30 March 2011
28 March 2011
This isnt going to be the happiest post. Just a warning. If you want happy, I'd skip this entry. =)
I feel like I'm breaking down, if I'm honest.
I'm constantly trying to seem okay. People ask how I'm feeling and I automatically answer, 'Oh I'm okay.' Or, 'I'm good thanks'. All the time. Even when I'm hospital, I'm telling people I'm good. Its a blatant lie, and everyone knows it, or I wouldnt be here. But people accept it. For the same reason I say it. Because at the end of the day, its easier than facing the truth. Denial is easier than acceptance.
How am I really? Well thats hard to explain.
I'm fed up, and frustrated. I'm sick of my life revolving around CF and Hospital.
Since February 2010 I've had 9 courses of IV antibiotics. I've spent a total of 6 weeks on home IVs. And 15 weeks in hospital. Thats 21 weeks on IVs... In the space of 13 months.
And I'm 20 years old. This isnt the life I imagined having, when I was growing up.
I'm angry. Angry at CF, not only for what it does to me, but for my friends. Because its taken away some amazing people, taken my friends, and because I have to watch while other friends suffer.
If I could stop it hurting everyone else, I wouldnt care how sick I was.
And I'm scared, because I dont want to be ill. I dont want to suffer. No one wants that.
Plus it scares me, how little everything surprises me anymore. I'm used to feeling ill. I'm used to coughing up blood. I'm surprised when I'm not in pain.
I'm in hospital at the minute. I'm feeling fairly good, its nearly time to go home. Thats a good thing right... But its also scary. I have a lung function of 47% at the minute. My lungs are working 47% as well as they should be, and I feel good...? I'm learning to function on this level. Its a good thing for me really in the long run, but seriously, if you think about it, and you were so used to being ill that your body was used to it... Its a fairly confusing feeling.
I dont know if I'm really making sense.
And I'm lonely. Both literally, and emotionally. I'm lonely because I'm in hospital, and other than my parents, the only person I've seen is Gavin. I love him to bits for coming to see me, I certainly didnt expect him to.
And I know its not always easy for people to get here, but even just a text, a quick message on facebook, an email, a phone call... Anything. But a lot of people dont seem to bother, I only hear from them if I start things off. Just for a change it'd be nice if people seemed interested in me, without me chasing them.
I know a couple of the other patients on the ward. But its not the same. Cross infection rules means I cant really see them much, as much as I'd like to. Jordy and Daren are both here. I care about them both deeply, but I cant even stand in their doorways to chat without getting moaned at by the staff. If anything that makes it worse. To have friends so close, and not be able to see them.
Cross infection rules are for everyones safety, I know. But they suck. I dont see what harm standing in someones doorway for ten minutes for a chat can do, when they are sat at least a good 10ft away, as far as we know we grow the same bugs, and we're both adults who know not to be coughing and spluttering over each other.
I'm sure the positive effect of a friendly face and a giggle would far outweigh the tiny risk involved. Lol. Rules seem so harsh at times. Oh well.
And emotionally, it gets lonely. I never know who to talk to, how much to tell people, how far to let people into my world. I dont like to burden my family with all my thoughts and fears and emotions. As much as I know they wouldnt mind, I dont want them to worry.
But, people will ask how I am. And I will go on replying with okay, or alright, or good. Because who really wants to answer with, 'Well actually I'm frustrated, angry, scared, and lonely. How're you?'
25 March 2011
24 March 2011
The consultant was moaning about how I have so many allergies, because I cant have;
And now we're adding Tazocin to that list. And Tobramycin because of my recent tinnitus issues.
But I still dont want to suffer on drugs I react to, just because it makes things a little more complicated. There is LOADS of IVs they can give me still. They just have to think a bit harder!
I'm on Timentin now anyway. =)
My lung functions hadnt improved yesterday, so it didnt take too much convincing to get them to change the drugs. In fact, they'd actually managed to drop another 2%.
Now I know 2% isnt a big drop... But its still NOT the right direction for my lung function to be going half way into a course of IVs!
I've been struggling with my own emotions the last few days. I'm just missing home. I want my parents, and my friends, and a hug. Not had any visitors since sunday, and wont until saturday. Its hard.
I'm just miserable, and stupidly emotional.
I cried at scrubs last night. LOL!
Stiv and Gavin have been amazing, putting up with my constant harassing them and texting, listening to all my moaning. I love them for it, I couldnt cope without them.
Its helped having Nathan next door to talk to as well. And Daren is around. We've had a few giggles the last few days. We do have some very interesting conversations!
