Ups and Downs...

So I've not blogged for ages!! I've not really known what to write up until now, but even now I'm not totally sure so this might be a bit of a random post, well see!

My emotions have been a struggle lately to say the least. Normally I'm good at keeping myself in check, i keep a diary of my own and anything gets written down in there, I've read back on some things and it doesn't even make much sense, but i guess at the time of writing it, it made me feel better so I'm not bothered. That diary is for me anyway and so others don't need to understand it.

For some reason i just stopped writing. I became very low and didn't really care about much. I wasn't very well which didn't help my low mood and i was snapping a lot at people who didn't deserve to be snapped at. I wasn't able to keep food down, unless it was ice cream or ice lollies. I was drinking tons but still became severely dehydrated and it ended up making my lips dry out so much at night that they would split and bleed. They became really quite sore and i used to use vaseline to heal my lips when this happened in the past but being on overnight oxygen now i couldn't do that, so i was struggling as i couldn't find a cream that would help me that wasn't going to also make my face explode :|

I wasn't sleeping so i was becoming more low by the day really, sleep only seemed to want to come to me at the most inconvenient times during the day and i had to relent most of the time and give in to it as i was pretty much propping my eyes open with matchsticks most days. My chest was drying up and was so painful as i kept getting plugs and random muscle spasms. The only thing that seemed to help my chest was hot water bottles and laying on my side. If i did any nebuliser it felt like it made my chest so tight and i just couldn't breathe properly afterwards. So i gave up.

I still have the wheelchair on loan from the red cross but it goes back at the end of this month so ill more than likely become a recluse again which will send my mood down again. I cant manage walking up the stairs properly i have to stop half way.

I went to clinic when i was really quite unwell and they wanted me in, i refused as i didn't think i needed IVs i just needed to keep my food down and get some sleep! I was exhausted. They prescribed me some orals I've not had before as i insisted that the ones they keep giving me now don't really do anything and the Cipro makes me throw up even more now. I also got some anti sickness pills. I started taking them that night and after a few days they seemed to be doing the trick. I managed to start keeping cereal down and eventually got up to having proper meals again.

I'm now keeping food down, my mood has really picked up, and I'm sleeping again! I went back to clinic the other day and was given some very mild anti depressants which also act as a sedative so they are helping me to sleep which is doing me the world of good it feels! They are also to help with my mood as its still not good but its improving slowly so well see how i go.

I'm going to do a separate blog about my recent clinic appointment as there was a big decisions made by me and i want to talk properly about it.

messy head

I don't know what this blog is about exactly but i need to clear my head somehow.

Its like my head is really full up with everything and i just cant clear my head. Its affecting my sleep, and stressing me out so now i can feel myself going down hill again just when id been making some good progress. Progress which the hospital didn't see as its all happened between appointments and so i know they wont fully believe me that things did improve for a while.

I'm stuck in a slump and once again I'm not sure how to get out of it. I have everything in my head on a "i could do this tomorrow" sort of list, but i just keep waking up and thinking "oh good, same crap, different day." Which is not how i want to be waking up! The weekends are better as i know I've got company 'coz mums not at work. I'm extremely looking forward to the summer holidays that the schools have just so mums at home and I've got someone to spend time with and do things with!

I'm really trying to get myself back onto my schedule of Neb's etc, I'm just finding it hard to get motivated. You think the fact that i know not doing my treatments regularly will make me worse would be something to motivate me. I don't want to end up on a transplant list, i don't want to get sicker than i already am, i want to do so much with my life, but at the moment i just cant get motivated or energised to do anything! All i seem to be able to do is sit around in my pj's all day, and I'm either just plain emotional and wanting to cry all the time over heaven knows what, or i just feel really angry at everything. Literally everything including my oxygen tubing, i got so pissed off with it the other night, being so hot on my face and being uncomfy with it i ripped it off my face and threw it across the room.

I want to know people but i don't know how to go about it because I'm not confident to go out on my own lately 'coz all i do is choke and stop every 5 mins. I hate being stared at like I've got some catching disease or something.

Maybe i just need to start writing things down a lot more, not always on here, some things i feel are too personal to put on here. Besides i don't actually think anyone really reads this blog apart from one person i know of.

Sometimes i wonder whats the point.

