Friday, 20 September 2013

The wonderful life of a person with CF...

I thought I'd come up with a few things us wonderful people with CF endures during our life

  • Listening to your dietician moan at you how you are so skinny, need to put on more weight and along those line, yet you're thinking to yourself "Damn bitch, who's skinnier here, me or you? I think the answer is you" Don't we hate all those skinny ratty dieticians nagging at us?
  • Girls should be able to relate to this - Having to find a decent bra that will fit around our beautiful huge barreled chest, yup sadly not because we've got big boobies, unfortunately. 
  • Talking to one of your crush and then him/her ruining the perfect moment by pointing at your t-shirt and you look down and find your phlgem stained down, which you obviously didn't noticed. Awkward
  • Eating more than a obese person and still losing weight. The joy we go through
  • Getting stares of elderly people when we park in the disabled bay. "Love, our lungs don't work, not legs"
  • Having coughing fits in public and someone offering you some sort of cough medication. Bitch pls, if only that worked.
  • Eagerly wanting to punch someone that just moans and moans about having a cold, blood test or even gaining weight. Stfu pls
  • Having a coughing fit and then being nagged how we should stop smoking. Pft bitch pls, if only!

The weird & wonderful things that comes with people with CF - 

  • We come with a lot of added salt
  • When we laugh, we cough, we pee, we fart - Basically we're good at multi-tasking
  • Being blessed with those clubbed fingers that looks like ET's fingers
  • Some PwCF farts could possibly be used in Gas Chambers. I reckon it would be the best option. 
  • It's a must-do to flirt with the student doctors when you are hospitalized. This is what keeps us sane! Beautiful greek god looking doctors
  • PwCF can sound like a pop-corn factory exploding, shame we can't actually cough up popcorns or that would be amazballs.
  • Girls - where we aren't judged for our blowing skills we're applauded.

Jokes time!

At what station does the Creon get off at? St Pancreas

I went to a Cystic Fibrosis Charity fundraiser tonight, I'm so tight, though I didn't cough up anything.

Just a little light-hearted post I thought I'd do. If you got any other funny CF humors to put, please comment or tweet me via click on the twitter logo on the right hand side.

Credit goes to Sophie & Chantelle ;-)

Saturday, 7 September 2013

Hi guys! I'm bored

Hey! As my title says, I'm officially bored, so I've decided to update and write a post on this blog which I haven't updated since May so yeah...

I don't really know how to start of this post but I just though I'd explain about my summer holiday and what I've been doing...

So we've had about 6 weeks of for Summer, about 12 for me as I finished Mid - April! Longest, boring break I have ever had in my life, if I'm honest! I haven't really done a lot of interesting things, which is a shame as I had plently of times to do stuff... I did go on a Caravan Holiday with my family, and friends at the beginning of the Summer Holiday which was pretty fun apart from an accident when my Friend fell down the man-hole! Oops! It's been quite Hectic this Summer as I haven't lived at home for like two months nearly. The reason because of that is because my house is under-construction. It started off as a simple loft converstion but then my Dad got carried away and decided to completely strip out the second floor aswell and create 3 average size bedrooms so my two little sisters can have their own and not share in the future which is going well but it's taking forever so I can't wait to move back in... 
Another wicked thing that has happened is that I PASSED my driving test with 1 minor! Get in! 

I'll come to the CF side of things now - 
My health since May hasn't been the best of times. As I previously mentioned in my other post, I was currently undergoing transitioning to Adults care, which I was kind of Dreading and to be honest, I wished I transferred over last year when I was debating about it! Peads are awful compare to Adults, well that's what I think! 
The day I transitioned Adults, I got admitted straight away as they were worried about my low lung function, to be honest, I wasn't worried as I was getting used to that numbers and the fact that Peads never really did anything about it, I was a bit shocked to be admitted straight away. So I went in two days later after I had my Choclear Impants appointment (I'll talk about that afterward) I was nervous about being on a new ward, meeting different staff and the CF team but I settled in quite well. I caught a cold as soon I went in so I was in for nearly 4 weeks. I came out with oxygen overnight which was a bit of a shock too, I was VERY annoyed with that because it prevented me from being able to go on holiday abroad to meet my friends.
 First time my health has stopped me from wanting to do something I like, never happened to me before so I wasn't happy about that as you can imagine. 
But yeah, over the summer I wasn't feeling great but kept pushing IV's as I felt I couldn't do it at home due to circumstances of my house being under-constrution so I tried to wait till it was finished (which it is still not!) but I'm currently back in hospital now. 
This admission, the plan was to re-do my sleep study and hopefully get off the oxygen because I'd like to see if it's any better, but I have had a step back last week which invovled in me thinking I was having a heart attack (Seriously, that chest pain was so bloody awful, I was drugged up on morphine and tramadol) I also been on the o2 24/7 for about a week now, but I managed to take it off this morning so hopefully it'll stay like that. The chest pain is quite incredibly painful today so I'm keeping myself topped up on Tramadol.
Anyway, that's it for CF now :) 

