i have escaped costa del pearce ward for the Easter holidays.. haha
i was allowed out today after just passing the 5 week mark yesterday, my longest admission so far.. do i feel the benefit?
NO
will i have to go back sooner than i want to?
YES
BUT at least i will have had a couple of week at home and a few days in Essex which has been all sorted with the oxygen people so should be delivered to my auntie's house for when i get there.
i can't tell you how nice it is when you get a message, comment or tweet off a parent who has a son or daughter with Cystic Fibrosis telling you things like, they love reading my blog or that i am an inspiration to them and sometimes they're blog mumma's telling me that one is due up or asking if i am okay when i have missed a day or two.
it's lovely when i get those messages off of anybody, whether that is family, friends, friends of family, strangers or other CF people.
on the blogger i have the opportunity to look into the details of behind the scenes of my blog.. it allows me to see how many view a post gets or how many people have viewed my blog in the past 24 hours. it allows me to see what country people have been reading it from and how many people have read it from there. it also allows me to view how people stumble across my blog and it's posts.
usually it's from another person's blog and i am on their "recommended" reading lists or it's by following a link shared by myself or others on twitter, facebook and other social media.
strangely, what people type in google and then they end up coming onto my page via whatever they've searched.. it also allows me to see what people are searching to happen to stumble upon my justmesophiewee blog.
occasionally, it's something such as, "sophie wheeler's blog" or "just me sophie wee blog" or Cystic fibrosis patients blog"
you will be surprised how many times people search for "clubbed nails" and it's led them to my blog. how rude is that of google, to point out my blatantly most hated thing about my body and allow casual strangers just leisurely strolling the internet for clubbed nail info and takes them to my precious blog.
so i thought i'd give those peeps checking out clubbed nails out there a big hello or ola or bonjour or aloha AND most importantly.. don't panic, this does not mean you have Cystic Fibrosis and are now heading on the transplant list :)
it just means that if you are seriously concerned or worried about it you should probably go to the doctor rather than google.. it can lead to crazy stuff like me rambling on about my pretty awesome life.
on the other hand... welcome to my blog.
please keep coming here and giving me a read it cheers little ole' me up to know somewhere in this world people are reading what i write and are hopefully enjoying giving it a read.
i think it's cool to have a nosey at how other people live.
i have distracted myself from what i was wanting to talk about...
Hello to my CF mama & papa's!
seen as though there seem to have been a flood of you coming on to my blog for a catch up on how i am doing or just to have a see what things i have gone through and will be going through.
it has just occurred to me, that especially with this transplant thing going on at the moment; i guess i just suddenly wondered how you feel reading these things?
it's got me wanting to watch what i say so it doesn't worry any of you or scare any of you.
Please. you MUST remember that every single person with Cystic Fibrosis has their own personal imprint on it. it is the most complex and complicated disease i have ever had the joy of possessing.
no seriously, there are no two CF patients that are the same and there never will be.
the slow progression and decrease in health happens with us all yes but at what speed and severity is something that can never ever be pin pointed at any moment in time.
i just had this vision of you all reading and panicking and i didn't want that but i also don't want to be sugar coating things or hiding things as i like being open and honest in my blog; not for all you who read it but for me too.
writing things out and reading them back later really helps me take things in more and understand them more. i also enjoy looking back weeks, months and years later and remembering how i felt when i wrote something and remembering what was going on at that point.
you all know by now what i am like with words. they're magic and should never be underestimated.
on that note, i would like to also just quickly add that i have always seen CF as both a burden and a pleasure too. the bad things are absolutely dreadful at times of course they are and especially right now i am feeling like it is more of a burden than a hidden blessing but i still really believe that it's given me such an amazing outlook on life that i genuinely believe i wouldn't have if i didn't have CF and took the smallest of things for granted.
i obviously know that a lot of these things are my personality and i know some CF people who are miserable farts that just complain and then do a bit more and then finish off with some whining and it gets on my nerves. haha.
i'm not saying i don't sit here and complain and get frustrated and down and whine and moan but i don't tend to publicise that or at least not a constant supply of it for you all to hear. some things are just better off kept to yourself.
in reflection of my whining and moaning, i always sit here with a smile on my face thinking how much i love every little bit of life.
i can't complain really, i have a whole lot of love in my life and i don't think there is anything that matters more in this world than being loved and loving back.
you have to love the life you live, don't you laura? <3 div="">
so if you're all still with me and you haven't given up on my long winded ramblings from a very tired sophie wee after a busy day of packing, unpacking, playing with roxie and eating; it is time for the picture of the day and then some bedbug love.
Day 21:- Hat
this is the only picture of me in a hat that i have on my i-phone.
it's me at Christmas with my sister Beth and am wearing my obligatory crimbo cracker hat.
i just don't feel like i suit hats so don't tend to wear them unless i really, really like it or think i suit it on that particular day :)
us girls are funny aren't we?
okay well it is late now and it is time for me to do my azli neb which is now mixed and then plug my headphones in to listen to my new audiobook in i-tunes :D
i am deciding to give these books a go as they're my uncle Neil's favourite's and we seem to have similar tastes and views so thought it is worth a try. Northern Lights books which are the Golden Compass books.
Anyhoo.. night night bedbugs. sending lots of love and peace and flowers dudes! (i love squirt the turtle from finding nemo- okay it's really time for bed now :S)
Sophie xoxo
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