I have only just realised I haven't blogged since August last year. So my only New Years resolution is to blog more because I can't really make anymore and I don't want to I'm happy with how things are despite the health problems over the last twelve months.
So what's been happening?
Well since i was in hospital in August I had been just trying to do my best to stay healthy but it wasn't a very big success, I ended up really ill AGAIN and despite trying everything possible within my control to shift whatever was causing my chest infection and by early December I was like a waterfall of phlegm producing about 100ml - 200ml of phlegm per day whilst doing AD and normally throwing up just as much phlegm even when I wasn't doing anything. So I decided it was time to come in and start getting on top of this blooming chest infection and start working towards a better lung function.
As I went in so close to Christmas I spent 4 days in hospital and then completed ten days of Ivs at home. I feel better but my lung function still hasn't got up to where I want it to be and to be honest I haven't got near my usual lung function in over twelve months
My lung function seems to have disappeared!!!!
Twelve months ago my lung function was 2.6fev1 or approximately 65-70% and that has been my average lung function for quite a few years but twelve months ago I got very ill and my lung function dropped to approx 1.8 fev1 I had Ivs but my lung function didn't rise above 2.1 even after a few more weeks treatment it only got to 2.3fev1 and I just thought "oh well just keeping doing my treatments and exercises and my 2.6fev1 lung function will come back" how naive and optimistic I was.
Within a few weeks it was dropping again and late last year it had dropped down to 1.7fev1 so late December I went back into hospital to try and get some Ivs and start getting my lungs back again.
Well this was my third admission in twelve months where I haven't seen my lung function improve past 2.3fev1 and currently I'm only about 2.1fev1
So do I accept that I've lost a little bit more of my lung function and just move on or do I try again??
After some discussions with doctors and a harsh talking to by myself I decided of course I'm not going to accept it so I'm giving things another go by myself to push things tidy up my bad habits and become more consistent with exercise, treatments and drugs
I will be the first person to admit I'm not perfect with what I'm supposed to do
Although I'm always saying to people look after yourself and get on with your treatments I'm not always very good at looking after myself at doing what I'm supposed to myself. I never put myself before others because I'm just not that person and the same goes for my health I always make sure everyone else is okay but I forget about my own health.
So after the last admission and seeing my lung function still isn't back to where I want it to be I just won't accept I've lost that lung function, not yet anyway, so I'm pushing myself to become a better person and sort my consistency out.
Now please don't get me wrong I still work bloody hard to stay fit and healthy I'm not trying to say I don't do anything or I'm lazy nothing like that but we can always improve things. At the moment I'm not always doing what I should, nothing major or a huge crime but it simple things like missing the odd nebs or AD breathing exercises, these things only take five to ten minutes each time but any other cf will know exactly what I mean when I say doing everything everyday can feel arduous and time consuming and feel like treatments and tablets is all we ever do.Its silly to feel like that normal people will say but trust me there are days where you just want that ten minutes to yourself and that ten minutes is your treatment time
Anyway you get the idea of what I mean I hope and I best stop bleating on about it and excuses
So I thought sort it out and get it done.
I'm now making sure I do
5 nebulisers
1 - 2 AD sessions depending how I feel
And getting on my bike at least 3-4 times a week,
And of course when I'm not on my bike I'm walking my beautiful beagle dog
And that's every single day
And so far I've been doing everything for ten days and slowly I think I'm noticing a difference, my lung function may still not be improving but I feel better within myself and that's the most important thing and I'm sure my lung function improvement will follow because I'm not accepting I've lost it yet.
2 days ago the cf nurse came and visited me and checked my lung function and it was still 2.1fev1 but I'm not giving up yet and although disappointed that it had not increased I was happy to say it hadn't gone down at all. So I will keep pushing on as I'm sure it's going to come in time
Campaign Time
Enough is Enough
I'm currently a patient at Kings college hospital London where I attend the Adult CF ward for appointments and attend for IV treatment
Well in August 2013 all the patients at Kings received a letter from Kings that the long awaited new cf ward we had been hearing and talking about was in the planning and we would be moving in by the end of 2014. Many of us spoke and was like great it's final in writing it must be all good and this is brilliant.
Well after this letter absolute silence not another word was heard about it.
About a year passed and after months of mulling things over I decided enough was enough, so I wrote a complaint letter to the board of directors at Kings firstly to complain about the lack of communication about the new ward and secondly about the state of the current ward and how it was failing the patients and the staff and most importantly it was putting all the cf patients at risk because of cross infection and the fact we all share facilities was breaking NHS guidelines
Well this seemed to set things off and the cf trust took note of my letter and got involved and wrote a letter of their own as did other patients and so the EnoughisEnough campaign was born and since then a few of us have cmpaigned for the new ward we desperately need and it's been getting great coverage
Anyway I will write a full blog about the whole thing shortly
But for now I'm cycling like mad to get fit looking into every nutrition product possible to help me improve and go further in April this year I'm doing an abseil for cf trust at the London Olympic park so I'm doing my best to stay fit for that and then hopefully in July/August this year I will get a chance to do the londonsurrey100 bike ride and that's what all this bike riding and fitness push is for. By having a goal a have no excuses no reason not to get fit and push myself and my lungs to get better. I will get fit whilst raising money for charity and that makes me feel very driven and warm inside two good things all from one thing, I find out if I get my place in the bike ride within the next few weeks so until then I will just keep getti on that bike and enjoying getting fit and hoping I get a place to do something amazing
Thanks for reading
