Gym

I'm not sure if I've mentioned this already but I've been able to start at my local gym! After months of going between different people to get it organised, its all sorted nearly and I've started :)

In fact I've just got back about 1/2 an hour ago from a session there. I impressed my trainer to no end and shocked myself as well because i managed half an hour of exercise today :D Usually i get to ten mins and I'm huffing and puffing for breath and just cant do any more!
 I'm not saying it wasn't easy as pie, far from it in fact. I had a massive coughing fit and had to try not to throw up like usually happens at home. Thankfully i managed to control it and was able to get on with more exercise.
My dehydration levels go through the roof more than they normally do, and i think i got through one and a half bottles of water in just half an hour. Drinking more as well now I'm home, so trying to manage that while exercising it proving a small challenge as i forget I've got water there to drink haha!

I managed 6 mins on two different cardio machines, and did two reps of ten on the two different weight machines. So all in all pretty amazed at myself really :)
I'm booked in for twice next week as i really want to get more into this and start feeling the benefits!

Ive got my next appointment on the 3rd December, and so if my lung function has gone up ill be extremely happy!! Its 45% at the mo, and i would love to gain even just 5% back and take it in small steps like that. But then if i get back over 5% that's just a bonus!!

Time shall only tell...

Feeling Good :D

I'm feeling pretty good these past few days, so im taking the opportunity to write a blog about and make it a bit happier for a change :p

Ive finally been able to start at the gym near me!! Ive only done two work outs there so far and as my personal trainer is off for 5 days now im not back until the 16th. But those two days already have given me the chance to feel like my old self again!! Ive had energy that ive not known what to do with, granted im not waking up and jumping out of bed yet, but its a tiny step towards that! Though not being a morning person i doubt ill ever be bounding out of bed with energy haha! :)

My personal trainer is so nice! I had a consultation with him and explained about having CF and he wrote pretty much everything down that i said, and we filled out some questionnaire thing together to find out more about my condition and for their records as well. I was for once in my life, honest about how CF affects me and what it is and everything like that. I usually try to dull it all down as "just a bit of a manic cough" i think more to stop myself gettin all moppy about my reality, but i thought this is my reality. Im 21, its time i start accepting things properly and pulling my finger out my arse! So thats what im doing :) Im still struggling to get back into my old nebs routine, but im really getting there. Dave (my personal trainer) went away from the consultation meeting and did lots of research about CF and all the meds that im on and everything, so hes properly clued up! This really settled me. Im usually like most CFers i think pretty embarressed about the whole coughing up lovely looking mucus and things like that, but hes always on hand for tissues, making sure im getting it out like im meant to, making sure im hydrated and not pushing myself too much, but just enough to get things working.

I have problems with not knowing my limits, and then if i do know my limits with something i ignore them and push on anyway. It gets me into problems a lot. But hes keeping me in check! Making sure i start off small bits and working my way up to longer exercise routines. I managed 10mins in my first session and then 15 mins in my second session. I felt a bit pathetic after that first session for only having been able to manage just a meger 10mins of exercise, but he said that its 10mins of exercise i didnt do yesterday and so thats something to be pleased of! I was still a bit annoyed at myself, but i think that it was just my stubborness of not recognising my limits showing through, as after i finished the 15mins session i was really pleased that i had managed to go for 5 mins longer than before! Im aiming for 20mins next time.

We've set a target of 55% lung function to be reached by my next hospital appointment, which is in December on the 3rd. Im 45% at the mo, so a 10% gain is a realistic goal that i feel i can reach! Im so happy :)

Im also feeling inspired lately, which is helping me with my Uni work! Im doing a lot more sketches of random layouts for sites, and i just dug all my old art and crafts stuff out my cupboard and feeling even more inspired to get back into my creative self.

I honestly hadn't realised how much i had changed lately and just seemed to stop bothering with anything that made me happy, as i guess i didnt see the point for some reason. But last night i was feeling the happiest ive felt in a long time, and i was making mum laugh by being the idiot that i am :) and she said that it was good to see me getting back to my old self. Apparently i had been really moody and sad a lot lately and i hadn't noticed.

Its amazing what a bit of exercise can do for you! Can't wait to get back to the gym next week!

Now all i need is for the weather to clear up so i can get out and take some pretty pics with my new camera!!

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...