I'll update this post later, I'm pretty knackered so I'm just gonna end it for now. Cyaa!

Wednesday, 15 May 2013

Overdue an update...

Well it has been nearly two months since I last updated this blog! (oops!) The reason I don't really update it often is because my life is very un-interesting

I haven't really been up to much, well nothing interestingly exciting to blag about to be fair. All I did really was go shopping, eat out, get my liver intoxicated, school and all the usual normal teen stuff. Though a few things are happening in the next few weeks, which I'll explain...
Oh, it was my birthday too, but that's still not interesting enough to talk about ha-ha
Oh, and, I am doing my driving test in about a week or two so that'll be wicked! Long road trips to Paris bitches!

As you probably gathered from the last post on my blog, I moaned about how I kinda lost my hearing and was all depressed about it (If you haven't read it, click this) Well yeah, good news is that my hearing fully came back a few days later (still doesn't mean I can hear perfectly well :-P) We're still unsure why my hearing went completely shit for days but apparently it is common, so it happened...
If you read the last post, I discussed about being transferred to a hospital in London to have a chat and possibly an assessment for a Cochlear Implant, this is going to happen next Thursday, so I'm kind of excited/nervous. Though, I don't know why I'm bothering to go to be fair as I don't really want one. To me, Cochlear Implant has always been a last resort and they are one ugly looking fucker, so why would I want one on my head that is huge and noticeable when I can hear out of my left ear a bit... I guess I should go and speak to them all about it and make my decision from there.

CF Wise...
I haven't really got anything to update about CF wise, I just had IV's and all sorts. Though I got clinic next Tuesday which is the day I transfer to Adults (eek!) I'm looking forward to it to be honest, fresh new people (well kinda) but you know, hopefully they'll just be more um, interesting and stuff... Like I said, I don't have much to tell you which is good so yeah. :-) 

Anyway, this was just a short post as this blog has been abounded for a while so yeah...

Saturday, 23 March 2013

Deafness and theory test

Hello everyone,
Just thought I'd give a quick update on how's everything and stuff as I have had an eventful week to be fair.

Well this morning, I had my theory test, I was kind of shitting it if I'm fairly honest as I haven't practiced since I failed my last theory :S But luckily, I passed! Brilliant news for me as it means I now can get back onto the road and continue learning to drive with my driving instructor :-) 

Anyway, I also had some bad news which isn't pretty good for me, so I'll quickly give a small brief about that...

Basically, as some of you know, I have Bilateral hearing loss (is a type of hearing loss in both ears and considered "Deaf") due to meningitis when I was 6 weeks old, so I have been deaf pretty much all my life... 

Well anyway, last Wednesday morning I noticed I couldn't hear well when I put my aid on in the morning after shower which I assumed I must of got it wet again and that it'll dry out within an hour... Well an hour passed, and I still couldn't hear very well so I was getting a bit angry with the aid as it was a new one that was recently delivered due to my previous one got wet. Typical(!) 

Anyway, I just went to school as usual to finish off my coursework in hope that my hearing will get better as the day pass by, by the time I came home from school, it hasn't so I asked my mum to basically ring up and ask if they could deliver a new aid as I thought I may have gotten it wet inside. I also noticed was that when I decided to listen to music (I use headphones without my hearing aid) was that I couldn't hear it as well as I normally can, so that kinda made me think you wot... Well Thursday morning, I was hoping that I'd put my aid back on and miracally I'd be able to hear as I normally can, but the answer was no... 

