Saturday 24 December 2011
Friday 23 December 2011
Bursting.....
With excitement! A complete contract from my last blog. For once things seem to be going my way. My body tollerated the antibiotics so I went in for 2 nights and I am back out on Xmas eve eve!
I feel tons better already and I have many more drugs to take hehe!
What can I say about my welcome home?!? Chris put the santa lights on in the window especially to welcome me home cos he knows I love seeing it and I know its his little cute way of welcoming me home but shhh don't tell anyone ;o) hehe...
Livvy was having her dinner and almost jumped out of her highchair and shouted Mommy Mommy! She was even more impressed when I showed her the choccy penny's I bought her on the way home! One look at Jay and he beamed his "I love my Mommy" smile and had a big kiss and cuddle with my gorgeous, amazing husband!
I am so very greatful to be at home right now. It feels sureal!
Even though my voice is nearly gone I took Livvy to bed and read her a story. She kept saying Mommy better and medecine. Its scary how much she is growing up and understanding things but she knows it as the norm which is the best way. Its amazing to be able to explain to her that I have to go away but I will always always come home again.
I have had lots of kind messages from people which have helped me so much. Special mention to my hubby as always, my Dad for bringing my lil family in to see me, my Mum for making me a lovely cornish pasty and other goodies, Nikki for always being there for me and always makin me laugh even in the crap times, Chris' parents Mandy and Steve for always checking on me and being there for me and Chris, my new found friend Grant who has been a surprising help lol and to everyone else who have sent messages.
I am currently sat waiting for a chinese then I'm going to get my feet tickled and watch some tv.
Tomorrow I am going to get a couple of pressies and that's about it. Gonna have a nice relax and enjoy a family Xmas.
Merry Xmas to everyone. Remember the good times and cherish your family and friends. Don't sweat the small stuff.... Onwards and Upwards baby!!! Xxx
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Wednesday 21 December 2011
Ward 26 Heartlands Hospital!
Well here I am again..... Sat in the day room waiting for room 12 to be cleaned and ready for me to go in.
As I sit here I am forced to entertain myself purely with my thoughts. Not always a good thing especially when my heart is ever so slightly broken at having to leave my hubby and 2 kiddies at home a few days before xmas.
In the day room is pictures or previous CF patients that are no longer here and thank you cards from people who have been looked after on the ward or from the family of the unfortunate person not with us anymore.
As I sit here I am remembering what this hospital used to mean to me. I started coming here when I was 17 and wow it was such a life changing experience as I hadn't really seen or spoken to any other "adults" with CF. I still remember my first admission on ward 12 (the old ward we used to go on until our CF unit was built) I met 4 amazing people. 3 of them went on to be very good friends of mine for years but sadly they have passed away over the past few years. The other guy I met on that first admission was so lovely. Stayed up till the early hours chatting and having a laugh. I went home and a week later he passed away. So on my very first adult admission I had a big reality check thrown in my face.
Regardless of the hard hitting side of CF and Heartlands hospital its no joke when I say it was like a holiday camp in here! We ran riot on the ward and it was so much fun! I almost wanted to come in for treatment half the time as it was such a laugh. I think mainly cos I could spend time with such strong, funny and outgoing people that I had something in common with. Cystic Fibrosis!! Only someone else with this disease will fully understand what I mean when I say things no matter how much people try. So it was special when I speant time with people that fought like I did and much harder in a lot of cases. We used to go out to the pub and to the cinema together and come back late at night just before our last iv's were due to tuts and smirks off the nurses hehe!
Over the years we moved on to ward 26 which is a specialist CF ward build just for us. I think that's when things got a bit more serious. We all have our own rooms due to cross infection. Basically different CF patients grow different bugs and can pass them to each other so we were told to keep our distance and not to mix with other CF's. As far as I know pretty much none of my friends actually listened to anyone about the cross infection. It was a risk we all knew about but none of us were prepared to stop being friends or going to see someone when they were really poorly.
There used to be a huge group of us that stuck together and were genuine friends. Unfortunately I only have a couple left. I have watched people decline and pass away. I think of them often and when I come in here I often stay in rooms where my friends have passed away. It makes me feel close to them but it also makes me miss them all so very much. I have made many more friends (some special) over the years and more surprising friends via the internet :o) You know who you are!
