I thought it was about time I gave you an update on progress/decline over the past month or so.
I am on Oxygen at 15 litres per minute 24/7/365. Sitting quietly in a chair watching TV my Oxy Sats are around 90%, lying down in bed about 86%. The slightest form of exercise, standing, walk 3 yards, wash will knock them down to around 65%, sitting here at the keyboard and typing they are 74%! So you have to carefully plan everything in advance and rest very very frequently.
I can get upstairs and downstairs to bed using a stairlift but everyday things such as washing have got worse and worse. Used to be able to take a shower but not had one since before Xmas, had to resort to strip body wash but it got slower and slower until last week when it was taking me an hour.
I realised just how bad things were when a Hazardous Materials van turned up looking for the nasty stink.....turned out to be my feet which I have had trouble reaching! So the Team arranged for a Care Worker to come in every two days to do a full body wash, all free of course, and you can realise just how far gone I have got when I can safely say that having my feet washed and massaged in a bowl of hot water compares very favourably with what I can remember about SEX!!!!

The only medication for my problem is the Oxygen and Morphine! Now you may think that because I am on Morphine I am in pain, no way! In fact if you read the leaflet that come with the Oramorph it states you should never take it if you have lung/breathing problems as it suppresses respiration! However, it turns out that in small doses it helps fibrosis patients. If you get short of breath you start to pant, which makes you ever shorter of breath, just like positive feedback, the morphine counteracts this and slows it down.

So all in all I am perfectly fit, sound of mind, I just cannot get enough oxygen into my blood, and 15 litres is the maximum permitted!

Take Care