Thursday, 28 July 2011
Home sweet home
This has to be my shortest stay in hospital for many years 10 days, I will finish my iv`s at home so another 4 days left. After much thought and consideration I decided I could manage 4 day at home and hopefully not get exhausted like I usually do as the iv`s I am on at the moment are only twice a day. My birthday is on Monday 1st August so I will now be home for that, at first I did not really want to celebrate becoming a year older 27 in fact because it just means I am near 30 and that scares me a bit considering my lung function is bad bad bad 0.9 at best. Not to say when I hit the 30 mark things will only get worse but as a child I thought I would beat the odds and live a very long life, this all sound like I am a negative person but that is not the case I try my best to be optimistic about things. I am so pleased to be going home because I have not seen mum and dad and my gorgeous chihuahua Opal, I have really missed being able to cuddle her anytime in the day. I am very sleepy at the moment because of the extra anti epilepsy tablets I am on during my iv`s, my epilepsy always gets worse when on iv`s why I don`t know? Saturday I am going out with my best friend not sure where yet many ideas have been thrown about but none decided on, any where is great for me just to have a "normal" day is always good.
Sunday, 24 July 2011
Invisible me
I am in hospital and as you know there is alot of time for thinking things over and making plans, alot of the time my ideas don`t actually happen but at the time it seems great and keeps me going through out my hospital admission, for instance going to a music festival with friends.
The last few days I have really noticed a big difference in the reactions from people from my mega hair style change, going from long sitting length hair to a short pixie style.
I had always thought that my long hair was my identity and that is what people new me as rather than the person I am, Since the new hair style people have started to recognise me and comment on how I look like a young woman now and not a child. In actual fact looking back I felt invisible like the last one to be picked for a team, I guess I felt and new this back then but it`s not until change happens you actually realise! All is good and I feel good for once and a grown up at last, wow who would have thought hair styles would make a big impact on someones life.
The last few days I have really noticed a big difference in the reactions from people from my mega hair style change, going from long sitting length hair to a short pixie style.
I had always thought that my long hair was my identity and that is what people new me as rather than the person I am, Since the new hair style people have started to recognise me and comment on how I look like a young woman now and not a child. In actual fact looking back I felt invisible like the last one to be picked for a team, I guess I felt and new this back then but it`s not until change happens you actually realise! All is good and I feel good for once and a grown up at last, wow who would have thought hair styles would make a big impact on someones life.
Friday, 22 July 2011
Brain over load
Well I`m back in hospital for a cocktail of iv`s so two weeks of nausea. Lung function and exercise tolerance down but on a positive note I can say I don`t feel all that bad considering the year I have had.
When you feel as though each day is a challenge and feel ill 90% of the time I think you adapt and it then becomes difficult to judge when you need iv`s. I have only been in 4 days but all ready I can feel the difference apart from the nausea.
Something has been really puzzling me at the moment, my lung function is low which I except but what I can`t get my head around is after all these years with mostly the same lung function, I have managed to get out and about but now I need oxygen when walking even the slightest distance. WHY when my lung function is more or less the same??? I have always struggled walking up a flight of stairs or walking my dog but not to this extent, I hate it when I am so out of breath and have began to slightly panic.
I am trying to use the oxygen when walking the dog etc but am finding it difficult to be out with it even though it really helps. I have given it much thought as to why the obvious one is people seeing me but more so family which is silly I don`t want to be seen as the helpless one I guess, I am a young woman yet can`t do the thing in life I have so very much wanted, not going to university has to be the most upsetting and going on holiday with friend abroad would be nice. The biggest reason I fear if I start using oxygen is this how it is going to be from now on ? I am trying to fight back but am I just fighting a losing battle to go without? I see the oxygen as this is how its going to be from now on and it scares me to think of it like this, my lung function is very very unlikely to dramatically improve I don`t have a back up plan that option is out for me.
I am finding putting thought and feeling in writing helps .
On a happier note my nephew got married last week and his wife is so nice. The party was in a hall with puddings family made and my brother in law did a barbecue everyone had a good time.
