CF and friendships.

Hello everyone.

I got some great feedback from yesterday's blog.
I'm glad you enjoyed it; i had a lot of fun doing that one and remembering thing’s i thought i had forgotten. You also seemed to enjoy my mum’s input too (in the comments); which is great!

Thank you for reading, without fail your always here. So thank you!!

Today has been good. I decided i am going to push myself in the gym. I mean really push myself. I am due to stop my IV's tomorrow so i am thriving and determined to boost up my Lung functions. I want to blow the roof off Boothall’s physio department; i will try my best :)
So i am going in the gym for 45 minutes today. I’m going to go at a speed of 5.5 (a slight jog) and incline to 3%. When i am walking at a speed of 4.5, i’ll incline to 4.5%.
I really want to get my lung functions up and keep them up by continuing my little fitness regime; i’m more motivated then ever at the minute so while i’m like this it’s best to get in the gym as much as possible!

Today’s Playlist (Jess’s favourite part):

• Sexyback – Just surrender
• Lollipop Remix – Framing Hanley
• Supermassive Black Hole – Muse (Live from Wembley)
• Taylor Swift – You should’ve said no
• Paramore – Misery Business



“Keep your eyes upon me, keep me in your sight, Help me don the crooked road, lead me to the light. The road I'm on is dark, I'm not sure if I know the way, Yet with you right beside me, I'm certain I won't stray. Protect me from the world, I know we'll make it through, Give me all the strength I need..... Let me lean on you." - Megan Stroup.

Cystic Fibrosis is an unpredictable disease, some days you can feel great and then the next you’re flat out with a chest infection needing IV’s.
When people are feeling crappy, friends are the backup, the rocks they lean on to make them snap back.

I’m one of those people that are friends with everyone and never have a bad word to say about anyone. I have a small group of close friends of which i love dearly; i’d do anything for them. I’m the agony aunt, the listener friend. The one you can lean on when you can’t stand up by yourself, the one that begins to pick the pieces up when you’re on the floor with emotions, the one that will try to catch you before you fall to rock bottom. I’ll offer you advice to the best of my ability and try to comfort you when you just need someone there. I’m usually the one that even when you have the biggest smile on your face, i can tell when something is bothering you. A smile can hide a thousand lies.

I hate not being able to help someone with a problem, can’t stand it. I like to see people making the most of their lives, happily.
Smiling joyfully.
Laughing hysterically.
I always believe that frowning won’t ever make you feel better but if you smile, there is always hope, just a little bit of faith that things will get better and when you believe you’ll achieve. I can’t guarantee i’ll make all your problems disintegrate but i’ll give it a blinkin’ good go and make you smile at least.
So i’m the glue i suppose you could say that hold’s you together when you’re falling apart.

When i manage to get in school our close nit group is great and fine. When i’m in hospital or off sick ...
Nothing.
I don’t see them, i don’t hear off them, i don’t know what’s going on in school and i don’t know the recent gossip. To be honest it’s pretty lonely, you feel isolated and ‘out of the loop’. You feel like you’re out of sight, out of mind. However, you tend to feel upset and annoyed too. Annoyed because you spend all that time being there for them if they need you ... but when you need them ... Nothing.
Just a text would be nice every once in a while. Just a phonecall and abit of a catch-up chat. Nothing.
Just a quick visit. It’d be amazing to see some friendly faces because when you’re at home off sick. You can’t be gallivanting around Oldham; to be honest when you chest is rubbish you don’t really feel up to going to the pictures. When you’re on IV’s you can’t be planning to go out somewhere because your day is ruled by IV times. When you’re not ill, it’s hard to make plans because like i’ve said before ... CF is unpredictable. You never know when you’re going to be chesty. Therefore, instead of going to the park, you have to stay at home, do something in the gym ... do extra physio.
When you’re in hospital, it’s boring and i know parents work and my friends have school and i understand that completely, but a phonecall or a visit after work/school would be wonderful. Just a text would put a smile on my face.

I have been speaking to lots of people who suffer from Cystic Fibrosis and even though the symptoms are always different and the ways in which we are affected aren’t the same. We ALL go through this, faze.
The faze where we feel like we are a burden to our friends were we feel left out and totally alone.

