Friday, 29 July 2011

Some of my recent thoughts..

Did you know, the average human being breathes between 18,000 and 30,000 times a day..

Now how many of those do you cherish? Everyone says every breath is precious, but would you really treasure something you do that many times a day and something your body automatically does without thought?
What if you had to fight for each of those little breaths?
Do you think they'd become a little more precious if you knew you might only have a certain amount left in your body??

I don't know about you, but I do.

I haven't wrote a blog lately because I'm struggling. Each breath is becoming more and more difficult and I am having to think about breathing, it's not an automatic thing anymore. I laid in the bath last night, trying to take deep breaths and I couldn't, I just had to gasp, gasp, fight, fight and fight some more.
Suddenly that thing you automatically do upto 30,000 times a day, seems a little more significant and a little less of an unconscious act..

So that is where I am right now.
That is why sometimes when people wonder why I've said "I don't feel well today" yet there I am, make up on, smile on my face, even laughing - I'd rather look well on the outside to cover up the path of destruction my body is currently on - because what is better to me, a comment or a sneer about 'looking well' or being told I look awful?? :).. I know it's certainly not the latter!

It's very difficult to try and explain exactly what it's like living with an invisible illness, but it's even more difficult trying to live your life with a body that is dying.
I still have a mind that wants to be like every other 20 year old girl, I have a mind that wants to be a fantastic fiancee, the perfect daughter, grandaughter, cousin, niece, friend. I have a mind that is not ready to slow down, a mind not ready to give up yet.
It's a very difficult process...
Particularly, when everything inside you is saying no, but you persist on saying yes.

What comes first nowadays? Health or life? It's a fine balance trying to keep both sides happy. A lot of negotiation, a lot of let-down and disappointment.
I wonder if on occasions I really should admit myself into hospital when I know I should or if it is important for me to attend whatever is planned and carry on living while I still have the ability to.

The health-side is dramatically and very rapidly taking over the life-side, I preferred to keep them apart because it didn't seem possible living in a world where I can keep both sides happy.
I'm always cancelling life things because of health and cancelling health things because of life...

I've been doing a lot of thinking lately, I've also been doing a lot of sleeping and of course trying to live a 'normal' life! Oh and the odd moan here and there, woe is me... Self-pity hah, oiiiii I'm allowed the odd day!!

Anyway, sincere apologies for the serious lack of blogging. I will, I'm sure, find something exciting and thrilling to blog about very soon!

I did have 3 of my very lovely friends round this evening which was great!! Laughter is the best medicine :)!
Live, love, laugh.

Saturday, 23 July 2011

I Will Be Back...

Thought I better do a quick message for my lovely loyal blog readers regarding my absence!...

I'm not feeling well at the moment, not well at all :( and I'm spending a lot of time asleep/moaning about feeling ill - lol!
I'm aware of the fact I haven't blogged since before my holiday, so when I finally feel up to it, it will be a big one.. Stuff about my wonderful holiday, my clinic appointment on Wednesday, my Gt Nanny's funeral on Tuesday and general other life-stuff :)

I apologise for not keeping you all up to date, if I don't feel well enough to be on the computer/facebook 24 hours a day, you know something is up!

All positive, get well vibes are much appreciated at the moment.
Thank you.

Sunday, 10 July 2011

The Abseil

Today was the day we'd been waiting for, well some were dreading it, others were excited!! The abseil!!!..

The 14 abseilers (who deserve all the glory) were as follows:
Matthew Brett - Step-Dad
Kimberley Thorpe - Sister
Tony Nelli - Father-in-law (to be)
Megan Nelli - Sister-in-law (to be)
Georgina Keinzley - Megan's Friend
Ashton Gibbs - Cousin
Chris Leek - Ashton's Boyfriend
Justin Dedman - Uncle
Steven Brett - Step-Uncle
Adam Chisnall - Second Cousin
Adam Wedlow - Second Cousins Fiance
Dean Knights - Friend
April Scott - Friend
Joe Louth - Friend

Just to give you an idea of the height!

The amount of people who came along to watch and show their support was amazing. A few of the people doing the abseil were very frightened, but they all managed it and I'm very proud of each and every one of them.
A special little mention for Megan Nelli, who broke her big toe on Thursday and has been on crutches, still had the determination to do it so I'm so so proud of her, despite the pain she was clearly in during and after the abseil, she still did it!! Love you lots Meg :).

