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 ...
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
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  1. Its called GIVE! an TAKE! Sophie and sometimes i think friends are very good at TAKING!!! the suport you give a shoulder to cry on a friend to talk to when they are down but because you are always the happy bubbley person that you are i dont think they realise that you also need some of the GIVE!!! frindship is a partnership and without Give! the TAKE! cant survive so true friends who read your blogs although it might touch a nerve will know that you love them to bits but you also need them to be there for you and i am sure they will be. Another geat read hun stight from the heart.xxxxxx

  2. Hey
    The friendship thing varies i have found. Some will come and visit you, others just wont. Everyone is a different type of friend and deals with things differently. I hope you find some friends who can be there for you fully. Sometimes all it takes is just spelling out to them what you need, like you say, a text isn't much of an effort on their part but can be so appreciated.
    Great blog by the way. :-) Keep it up, it's very cathartic i find.

  3. yes I have friends like that, as you get older you will have a few friends who are less shallow and will slow down with you when you are feeling ill xx

  4. give me 1 good friend over 20 people(so called friends)I can have a laugh with any day. Some teens are incredibly selfish(some adults come to think of it)cant be helped really, people are what they are.

    Nobody could ever know what its like to be you, these blogs are great cause it gives us glimmer of your life warts n all. You come across as such a tough cookie everything you've been through and you still smile! Can't do any harm to remind them you are human with the same needs as everyone else.

    I would have loved to have had you as a friend when i was your age, don't they know how lucky they are? xx