Oh, and Sammie gave me a packet of jelly.
I'm not even gonna try and explain that one... Haha!
I've managed to get out and off the ward a lot today, and enjoy the sunshine. The weather has been amazing. I was wandering around the village today, in a vest top, in march! I walked down to the park and sat on the swings for a while, took advantage of the phone signal and send lots of texts, and rang Pete to say hi. =)
And bought a mini tub of rolo ice cream on the way back. YUM.
I've been trying to do lots of walking, practice for this sponsored walk. And I do love just putting my headphones in, and just walking anyway. Forgetting the world, and vanishing into my music.
22 March 2011
So, Papworth is lovely as ever.
I'm not getting on great with the drugs. They put me on Tazocin. And I've had a sore throat for the last 3 days.
Now, their answer is to say its a viral thing, or possibly thrush. And not listen to a word I say.
Personally, i think its a reaction to the Tazocin. Because it gets worse with each dose, every time. And immediately with each dose I'm getting tingling in my lips and tongue, and burning tickly feeling in my throat.
But hey, I'm only the patient, so what do I know.
I'll stick it out til tomorrow, when I see the consultant. But I'm not happy. I've been dealing with hospital admissions and IVs for 6 years... I KNOW when something isnt right.
Mum and Dad came up sunday to see me. We went on a walk, and walked EVERYWHERE. Lol. Was a lovely day.
The weather has been amazing, which is kinda depressing while I'm stuck in my room attached to the aminophylline drip. Lol. But its nice when I do manage to escape for a few minutes. =)
Anyway, this isnt gonna be a long blog.
Dosed up on Piriton, to try and help the stupid tazocin. It keeps making my mood swing between hyper, and sleepy. And apparently piriton makes me irritable. Lol.
17 March 2011
My second home.
Feels like my main home sometimes. Lol.
Ironically... Back in the same room I was stuck in for 4 weeks in January. Haha! I seem to end up in here a lot. Perhaps I should like, paint, and decorate, and make it my own.
My lung functions today were 44%. So not my worst, because they were 36% in December. But also not even close to as good as in clinic a couple of weeks ago. =(
Theyve put me on Aminophylline again, so I'm attached to the drip, but I dont mind too much, because it does help. And I'm on Tazocin and Imipenem for now. And theyve started me on potassium because apparently my potassium is low. I dont know what that means... (Note to self: Google potassium)
Nathan is next door, so at least I have a friendly face from time to time. We need to learn morse code! Lol.
Not typing a massive long post, cos my joints are playing up, and my fingers hurt. =/
16 March 2011
The virus decided to take up residence in hotel Jenni. And as such, my lungs are throwing a little hissy fit. *Sigh*
So, its back into Pappynappyworth tomorrow, for the usual cocktail of drugs, to try and sort myself out.
Hopefully we'll catch it early enough, and it wont be a particularly long stay.
It was strange, went out sunday night feeling slightly rough. And by monday morning I felt terrible.
On the plus side, sunday night was a giggle. Getting rugby tackled by Pete, trying to get his shoe back. Too slow though. It was on the roof at one point, thanks to Ricci. Hehe. In fairness, he threw it at me in the first place, deserved everything he got.
I tried to steal Ricci's beer. Bad plan.
I believe Ricci tried to give Amy a shower in beer at some point too. Things are a little fuzzy. Apparently the alcohol affected me more than I recall! Haha. I do remember the sofa cushions being turned upside down because they were covered in alcohol though. Good times.
Went and bought 6 bottles of orange lucozade this afternoon, ready for taking to hospital with me. Drunk two already. Oops. =/
Also eaten 2 of the bags of sweets I bought.
Ah well. I need to go and pack stuff really.
I've got a few bits.
I've packed 8 DVDs so far, and some socks. Haha. But I suppose, clothes, and underwear, and pjs... Might be handy. Maybe.
14 March 2011
So I thought I'd write down whats in my head.
It still amazes me, the amount of stuff I'm on now, In comparison to a couple of years ago.
Creon 10000 - Every time I eat
Azithromycin 250mg (Antibiotic) - Once a day
Septrin 960mg (Antibiotic) - Twice a day
Carbocistine 750mg - Twice a day
Uniphyllin 200mg - Twice a day
Ursodeoxcholic Acid 900mg (Liver) - Once a day
Esomeprazole 40mg - Twice a day
Domperidone 20mg - Three times a day
Ranitidine 150mg - Twice a day
Vitamin E - Once a day
MultiVitamin BPC - Once a day
Vitamin K - Once a day
Calcichew D3 Forte - Twice a day
Sodium Docusate 200mg - Twice/Three times a day
Qvar (Inhaler) - Twice a day
Salmeterol (Inhaler) - Twice a day
Spiriva (Inhaler) - Once a day
Salbutamol (Inhaler) - Three times a day + When required
Hypertonic Saline (Nebuliser) - Twice a day
And that is just the regular stuff for when I'm well, no extra antibiotics, no steroids, no painkillers.