So I just went to school as usual not being able to hear at all apart from a smide of my annoying voice and was hoping that there was a small faulty that the teachers (they are teachers who help the deaf students) could solve it and also listen to the aid. The teacher said the hearing aid sounds alright, just a bit smudgy in a way, so there's me thinking, well at least it's not my hearing... So I continued to struggle with not being able to hear, having to stare at people's lips to make out what they're saying (I can't do sign language as I have never learnt it, though I am currently learning at the moment, so lip reading is my life saver) which is just a struggle for me as I get easily tired just having to focus on listening... I was waiting all day for the tick to go by as I was eagered to go home to find a brand new hearing aid for me but no, they still haven't sent my new aid... There's me getting angrier as even though I can't hear anyway properly, I don't struggle as much as I was struggling... 

So I just went to school Friday (Yesterday) as I didn't want to miss out on anything and I'm working on my own at the moment, no lessons or anything so I wasn't bothered but I was just bothered that I'm having to ask people repeat simple words... Anyway, as the bell hit for home time, I was just excited to get home, the journey felt like ages as all I kept thinking was "What if my new aid don't work" and blah... 
Well, I got home and found my letter and put my new aid on and waited for it to turn itself on and there's me thinking I'll be able to hear as I normally can and everything will go back to how it is... But no, the aid itself didn't work either, so as you can imagine, I was getting even angrier that I was phoned my Mum to ring the hospital to arrange a appointment ASAP... Which was this morning...

Anyway, I went to the clinic this morning after I passed my theory and saw the audio lady. We chatted for a bit, she looked in my left ear to see if it was blocked and it was in perfect condition so it wasn't blocked, so we decided to have a quick hearing test to see if there is any changes... Well there was a small amount of changes which I thought that's not bad, but she explained that because I am already very deaf, small amount of change in hearing is going to have a massive impact on me. For me this is disappointing because if that means I got to hear the way I am hearing now, then I'm just going to struggle massively for the rest of my life to be fair... She explained how my hearing actually deteriorated and for me that's not good and the news I was dreading...

She suggested for me to go to London to go and see a team that do cochlear implant to find out information's about it. From what I know is that is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. Cochlear implants are often called bionic ears. It is often used if the person is unable to wear hearing aids anymore as it doesn't provide them with a sense of hearing... 

For her to suggest that did kind of come crashing down for me and hit me that I am deaf and there's no denying it. All my life I have tried to overcome deafness and I have put in so much EFFORTS into where I am today... When I was in primary school, you'd think I had learning difficulty because I had developmental speech delay and also my vocabulary and reading age was about 5 years delayed... So it is a bit like being back to square one for me as now I can't hear myself very well, I noticed I am struggling a little bit to say the words out properly... I guess I just like to be a perfection as I want to be accepted like a "normal person" if that even exist... 

So the plan is, to go London and basically gather some information about Cochlear and if I want to, I can go ahead and go for an assessment which is a long period of process and if I do fit the candidate to have one (According to the audio lady, I do) then I can decide what to do... In the past, I have thought about having one in my right ear as that's basically no use right now so I'm relying on my left ear but the fact that's deteriorated, it's now a matter of what's better... I also got another appointment soon for my hearing, a proper one to find out what has caused this as today was just a bit of an emergency to see if it was the aid so hopefully I can hear soon :-) I just gotta think, there's someone worst off so I gotta appreciate that even though I can barely hear, at least there is still a small hope of being able to be comfortable with it...

Anyway, I'm gonna go and sorry that was basically long ha ha!! I'd be shocked if you read this line to be honest, thought you'd be long gone ha :P

Monday, 18 March 2013

Mad March

Heeeeeello guys, hope y'all is alright :-) 

Sorry I haven't been really updating as I haven't really thought of what to say but I just decided I'll say a load of random shit as pair as usual 

As you probably remembered that I was currently studying my theory test (as I previously mentioned on the "Wish me luck" post... Well I failed my theory test by two points on hazard perception which you probably could imagine my disappointment in as I honestly thought after all that time I spent studying, I'd at least pass, but not I failed lol... I have re booked it for this Saturday coming and I'm definitely positive that I'll pass this time! Fingers crossed aye! 