So the meaning of Heartlands has changed over the years. Its all so very serious and worrying to me now. Its a lonely place and it leaves you with far too much time to think. Its where I have to be strong when I wanna be weak but the bottom line is that I will fight to the death for Chris, Olivia and Jayden. I'm not sure if I could handle everything I go through if it wasn't for them. There is always others in a worse situation than me. I will build myself back up, enjoy xmas and new year then January is when I kick start the gym again. I have a plan.... Onwards and upwards xxx
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Saturday 17 December 2011
What I Live For!!
Friday 16 December 2011
Bit Lost
I know for a fact every person with CF will experience feeling lost quite a few times throughout our lives.
I am going through this at the moment. Reason being, I am in bed most of the day every day, I can't play with Livvy or do much with Jayden as I feel completely exhausted.
It really is wrecking my head right now cos what kind of life is lying in bed all day? I always here Livvy giggling and talking and know I'm missing out on that! Chris is looking after the kiddies pretty much single handedly at the moment which I know he doesn't mind but I want to be able to help.
I have been havin some terrible chest pains all day long but today they have eased. I am seriously keeping my fingers crossed that I have turned a corner today with feeling slightly better but I think its going to be a slow process. The thought of having to wrap all the pressies, get the xmas food shop and a couple more pressies fills me with dread it really does cos everything even as little as cutting Jayden's veg for his purees today knackered me out.
Anyway enough of me moaning. Over and out!
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Tuesday 13 December 2011
Unknown!
I'm in unknown teritory at the moment! Let me explain..... I never actually want to be in hospital let me get that clear but I have always been quick ish to get myself in there to sort out any infection. I have been having iv's every 4 to 6 weeks all year until I had Jayden. As it stands it has been over 5 months since I had iv's as last lot was when I had Jayden.
I have not been sleeping properly for a week and when I struggle to rest properly I can never get sputum off my chest. So the last few days I have gradually got worse and worse to the point I rang the hospital and put my name down for a bed. Last thing I wanted was to be super poorly for xmas. I was told there was 5 people infront of me waiting for a bed so it would be the end of the week (this was on a monday). I had a great sleep last night and woke up feeling a different person. Clearing the sputum I needed to clear and had some energy again YAY!! I felt that much better for the first time in my life I rang the hospital back up and cancelled my bed!
As a little side note I would like to mention my Mum..... She gave up a high paid job to spend more time with her family and we are all very very proud of her. We would all much rather have her time than her money and after druming it into her for years she finally listened to someone else lol! And she walked out with her head held high. It was a huge step into the unknown for her but we have had a great time since she quit, going shopping and for lunch and generally spending lots of time together. Me and my Mum don't always see eye to eye as we are soooo similar but since she quit her job she has been a different person :o) I have loved spending time with her and I'm looking forward to many more hours shopping and lunching! Well done Mum you are a star.... All your grandkids are gonna love seeing you more xx
Anyway back to my point.... So I rang and cancelled my bed and went shopping with Mum and Livvy to get some more xmas pressies and managed to walk around for about 4 hours. Usually when I have felt really poorly I have just stayed at home and not do anything but if I can keep active and as soon as I feel better I will get exercising again.
I am really stepping into the unknown with knowing what my limits are as I am not giving into CF anymore. I am not letting it stop me from doing things with my Mum, kids, hubby or anything else cos my quality of life has massively improved since I upped my fitness and I refuse to go backwards. I can't wait to get back to the gym but for the next week or 2 I am quite happy to get my fitness from spending money walking around shopping and eating lots of nice goodies for xmas.
So I don't know what's gonna happen but I know I'm the best I have been in a very long time so, yes you guessed it.... Onwards and Upwards baby!!! Xx
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Friday 9 December 2011
From My Bed!
Well finally the cold caught up with me and I got a chest infection. BOOO! Annoying but I guess to be expected?! Have started some oral antibiotics to hopefully get me through xmas and new year without needing to go in and have iv's.
I feel like all my energy has been sucked out of me. It makes it hard to look after the 2 kiddies even with Chris to help me. My patience is a little tested due to being tired too which is not really fair on everyone that has to put up with me! I just hope they understand I have my off days like everyone else.
