Wednesday, October 11, 2006

I have now been residing in my lovely housewithrosesinthefrontgardenandeverything for 5 consecutive days. A of course was being an absolute star, he took Monday and Tuesday off to help me get settled in properly and it’s been a fantastic few days; being thoroughly looked after, lots of gorgeous home cooked food, and sleeping in the comfort of my own home. Some things of course are a little strange and taking some getting used to. It is very hard to explain, everything feels so fast, as if I am on the tube with things whizzing by, or in a swimming pool with my head underwater and I can just hear loads of jumbled noise. I suppose it is simply an overload on my completely senses which for quite a while now have been completely under-stimulated by the same quiet environment, where everything from the temperature to the colours within are moderated. We went for a little drive on Monday, to get out of the house, and it was just so nice to be immersed back in human life. I sat back and looked out the window, rapidly exposed snippets of hundreds of different lives as people walked along the roadside going about their daily business; people shopping, people on mobile phones, people reprimanding their children for running ahead too far, people walking along dog trotting nicely beside them, gossiping on their mobile in the other hand…yes I am sounding like something out of an overly flowery novel but the point being all these things are lacking in hospital which makes me all the more appreciative of them when I come out.

I am truly loving being home, I really am, but what a huge torrent of emotions it brings with it, feels like I am standing blissfully happy on a beach but huge crashing waves keep knocking me over. Yesterday for example I really struggled. Plus I did that typical thing which people who are feeling down so often do – I felt down about feeling down, as I felt that I shouldn’t be feeling down because I should be feeling happy. This of course made me feel even more down, till it got so silly that it prompted me to smile. So yesterday I was panicking that I was feeling down and shouldn’t do, and of course today I am feeling that little bit more assured and “normal” which just goes to show don’t panic about these things as the likelihood is tomorrow will be so much brighter; it’s just a natural case of readjusting and getting my head round being out.

There are quite a few things which are a bit of a shock to the system, predominantly that I have the stamina of a shrew (actually shrews are quite hardy in comparison to current self, cant think of a good comparison at present). Having been so very ill, to the point at where eating a mouthful of something needed a long sleep to recuperate, I felt that I had come on leaps and bounds and recovered beautifully. Which of course I had, what I had forgotten was my old level prior to naughtylungcollapsingness was miles above where I am at present, and I have been sharply reminded of such since returning home. However I will adjust to this new slightly lower threshold; my body will get used to it and I'm sure I will hardly notice it after a while.

I have bitten the bullet (can you say that?) and on advice from my hospital got some home help. This is somewhat difficult for a young 22 year old - who feels like she could leap up off the sofa and start dancing around to Fame at any given moment - to get their head round. Home help is something you envisage needing when you are 80, not when your peers are either still studying or just beginning their careers. In fact I will admit it is even slightly embarrassing just typing this, and I don’t even know why. Must be a pride thing, no one wants to be dependant, particularly not at this age, but that is one of the reasons I am posting this, so people (particularly fellow pwcf) can see that sometimes in life it is just a case of swallowing your pride and asking for help…and yes I find doing that as hard as the next person. This morning a nice lady from the home help company turned up, and she really was very nice. She was professional and my feeling of utter stupidity because I am aware of how well I look and how young I am quickly evaporated. She was determined to let me take the lead and to do things to help rather than hinder, which meant even though social service form states that I am to be helped with washing and dressing (not general living needs or domestic chores, it’s a bureaucracy thing, I am not entitled to help with that as I live with someone…don’t get me started) she used her initiative and put a load of washing on whilst I was doing my first nebuliser. By the time she left I had nice clean hair, had breakfasted, washed, dressed and done my morning tablets and nebs, and miraculously did not feel the need to go back to bed to sleep, it was the most bizarre and fantastic feeling. I almost felt guilty as I had this energy left (not really used to that) which meant I could sit down and start tackling some areas of the campaign.

So am quite excited by the prospect of having some energy to be able to do some campaigning again – it is more vital than ever, not only for my sanity to keep my brain active, but vital in the literal sense. I waited 17 months for my first false alarm and am fairly certain that even with stubbornness factor accounted for my lungs will not tolerate the same length wait for a second one. I calculated the other day (whilst lying in bed trying to distract myself from focusing on my rapid and poundy heart rate) that I have been waiting for a transplant for over 13600 hours. I believe this counts as what my psychologist would call a distraction method, time to don my proud face methinks.


Simba said...

Yay for home helps! Yay for clean hair! Yay for having the energy to campaign! Yay for being first commenter again! Yay, yay, yay!

You put me to shame as ever my dear ;)
Do you want some help with your campaigning? xx

Emmie said...

13600 hours on the transplant list? OK, here's another calculation for you:

How many of those hours have been spent (in total) doing one or more of the following:

a) Talking
b) Sporting a proud face
c) Sporting a pouty face
d) Eating Haribo

I'm guessing 13521 cos that allows time for a bit of sleeping in between haha ;o)

Love ya loads
Emma xxx

Anonymous said...

Hey Glad you are enjoying being home, I am also guilty of that feeling down and then feeling down for feeling diwn syndrome.. Did it today.. Its gud that home help can leave you with that bit of energy left.. yay.. Hope you enjoy the rest of the week.. Always thinking of you..

xx Sandy xx

Anonymous said...

Sending you all our love emily , remember the mails you got me to read to mary ? well now its her turn to hold your hand hun , side by side , stay strong , love always alan xxx

Jac said...

Oooh...thats good to hear about home help lady. Sounds like a very sensible idea, and if it even means a tiny bit less energy is spent, then it can only be a good thing :)

Glad you are slowly settling back into home life and I'm sure you will be readjusted in no time!

