Get up and go

A while ago, my "get up and go" got up and went completely. I was pretty ill for my standards for i would say a good few months and its left me with a lot of issues i didn't have to deal with before, like 38% lung function and 45kg in weight.

But the past few weeks i think its been coming back. Albeit slowly yes, but its getting there. I think the sunshine has helped, i hate Winter, it does nothing for me at all except hospitalise me or house bound me further as the cold now makes my lungs bleed a great deal and that freaks me out no matter how many times its happened! But i think that feeling is the same for most people when they cough up blood...

Ive started doing my dnase again in the mornings, I'm able to wake up and actually get up earlier which means i don't get a headache all day from being in a hot room and sleeping all morning. It also means i can have breakfast which means more calories to take in each day :)
In the evenings now as its usually quite nice me and mum go out for a walk, its not long walks across the fields, usually just around the block as that's all i can handle right now. But i want to build it up, i desperately want some strength back in my lungs! The walk does help me, i can clear a lot sometimes, other times not so much but that's okay.

I am still going to get a wheelchair, I'm waiting for the team member who deals with that sort of thing to get back to me about it, as i still cant handle long day trips out, and that's bothering me a lot more than not being able to walk to town right now, as its not fair on mum, especially when she breaks up for summer holidays (she works in a school so she gets all the holidays they do which is really nice). So well mainly be using the wheelchair for when were wanting to go further afield for shopping or a day out or something. I might use it if I'm having a particularly bad day and we still want to go to town, but otherwise i would still like to walk about town. I don't want to become reliant on it as then ill get no where with getting myself fitter.

I'm going back to the gym, i just need to book some appointments in with my trainer and i want to start doing walking on the treadmill on a slight incline, some time on the bike and i want to start doing some light weights again so i can start defining some muscle and not have stick legs come summer time :p Plus if i can develop some muscle it might add some weight on me as well, as muscle is heavier than fat! That will shut my dietician up, its my mission in life right now to prove to her i can do this weight gain on my own, i just need her to stop mentioning all the time when she sees me how thin i am, and how i need the PEG. I think if she mentions it at the next appointment i will explode at her. I still don't think that the dieticians understand one bit how hard it is for a CFer to gain weight, no matter if they eat 14 KFCs each week or something extreme like that. Just because they might specialise in CF doesn't mean they understand it for how it is for the actual patient, no matter how much the patient tries to explain it... Rant over :p

I went to town today, and for the first time in a while i didn't feel sick and need to sit down every 5mins! I was able to stand and walk around the shops, still at a snails pace which i think annoyed people who got stuck behind me but never mind!
I'm beginning to think that i have an addiction to buying PJ's. I got some Animal PJ's from Peacocks today, its a t-shirt type top with Animal on it, and the trousers to match which have images of him on there and the word Animal down one of the legs :) I also hate my neck and top of my chest getting cold and as i wear a lot of vest type tops i find myself wearing my scarf still if I'm outside and its breezy, so mum took me to the outdoor market today and i got some of them better, fashionable scarfs that everyone wears. I got two for £10, which is better as i was going to get one in New Look that would have cost me £8 so i saved some money there :) Now i cant stop wearing them! One is a black one with a pattern stitched in white and its got some feint reddy brown stitching going through it as well, and the other is white with lots of "blobs" of color all over it. Ill try and put some pics up later if i remember!

Anyway I've rambled enough now, i better get on with some revision!

I'll get by...

Its taken me a while to get to this non-stressed level, and start to feel remotely happy. For people reading this who don't understand what that sentence means to me ill briefly explain...

During Uni, stress from the course and me not getting along with it got to me a lot, and ultimately made me very ill as i don't deal well under a lot of pressure. And pressure is certainly the understatement of what i put myself under! I made myself believe that i didn't belong at Uni, because i didn't have the same level of understanding of the content as my fellow course mates did, because i didn't enjoy the lectures like they did, because i didn't understand the assignments like they did or get what i was supposed to be doing in the tutorials. Because i wasn't exactly on the same level as everyone else i pressured myself about it, and spent countless nights sat up crying from stress and feeling generally crap about myself, telling myself how useless i was and that I'm so thick its a total fluke i got into Uni.
I spent everyday waiting for a letter to come through saying "sorry we made a mistake and we didn't actually accept you after all". Even though none of this was true, i had managed to make myself think and believe fully that it was true and that i was thick as two planks of wood etc, and so it made it extremely harder for me everyday.
All of this stress as you can imagine made me very ill, and i ended up not really eating properly, i think that started the beginnings of the weight problems i have today, it landed me in hospital countless times, adding more stress as i couldn't then do my uni work and i would spend the time in hospital worrying about falling behind rather than getting anywhere near better! I had the amount of times needed for IVs increased, which led to me getting my port as my veins couldn't handle it anymore, now they want me to have a PEG still and I'm fighting that with all i have in me.

