Friday, 28 January 2011

Up....then down

This week started off well and then went downhill from then but im still not too shabby - just yet!!

Monday I had a big burst of energy which lasted all day. I did all my usual morning bits and then got to the doctors in time before they shut. From there, I went to the gym with my lovely new pink headphones on and did really well. I did about 45 minutes on all the machines altogether which i was pleased with as i had a cough too! I then got home, sorted out all my medicine cupboards and cooked dinner. On tuesday, the energy stayed with me, so I went for a big shop and lunch with my best mate Steph. We had such a good time and ended up being out for longer than expected!!

The last few days Ive been really tired and my chest is very productive and thick. Eww. I thought it maybe because I did alot lately but my chest has been up and down for weeks now and I think its starting to hit. I am trying out an antibiotic that i havent had before but others have said it works for them, and seeing as im resistant to the others, i may as well try it. Ive got to pick it up later on today from the hosp and will pop into the gym on my way back for a little while. Ive got clinic on tuesday for a check up to see if the orals are working and ive been told to bring some phlegm....what a glamourous life I lead ;)

Just a short-ish blog as im on my bros laptop as mine is being fixed and im getting annoyed as typing is sooo hard and some buttons get stuck so now my fingers hurt.

x Lots of love x

Thursday, 20 January 2011

The venflon is back :(

God i forgot how bloody annoying and sore venflons are!!

I had 2 scans booked: 1 on friday and 1 on monday. I had to have a line put in for each scan in order to put a dye into my blood stream. I couldnt have it in my port as they have to push the dye in fast and the pressure of pushing it in at that speed may snap the port line, so i definatly didnt want to risk that! I also asked if i could have the scans on the same day but i couldnt because they both use dye, it would be too much dye for my kidneys to handle. Bugger.

Lance met us friday morning and we found one good vein and he got the line in. He said i could keep it in all weekend so that we didnt have to worry about finding a vein on monday, and i agreed that this was prob the best option for me! I just had to flush the line once a day with heprin (which keeps the line clear and helps it not block).

For the lung scan I had to inhale radioactive gas for 3 minutes through something similar to a nebuliser, then had to lie down and have xray type pictures taken for about 10 minutes. The lady then injected dye into my line and then the same xray pictures were taken again. I didnt like the woman who did it...she was very rough and spoke to me like a child.

The scan on monday was a CT scan of my lungs. I got there and had to wait over an hour before being seen as they were behind and there was an emergency case whilst i was there. They took a few pictures first then the machine pushed the dye in and it was such a weird feeling. I went all hot and it felt like my head was soaked in sweat and i instantly felt like i was about to wet myself and it was really hot. The feeling went after a minute and then I was finished. I didnt like the scanner it went round me and made a loud noise!! I had my line taken out along with a few swear words thrown in as usual!!

The weekend was good. Friday night, me, mum and scott all sat in mine to watch 24. Saturday, me and scott went to the cinema with another couple, Sirin and Carlton, to see The Green Hornet which was quite good actually. After we were starving so we went to the harvester where we met another couple, Danny and Debbie, and we all ate alot and had a great time.

Starting to get abit more of a cough again so will have to try and get rid of it again. I also realised the other night that i had been nebbing my dnase and it ran out of date in december!! Oppps....i have put in an order for more supplies so have no dnase for a few days. I have other nebs to loosen stuff but i like my dnase!!

x Lots of love x

Wednesday, 12 January 2011

Back to the gym with a clear chest :)

My chest is clear!! I did it! Woohoo!!

I used a few extra nebulisers, stuck to my dnase neb and did my physio little and often. My chest feels better and is no longer crackly and sore. I still have a tickly cough due to my nose still being abit watery but that should go with time. Really pleased i managed to sort it out without having to have iv's or steriods or anything. Since the weekend, I got my appetite and energy back so its all good.

Im swamped with bloody appointments which im not happy about. I finally had the massive, sharps bin picked up from when i finished iv's before xmas as they werent in my area until that date. I had clinic yesterday which ive already spoken about, also got a lung scan on friday and then a CT scan of my chest on Monday. Great. I will really look forward to them - not!

Now for the good news...I started my Healthwise thing today and it went well. Healthwise is a health programme for 3 years that you go on if you need to exercise for certain health reasons. It is direct debit of £11.95 a month which is great value and I can use the gym, swimming pool and attend any classes whenever i want. The man was really nice and helpful and asked all questions about my health, medication, abilities and my goals and then took me into the gym to sort out a programme. The programme varies alot taking into account how differently CF affects me day-to-day, for example, the treadmill speed was set and he said to do it between 7-10 mins and we will aim for 15. Some days i will be able to do more than others so he set time frames. I wasnt given lots of cardio stuff yet as im still trying to gain weight and dont want to burn it off, however, I need to do some to strengthen my little lungies. I was shown some weight exercises to help strentghen my arms, legs and help with my posture. Im seeing him again in February so we can look how im doing and make changes to the programme. I cant wait to start now!!! Im off to sort out my music on the ipod which helps me last longer in the gym and helps with the motivation :)

All in all a good blog post I think!!

x Lots of love x

Thursday, 6 January 2011

Snot, snot and dancing :)

Since the day before New Years eve, I have been unwell. It suddenly hit me and I was very tired, not hungry, hot and sweaty and chesty. I also threw up my feed - which tastes vile!! After speaking to the doctors yesterday, he said it sounded viral. I started to feel better bit by bit but it stayed on my chest. I went hospital on tuesday to try and get something to help. My doctor is great and spoke through options. We are going to focus on more nebs to loosen things and do little bits of exercise to help shift it. I didnt want iv's again already as its only been 2 weeks. I lost abit of weight from 47 to 46.6kg but i expected that due to having a virus and throwing up - any 'normal' person would lose weight too!!