It drives me mad when people complain about taking a course of antibiotics for a week. Selfish I know. And I generally keep quiet. But it really does annoy me at times. Lol.
On some days you can add any of the following:
Prednisolone 40mg (Steroid)
Flucloxacillin 1g (Antibiotic) - Four times a day
Tranexamic Acid (when coughing up blood) - Three times a day
Salbutamol Nebuliser - Four times day
Ondansetron for sickness - Four times a day
Levopromezine for sickness (Spelling?) - Twice a day
Ibuprofen/Paracetamol/Diclofenac for sinus/joint/chest/stomach pain - As many times as I can get away with
Selection of IV drugs
This is the part that people who dont have CF, cant always understand. Even my family dont really get it still. People assume, that being 'well' is easy, you just feel good, and sit around feeling 'normal'.
It doesnt work that way. CF doesnt disappear just because you're not feeling particularly bad that day. Its still there, and you're still fighting it every single day.
Just some days, you win.
Some days, it does.
When its winning, its harder, theres more to do, extra stuff to remember, when you're already struggling.
And people forget you still need support when you're at home. Because if anything, hospital is easy. Sure, it sucks being away from the people you care about, but someone else takes control for a little while. When you come home, you have to find your routine again, start managing all these things you need to do, and take.
Anyway, I'm done I think. Lol.
Guess I'm just thinking a lot today.
I dont feel 100%, mums got a virus, and I think I'm picking it up. I dont want it, because it will put me in the hospital. =/
Stupid body. You'd think it could learn to protect itself a little better. I'm holding up my end of the bargain, just wish it would work a little harder on its end.
13 March 2011
I'd like to thank all those of you who complimented me on my last blog entry.
I must admit to shedding a few tears while writing it. And I edited it an insane number of times before I was satisfied with it. =)
Marc was a massive influence on me and my life, as well as one of the greatest people I've ever met, and I just am glad that I've found some way to honour him.
It may not be a marathon, but who knows... Maybe one day ;) Haha!
If you could give me a hand with the weather on the day Markey... Hehe.
Sleep tight, big brother xx
As for me, I'm pretty good.
Stomach is still playing up when I eat. But providing I dont eat loads in one go, I can manage the pain, and hopefully papworth can help me work out the problem next week.
Lungs are still behaving! 7 weeks home and counting... I'm very impressed, this is the longest in quite a while! If they could hold out another few weeks, that would be nice. Ideally, I'd like IVs in the middle of April, so I dont risk being ill when I'm supposed to be walking!
But this is me. So we'll see. Lol. Last time I did a sponsored walk was 2009, with Matt, and that time I was an inpatient and had to get picked up from Papworth in the morning. Haha.
I'm just on the countdown to my annual review now anyway. Not looking forward to that. Its just such a long day. I have to be at Papworth by 8.15. Which means being ready to leave the house by 7 ish.
I'm not a morning person. In the slightest. Haha.
Also, RYAN PASSED HIS DRIVING TEST!
On thursday. I should have mentioned it by now, but thursday was a rough day.
I'm very proud of him. He passed first time. And hes still only 17! =)
Just a shame he cant afford to insure a car yet... Bless him! Haha. He'll get there though.
11 March 2011
So, I've mentioned it before.
On the 8th May 2011, I will be taking part in a sponsored walk for the CF Trust along with 2 friends.
Ellis, and Danni.
Ellis also has CF, and in August 2010 she was lucky enough to get a Heart and Double Lung transplant. Every single day I am grateful to the donor and their family, who gave Ellis back to us, and gave her another chance at life.
We met Danni in hospital, on our childrens ward, because she had pleurisy. Her mum works on the childrens ward as a play specialist, and Danni's got to know many people with CF.
I love them both so much, and cannot imagine a life which they are not part of. And I thank them so much for agreeing to join me in this.
Today I thought I'd explain some of the reasons I wanted to do this walk.
He was my main inspiration for wanting to do this.
