So I think I'm just going to write about what's been happening in the hospital, more for myself really than anything so that I can refer to it next time and remember what caused which side effects! But also just to try to get all my complaints out for a while.
SO I came into hospital on Wednesday 5th, and was put straight onto Meropenem 3 times a day and Tobramycin twice a day. This was followed by the usual general exhaustion and nausea that I expect from IVs, but on Friday they added in Co-trimoxazole 4 times a day and things really went downhill... Crazy sickness and eating or even drinking water became an impossibility, by Saturday evening I decided to refuse the Co-trimoxazole and went back to just Mero and Tobra.
On seeing the docs on Monday they decided to switch the Tobramycin for Colistin IV since there was no real improvements happening, assuming I would be fine with it because I can tolerate it nebulised... wrong again! Tuesday I woke up so low on energy I couldnt talk or move, was flat on my back all day and it didn't help that that was the day my dad went back to Jersey aswell, so I was left all alone in that state! Everything felt heavy and broken, was finding it hard to breathe like someone was sitting on my chest and squishing my ribs, so Tuesday afternoon was taken off the Colo and left with just Meropenem... fine by me as I'd become used to the effects by then, though a worry that they originally wanted me on 3 antibiotics to have the best chance of fighting my Cepacia, and I was left with only one.
And well now, here we are, Friday afternoon. I think I have just about got back to the level of how I felt on my first day here! haha. Talked to the doctor this morning and he said rather than start me on the only other drug they can think of, Amikacin, (Tazocin, Gentamicin and Ceftaz are out due to allergies) and me have to stay another whole 14 days, they will just leave me on the Mero alone for 3 more days. To me it sounds overly-optimistic to think I could be well enough to go home in 3 days but we'll see, fingers crossed! I'm telling you now though, there's no way I'll be going without a fight if they try to send me home and I'm not feeling any better, no way I'm going to have lasted this out for nothing!
I'm sick, in agony, bored, lonely, tired, dirty, frustrated and hungry, but hopefully it will be for a reason.
And now the whinge is over. I will be making a real effort over the next few days to be POSITIVE!! Which if you know me is a bloody hard task. I am probably the most negative, pessimistic person you could find. Depression loves me.
But: I have been talking with my lovely friend Jordanna, and we are hoping to put some plans into action over the summer to do some fundraising - it is something we both want to do, will make us feel good and get another thing crossed off my list :)
I have also spoken to my friend Ollie who is super special to me and we hope to go on a hot air balloon ride over the summer, another list thing; and also hoping to go on a couple of travels with people - health (and money!) permitting of course.
I really want to actually get these plans into action and DO some things rather than just dream and talk though. Back in January when I was really poorly and the doctors were telling me I had maybe only two years left in this world unless I got a transplant, my dad and I made lots of grand plans and had big ideas, but none of them ever really got off the ground. Now its 4/5 months later and some of the things on my list are crossed off but I really want to create some experiences and memories with other people as well as the things so far which have been mostly more perosnal "achievements", if you could even call them that, like getting my piercing and tattoo etc.
I want the second half of 2010 to be different. I don't want to be looking back at the end of the year, as I did in December 2009, and be so thoroughly disappointed in myself and feel that I've wasted some of my precious time, what could theoretically be half of my time left altogether. You just never know what's going to happen. In the last six months-year we have lost so many CFers and I'm realising now that most of them weren't expecting to go... it just took one quick unexpected infection, one course of drugs that didnt help like they usually did, or a call that never came and then BAM, things were over.
It's not cancer, we aren't going to get told, "OK, you have 3 months to live, go out and enjoy it well". We need to live every day as if it is our last because it really could be, this is true of anyone ofcourse but even more so with CF... I just need to keep that in mind as much as possible, and hope you guys will too! We have been dealt a shitty hand but it could definitely be worse, and our lives are too short and prcious to be spending time miserable or doing pointless things that make us unhappy.
Ok, well that got maybe slightly depressing but I meant it to be positive, I promise!
On a happier note, I think my dad is coming over tonight, I will have company and we will hopefully go out for some nice food. I need to get clean though!
Also I am so so grateful to those of my friends who have sent me things in the post which arrived today - Jordanna sent a book, Alice in Wonderland so that I can read it as it's on my list, Tiff sent me a lovely letter with some photos and a little "Happiness Kit" which I will post more about later! And Annie sent a cute card with some little teeny toy animals (she works in a toy shop hehe). Along with the card Megs sent me earlier in the week, these simple things have brought some sunshine to my stay, it's nice to know that when you're feeling so low and forgotten that people really are thinking of you and will make the effort to let you know.
Ok, I think I've probably bored the socks off you now so well done if you are not snoring with your head on the keyboard! Bath time for me now. So much love to you all and I hope you are well and happy xx
