to the side, I was surprised at how much she could do with such short hair!

I had woken up with a terrible headache that morning and it just wouldn't go, I came home and gave Alfie a bath and his fur a trim and then just went to sleep as this headache was evil. It didn't go all day and I went to bed in the end as it was making me feel sick.

Friday we went over to Pete's parents as it was Pete's sisters 18th birthday so we went for a meal and to his parents for awhile. Pete bought his sisters present about 30 minutes before we had to set off, typical man! We also collected some sample invites that this lady has done us for our wedding invites, they are really good so think we are going to get her to do them. They match our colour scheme and are really detailed with flowers and beads etc.

Saturday I was helping at the barber shop and Pete went to see his Grandma which is about a 3 hour journey each way, she is very poorly (and 90 years old) so he is obviously upset and wanted to see her. He didn't get back until early evening so then we watched Terminators 2 & 3! Films where people travel through time just mess with my head because if you change the past you change the future so they would never need to go back in time to change the past but then it wouldn't get changed so then they would need to. ARGH, crazy!! I guess if you are always meddling with the past you don't know what the future is as it constantly changes, they kind of make it out like it was fate and was always going to happen whatever they did. I suppose once someone were to travel back in time it doesn't matter how they change the future because to them it is their past and not their future. I watch Lost as well and that is all about time travel so I think about it on a regular basis! I'll shut up now!!

On a totally separate note and something you probably don't want to know but it's part of having cf so I feel I should share it..., I've had constipation since about Tuesday. I've starting taking loads more Movicols than usual as yesterday my chest started hurting from the pressure and I've been feeling more and more bloated each day. I was quite excited when I finally went to the toilet this morning (haha!) but Pete didn't share my happiness. He just doesn't understand! :o)

Today we went to Church in the morning which was nice. It's the church where we are getting married so it's nice to show our faces and it is Easter afterall. I always get abit emotional though! I was disappointed they didn't explain Easter to us, they told us the story but not the meaning behind it apart from Jesus died to save us (and I only established this through the hymns and prayers). How exactly? It made me think though that Jesus died young which proves that only the good die young.

We then went to see my dad and then went for a roast at my mums. I'm going out tonight into town, I haven't been out on Easter Sunday for ages but if I remember it's a good night! I'll post some pictures tomorrow but I'll probably be very tired after my busy weekend!!

More Sad News

Suzy (aka Poozie) you were very popular on the cf forum, we are all going to miss you so much and never forget you. Poor Alfie is going to miss his mummy, you loved that dog so much. You were so positive and strong, I'm so angry you didn't get your new lungs in time. You were so determined, making bracelets for cf even when you were so poorly. I admired you for your outlook on life and I hope you knew this because I remember I once told you. You wouldn't want any of us to be angry and negative however I can't help but have this empty feeling in my stomach at your passing and I feel scared for what lies ahead for me and everyone else who is fighting this cruel illness.

Please register to donate your organs if you haven't already done so, every person can make a difference to help save lives, Suzy had been waiting for over a year.
http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp

I was thinking about taking a break from the cf forums but Victoria has talked me out of it. I have also told her that if she leaves me I am going to come up to heaven and kick her arse because I don't think I could handle it. That applies to everyone by the way!

Hospital memories

I am still not sleeping very well and still having very vivid, active dreams nearly every night that I can clearly remember. These dreams are weird as I am always in them and usually I am watching my dreams, the dreams are never very nice but I wouldn't call them nightmares as they don't scare me. When I wake up on a morning my eyes are puffy but not as bad as before, and even after 12 hours sleeping I still feel tired, drained, gunked up and generally feel like crap! I dunno maybe I am sleeping too much, although I've been setting my alarm to get up by 8.30-9am and it hasn't helped. The only explanation I can think of is the voriconazole is messing with my head, I've looked at the side effects and don't think I can see anything about sleeping problems. It's so strange because I am usually quite a good sleeper (apart from getting up to go to the toilet like 5 times during the night). My dreams are clearly been influenced by what I do during the day as last night I dreamt about being Henry the 8th's wife and guess what? I had watched the Tudors on Sunday and abit on Monday. Jo by the way, found me the 1st episode of the new series which isn't even supposed to be out yet! So I officially love Jo!!!! In the dream Johnathan Rhys Myers was not Henry the 8th which is abit disappointing, that would have been a nice dream....! No my dreams have to be historically correct and Henry was ginger and fat!