I haven't really been doing much lately as I have been feeling like a piece of shit with my breathing being messed up which was a bit weird as normally if I'm breathless just resting and stuff, it tend to be because I am very chesty due to a chest infection or virus, whatever it is but this time I felt clear but I just knew I wasn't feeling the best of the world as it was just tiring me out so yeah I just been taking it easy really... Though I have recently been helping my best-mate at her work place (an Indian takeaway) which involve in eating all their poppadoms, getting free curries, and messing up phone calls!! No, I'm kidding but yeah free food is the best, and also something to look good on my CV ;-) hopefully will get me a better chance of getting a job once my studies have gotten out the way for the summer :-) 

I had my joint clinic (Last one ever in pead, boo! :-( -) which went pretty okayish, I'm not going to like give a summary of what's been said or so but yeah it was just pretty the same as what was expected. But I am starting IV's this coming Monday and I'm trying a new antibiotic which I'm pretty sure I've never had before as I can't really tolerate ceftz or colomycin IVs (We're not sure which one yet) as I had an episode last year of feeling drunken and horrible numbing of the face so we stopped that for now and also Toby IV's aren't so good as most of you know I am deaf so that messes my hearing up extraaaa more! 

I thought I'd mention that I'm moving to adults care next month toward the end of may which I'm not looking forward to now as I have heard some pretty negative stuff about the place but I need to go and see it all for myself before I can make an judgement of what I think so yeah I'm a bit impatient...

Anyway, have you guys heard of Ben Mudge? 

If so, I thought I'd give him a little shout out on my blog as he is inspiring and you all should defiantly check him out! 

He has Cystic Fibrosis, like me, but he is proving that you can do ANYTHING, and by that is Ben is an irish professional sponsored athletic which is amazing as it is very hard work to become one but to add on CF on the top of that, that's a tremendous amount of dedication and motivation into what he has put :-) So he is controlling Cystic Fibrosis, not the other way! 
Ben also bringing awareness into the industry and that's brilliant as the more awareness we get, the better! 

So if you guys want to check him out and give him supports or even ask him questions which I am sure he will happily would answer some! Follow him on Twitter - Ben Mudge (I sound like some sort of advertising agency, but I'm really not!) 

PS. Ladies, just goes to show that not all CF lads are skinny and small haha! ;-) We do have a "greek god!" in the CF community aka Ben... hahaha I should stop now! :-P 

Wednesday, 27 February 2013

Wish me luck!

I thought I would give a quick update on what's been going on even though hardly anything interesting has been going on...

Though you're probably pondering why my title says "Wish me luck!". Well this is because I finally got my driving license back last week after 4 months of waiting!  So I have booked my theory test this Friday! Waaah 

I'm with BSM, they have this rule (Pretty sure it's BSM that does this rule or whatever) so I am only granted 14 hours lessons for free till I pass to do my theory then I get more hours for free, so I decided to book my test for this Friday and to be honest, I am kind of shitting it. I tend to find I get easily distracted by noises and I can't concentrate for long so an hour of sitting and staring a screen whilst getting my brain in gear is just going to be HELL. But I'm hoping to go in with a positive mind and receive a positive outcome! 

I haven't really been doing much lately apart from trying to finish off my Society, Health & Development, which is just taking the piss as I should have completed it by year 11, but due to health problems and huge absent from school, I never really got the chance to complete it. It's frustrating because I'm not with my friends hardly now as I'm always in the Hearing Impaired Unit which is provided for the Deafs (So quiet in there and I get extra supports bitches) I was suppose to be retaking my Maths and English last September but they have now decided I need to start from scratch, which means I got to do the whole process of year 10 and 11 work but in Sixth Form still. So I'm going to restart it again this September as I was absent pretty much last year due to Port operations and fluy cold which kept me trapped at home.

Cystic Fibrosis wise 
We all have our good days and bad days and that's what's happening with me at the moment. I mean, I feel pretty well, but then some mornings I'll wake up feeling like a pile of shit and struggle to get a decent breathe so that's a pisstake because it's affecting my Education. Meeh

I just wanted to say, I found this paragraph about Cystic Fibrosis and thought it was quite well informative and well written. I just thought I would share it with you guys :-) I don't even know who wrote this, but whoever did, did a good job. 