Daily Trials

So I'm still not much better. I mentioned in my last post about the terrifying possibility of needing a PEG soon as i cant keep weight on if i can manage to gain it at all that is.

I was feeling optimistic about the fact that i might not need it as i was feeling like my eating was starting to pick up a bit each day. But the past like week maybe, those optimistic thoughts have been diminishing daily. Although I've been trying my utmost hardest to eat and eat little and often as having the regular large meals and snacks in between wasn't working for me. But i keep throwing up :(
Sometimes its because I've coughed too hard and too much as i couldn't catch my breath in the morning when i first wake up, sometimes its just random and just happens. Its usually those times that are the worst and most violent :(

I couldn't sleep the other night as all i was thinking about was this stupid PEG. They say things come in threes. The first was my port, indicating to me that my veins are rubbish now and there's a future waiting for me containing more IVs. Now the second is a PEG... what the hells next?! I hate to think.

I feel incredibly frustrated about everything that's happening. Its like I've lost control of my own body and i hate it. Its quite scary sometimes really. I don't feel like theres much point telling the team any of this because A. they wouldn't actually get it as much as they write things down and say "yes i understand" they just don't get the emotional part of living with a debilitating disease that sucks the life out of you some days that all you feel you can do is sit there and just cry and cry. and B. There isn't anything they can do about this, so whats the point in telling them? ...

I wish more than anything now that i didn't have to do Uni. I just don't have the stamina left for it anymore. One day at uni and I'm shattered i can sleep for 2 days! And with some assignments due and some waiting to be set doesn't help get my stress level down. The Uni don't help much with regards to things like extensions as they don't offer them no matter the circumstance. If you were in a coma and had an assignment due in before you went into said coma, they would fail you for not having for seen said coma and handed in the work early, and charge you £50 to resit and cap you at 40% . That's how helpful the Uni are.

I tried to have a nice normal day out shopping with mum yesterday and i felt fine when i woke up, managed to take a shower and was a bit knackered out after that, but still managed to do my physio and have breakfast. Felt fine on the train to Bristol, and then when i got there started to feel a bit sick. Thought i was just a bit thirsty so we went for a coffee first, i had a lemonade as that usually helps to combat sickness feeling for me. But it didn't work and as the day wore on i felt progressively worse and more strangled for breath when walking. I had to keep sitting down in the shops while i told mum to go have a look and ill catch up with her. By the time i caught up she was finished and i wasn't in the mood to have a look for myself. I thought maybe i was just hungry and so we went for lunch at a place we love called Bella Italia. Got a pasta dish i know i like and shared it with mum. Barely managed 3 forkfuls of food, before i went to the toilets and promptly threw up everything from breakfast to right then. Although i felt a bit better, i was then incredibly hungry but still unable to eat anything and had a very sore stomach and throat :( Paid up at lunch and i tried some more shops as i didn't want to ruin mums first weekend out in a long time any more than i already had. I managed about another 3 shops maybe and couldn't go on and so we went home early.

I still feel bad about it now the next day even though i know we can always go back and finish the shops we didn't get to another weekend, but that's not the point for me.

I'm just so fed up with pretty much everything right now. Plus with Annual Review as my next appointment now i don't think things will be getting much better. In my opinion even if i do manage to put weight on it wont show at the appointment 'coz i have to starve myself for them stupid blood tests and if it does show its gone up it still wont be enough for them to piss off and leave me alone.

Weight

I had an appointment recently and things are good and bad really. For once my efforts have been paying off and I've gone from 38% lung function up to 45%. Which still isn't the best, but its heading in the direction i need it to go, so ill take it for now and just work a bit harder to get it further increased.

Weight is a huge problem for me right now. Its getting me quite low and really frustrated. I cant seem to gain any weight on my own. I'm about 46kg right now and the dietician keeps going on about how I'm so underweight. Doesn't she think i know that!! I'm not that keen on my dietician especially after that remark she made once about being able to teach anatomy with my arms 'coz they are so skinny.

Ive been given 6 weeks until my next appointment and if I've not gained weight enough for them to be remotely happy then I'm in serious discussions about getting a PEG. This i really obviously do not want!!