I met Marc in Papworth hospital, and he was an amazing guy. We soon became good friends, talking, texting, msn-ing pretty much every day. If I didnt speak to him for a couple of days, I'd get a message telling me off. LOL!
I remember him telling me how he wanted to propose to his girlfriend, Marie. I was over the moon when I got the text, out of the blue, to tell me they were engaged.
Marc always used to refer to me as his 'little sister', and to be honest, I suppose I thought of him like a brother. I trusted him with my life, and told him absolutely everything. If I'd had a big brother, I could not have asked for anyone better. He will always be my big brother.
Unfortunately, on the 8th July 2009, he was taken away from us.
I loved him, and I miss him every single day. Hes left a hole in my life and my heart, which no one will ever quite be big enough to fill.
Marc used to run Marathons.
There is no way I could run a marathon right now. It is going to be near impossible to walk 10km, but if there is one thing he taught me, its that you can do anything, if you put your mind to it.
So this is for him. It may not be much, but its the best I can do right now. I do this in his memory.
And the memory of all my other CF friends, who have left us far too soon.
Its a list, which unfortunately just keeps on growing.
And these are just a few, of the people with CF who lose their fight each year. Each month. Each week. Each day.
These werent 'old' people. Some of these people were lucky enough to reach their 30's. Others weren't.
Georgie was 17.
Jordan was 15.
Shahara hadnt even started high school.
These are people who should have had their whole lives in front of them.
People who were Husbands and Wives. Sons and Daughters. Brothers and Sisters. They left behind people who loved them dearly.
So... I'm walking, for those who can't.
I'm walking, to raise money for the CF Trust. And more importantly if anything, to raise awareness.
There are still far too many people, who have no idea what CF is, or what it means. I'd really love this to change.
It affects about 8000 people in this country, it should be much better known than it is.
When will CF stand for cure found?
And in the mean time, how many people have to die waiting for a transplant?
We desperately need more Organ Donors.
Ellis got lucky, she got her transplant, although still at the very last minute.
Lots of other people arent so lucky.
Live Life Then Give Life.
If anyone can spare a few pound to sponsor us, that would be greatly received, because every little bit helps.
I dont expect everyone to sponsor us. Its not practical, I know. (Although, I'd totally love it. Lol.)
But if reading this, gets you thinking or better yet, talking about Cystic Fibrosis, and Organ Donation, then that makes me just as happy.
Because awareness is important too!
10 March 2011
9 March 2011
Yes, I am weird.
Urgh, it is majorly sucky when you let someone into your head, tell them all your feelings.
And they throw it back in your face to hurt you.
Yes, I said sucky. Deal with it. Sucky can be substituted for one of many rude words if you wish.
Not impressed tbh.
Thats the last time I let you into my world.
Sooo, the pain is back with a vengance. Every time I eat more than a 2 year old, I'm in agony. Time to give up eating again. Also, this means Pancake day passed, and I didnt have a single pancake. =/ Bad times, guys, bad times.
Looks like I will be paying papworth a visit, if they remember me. I may not stay long if my chest is okay, but I could do with them looking into this stomach issue. I've tried all my methods. Gah.
Chest is starting to play up anyway... We wont even discuss what I was coughing up the last couple of days. = Better out than in, I know. But still not pleasant. Not wonder my lungs are so screwed if thats what theyre keeping down there! Haha.
AND my joints are playing up. God, I love my body. Not. *Rolls eyes*
Spend most the day, walking round like someone whos about 70. If it can be classed as walking. Lol.
I'm currently sat here listening to my cat meowing angrily at my bedroom door. Normally he comes in a sits/sleeps on my windowsill, as thats his current favourite place.
However, I have about 80 dvds sat on my windowsill. And was woken up at 4am this morning, by about 20 dvds hitting the floor, because he'd decided he wanted to be on TOP of a pile of them.
Normally this would be funny. But seeing as I was asleep, and woken up by the crash as it all hit the floor, I wasnt impressed. Being asleep meant I also missed the sight of him falling, which wouldve made it better, for me. Lol.
So tonight, he can just stay out there and meow.
I'm seriously considering packing him up and sending him to live with Pete, seeing as Pete seems to love him so much. And asks about him like, hourly. Lol.
Anyway, that is all for tonight I think.
Besides, Stiv keeps texting me and telling me to go to sleep. LOL. Bless him. Does he not realise 1am is early for me. Hehe.
Do love him though, hes been there for me lots recently. =)
Lovelove everyone xx
6 March 2011
Toi, is going to be doing a Skydive, for the CF Trust, because her boyfriend Daren has CF.
