"So what's it actually like to live with cystic fibrosis?
Well here goes
When I wake up I start by taking these :-
That's
Two Lansoprazole
Two vitamins A & D
Two Adcal D3 tablets (because I'm osteopenia)
Two ursodeoxycholic acid
One tocopherol acetate tablets
Then I do the following antibiotics throughout the day :-
Two fucidin tablets three times a day
Two doxycycline tablets once a day
I take the two antibiotics mentioned above because I'm currently culturing MRSA in my lung sputum results
And
One Azithromycin tablet once every three days to help with inflammation
Ito help my lungs I do these :-
That's two pulmozyme per day one in the morning and one in the evening to help breakdown the sputum growing in my lungs
And one hypertonic saline per day again to help me remove the sputum from my lungs
These are nebuliser treatments that I do using an ineb. This device helps to transform the liquid into a vapour which I can then inhale into my lungs to help it start its job
Everytime I eat I have to do these :-
These are Creon 25,000 pancreatic enzymes
I have to take between three and twelve everytime I eat and the quantity depends on how much I eat or if I drink a fatty drink like milk etc
On average I take around 40 tablets per day
Oh on top of the Creon I need this. :-
That is novorapid short term insulin as I have cf related diabetes (cfrd for short)
I have to inject everytime I eat anywhere between 10 - 30 units per snack or meal.
On average I inject about 100 units per day
Twice a day I try to do something called Autogenic drainage
This is a type of breathing technique that helps to loosen and shift the mucus up and out of my lungs
I will admit I'm not great at doing this but I'm always trying to improve and am getting more consistent with it
Throughout the day if I'm struggling to maintain a good weight I drink this :-
That is a scandishake
It is mixed into full fat milk and helps give my body what it needs to either maintain or gain weight
Each shake with full fat milk contains approximately 600 calories
And finally before I go to bed I do this :-
I know that looks similar to another item mentioned above but it's not
This is levemir. It is a background or long term insulin that I inject once a day approximately 30 - 34 units. It is designed to stop my sugar levels from increasing once the novorapid has worn off and to give my insulin levels a constant help throughout the day
Well that about does it
In summary I take approximately
60 tablets everyday
Inject insulin approximately 4 times a day and approximately 130 units
I do three lots of nebulised antibiotics
Two lots of autogenic breathing exercises
And finally at least one scandishake per day
And I still lead as normal life as possible and do things that anybody else does I.e. Go to work, visit friends, have days and nights out, go on holidays and play sports
How?
That is because to me this daily routine is a normal life
I know no different in life when this is how I live my life
People say don't you want a normal life?
Well you know what they say
What you've never had you've never missed.
I would also like to add that I'm not the only person in the world who lives there life like this
Of course I'm not there are others who may do more and others who have to do less in there daily routine.
I just simply wanted to show you what a day in my life is like
Thank you for reading