Its just extremely frustrating beyond words, that I'm eating and eating and its just not sticking to me at all. I'm even making myself drink my Ensure+ shakes again and I'm trying to use Maxijul powder again in my drinks and things like cup a soups i have at lunch time. I had to give a full rendition of what id eaten for the past week to the dietician which pisses me off when i have to do that, as even if I've sat and eaten like 6 full on family sized cakes all to myself everyday she still isn't happy with me! I give up with her. I don't listen to her really, just glaze over and think about where id rather be. Its not as if she gives me any advice to listen to anyway!

I had the PEG feed talk every time I've been there for the past like month now, and its really pissing me off that they wont take "no" for an answer. I said i don't want NG feeding coz i just cant handle the thought of it let alone actually having it happen. So they've now moved onto PEG feeding. Which is worse, so god knows where their thinking is that I'm going to say "yes" to this when i already said "no" to NG feeding.

I realise it would help me out greatly and if my weight went up then it would help me out a lot with other things as well. But i just don't think PEG feeding is the way for me to be going yet. Its like an instinct that's telling me i don't need that yet and to stick to my guns about doing this myself. Imagine how pleased ill feel if i can get back to 54kg on my own without interference from another horrid foreign body in me. I understand that some people are just not in a position to say no to such help, and i might well be one of them people one day, i just don't know. But while I've got the chance to do this on my own, and feel my own work and efforts paying off myself then I'm going to take it.

The Dr, as nice and lovely as she is, explained in a better way why they want me to do tube feeding. She said that if I'm ever in the unfortunate position to need a lung transplant, then there is the strict rules to follow for weight amongst other things. Which i fully understand and do comprehend to an extent (without being in such a position i can only understand it to an extent i think) but it almost felt like she was slightly using that what she said as a scare to get me to do tube feeding.

Even if at my next appointment I've gained weight, I'm still going to look into PEG feeding while I've got the chance to ask all i can think of to ask, then if the time comes that i really really do need it, then I've got a lot of info and its not all going to be new to me like now. Perhaps it will terrify me less as well.

been a tough time of late...

I dont really remember what my last blog was about, so forgive me for anything i repeat.

Ive been really ill lately. Its THE worst infection ive ever had. It started with me getting a simple cold, which went as usual down onto my chest and decided to set up camp there :( I got progressively worse, and ended up on IVs much to my annoyance. I was on orals before hand, which were doing the trick combined with being compliant and regularly going to the gym, then i got that cold and it was all down hill from there really.

My lung function has dropped to its all time lowest, and is sitting at 39% at the moment, so everything is a real struggle. Mums been great, helping me to wash, washing my hair, helping me to keep up eating and drinking. Generally trying to keep me warm and feel the best i possibly can when feeling like crap if that makes sense. I didnt go into hospital straight away as i wanted to stay at home, and keep gaining weight, as that was the only thing that had gone up. But i ended up getting worse that i had no choice to go into hospital.

I went to town with mum on the 5th and walked up from the bottom of town to get a taxi home, when i had to stop and catch my breath coz it was really cold as well so that makes it extra harder. I ended up having a coughing fit, and coughing up a serious amount of blood. Cue freaking out!! I had never before coughed up that much, the most id ever coughed up before was a streak or two. Nothing huge at all! So to be stood outside the taxi rank coughing up loads of blood, and proper freaking out i was not in a good way. Thankfully i was with mum so she was helping me to keep calm and try to stop coughing so much to stop the blood. I got home and went to sleep on the sofa. As i had clinic the day after i didnt worry too much about ringing the hospital. I told them all when i got the hospital and they wanted me to go in that day but it wasnt really feasable as it meant going home to get things, and then coming all the way back. No way we could afford that or that i could manage it on the train again, i only just made it there in the first place!! So we agreed that id go home, they would ring every day to check on me, and if anything else happened or more blood then i would tell them and go in more than likely.

Just my luck i had my second episode of coughing up loads of blood again on monday evening. I woke up from sleeping on the sofa and was extremely hot from having a raging temperature, started coughing and had to run for the bathroom to cough up blood :| Not nice. I decided then to take a bag in with me to hospital the next day. I rang the clinic in the morning, left a message for the dr to ring me and left for my journey to hospital, thankfully again mum was with me, as she had rung up work and said she couldnt go in due to having to take me into hospital.

