Thursday, 26 November 2009

x Having a rant.... x

Right where do i start....erm.....

Tuesday was a looooooong day and we was up the hospital for an appointment at half 9 to see the pre-assessment people to talk about my portacath operation. I was asked all the usual questions about my health and told about the procedure which i feel not too bad about but that doesnt mean i want it lol. I am pleased to say that i didnt have to have the blood tests as i had my annual review bloods and lots of tests done when i was in hospital in September and they are still ok to use so yay!! Had to have MRSA swabs and an ECG monitor as my heart was racing and mummy took a picture.

I have got to go into hospital for the usual iv's about 7th December to make sure my chest is clear and then my operation is 17th December at 7.30 in the morning. 'Normal' people may normally be allowed to go home the same day as the operation but because of the CF it will proberly be a few days until im home but as long as everything goes ok and im home for xmas i cant complain. The assessment finished about half 11 and clinic wasnt until 2 so we went into lewisham to get some lunch and have a look around the shops. It was while i was walking around there that i got the horrible news that another friend had lost their life to CF. Joanne was 25 years old and after a battle to put on weight finally got put on the transplant list...but she never got her call and died at 5.30am.

Clinic was poop. I lost a little bit of weight but i was on antibiotics and had been sick the week before so it werent a bloody surprise but i still got moaned at!! I am now 45kg. Lung function was the same which i was happy with because my chest was abit shitty and, by this point, i was knackered and had no blow in me!! I spoke to the doctor who was fine and mum mentioned about my tiredness and motivation...he said that this happens to many people....they finish uni and then have nothing to do and it can be quite depressing...which i believe has happened to me!

I am NOT depressed but if things stay like they are, i can see a possibility of that happening. I am fed up of my days just consisting of CF related stuff and staying indoors until everyone gets home from work. I have nothing to look forward to and when people ask "what are you doing today?" i have nothing much to say, so come up with stupid things like "im doing my room" or "having a shower". I told this to mum and the doctor whilst crying but they both understood.

I understand that i need a break to concentrate on my health and getting better but i need to do something. I have applied for a job at a school doing resource work which is 10 hours a week so that is managable and i sooooo hope i get it. I hated giving up the nursery which was perfect hours for me but not possible because of the germs. I hate not doing anything - I feel useless, bored, and i believe it sometimes makes me feel worse - i have always said i will never let CF take over my life, it will just be a part of it, but now i feel like it IS my life and i dont want that. I am trying my best but if i do have a bad day where i dont want to do as much exercise, then let me have a day off - everyone else has bad days but when i do, i get moaned at.

Infact there was a study done by one hospital which was written about in the CF Trust magazine which challenged the staff that worked with CF patients to live 6 weeks as a CF patient and do all the treatments, physio, tablets, diet that is involved. It showed that by the end of 6 weeks, only 50% of the CF stuff was complyed with and thats without them having the dodgy lungs, stomach problems and tiredness that comes with CF. So if professionals cant do it 24/7, please dont expect us to - we are only human!!

X Lots of love x

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