I know Daren from Papworth, he was one of the first friends I made there. They are both amazing people.
Jumping out of a plane, is a big deal regardless. But for an 18 year old girl, who is afraid of heights, its gonna take every little bit of courage she has.
Was a good night. 8 of us went in the end.
Me, Liz, Lauren, Grace, Ria, Emma, Gemma and Vicki.
Sam was supposed to be coming, but her little girls not been too well for a few days.
Originally, the plan was to go to Nando's, but you cannot book a table at the weekend. Which is bloody stupid tbh. When we got there, it was gonna be a 2 hour wait, just to even get a table. So in the end we had out dinner in the White House. (Wetherspoons)
It was pretty good, but not Nandos. Lol.
Food was irrelvant though really, was just good to see everyone. We couldve ended up in McDonalds and not really cared. Except, McDonalds does not serve alcohol. ;)
I didnt want to come home after, lol. Was on such a high. Which is just proof that my health is the best its been in a while. Normally I'm desperate for the night to end when I'm out, just so I can get home without being the party-pooper. Haha.
Definately not going to leave it so long til next time. If nothing comes up beforehand, I'll plan something in July. Because Liz and Lauren have 21st birthdays in July. And Gemma will have her 20th. So will Sam.
Julys gonna be an expensive month. *Sigh* Thats only the college birthdays. Theres Pete, and Ellis. And Clairey.
And, 2 more sleeps til Pancake day! ;) LOL!
4 March 2011
Interview with the very lovely Kirstie Mills. =) And the link to her blog.
Urgh, hypo'd this morning, fairly epically.
I havent had a hypo for a little while now. Which, is good seeing as I'm NOT even diabetic. But I've been stubbornly 'borderline' for about 3 years now. Its usually only if I'm particularly ill, or on steroids that they play up noticeablely though.
But this morning, I get up, wander round, take my pills... The usual. Feeling a little tired, but thats the usual too. Then I notice I'm a little shakey, when I cant put my pills in my mouth. And then out of nowhere, I'm shaking big time, dizzy, feeling faint, and I cant see properly because everythings gone fuzzy.
NOT fun. Especially not when I'm the only person in the house.
Oh well, better now. Still feel a little weak and not quite right. But at least I can see!
I'm supposed to be going into Papworth at the end of next week, for a week of IVs before my annual review. Butttt, I really dont feel like I need it at the minute.
If we hadnt planned for it, I'd have been a mess by now, sods law. Lol.
Sure, I dont feel great. But by my usual standards I'm pretty good! And pumping myself full of drugs seems a waste of time, as does being stuck in hospital, and taking up a bed someone else needs.
I wont cancel yet, because this is me, and I'm not tempting fate! A week is plenty long enough for me to go downhill. But if I still feel good next week, I am not going in. =)
Would be nice to turn down a bed, rather than be desperate for one, just for a change.
Sponsored Walk - Justgiving Page. =)
2 March 2011
I read it a long time ago, but its not something I ever thought to share with her. I wish I had, because I think its suddenly given her a slight insight into just how I feel somedays. I've tried to explain before, but I think that did the job for more eloquently than I ever could.
For those of you, who have no idea what I'm talking about...
I actually got up today, with a bit of energy, quite a lot of energy by my usual standards. So I found some determination, and decided to help out around the house.
I did 4 loads of washing, and put away all the dry washing. Hoovered the whole house, with the exception of Ryans room, because I never venture in there alone. Lol. Sorted all the boxes from under my bed. Washed and changed my bed sheets. Cleaned the kitchen, and filled, emptied and refilled the dishwasher.
And then cooked dinner for everyone. And washed up.
Unfortunately, I forgot to actually leave myself enough energy to eat my own dinner, so I guess I'll attempt eating again later. Oops.
Very domesticated. But possibly a little stupid.
No doubt I will pay for al this tomorrow. Lol.
Majorly looking forward to saturday now. I am in desperate need of some 'girly time', and quite excited to see all the college girls. =)
Sleep tight now, Lou.
We'll miss you, special lady. The sky has an extra star now, shining bright.
1 March 2011
How cute is heeee? =)
Hehe. Dad bought him for me. I saw him in Toys R Us, and fell in love. He snuck back another day and brought him home for me. My parents are so sweet sometimes.
Dont ask why hes called Slush, I dont know. Ask the beanie baby people. Hes still cute.
Everything been okay the last couple of days. Not good, not bad. The pains starting to ease a little, so I can eat. But my appetites not really come back. =/ Ah well. I'm only losing what I'd gained, so its too terrible.