After kicking the plan into action yesterday, I feel abit better today. Not coughing as much and breathing better. Am going to continue to do what i did yesterday and hopefully things keep improving. I have developed a very snotty nose. Yesterday, thats all i did was bloody blow it. This morning has been the same. I want to know where all this damn snot is coming from!! Im only little and so is my nose, so how does it all fit!! Its at times like this my nickname from Scott fits. He has many nicknames for me - most of them horrid lol - but he calls me Tissue Lady. When i have a snotty nose, the tissues multiply. He loves me really :)

I brought Steph tickets for Flashdance at the theatre for xmas and it was last night at Shaftesbury Avenue in London. We parked straight away and found a Zizzi's restuarant opposite the theatre so we ate in there. I havent seen the film and neither has Steph so we werent sure of the story. All i knew was that it was about dancing and I had seen the clip of the song 'What a Feeling'. The reviews were great and we both like the theatre anyway so i booked them. It was brilliant and there were many times we were dancing and laughing along. I would urge people to go. On the way back to the car, we kept singing and dancing and kept jumping about (well as much as i can jump!!) which was so funny. God knows what people thought of us. Mind you, London is full of nutters so we fit right in :D

Its really cheered my up going out. At first, I really had to push to make the effort to go but it was worth it. Feeling better today apart from i need a shower, but i have to put the heating on first as its too cold!!!

x Lots of love x

Sunday, 2 January 2011

My 2010 in full view

Happy New Year everyone!! Welcome to 2011. What a year to say the least. Every year has up's and down's along the way so here are mine:

January: Went to see Avenue Q at the theatre with Scott and Legally Blonde with Steph, both were brilliant, and i finally plucked up the courage to have a PEG fitted.

February: Me and Scott made our own valentines day cards and I got my PEG fitted (yes - i do class this as a good thing) :) However, it was a month full of pain to be honest. I had plurisy and I had a bad chest infection which meant an admission to hospital.

March: Still in hosp after PEG operation due to trapped air which was squashing my lungs. Dyed my hair brunette for the 1st time ever and went on a cheap holiday to Dymchurch with Scott in a caravan which was great!!

April: Shit hit the fan basically!! My stomach decided to grow over the inside of my PEG tube. Operation to change it happened, went wrong and I woke in intensive care on a ventilator. My stomach had been cut open as the PEG got 'lost' and a new tube put in place. Horredous month :(

May: Scott's 21st birthday which consisted of a meal and a great night out at the o2, and our 4 year anniversary. However, i also spent most of May being sick, feeling sick. Eventually rushed to hospital, sedated and had a camera down where they pulled the PEG tube out of my bowel as it had made its way into there. Meanwhile, I lost all my weight and went back under 40kg.

June: Rushed to hospital by ambulance due to an allergic reaction to iv antibiotics and couldnt breathe. Good month as I went on a Chelsea football club stadium tour with Steph, my little bro's 18th birthday, had my PEG tube changed to a button, and went to Malaga in a villa with my friends.

July: Went back to the gym for the 1st time in years, had a 7 hour shopping trip with mummy for my 22nd birthday and my weight started to go back up!!

August: Day out with Steph at Madame Tussuads, day at Legoland with Scott, went to London for a photoshoot for 'Love It' magazine. Horrible news that my friend James who had CF suddenly passed away and I had a fight at the Jobcentre!! xx

September: 1st attempt at Yoga class with mummy, lung function and weight the highest its been since last year, article in 'Love It' magazine was published. Bloody feeding pump which beeped all damn night and ended up in the porch wrapped in a towel!!

October: Hospital m.o.t, getting drunk for daddys birthday, another great night out at a party, got a new smaller feeding pump, weekend in Rainham, and changing my PEG button which was terrifying but easy.

November: Holiday to York for a week with Scott and the doggies which was brilliant, and referred to Healthwise scheme for exercise. But was summond to court by ESA benefits as apparently i am well enough to work. Wankers.

December: Snow, lots of shopping for pressies, back to blonde hair, JLS concert, great xmas eve and xmas day!!

I have thought about my new years resolution: of course, it goes without saying that it will be to put the weight on and get my lung function up. However my target be able to run. This may sound silly to some people but to me it would be great, even if its only for about a minute. I also want to continue to make the most of things and 'do more'. 2010, although the obvious bad things that happened, i can say that i had a good year and did lots!! I hope that continues and Ive already started a list on this blog on the tab 'My Year 2011', which has things im looking forward too. Positivity is very important to me, as without this, it's very hard to get through things.

I just want to say thank you to all the special people that have really helped me through this year: I have had many messages from friends and every single one means alot and makes me smile, however, i cant mention you here are a few: my family of course who are amazing, scott and his family, my best friend Steph, my mates Ria, Joey, and Sirin, my family friend Michelle, and of course my brilliant CF team Lance and Jen. xxx

x Lots of love x