Love and higs
Jac xx

Anonymous said...

Well done, for not letting pride stand in the way of getting a spot of much deserved help. Enjoy your extra energy and stay cool. xxx

Anonymous said...

I'm so glad to hear you're still at home and feeling ok! It's great news :) And it's fab that you are able to use your energy for things that are important to you, such as campaigning :) Keep strong and keep smiling, love Kat xx

Jayne said...

It is good to hear that you are home and getting back into the swing of things.

Love from the 'old ranting woman'.

Jayne x

Anonymous said... for campaigning? Sounds like I'm going to be busy again soon! Seriously hunny...I'm ready and waiting for your call - bring it on! :o)

Anonymous said...

Absolutely most fantabulously a proud face moment. Well done. xxxx

Anonymous said...

What's the next campaign step missy? You keep on truckin', remember what a star you are and how loved by your minions. So very loved! Nothing you ever feel is wrong cos it is you who is feeling it, so do NOT berate yourself for feeling down...just remember that tomorrow will bring more sweetiebobbles, perhaps in the giant upgrade style Bill Bailey predicts will be the next step in confectionary...a giant sweetiebobble? This has to be done.xxxx

Unknown said...

Hi Emily,
Glad you are getting lots of help so you can have that extra energy.

Hope your campaigning goes well. Keep up the good work.

Take care

Anonymous said...

Hi Em
You are very good at describing what, to many people would be fairly undescribable. (Re you 'being home' feelings). I could nearly-sort-of-imagine being you for about five seconds, which is much more to do with your literary genius, than my (rather freaky) imagination.

Jordan says "Hi!" *waves merrily* (and I'm whispering now because he's still nearby, but the little sod may have to have his first ever IV course soon, probably due to fact (or at least not HELPED by fact) that I found out he was throwing his Colomycin down the sink a few weeks ago.. God knows how long for, before we caught him.. aaarrggh.. how do parents cope with cf-related-teenage-non-compliance? Ask your mum will you?? (And that goes out to any parent-of-TPWCF who may be reading this!!) Or perhaps you have always been the epitome of compliance Emily??.. ;o) Probably! :o)

Lots of love.. thinking of you.. and spare me a thought tomorrow.. I have a three hour Open University exam.. am very scared...*puke face*..)

Clare x

Anonymous said...

After your experience of having a personal shopper, I knew if was only a matter of time before you acquired a personal dresser.. all the very best people have them you know :)

Yay for extra energy for campaigning and a well deserved proud face.

Best always,

~ James xxx

Anonymous said...

I am so happy that you are full of energy. I seem to be also bouncing all over the place, lol. I get to go horse back riding tomorrow, as a wish I wanted. I cannot wait! I rode horses when I was a wee child. My heart is fluttering at the thought. I do hope you get the call soon. So proud of you and that smiley face! *hugs*

Nicole -breath_seeker-

Anonymous said...

Just don those dark sunglasses and think of her as the hired help!

I'm so glad you are home.

Take care love MoO and Grace xxxx

Anonymous said...

Sending positive thoughts & vibes your way Emily.

Just seen Emmas & your new montage really is emotional and if it can make a difference to someone like yourself has to be worthn its weight in gold......

Glad you have some help with 'some daily activities' etc least it allows you to stay at home in your own comfort surrounded by your own famailiar things,family friends etc and of course plan your day your way.....

((((hugz)))) Elaine & Rach & family xxxxx

Anonymous said...

"I felt down about feeling down, as I felt that I shouldn’t be feeling down because I should be feeling happy. This of course made me feel even more down, till it got so silly that it prompted me to smile"

Lol, well, at least you recognized it in yourself and was able to pull away from the situation. I'm nocf, but follow Kina's work on deviantART, and have exchanged with her on AIM a bit. But I do have a history of depression, and that quote of your writing is a big part of it. I feel a kind of rushing to try to self-examine why my depression is manifesting itself as it is, and in a way that makes me feel worse, and then I feel bad about feeling worse...because time is short. Not just for PWCF. And not just our own personal time, but our time with our loved ones, or our time experiencing certain things in life, like a horseback ride, or time with your dog. Good to remember I'm not alone (and you for that matter). And good to know there's ways to step back from uncomfortable situations.

Get better. You deserve it.

fpjmask off of deviantART

Anonymous said...

So so glad you are enjoying the comforts of home. Will be keeping all fingers crossed that it continues for you and you get that all important call soon.
Take Care

Anonymous said...

It's so good to hear you're feeling ok, and that you have energy for campainging! Wooyey! Don't worry about feeling down, it's one of life's less enjoyable emotions, but at least it makes you appreciate things more when you're feeling good again! :)
Take care of yourself, loads of love xxx

Anonymous said...

Hi,glad your still at home and getting the help you need and its good you feel comfortable with the person and I'm sure you brighten up her day for her with your smiley face .Hope that lung keeps behaving
love Annex

livvy said...

Make the most of the home help and forget your pride - just see how much good it will do you to have that energy left to do something you are really passionate about. So pleased your loving being at home. xx

Anonymous said...

don't think of her as a 'home help' because, as you say, that has granny connotations. Think of her as your 'personal assistant', PA even, and thus you are incredibly glamorous and far too busy to do all those little things your self, and so you just had to 'get a man in'...

came your way via lizzie hutchinson. I work in tissue transplant so am v impressed by your efforts and inspired to do my bit more. Will be forwarding the link, in any case.

In scotland the new transplant act allow 'authorisation of retrieval of organs for transplant' by people before death, rather than only 'lack of objection to retrieval' by next of kin after death. Is that now the same in england?