I was admitted that day, there was a right fiasco with waiting for the bed to get sorted, but i cant be bothered to go into that right now. I will say that i didnt get into my room until five to midnight tuesday, was severly pissed off and felt like total crap beyond words can describe!!
While in hospital i had my obs being done every hour as my heart rate was through the roof, so i ended up having to have an ECG and seeing the on call dr. She ordered me an xray, which i was finally taken down for around midnight wednesday night i think it was!! Not a happy bunny as i didnt get to bed until about 1am that night!! Once again pissed off. No wonder my heart rate was through the roof!
I was being ploughed with paracetamol as my temp went up to 39 degrees! I was freezing one minute, dripping with sweat the next!! Couldnt win, rather uncomfy as well :(
My sats were sitting around 90 which granted isnt as low as some peoples ive seen, but its very unusual for them to be like that, so they put me on 2 litres of oxygen as well. First time ive ever been on oxygen and so i was a little freaked out by it all! The tube thing is SO annoying to go to sleep wearing :| and as that was when my sats dropped even more i had to sleep with it on. Thankfully by Thursday i hadnt coughed up any more blood since admission due to some nifty tablets i was put on to help stop the bleeeding and settle my chest, my temp was a bit more stable without paracetamols, my heart rate was down to 118, still not great but thats normal for me really. Also my sats were sitting comforatably around 97 again without oxygen.

Dr came to see me on friday morning, as i was finally awake when they did rounds. and said that i was looking so much better since she saw me on admission day, and to be perfectly honest i felt so much better!! i had slept a fair amount which i deffinetly think helped me loads. Sleep is the best medicine... as well as laughter :p
So it was agreed that i could go home that day, and as i still had all my IV stuff at home it was the shortest discharge in history :D

Im still not better, and im still on IVs, but i am feeling SO much better now!! Im still sleeping a lot, but thats okay. My appetite is picking up loads as well which is great! Ive got a long way to go, to feeling miles better that i want to feel but i think ill get there eventually...

days like today...

I had a hospital appointment on friday just gone (29th October) and i knew it wasnt going to go well weeks before the date even arrived. Partly my own fault and partly due to the cold weather starting to set in and that always makes me rougher than normal. At my last appointment i had 55% lung function and that was the best it had been since May this year! Hence them being happy and didnt need to see my until 3 months later, which was the 29th Oct appointment. My lung functions now down to 45% and my weight has dropped .6 of a kg... now making me weigh in at about 47kg! Light as a feather.

I had to see a "doctor" i dont like. I say doctor in quote marks as i dont think she is a real CF doc, not like the other one i see. I really dont like her, i find her so patronising and she doesnt listen one bit. Not the best thing to not listen to the patient when surely they are the best ones to know really how they are feeling?!

Anyway i had a right attitude problem with her and with the dietician as thats what happens with me, if i dont like them my attitude comes out loud and clear and im not a pleasant person at all.
Sometimes i feel a bit bad when i know they are just trying to do their jobs, but then when they ask me stupid questions like "so do you have an increased cough?" after ive just told her how bad ive been lately with not doing nebs and things and also seeing that my l.f has dropped a further 10%, i dont feel so bad any more.

The dietician tried to get me to talk to her about having NG feeding tubes. I told her the same as i told her when i was in hospital - no way! - i realise it would help me to gain weight considerably, but i just cant stomach (no pun intended) the thought of a tube being stuck up my nose, down my throat and into my stomach. I cant do it. Especially when my appetite is fine, granted i could do with eating a bit more but im doing the best i can right now with what appetite ive got. The dietician doesnt get that. She asked me if i was okay as i seemed a bit upset. At first i wasnt going to say anything, and then i found myself saying to her that she would be like this as well if she had someone constantly telling me that i need to gain weight! I told her its a lot easier said than done for a CF patient especially! She said she understands but i honestly dont think she does, and shell be giving me the same lecture next time about weight gain. And ill be giving her the same attitude.

So its days like today that really sucks. I feel shattered, even though i slept well, and i woke up coughing to the point where i just couldnt catch my breath. Its always really scary when that happens, feels like you just cant breath again and you'll pass out. Freaks me out. It must not look like a pretty sight for mum either.
Some days i have where im feeling really great, but they seem to be rare lately. Im always waking up during the night now coughing, and sometimes its hard to get comfy enough to get back to sleep. Also knowing that the alarm will go off soon doesnt help either...