The sun was shining all day and we have raised just over £2800, we really want to reach our £3000 target, so I know I'm starting to sound like an annoying broken record, but every contribution counts. So, if you can dig deep and can donate, it would mean a lot to me and all of my wonderful family and friends who helped make this day brilliant and raised so much money for people like me and the thousands of others who suffer daily with Cystic Fibrosis.

The CF trust is not funded by the government so everything is donation based, there is a potential cure in something called 'gene therapy' but right now, there is not enough money to begin proper tests on CF patients. This could be the cure we have all been waiting for, when I was a baby, the doctors told Mum they thought a cure would be found by the time I was a teenager, needless to say, it was not found. So literally every little donation is helping to bring that possibility ever closer...
Kerry Thorpe's Just Giving Page

I've had a fantastic day, the Evening Star newspaper were there and took some photos and I gave a quick interview, so that will be in the paper tomorrow night! :)

Thanks again and I'll be back after my holiday!

Saturday, 9 July 2011

The Abseil Is Here!!! &An Update!

I haven't felt like I've had much to blog about lately, just been plodding along, eating as much as humanly possible (and more,) sleeping, nothing too exciting..

On Wednesday I went into town with Mum for the first time in a long while. My wheelchair was at Josh's and it was a quick last minute decision. We are going to Butlins on Monday (Josh and I, Mum and Matt, my sister Kim and her fiance Kieren) and I realised I didn't have a swimming costume because I don't fancy wearing a bikini with my ugly tube, not that I'll be doing much swimming but I may sit in the pool/go on the slides, so I found one I liked in Topshop so we intended to go there, which meant we could park disabled quite close and I wouldn't have to walk too far, however Topshop didn't have any costumes at all! So we then went for a bit of an unexpected walk and unfortunately my eyes were stronger than my lungs, meaning I couldn't resist all the pretttty clooootthhhesss. Lol! I went in a few shops, bought a playsuit which is so comfy I feel like I'm in my pyjamas ;) Before ending up in New Look, where I tried on more clothes and found a swimming costume I liked and didn't feel like too much of a granny in...
Got it in a size 8 too, I've been a size 4-6 for a while, so to finally fit a size 8 was great and showed me all that eating was starting to pay off! :)

By the time I got back to the car, despite the fact we walked at like 0.000000001mph, I was exhausted. It has taught me a lesson, I'm now not well enough to 'get up and go' I need to plan these things better, it was spontaneous and got me out the house for a bit, but it ruined me.

My pleurisy has flared up again which is causing me a lot of pain, unfortunately pain-relief barely touches the pain at the moment and I'm struggling quite a bit. Also my kidney stones obviously decided to go for a bit of a walk last night and the pain was horrific, Josh and I were out for a meal at the time and I suddenly felt like I was being stabbed and it was a bizarre kind of pain which I can only put down to that. We had to abandon our meal before I burst into tears in the middle of a slightly posh restaurant :P

But anyway, pain will never stop me. I'm go go go.
Really looking forward to our holiday!! Got some new clothes and have been trying to preserve my energy so I can really enjoy myself, there is a silent disco on Thursday in the over 18s club at Butlins, so we are going to that which will be fun. I intend to drink a lot ;) go kart a lot, sit on the funfair all day like a big kid and then eat the entire restaurant including tables/chairs/people and just make the most of it with my wonderful family and Fiance!!! :D

My next update will probably be after the holiday, but there is one more thing I must say..
Sunday is the day............. The abseil has finally arrived! 

14 of my brave family and friends will be climbing the 150ft maternity block at Ipswich hospital, abseiling for Cystic Fibrosis, helping to change the lives of people like myself. If I wasn't so ill, the adrenaline junkie in me would be up there with them, but I will be cheering them all on from the safety of the ground! 
So far we've raised around £2700 not including the money from 2 people, so I think we may be over the £3000 mark which is fantastic and I'm so proud they are doing this for CF! :)
If you want to sponser them, or if you just want to give some money to the CF Trust you can do it through this link...

Even if you only sponser a £1, any contribution, however big or small, will help change the lives of people like me..!

Thank you and I'll speak to you all again soon :)

Saturday, 2 July 2011

Hospital stay, weight gain, stable liver... Good news :D

I went in hospital on Monday and then came home Thursday, nice quick stay, seemed to go pretty fast as I knew I was going on Thursday, when you know the end is in sight, it does make it a lot more tolerable.