Cystic Fibrosis: I could give you the medical definition of what it is, but that surely doesn't do justice to the realities of it all.

Cystic Fibrosis is a disease that slowly destroys your body one day at a time. It causes constant pain and fatigue. Hours worth of treatments and over 45 pills...not every week, but every single day. Your lungs ache and struggle to do, what seems to others, the "simple" process of breathing. Toxic antibiotics that improve, but yet also destroy your body. Doctors, nurses, and respiratory therapists are considered family. 18 years old. We're not celebrating because we are now considered a legal adult, we are celebrating because we are alive. Our bodies are starved from proper nutrients and oxygen. Kidneys fail. Livers fail. Hearts fail. Lungs fail. Bodies fail. People die. Kids who never got the chance to see middle school, teenagers who were holding on to hopefully make it until graduation, and adults who waited endless hours, but never received that call.

Think this is too harsh? Welcome to the life of thousands of people, who despite all of this, keep an immense amount of laughter and positivity in their lives.

Anyway, I'm going to end this now and hopefully next time I'll post with some good news (aka theory test!)

Tuesday, 12 February 2013

It's February already?!

Hey everyone,
Hope it's all going well with y'all and that you're sticking to your new years resolutions ;-) 

How's everyone liking the new make-over?! To be fair, I quite like it because it's plain and I'm not the most creative person so I'm quite proud with the header that I personally created! ;-) There is a minor mistake on the header which you guys probably already have noticed! :P For those who haven't noticed, the title is suppose to say "Spazzy & Fabulous" rather than Spazious because Spazzy and Fabulous together kinda mingled and makes the word Spazious, well in my mind it does! Also the quality is very shit but I can't seem to make it look clearer...
I also thought I'd mention this because everyone seems to ask why I have chosen "Spazious Sophie" I haven't exactly got a clue why but to be fair, I quite liked the fact because Spaz & Fabulous connects well ;-) and makes Spazious therefore Spazious Sophie looks very um interesting. But I also don't like over-used words that other people uses like "Sixty Five Roses" and all sorts so you know?

I don't really update very much because I tend to not have anything interesting to say but hopefully I can make this blog much more interesting starting now...

I haven't really done anything quite interesting lately which is poo, though I did get a job interview at this milkshake shop which I was hoping to get because they own a hut down the beach and just to think nothing is more perfect than getting paid to tan right?! ;-) Unfortunately I didn't get the job, but to be honest I'm glad I still got an interview from them as no one ever seems to accept me, so it gave me a clear aspect of what to expect when I next go to an interview. Blame my rubbish grammar and spelling on my CV ;-)

I'm also still waiting for my driving license to be sent back to me which is a pain in the arse because it was a struggle to get it due to them being nosey bastards and sending medical forms to be written forth and back, but hopefully I will get it soon!

Anyway, CF-wise

I did managed to finished IV's two weeks ago which is brilliant because I found it very annoying as it's in a bit of an awkward place so I keep forgetting it's there after nearly a year without one so can't blame me! I gotta' be grateful though as the last two ports were just absolutely shit if I'm honest so yeah... I had local CF clinic today which I trekked myself (mission with a heavy school bag) It was a bit weird as I normally have my Mum with me and she normally answers all the Q's and knows all my medications by heart whereas I don't unless they mention the name as I'm not good at holding long grammatical words :P
Overall I think it went alright, I'm happy that they seemed to listen to me this time and took noticed that my back does hurt and affects my school work due to lack of concentration and also I got to have a bone density scan possibly just to rule out whatever it is but I'm hoping it's just a small minor muscles thing that can be solved easily :) Though my lung function has dropped quite a lot in the last two weeks, I haven't felt well since last week so it's no wonder why, so I'm on orals (Thank god Dr changed his mind after thinking about admitting me in!!) so lets hope that works :) I'm on some orals for my sinuses too as I have noticed it has gotten really bad lately that I'm sniffing like a pig all the time and it gets even worst when I'm stressed or nervous and I'm always stressed out at school so not a nice image!

Anyway, I'm gonna end this boring post once again

PS. GUYS, it would be a massive help if you could maybe provide an idea of what I could talk about on my next post, it would be great! Feel free to TWEET me questions or even post below on the box :-)