Sunday, 20 February 2011

Some pictures and life over the last week.

I feel like I've scared everyone off?! Y'know I just don't feel like many people read my scribbles any more. I mean, this is hardly commonly read blog or anything and it was always started just for myself, to write about stuff. My memory is so bad, so it's handy having this, I can check back and remember 'oh, that happened' rather than having the memory disappear forever in the empty chasm that is my mind!

But yeah. Like I said, this is my blog, so whether or not people read, I'll continue to write. I'll admit this has been the hardest week in a long time. Health stuff (I'll update on how clinic went later) and college stuff aside (even though right now, it's not too bad, dare I say, I'm enjoying it?!) Loosing Lauren is difficult to an extent that I could never have imagined. I've lost friends before, to CF and the like, but no one I was this close to. And it hurts. Lauren herself said she wasn't scared of dying, more, the weeks/days leading up to it, and leaving her family behind (which is precisely what I'm scared about too, just FYI). A few people have told me that she wouldn't have been in pain, and I know they'd have given her plenty of morphine so it's a comfort to know she would have just... drifted off I guess, rather than struggle through the last moments.

I guess there's a few dark thoughts in my head but I can't stop them really. But I feel like I should be honest. I haven't spoken to many people. I feel like one moment I need to be around friends, and they hug me and tell me it'll get easier, and then the next I just want to be on my own so I can pretty much just loose it without people fussing. Except the being on my own part is difficult - that involves walking to somewhere, and it's bitterly cold outside still, and my lungs just don't agree with long treks like they used to. So I'm a bit stuck. It'd be nice to be able to drive at moments like this. Just get in the car, drive to a quiet place and just... think.

It's like on Thursday. I got out the house for a bit, I needed distraction. I ended up crying on my friends shoulder for ages. But we just talked, and he hugged me, and that helped. Then some other friends came looking for us, saw I'd been crying and were asking me what was up. I couldn't handle that, being surrounded. I went off with my cousin and we sat and talked for ages. It felt nice to smile, and laugh a bit. Even if it does feel incredibly conflicting to be crying so hard one minute and the next people are making you giggle.

Okay I promise I'll try and be less mopey. I feel like Loz wouldn't want me to just sit around, sad all the time.

Clinic was a bit frustrating on Monday. My lung function dropped from 75% last month, to 50% at this appointment. My weight dropped still, and my sats were 92%. Lovely. I told my physio (cos my dr doesn't listen for shit) about how exhausted I was. I could bearly make it up stairs, I cannot walk up the stairs at college no matter how much you ask me, so I have to resort to the lift, in the weeks running up to clinic I'd been coughing so badly, non stop, had headaches and pain from it, increased lung pain in general, hemos, and temps. And when my dad dropped me off at the front door of the hospital, it's about a 100ft max walk to clinic. It wore me out so much I was close to tears, and I'd not even walked half of it at that point. To be honest it's a whole medical list that was getting a bit too much in a short amount of time that I'm just not used to.

So my physio left. My dr came in, skimmed over my results, and erm, yeah pretty much just walked out. I was getting so frustrated, almost yelled at him, saying how I felt like utter shit and they're not doing a thing. He just pointed at my drip stand and said 'we're starting on IVs aren't we'. And that made me more angry. Cos one of the drugs, Tazocin, is one I've never had before, and I'm honest-to-god terrified of side effects and reactions. Not every hospital will keep you in when starting a new drug, but even then, a few will at least give you an epi pen or antihistamines or something, just in case. My hospital? Nothing. Not a thing. I pointed out, probably about 10 times, that I'm worried about reactions and he just said 'well you won't react'. I mean, WTF! In the past, I've reacted to things, Like meropennum. It completely knocked me for 6, and when we phoned the dr up, he just said 'thats the IVs at work'. No shit. But not working in a way we wanted.

In the wise words of Gem, he's such a penis. 

It didn't help that they randomly took blood for an annual review I didn't know I was going to get. (Not that blood takes bother me, it was the fact that I didn't know a thing about it till the nurse walked in with several vials and a butterfly needle). And that he didn't tell me that I was going to get a chest xray for my next appointment for the review, until I read the 'next appointment' slip thing saying I needed to arrive 30 minutes earlier and head straight to xray. I promise to take a photo of the ever so sexy gown they force me to wear for that.