This 45% lung function is grating my nerves. I feel crap all the time, no matter if i clear my chest quite well one day. Im shattered just walking up the stairs, which is beyond stupid! I could literally sleep all day right now, and still be shattered beyond belief. I finished Uni today at 1pm, and i got home around 2.45ish. I had to get some meds from the pharmacy but mum ended up going up for me, as would be much quicker. When she was out i fell asleep totally unintentionally on the sofa! I only woke up as i heard the keys in the door.

Im stacked up full now with coursework. Im doing 5 modules - all compulsory so no chance of dropping something - and ive got a piece for each one now. The due dates are fairly well spread out, but thats because they are big pieces of work that require me to do a bit on them each day... this hasnt exactly gone to plan as im totally unmotivated from being shattered all the time and i feel like a bag of crap 24/7. This means im heading a bit into "panic mode" and unless i can catch up im screwed. With the uni im at, its hand in your work on time or fail. Simple as that, no extentions for people who deserve/really need it such as myself. You can hand in an extenuating circumstances form, which basically means they'll go a bit more easy on grading your work coz itll be a bit slack compared to others on the course, but thats about all it does. So pretty much fuck all really. Id honestly rather have my work capped at 40% and be allowed an extention than just have "a leniant marking criteria". It was all grand in the first year as we had a 24 hour window and also a 10 day window and if you handed in extenuating circumstances it was a case of, "okay do the work, and use the 10 day extention window and you'll be fine", ten days doesnt sound an awful lot but for me it was usually the difference between 40% and 80% or something. But they took all that away at the beginning of year 2 as apparently all the other uni's didnt do things like that. Who gives a crap about the other uni's!?!

So its back to the usual "You really need IVs" which is what it was on the 29th, and me replying with "can't. wont. uni work really important, cant afford time off at home on ivs or in hospital on ivs." Them being all moody and giving me the speech of "well we can write you a letter, were just looking out for your best interests health wise".
Which i totally get, they are just doing their job. But this is my future im trying to get a pass for. At this rate ill be surprised if i even graduate! I realise i dont really have a future without my health blah blah.... but with the uni not being helpful when i go on IVs and into hospital, what other choices apart from failing have i got?! And as much as i appreciate the letter writing from the hospital and any other help they offer me, it just doesnt cut it because of the Uni's regulations that do shit all for the students in my position. This isnt primary school where i can have a note written to get me out of P.E. that day/week.

Honestly sometimes i really wish id never bothered with Uni. :(

Anway this is a long post already, and my finger joints are screaming at me more so from typing so much, so ill call it a day...

Tough times

I'm starting to think that my refusal of IVs was a stupid idea. I said to my doctor that i can do this myself, get a bit better i mean. I feel like i was way too optimistic. I'm really struggling here. Caught in a vicious circle: - I need energy to do things such as make food, but i have no energy to do that so nothing gets done about it.

My chest is full of it, i can feel it when i cough. I'm doing all my neb's and things which is helping a bit, but i feel like they are a case of they blow the clouds away for a while but they soon knit back together, if that makes sense?

I'm this close to giving up and ringing the hospital for IVs. Which makes me really sad and really angry at myself and more so at CF. Why cant it just fuck off for a change!? Actually let me be happy for a while.

I don't understand how most of the other CFers always seems so happy and calm and things like that. I can barely slap a smile on myself at the moment and i think its worrying my mum. Hell its worrying me. I don't like being like this, i don't like feeling like CF is beating me with a stick right into the ground.

I hate that i have to leave like 45mins extra early to walk to the station just so i can get trains on time, what am i guna be like when I've got to get trains everyday starting in September. Maybe continuing Uni from home was a bad option as well, but i wanted to move home. To be honest, right now i don't even think I'm going to pass my second year and i cant afford resits, so that forces me into quitting really.... I'm not sure how i feel about that. Sad and also not that bothered i think.

I hate this feeling of not being able to do anything, and of wanting to give up. I'm getting so fed up with having a headache from coughing all the time, or having a stomach ache from finally being able to have good food, and regularly. I know that will settle soon, but i wish it would hurry up.

I said to my mum the other day, that if God is real i think hes given me the wrong life, i think i was meant to have a nice, healthy life. Someone in this world has the life I'm meant to have, and its not fair.