Personally, i go through the faze and then think how selfish i am for feeling that way. How dare i be so self centred because i know the world doesn’t revolve around me?
I feel guilty for thinking that people should text me, phone me, visit me. On the other hand, i think; how selfish of them ... i give and give and give but receive nothing in return. No concern, no rock to lean on, no cheerful gossiping girly chats.
You feel so alone, yet you’re surrounded by people, nurses, doctors, family.
Still, as much as i love them; there not the same as your group of friends.
You feel separated from the world and it’s just devastating.
However, i also begin to think, they have lives to live. I can’t expect them to make room for me.
Yet, isn’t that what friends are for? To pick you up when you’re feeling down?

Another excuse i give myself is that they avoid the fact that i have CF. When i’m well and everything is normal ... everything is great! When i am on ward 14 with tubes in my arms, IV’s pumping through me and oxygen on ... i imagine it’s not nice. So they block it out. They avoid me like the plague. I’m a burden to them that they can’t deal with.
The thing is though ... i’m not normal even when i’m well. The act i play is well practiced ... in school, i’m just like every other girl. Out of school and behind the scenes i’m having meds, injecting insulin, doing physio etc.
Maybe the reason for them not being there is because they don’t fully understand?
You see i disagree with that point; they’ve known me since nursery some of them, i’ve done speaking and listening presentations about CF in school. We have had numerous conversations about CF during ‘heart-to heart’ conversations.

I tell my friends most things but when it comes to my CF, i hesitate. I don’t want them to worry or be scared of what may happen in the future because i’m not scared at all. Sometimes, i think they hide what they really think about Cystic fibrosis. Cautious not to hurt my feelings. Maybe i’ve got the wrong idea.
I’ve not spoken to them for four week. I’ve been off school for the past four week with a chest infection and on IV’s.

I just wanted to explain the ‘behind the scenes’ of CF and friendships.
There hasn’t been one CF person i have spoken to who has disagreed with me; it’s fascinating. I wonder is it CF that scares them.
I just wish they’d speak to me and tell me how they feel about the whole thing. I’m hoping they will read this and feel like they CAN call me and tell me what worries them. I know the world doesn’t revolve around me but a nice chat would be wonderful.I must stress that not ALL my friends are like this. The are a couple who never let me down and i am so thankful for those people. You two make my day, you'll never know just how much that, "Hello babe, how are you?" means to me!! Thank you. :)

Thank you for reading!
Take Care, xoxo

View Post

Me and my CF vs Counthill School.

Today has been a good one. (03/04/09)

I am on IV’s at the minute; it’s my third week and the new antibiotic is really kicking the infections bottom, so i am impressed! It’s called Amikacin; i love it!
Anyway, i felt great today. My chest hasn’t been half as bad as it previously has and my secretions aren’t as thick or sticky.
Today i also managed to do thirty minutes on the tread mill at a speed of 5.5 and i inclined 3%; not much but when you’re out of practice and LF’s at 54% it’s pretty damn good! Haha. I was proud of myself. However, most of all i was proud that i really enjoyed it, REALLY enjoyed it. I went on YouTube on my I-phone and listened to some tunes as i walked. My favourite pick of tunes today were:

· Decode – Paramore
· Misery Business – Paramore
· Supermassive Black Hole – Muse
· Walk This Way – Aerosmith ft Run DMC
· Famous Last Words – MCR (bit of a rock one there thrown in for good measures)
· Right Round – Flo Rida

When i had finished on the treadmill, i then ‘attempted’ to make cookies with one of my best friends Aimee Burns.
NOTE I SAY ATTEMPTED!!
Photographic evidence shall be up shortly guys ;) HAHA!!
She also brought some schoolwork for me to complete over the Easter holidays. This leads me to my next subject the one i am making this blog about...

So this post isn’t a heartfelt tearjerker, it isn’t deep and meaningful, nor is it informal as such. This is just me explaining the situation with my school; explaining the situation for alot of CF’s throughout their school years. I attend Counthill Secondary School. For those of you who are unfamiliar with it, here is a little information:

Counthill School was opened in 1951 and consists of approximately 1100 children, 80 teaching staff and around 60 support staff. Pupils attending the school are of mixed race and between the ages of 11-16. This means, years 7-11 (senior 1-4 ... i think).
The school has been put into special measures, it has been for about 4-5 years now. Anyway, at the minute they are building an ‘academy’; here Counthill and another school called Breezehill will merge to form one huge academy.
I fail to see how putting two failing and fighting schools together will make an improvement; just my opinion anyway.