I'll admit, I've been on the drug a week and still survived, but reactions can happen at any time, so I'm still a tidgy bit scared, and will continue to be for the next week until I finish the IVs. My nurse came in for a chat too, whilst I was stuck in the room for 3 hours. She noticed I was down. Mainly it's the no energy thing. I just kept repeating that I'm too tired for everything; I was dreading the walk back to the bus stop, even though it wouldn't be as difficult as it could be as it was down hill. Me and my stubborn-ness to go to clinic on my own means getting dropped off by my dad, and getting the bus home. It was nice to talk and get a hug, but she was also saying things like it's partly my mindset which is making me, and keeping me feeling down. It did frustrate me a bit, cos she was basically implying that I could feel a bit better if I smiled more and thought more positively. I can do that. Just not when I'm feeling this crap. I needed a break that no one wanted to give me.

On a brighter note, I am feeling better. I can at least go up the stairs and be knackered at the top rather than on the landing bit half way up. With a week to go, I'm really hoping I get back to myself soon.  Now here's some photos cos I don't like to go too long without photos all over the blog :)

 Triple exposure taken on film, 120mm with my holga camera. This is my submission for the senses project. It's the one decent picture I got, and I'm pretty happy with it.

 My eflow :) I just put saline through it so I wasn't wasting any drugs or HTS, and took some photos of the cool misty effect. I might actually use it to create more atmosphere in photos now.. :D Cheaper than a smoke machine

 Stuck in a room for 3 hours, and the only thing to take photos of was the drip of colistin. Fun times..

 And me with the drip stand. With a war wound on my arm where they took several pints of blood for my annual review in a couple of weeks. Frankly, I'm incredibly curious to what my various levels are whilst feeling like I've been thoroughly put through the mill. I didn't drip stand skate much even though I was acquainted with it for 3 hours; I just lacked the energy and sat texting instead.

Old ish photo from around last June I think. But it never fails to make me laugh. I absolutely love random things like this and wish I saw more to take photos of.

Hope everyone's okay? xx


Gem said...

If you only knew how many hugs were flying your way right now from me. I hate being so far away from you and not being able to cheer you up just via a text. I want to give you a hug and talk things through properly. Gah! The summer though- it will happen :D

Hahahahaha Penis Dr. It's so true though!! Seriously lacking in some common sense I think.

Big love!


JenniLeigh said...

Hey Meggleypeggle.
I just wish to say, I love you monkey. Lots and Lots!
I think you should slap the doctor. Just go for it. He sounds like a knob. Maybe you'll knock some sense in. =)

Ps. The word verification thing for this comment is 'pecopers'.
Seriously, wtf? Lol.

Katherine Anne said...

im truely sorry to hear that things are going shitty for you. but i do have to say that your blog post made me laugh a little. im glad it did because i am feeling like complete shit too! i cant believe your doctor, he really does sound like a penis lol. i know you dont know me, but i sure hope you feel better soon hunnie..sending hugs your way <3

Anonymous said...

Hi Megs,

Just want you to know that I read, and look forward to, each of your blogs. You can be so comical even in the hardest of times and just have a great way of putting things into perspective. Nice photos too.

Sorry about how you've been feeling down lately with the loss of a friend you cherished so much and with the health issues making things much worse. THat Dr. should have to live just one day in your shoes! But maybe the IVs will get you back on your feet again real soon. Wishing you an early Springtime.

Everyone has to grieve in their own way and on their own time but hoping the hurt eases up for you each day that goes by. Lauren seems to have been a wonderful person and friend whom words cannot describe. Sending more hugs your way...

A friend from GA xxx

Tori said...

I read!!!!

Sending you big hugs gorgeous!! It's never easy loosing a close friend to CF my first experience of it was when Jo passed. It wasn't easy but time will slowly make things better xx

Gemma said...

Hey Meg
I don't know why but for some reason your blog feeds aren't coming up on my dashboard anymore! Have you changed your address or something?
I remember whne Jo passed I felt so unhappy, it's like you feel you body is sinking and you are just operation on auto pilot. I promise it will get better. That may be why you are feeling so tired, when I feel miserable or upset all I want to do is sleep and watch TV, I just have no energy atall.
Hope you are feeling better soon hun xx

Gemma said...

ok how many errors did I make on that post!? apologies! xx

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