Today was clinic day in London, I went with a packed suite case just in case I needed to stay in for iv`s. There have been a few times where I have been caught out needing to go in hospital for iv`s straight from clinic and hay presto I have no Case, if this happens you get given some very fashionable green bottoms and top or a pink nightie that has a big gape in the back oh sooo glam! But here I am at home writing my blog so hopefully another few weeks before I need to go in hospital, for this I must keep up with all my meds and nebulisers to keep my chest as good as possible.
I`v had a gastrostomy / button for 3.1/2 years now but as of tonight no more it will be. I went to clinic nervously because I told my dietician I wanted it out, although not at the ideal weight recommended I just could not do the feeds for reasons I have been trying to get my head around for the last 4 years. The button itself did not bother me except it leaked all the time just bad luck on that part, it was really hard confronting the truth because my dietician is so good and dose everything she can to help and I feel so awful. I just hope I can keep this weight up with out letting it slip or another gastrostomy will be recommended again, so altogether mix feelings.
Friday 17 June 2011
Tuesday 14 June 2011
Happy Holiday`s
I can`t find the right words to describe how isolated and frustrated I have been feeling of lately. When I think about what I could be doing with my life if only my lung function was better but not that alone if only I could just get through a day feeling well. I daily think am I trying hard enough? Should I be pushing myself more am I being lazy?? It would not be as hard if I new things would get easier but the fact of the matter is I don`t have a cold I have CF.
Last week I went on holiday to the Isle of Wight with Mum and Dad oh and not forgetting Opal. It was a long awaited holiday having had to cancel two weekend holidays last year because I was ill in hospital. I have had many holidays growing up with great memories but this holiday was sooo good. Maybe it was good because for one whole week in a very long time I was able to leave and forget every thing behind me, no hospital appointments to worry about, collecting medication from Gp`s surgeries etc everything could be put on hold. We visited many lovely places and in our own time and pace what could be better, One day we went to the Needles and went on the chair lift over and down the side of the cliff wow that was scary especially if like me you are terrified of heights, but I got a smashing picture of mum and me on the chair lift one for the album ha.
Home again and back to normal life time to plan for next years holiday I think.
Last week I went on holiday to the Isle of Wight with Mum and Dad oh and not forgetting Opal. It was a long awaited holiday having had to cancel two weekend holidays last year because I was ill in hospital. I have had many holidays growing up with great memories but this holiday was sooo good. Maybe it was good because for one whole week in a very long time I was able to leave and forget every thing behind me, no hospital appointments to worry about, collecting medication from Gp`s surgeries etc everything could be put on hold. We visited many lovely places and in our own time and pace what could be better, One day we went to the Needles and went on the chair lift over and down the side of the cliff wow that was scary especially if like me you are terrified of heights, but I got a smashing picture of mum and me on the chair lift one for the album ha.
Home again and back to normal life time to plan for next years holiday I think.
Monday 13 June 2011
Me, Myself and I
Well here goes, a little about me I am 26 but near 27 wow that makes me feel old. I have a large family and without them I would not be the person I am today and have a lot to be thankful for x
I am a qualified beauty therapist but unfortunately never got the chance to work in a salon or travel the world by sea`s on a cruse liner/ship. WHY? I have Cystic Fibrosis and Epilepsy, although CF dosen`t stop you achieving your goals in life it can/dose alter the path in which you chose to go down.
I have a beautiful Chihuahua called Opal, she is only 7 months but each day the bond between us is stronger, she gets away with allot who wouldn`t with her big eyes and two large ears looking up at you? I only have to look at her and she cracks a smile on my face, turning what seamed a awful day into a what am I worrying about day.
Cystic Fibrosis is a genetic condition that affects the lungs and pancreas.
I am a qualified beauty therapist but unfortunately never got the chance to work in a salon or travel the world by sea`s on a cruse liner/ship. WHY? I have Cystic Fibrosis and Epilepsy, although CF dosen`t stop you achieving your goals in life it can/dose alter the path in which you chose to go down.
I have a beautiful Chihuahua called Opal, she is only 7 months but each day the bond between us is stronger, she gets away with allot who wouldn`t with her big eyes and two large ears looking up at you? I only have to look at her and she cracks a smile on my face, turning what seamed a awful day into a what am I worrying about day.
Cystic Fibrosis is a genetic condition that affects the lungs and pancreas.
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