I have felt so full of life and buzzing recently which has been amazing considering the year I have had! Which is why I am disappointed to be lay in bed while Chris and the kiddies watch Happy Feet downstairs. I don't wanna have to come to bed in the day and miss out on things going on downstairs. It is so frustrating but there is no point me pushing myself as I will just end up getting more poorly. My body is calling out for a bit of rest.
Even with my body feeling a bit weak and tired I still managed to get on my exercise bike with a bit of help from "Love On The Transplant List" which is the most moving documentary I have ever seen. It made me move my butt and do a bit of exercise to help myself. Usually I feel better after getting motivated and doing something but today I had no such luck I just feel knackered and my lungs are hurting me.
Oh my god I am going to stop moaning now as I'm sure no one wants to read about someone going on and on lol.
So I will get some rest now then get up and put some make up on as I am sporting the "white as a ghost" look! Go to the docs then its back home to play COD with the hubby and have an early one I think xxx
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Tuesday 6 December 2011
Friday 2 December 2011
1 Day Later!
I can't believe what a difference 24 hours makes in our lives! You only have to read my previous post to realise I am in a highly positive state of mind at the moment and also working hard at strengthening my body to be healthier.
Now I can't say I have completely lost my positive thoughts but they took a slight battering this morning at the gym.
I had a bit of a cold and it has now slowly started turning into a chest infection. Definately slower than normal but its happening.
I will be honest with my symptoms now so beware lol!! Since last night when I was in bed I started to cough up a lot more sputum from my lungs and it was also thicker than normal. This morning I went to the gym and truely struggled which annoyed the hell out of me as its my first step backwards since I started going! I still managed 35 mins of exercise but it was so damn hard... My heart rate was through the roof and I kept having coughing fits and people were looking at me... After 15 mins on the bike I hid inbetween the CV room and the weights room and coughed my guts up and where I stood no one could hear or see me. Once I felt slightly better I went back and did 25 mins on the treadmill. My heart rate never settled and felt like it was gonna beat out of my chest. It makes sense because with the thick sputum blocking my airways I have less oxygen getting through so my heart has to work harder to pump the oxygen around my body.
I could tell it was purely my lungs playing up as I really pushed myself on the weights and felt not too bad at all. Needless to say I have been exhausted ever since I left the gym. This is the hard park for us CF people.... I have been able to do so much recently and all of a sudden I feel like I need to rest and put my feet up and not do anything. But 1, I have 2 children and that's not possible and 2, even the closest people to you struggle to understand my sudden lack of energy and tiredness cos I look exactly the same on the outside as I did yesterday and the day before etc etc. I completely understand that no one will ever know fully how I feel apart from people in a similar situation but its really frustrating when my body doesn't co-operate! Grrrrrr @ CF!
BUT!!! There is a but!! I have not lost my determination. I will still be going to the gym no matter how many people want to stare or how hard I cough! I am not letting CF dictate to me anymore its just not an option. Though I will be taking it slightly easier for the next few days :o). Xx
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Livvy Pretending...
Thursday 1 December 2011
Busy Busy Busy Bee!
Buuuuzzzzzzzz!
I never thought I would see the day where I was so busy that when I did sit down and try and chill I wouldn't like it!!! But it has happened! I really really don't want to sit down!
Reason for this is cos I CAN actually cope with being busy! I CAN cope with walking around shopping, I CAN do housework, I can play with Livvy and run after her without feeling exhausted or having a huge coughing fit! It feels so damn good I cannot even begin to tell you! I feel normal again and like my body is stronger and able to repair itself without the need for antibiotics or other wondeful potions the doctors would like me to take. My prescription to myself is pure and simple..... EXERCISE! I will say it again EXERCISE! I would put a million pound if I had it on exercise being the key to staying out of hospital. Also alongside exercise another thing that is absolutely essential is a PMA... Positive Mental Attitude! As cheesey as it sounds I swear it is true.
I am putting my faith in the gym and my determination to stay positive to stay out of hospital and infection free.... My first point that I have proven to myself is that I have had a cold and usually it goes straight onto my chest but ohhhh NO! Not this time! I will not allow it! I have carried on exercising through feeling rubbish and now I am pretty much recovered from the cold without so much as a sniff of any antibiotics :o) proud of myself and so I should be!
Long may the positivity continue and even improve! My new motto is "Onwards and Upwards" and that is the only direction I am planning on going!
Love to all that have supported or been there for me! You know who you are! Xxx
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