So I couldn't get to sleep last night and was thinking about random stuff like you do, and I was thinking that I think my memory is quite rubbish, like things from my childhood etc. So I decided to think about all my memories from been in hospital (I clearly was not going to sleep!) as this seems to be the biggest gap in my memory which is quite strange. Actually I discovered I can remember quite alot! As you will see, cross infection rules were pretty non existent! (wcf means they had/have cf). Here I go:

-Watching Daniel (wcf) getting his port flushed to see what is was like
-Someone telling me someone had stood on their line and pulled their port needle out and I asked if it hurt (I didn't have a port at the time) and the person was like 'well yeah duh!'
-Getting my first port - drawing an x on my chest where is was going to go and they kept cancelling the operation date (I did finally get it although can't remember this)
- Been in the bath whilst someone (my mother and nurse I think) pulled the dressing off my stitches on my stomach from having my gastrostemy put in and me not enjoying it
- Playing on the mega drive with Nikki (wcf, rip) on Sonic 2 and she always kicked my arse. I had to sit in the door to my room and she in hers with the mega drive in the middle (their attempts at preventing cross infection...)
- Clare (wcf) asking Daniel out for me, he even came to my house to play Lego you know!
- The nurse telling my mum and I that Clare had died during the night and my mum crying and I laughed for some reason and got told off (I dunno why I laughed, I guess I found it weird I had seen her the day before and she seemed OK to me)
- Weird, fat, pervy boy with asthma spying on me through the curtains when I was in a bay room and when I told him I didn't like him anymore he told the nurse I was bullying him and I got told off!!
- Someone chucking calogen across the room (Shelly, wcf maybe?) and getting it all over my simba lion cub!!!
- Thinking I was so cool cos I had TWO drips and my feed drip so I had 3 in total
- A little girl who lived in hospital called Charlotte I think, she lived in the third single room from the nurses desk, she died when she was about 3 and I thought that room would be cursed and never wanted to stay in it.
- The ward had some pet fish that we were allowed to feed and you had to mark a piece of paper when they had been fed so they didn't get overfed
- That stupid treatment room with the bloody train painted on the roof and my mother getting me to count the stupid wheels every time they tried to put a line/needle in me! It did not distract me!
- My port blocking and them putting 2 needles in at the same time to try unblock it (it didn't work). I ran away and hid in the toilets when they suggested putting another needle in!
-I remember when they put your line in, you had to ensure they attached you to the drip by putting the tubing under your top, otherwise when you came to take it off that night they had to detach all the tubing from the drip to get your top free. I have no idea why they didn't just stop the drip for a minute and unscrew it somewhere to get the top free. I don't even know why they insisted attaching you to the drip all the time to have 10mls of saline pumped into you per hour! I know it was 10 mls cos I learnt to do it myself when it beeped.
- Been in a bay room and the baby next to me crying constantly and I couldn't sleep. So I rang my parents during the night off the pay phone in tears and my dad drove over and sat with me until I fell asleep. Bless!
- The earliest memory I have of hospitals is before I even went to St James and I was at Pinderfields hospital and I was playing in a sandpit, I don't know if I have even made this memory up! Sand pit, in a hospital..??!!

So as I discovered I can remember quite abit, but they are only snippets of things. It helped me get to sleep anyway!