I am in year 11 and i am just around the corner to sitting my GCSE’s. Here is where my story begins.
When i started at school. The CF nurses, nutritionists and physio’s all went up to talk to the whole faculty including; head teacher, deputy heads, head of years, head of all departments as well as the senco officers. They wanted to make sure everyone in the school was fully aware of who i was and why i was so special. They had to explain my illness and the needs that have to be met as well as the repercussions of my CF.
From then on every parents evening; my parents would ask every single one of my teachers if they knew that i had CF and what that meant. However, more than likely the answer was no.
In my opinion, this is appalling to think none of my teachers were aware of my condition and that i even had it. So yet again, the CF nurses had to write letters to all of my teachers. Sadly this is a reoccurring issue. To this day it still is.

Throughout school, my attendance hasn’t been great...when your ill there is nothing you can do about that atall. Hospitalizations, hospital check-ups, port flushes as well as not feeling upto going in school due to chest infections.
Well last year, as you may know from my previous post. I was never in school; i reckon i missed three quarters of year 10. Year 10 is the important year for coursework. Heading into year 11, i missed the first month as i was recovering from my operation. I was in school for October and i had to complete all of my coursework, work that fellow students had been doing for the past year; i had to complete in less than a few months. I was told by my English teacher that she was putting me forward to sit my GCSE early. She thought i would be capable to do it. This meant i had to complete ALL English coursework; 3 essays, 1 original piece of writing and 2 speaking and listening exams too. To my amazement in all of the coursework i got A’s and sat my GCSE to overall get a B in English. I just had to mention that because it is one of the proudest moments in my life so far Haha! Sad i know ;)

So after that whole thing, i was off yet again with a chest infection, i returned the following week and was sent home after coughing a little in Science; i felt as though they didn’t want me to be a liability. The next day arrived and i went back to school, yet again i was sent home after P.E because i had a coughing fit. Yes i understand that for someone who isn’t used to this kind of thing; it must be rather scary, however, ive been at the school for 5 years now; they all know i have CF and they all know that during exercise i will cough as many ‘normal’ people do. The things that annoyed me most was that i was fine immediately after taking my inhaler, they thought it was best i go home though and took it upon themselves to phone home. Also, while i was coughing my teacher ran over to me, asking if my ‘asthma’ was playing up again?!?! Asthma!
“I wish”, was my reply to the question. My friend explained AGAIN that i had CF while i calmed my breathing down.

For the past 3 week i have been off school with a bad chest. Not one phone call to see how i was doing, to see if they could call down with some work ... nothing.My mum got a letter through the post last week. It basically stated that:
“Your child’s attendance is very poor ... If you do not produce a formal letter (either a doctor’s note, prescription etc), the matter will be taken to court.”
My mum was totally disgusted with this letter and rang the attendance co-ordinator at school. She apologised and said she wasn’t aware what was going on but did however need to see this formal statement. Yet again, my CF team have to go into school and repeat themselves. I feel like we are fighting a losing battle with them and that the CF team are wasting their time having to repeat the same things over and over.

In schools pupils are just a number. A number on attendance records, a percentage on grade results. It’s a shame that schools are more cautious of Ofsted reports then they are pupils well being. To me Counthill has given me and my parents more hassle then going there was ever worth. I’ve witnessed racist violence and i am not just talking a push and punch fight, i mean full blown brawl with chairs being thrown and people being stabbed.
How are pupils supposed to feel safe in a war zone like that?
Something that i struggle to understand is the plan to merge two schools that are at war with each other constantly, surely this new academy will be turned upside down by the fights that will be taking place in there. I for one am glad that i only have a couple more months at the school and then i will be going to Oldham Sixth Form.

I think the whole ‘attendance’ thing is something that CF sufferers and many other people with illnesses have trouble with. Thus, adding to my list of reasons for me to believe that pupils are just a number.

Well my rant is over now, i just thought i’d raise awareness of how Counthill show support to their pupils.
Take Care,
Sophie xoxo

View Post