I was admitted to try a soya-based feed as they are pretty sure I'm allergic to milk protein, as opposed to lactose intolerant. Also I was going to have a 3 day glucose monitor on which checks your blood sugar every 3 minutes, this would give them an idea of whether my sugars go high/low during the day or night and particularly, what they do when on feed as it has no sugar, but is very high in carbohydrates. I was also having my feeding tube changed, having the stitches taken out and going for an ultrasound scan of my liver/kidney/spleen to see if my liver disease has got any worse/better etc. Finally, I was being started on a tablet which has a known side effect of weight gain and an increase in appetite...

So firstly, the feed - seemed to go very well, I tolerated 750mls for two nights, then tonight I'm going to try 1000mls which unfortunately, is not as calorific as the first feed, 1000mls = 1000 calories, so to get upto 2000 calories of the feed I'll be needed 2Litres, which seems pretty scary but hopefully I'll get there eventually! I'm now on Nutrison Soya which seems to be working much better for me, which means no horrific side effects and I can actually keep the feed down and still want to eat at the same time, perfect!

Secondly, the glucose tests. I won't know the results as they took it off just before I went home, but they will upload the results onto the computer and put them into a graph, so we can see exactly the pattern my sugars have, if they have one at all! I'm going to clinic after my family holiday to Butlins, where I will also be testing a new nebuliser which is only given to people who are very sick as it is super expensive!

I had my tube change appointment cancelled because of a traffic jam, meaning Josh took 5 and a half hours to get to Papworth, which meant my hospital transport was also caught up. It was changed to Thursday.
I had my stitches out first, which had been in a little bit longer than they should so they didn't come out as easy as they could, but still not really painful. The tube change was so simple, literally deflate the little balloon inside, pull it out, clean the area, put new tube in! Pain-free, easy peasy, done :)
I had my scan done and the good news was that there was no significant changes compared to my last few scans, my liver has not got worse and is remaining stable, which is good :) they've said at the moment there is no need to change anything and they are happy to continue having yearly check ups! The not so good news, was that they found a couple of small kidney stones, which I'm gutted about because I'm worried these could be the sort of things which might mean I can't have a transplant, I'm working so hard focusing on my weight and diabetes, then something annoying like my kidney could mess is all up :( Hopefully, they will pass quickly and by the time transplant comes, it will be a thing of the past :)...

Finally and probably most important - this tablet. It is called Olanzapine and is a tablet used in mental-health situations, particularly for Schizophrenia and Bipolar disorder. I have always suffered with depression and Mum is convinced I have bipolar (thanks Mum) so this tablet which I've been prescribed because it has a very common side effect of gaining 10 pounds in 10 weeks, may help in more ways than one.
It is also a calming/sleeping tablet and I find myself feeling very tired after taking it which is good because my sleeping is terrible at the moment.
I also feel absolutely STARVING all of the time, lately I haven't fancied food much at all because my chest is playing up and when you have no energy and feel rubbish, food is the last thing on your mind. But anyway to show you what it has done I'll tell you my 'meals' that I ate yesterday..
I wasn't allowed to eat until after I'd had my peg change and scan, so I wasn't eating until 12pm.
I had.. Lunch - A burger king, cheeseburger, chips, a coke, Jaffa cakes, 2 packs of crisps.
Afternoon - Mcdonalds burger, strawberry milkshake.
Dinner - Spaghetti bologanise.
Evening - Oxtail soup.
Night - Feed.

&Various other snacks and stuff - In total I had 3500 calories!

Then today after a 3 course meal out with friends, I weighed 6 stone 4.2 which is the highest weight I've been for a very very long time. (I also feel very hungry now, after a 3 course meal! It's madness, lol).. I'm now about to attempty 1000mls of feed, which will hopefully boost the weight! I'm so happy right now, my weight has made me feel fantastic. I noticed today my jeans actually felt tight, my cheeks look a bit chubbier and I don't have to try and make them look bigger with make up, they are naturally like that! Everything just is getting better. Except my chest, which is getting significantly worse day-by-day.

The worst bit about the hospital stay was my lung function, I had 4 attempts at checking it. The first 2 tries, I got 17% 3rd time 18% but I was determined to get over 20 so I had a 10 minute break, relaxed my lungs a bit, then blew the hardest I have in my entire life and managed to get 22% which is equal to my worst lung function ever, but much better than 17% ..the main problem was that after that attempt my oxygen levels dropped to 80% because I really over-worked myself and almost passed out, oops! :P

As I always say, it's not all doom and gloom. Lungs may be rubbish and I have some annoying little stones taking up residence in my kidney, but my weight is better, my liver is stable, my appetite is through the roof, I feel good about myself at the moment and life is (almost) okay :)

Thank you for reading!