Although Ive said it before that i regret going to Uni and living away from home, i don't really. Yes Ive screwed my health up a lot and I'm paying the price for that now, but I'm starting to pull my finger out as of yesterday. Its time for me to stop hiding under the duvet and thinking things will sort themselves out, as they wont and ill end up getting worse and worse. That's now what i or anyone wants really!
Then how am i supposed to live the life i keep saying i want...

I started to sort myself out yesterday by walking up the shop with mum. I spent way too much on sweets but never mind! I got home and was quite tired from such a simple walk but i was proud i did it! My aim is to get walking to town again, even if I'm too tired to walk home i need a taxi home for now, i don't mind as i can build things up.
I take my pills everyday now, and I'm managing 3 meals a day with snacks in between, and this morning even managed to do 2 Neb's which is a massive improvement on previous days/weeks/months ha ha! So I'm off to a good start. Mums helping me a lot with the food side of things, coming up with new ways to cook things for me to make them more fattening and things like that!

I actually managed to hang the washing out for mum yesterday, and I'm planning to try and hoover today. These things are not simple for me to do though, the washing yesterday took me nearly half and hour, i think by the time id pegged up the last item the first item was dry ha ha! But it was the effort that counted for me :)

Im starting to get some motivation back now, and im making the most of it!!

Been a while!

Ive been meaning to do a blog posting for a while now, but just kept thinking "oh ill do it later" but later never seemed to arrive.

Me and mum went to see my sister and brother in law recently. They have just moved into a caravan on some holiday park in Northampton. We caught the train quite early last friday and had to change at Didcot parkway to get to Oxford where they were meeting us with the car to drive the rest of the way there, otherwise we would have to go all the way up the country to come all the way back down and it was just stupid!
I managed okay in the morning, id been doing well with getting up and getting sorted recently and that morning was not much different. We got to didcot fine, but then i had to tackle the dam stairs!! Steep for me wasnt the word!! I had to stop lots of times, then we realised we were on the wrong platform and so i had to go all the way back down, along and up more stairs to get the right train! I was knackered :(

Eventually we got to Oxford and i felt like crap! I was cold, i was shaky, i was not myself at all and i couldnt stomach any food either. I tried to walk around the Primark we found in the town but it just wasnt happening at all for me. We got some lunch at BHS but i couldnt even manage to eat any jelly :( i had a pepsi which i realised was the wrong thing as its a cold drink, so mum got me a hot chocolate which after i burnt my tounge on (traditional with me and hot chocolate) warmed me up just lovely! We got back to my sisters and i just pretty much remember sleeping from then on, i know i had a raging migraine, so the Anadin i took knocked me out for that. I dont think i really made much of an appearance until the morning!

Much of my stay at my sisters was spent feeling incredibly ill, cold, shaky, racing heart, very hard to breath which only got worse as the week went on. Theres a place called Salcey Forest, and you can go walking in the forests they have there on the routes set out and they have it set up so you can walk literally amoung the treetops! I saw mums pics on her camera and its pretty beautiful up there. Unfortunately just the walk to the "rigging in the trees" pretty much killed me and my body refused to let me go on. It put me into a right horrid mood. Dont get me wrong i did enjoy the area and being in such a peaceful place, listening to the birds and watching the dogs jump in the river while their owner yells at them and worries about the interior of the car when they get back haha! I just wish i had been having a much healthier day to enjoy the walking bit as well.
When we got back from there i think i slept some more. I honestly think thats all i did was sleep and hold everyone up when we tried to go out. I felt so bad i ended up just sending the other three out to the places they wanted to go without me while i stayed home and rested and thats all i felt i could do :( I wouldnt have minded if i had been at home, but this was a break away we had planned for id say about a month and it was totally ruined for me from day 1!

I dont think it helped my breathing with the fact that my sister has a Gerbil and 3 Hamsters in the living room, plus a rather fluffy cat, and the cats litter tray although in another room down the hall smelt to high hell. Either way its put me off wanting another Hamster anymore. Ill stick with my little fish :)
Weve been home a few days now and the sunshine has been helping me feel a bit better. My chest is still awful and so full up and thick. Its keeping me up at night and making things very hard in the mornings again, mums back to washing my hair for me, and im back to having a bath or sit down shower coz i just cannot stand for long periods. Going out for now just panics me due to the fact i know i will feel like im sufforcating when walking and the pain in my chest i get. Me and mum have talked a lot recently, even before we went away about getting me a wheelchair for those really bad days so we can still go out. Now were talking about making it a permanent thing we take me out in until im back on my feet properly again - if i can go up again that is - were going to speak to my cf team on Tuesday at clinic and see what they say about if they can provide me with one or whatever.

I wanted to ask on Facebook about CF people and wheelchair useage, but no one ever answers my questions on there so i give up. But someone might see it on here possibly...

I was just wondering if any one does use one and how did they come about getting theirs, did they buy it themselves, did they even speak to their team? Some knowledge would be good :)