A tiny bit emotional

On Saturday Pete and I were supposed to be going to the cinema to see the Young Victoria, instead we ended up dog sitting and watching The Departed on dvd. Why? Because both the stupid cinemas have decided they are only showing the Young Victoria on Mondays and Tuesdays and the other film we were willing to go see instead (Knowing) was on at either 7pm which was too early or 9.30pm which is too late, at both the cineworlds close to us. The 7pm was too early as I worked at my mums shop and so didn't get home till about 5pm and I needed to have a little rest, get a bath, have physio, do tea etc. Helping out at my mums shop is going to become a regular thing as I can manage a few hours, I'm allowed to do it and still get my incapacity benefit, I won't get bored just sitting at home and going out of my mind and of course my mummy is flexible and won't be like a proper boss :o)

So anyway I was annoyed about the cinema thing as I was really looking forward to it and I wanted to keep my mind busy with Louis passing away. It's not like I knew him really well or anything, but it's abit scary when someone you have spoken to suddenly dies, it reminds you how it can just happen, it's upsetting and you have no control over it and it's just heartbreaking to know a nice, young person has passed away. It could have been so different if he had got his transplant! So anyway I was miserable and fed up and I started crying for no reason and once I started I couldn't stop, I'm abit emotional at the moment, that time of the month and everything... Sometimes you just got to let it out! Pete asked me a few times what was wrong and I said I didn't know so then he just left it and stroked me because he knows I like it :o)

On Sunday we went to this warehouse place called JTF and we put the roof down on the car because it was sunny. However not sunny enough, I was freezing my arse off when we were on the motorway! We looked in the wedding bit for ideas and bought some stuff for Alfie, including a new box thing for him to sit in, in the car and a travel water bowl (70p, bargain!). We also bought a new mop incase your interested....
My cousin and friend came around in the evening to arrange the hen nights, remember I am having two! Booked travelodge for both of them, bargains!

I have been asked to do some training on cf at Scope where I volunteer, I feel quite proud I've been asked and appreciate the opportunity however.... I'm still thinking about whether I am brave enough to do it, as I'm abit of a wuss when it comes to speaking to a group of people! I don't know why, because when I was at uni I did it all the time for the law part of my degree, we had to moot, where you stand up and put your case forward for your client etc. Telling people about cf is way more scarier though! I've been thinking about what I could do and so far I have thought I could (not in this order):

-Get people to say what they think know about cf, more out of interest for me lol, but also to show it is an unseen disability and so people tend to know little about it
-Do a day in the life of me kind of thing with acapella to show etc
-Display the variations in cf (if you know one person with cf you don't know us all!) by showing different examples of people I know with cf (if you guys would let me obviously!)
-A picture of me with arrows showing all the ways cf can affect a person
-Explain the genetic side of cf
-Abit about transplant
-Go through problems/obstacles people with cf may have and how a mentor may be able to help them (afterall this is training for people who want to mentor others)

Speaking of Scope, I saw my mentee this morning and we had abit of beauty session. I did her hair, make up and nails, it was good fun! I don't really say much about my mentee or voluntary work as it is all confidential but I think I'm allowed to disclose we had a fun pampering morning. I never use my ghd's so it's nice to actually put them to some use!

Another life lost

I don't mention everybody who passes away due to cf as it would just be too depressing. However every so often there is someone who stands out to me and Louis was one of those people. He hadn't posted on the cf forum for awhile so I knew things might not be great but it has still come a shock like it always does. Louis was a great guy, there is a picture below of his tattoo he seemed very proud of. Clearly not ashamed of having cf and proud to have it out on his arm (65 roses is kind of a logo for cf).

This is what he said about his funeral when we discussed it on the forums:

'Once again I have to be different because I'm being plastinated . I'm thinking of having a party/living funeral because 24-48 hours after I die ill be in Germany. So basically Im getting major drunk and saying goodbye to everyone in advance at a party I'll also be explaining that all my stuff after I have died will be going on ebay and all money raised will be going to a charity'

I dont know if he got his party but I think i'll be having a drink in his honour. He was only 18, rest in peace sweetie xx

Torias Eulogy

http://web.me.com/alex.crossland/Site/The_Eulogy_From_Victorias_Funeral.html

All I can say is wow, I hope one of my brothers can make me sound so amazing at my funeral!