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.

Never say Never...

Ive been meaning to write a blog for ages now, its just that every time I've loaded the page to write things that are swirling in my head, i cant put them into sentences no matter how hard i sit there and try.

I'm still not totally sure how this post will turn out, but I'm just going to type and see what happens.

My thoughts of late have been pretty much 100% focused on CF. Sounds strange as living with this disease you'd think that i was thinking about CF all the time anyway. But i don't. I try not to anyway, otherwise i just get myself into a right mess in my head and i cant focus on anything. I loose myself, and its not a nice loose myself like when I'm staring at the clouds making pictures, its like i get trapped in my head and I'm surrounded by all these nasty, horrid thoughts and scary possible futures. Its tough to deal with, and tough to get out.

God! i bet i sound like a right mental patient!! But oddly, lately thinking constantly about CF hasn't trapped me in my head this time. Its like i found the window in there and I've been able to open it to allow some of the nicer thoughts in that were stuck outside before. The good realities that could happen instead of the nasty, horrid ones. Don't get me wrong they are all still there, its not like they all floated out the window.... but, well its like they've gotten smaller, less threatening and scary.

Honestly I'm not sure what changed to make them less scary, but I'm glad of it! I feel a tiny bit more free from the grasp of CF. Tiny doesn't sound a lot, but it feels huge to me. Perhaps its because I've been less stressed. I haven't been well AT ALL lately, and I'm only just now feeling like I'm getting to put my feet back on the floor. My toes are touching the floor at least. Usually when i get ill i worry about Uni and about the extra care i need to put into getting better, but still maintaining my coursework (the uni don't give extensions in any circumstances, so its hand something in or fail, submit extenuating circumstances and hope u can resit for free and uncapped at 40% in the summer) and general life. But this time, getting this ill, it put a lot into perspective. I made a pitiful attempt at the coursework i had due in 'coz that was literally all i could handle, a friend kindly handed it all in for me and i handed in my exten circs to resit in the summer before i graduate this year. I didn't get stressed about the coursework once, or worry about handing it in and passing. I just didn't worry at all about anything to do with Uni. I put it all on the back burner and just ignored it. I put all my energies into getting better. Which was and still is very hard.

I don't know what made me change this time around. I had been told how sick i could get and heard stories, seen other CFers put things on their blogs and facebook about things happening to them during infection and i just thought every time, i thought, "ah that wont happen to me 'coz I'm not that bad with infections" I thought naively that all my infections were the same each time. Extra tired, lack of energy, lack of appetite, increased cough etc etc. But this time was totally different, and threw me right out of my naive comfort zone.

I was throwing up constantly, i was coughing so much i couldn't breathe, i was coughing up blood for the first time ever, i had temperatures that made me feel like i was a melting snowman in the blazing sun, my heart felt like it was trying to burst out my chest, i could barely get out of bed for energy, i couldn't eat 'coz i felt so nauseous all the time. There was just no let up at all! I ended up in hospital, my sats were in the low 90's which is totally not normal for me as even during past infections they've not really dropped, and i was put on oxygen for the first time ever. When i thought i would never be on that. I had to have an ECG to make sure my heart wasn't doing anything they couldn't see with the increased numbers, my temperature was sitting at best around 38 at highest it got to 40. I was very ill for my standards. I was also very scared but i wouldn't admit that at the time. My lung function dropped to 38% and my weight down to the low 40's kg...

Its taken a lot for me to get to where i am now. Which still isn't better, not at all really. Sure all my numbers baring weight and LF have improved but its still not good enough. My appetite is coming back slowly, the past 2 days have been good for eating, including eating a cake i made with mum!
I'm trying to best to be compliant with my nebs and meds, but getting back into a routine is proving harder than it has before.

But ill get there. I always do eventually...