When you feel as though each day is a challenge and feel ill 90% of the time I think you adapt and it then becomes difficult to judge when you need iv`s. I have only been in 4 days but all ready I can feel the difference apart from the nausea.
Something has been really puzzling me at the moment, my lung function is low which I except but what I can`t get my head around is after all these years with mostly the same lung function, I have managed to get out and about but now I need oxygen when walking even the slightest distance. WHY when my lung function is more or less the same??? I have always struggled walking up a flight of stairs or walking my dog but not to this extent, I hate it when I am so out of breath and have began to slightly panic.
I am trying to use the oxygen when walking the dog etc but am finding it difficult to be out with it even though it really helps. I have given it much thought as to why the obvious one is people seeing me but more so family which is silly I don`t want to be seen as the helpless one I guess, I am a young woman yet can`t do the thing in life I have so very much wanted, not going to university has to be the most upsetting and going on holiday with friend abroad would be nice. The biggest reason I fear if I start using oxygen is this how it is going to be from now on ? I am trying to fight back but am I just fighting a losing battle to go without? I see the oxygen as this is how its going to be from now on and it scares me to think of it like this, my lung function is very very unlikely to dramatically improve I don`t have a back up plan that option is out for me.
I am finding putting thought and feeling in writing helps .
On a happier note my nephew got married last week and his wife is so nice. The party was in a hall with puddings family made and my brother in law did a barbecue everyone had a good time.
Friday, 8 July 2011
Sponsored hair cut
I have been known as the girl with the long hair for many years now, yes forget my name people outside my family refer to me as you know the girl with the long hair!
I have been trying to think of different ways to help raise money for the Cystic Fibrosis unit I attend, you would think this would be easy I have lots of ideas but putting them into actual practice has not been so straight forward. This January I decided one way of raising money could be to have my long (sitting lengh) hair cut of into a very short pixie style cut, a full head shave would just be toooo much. So I had decide after the summer holiday would be the ideal time and give me the time needed to start fund raising. By some bizzar coincidence in March of this year my hair started falling out and after a month having passed by I had half the thick ness of hair left, I put this down to the high dosage of steroids I had after friends having had the same thing happen to them after steroids. In may this year I got up one morning and decided enough was enough and didn`t want to wait any longer for more hair just to fall out. On the 19th of May I went from having sitting length hair to my hair being no longer than 3 inches long, I thought I would have some regrets but I honestly think it was the best thing I have done in a long while and not a day has passed since where I miss my long locks, I did keep the long plate of hair as a reminder thou. Wednesday 6th July I handed a cheque for £250- to the CF unit :) smiles all round. Thinking cap on for what to do next, my brother has mentioned a sky dive but I might have to watch him fall thousands of feet from a plane not my idea of fun, I would probably pass out with fear.
I have been trying to think of different ways to help raise money for the Cystic Fibrosis unit I attend, you would think this would be easy I have lots of ideas but putting them into actual practice has not been so straight forward. This January I decided one way of raising money could be to have my long (sitting lengh) hair cut of into a very short pixie style cut, a full head shave would just be toooo much. So I had decide after the summer holiday would be the ideal time and give me the time needed to start fund raising. By some bizzar coincidence in March of this year my hair started falling out and after a month having passed by I had half the thick ness of hair left, I put this down to the high dosage of steroids I had after friends having had the same thing happen to them after steroids. In may this year I got up one morning and decided enough was enough and didn`t want to wait any longer for more hair just to fall out. On the 19th of May I went from having sitting length hair to my hair being no longer than 3 inches long, I thought I would have some regrets but I honestly think it was the best thing I have done in a long while and not a day has passed since where I miss my long locks, I did keep the long plate of hair as a reminder thou. Wednesday 6th July I handed a cheque for £250- to the CF unit :) smiles all round. Thinking cap on for what to do next, my brother has mentioned a sky dive but I might have to watch him fall thousands of feet from a plane not my idea of fun, I would probably pass out with fear.
Friday, 17 June 2011
Day`s like these
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.
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.
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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