Wednesday, 8 June 2011

24 hour oxygen and acting posh

So I have been doing lots of little odd jobs...putting stuff up on ebay, going bank, seeing friends for lunch, posting off the stuff i sold blah blah blah. Got stuck in many different queue's in lots of these places and then realised it was half term!! I had a few days of doing not much as I was really tired. I dont know what it was down to really but I need to think about getting some salt tablets for the hot weather, as this can cause CF patients to feel extremely tired as we lose alot of salt when we sweat. Lovely!! I went shopping with mummy one night to Lakeside to make a start on birthday shopping for my brother. Again i was pushed in a wheelchair. The less said about that, the better.

The weekend was great. Friday night, me and Scott went to see X-men and we had pre-booked the tickets. When we got there, the tickets were not registering and it turned out the screen was overheated and that the screening had been cancelled. We were offered a refund (which we got) and then they took us into the earlier showing which had started 4 minutes ago. Scott moaned that he missed the trailers but that was a good thing for me!!

Saturday was a VERY tiring but brilliant day. We got all 'poshed' up and spent the day at Epsom Derby horse racing!!! I won absolutly nothing and scott won the first 2 races...that was only because he put £1 on every horse running!! Haha! I decided I was going to take my portable oxygen concentrator so I didnt have to struggle during the day as we were going on a minibus so I wouldnt have been able to leave. Mum plugged it in to charge overnight and in the morning when I went to leave, it hadnt charged.

I still went. Without oxygen. I left home at 9am and got home at 7.30pm. Call me stupid or whatever comes to mind and I would prob agree. But I am stubborn, I had been looking forward to the day for ages, I was all ready to go and found the oxygen wasnt charged at the last minute, and CF has stopped me from doing so much already that I didnt want it to stop this day out. It was a 15 minute walk from the coach to the races which was just about manageable before and after the event. Once we were sat at the races, all the betting places and food and drink stands were steps away so that was fine. Scott was, as he always is, truely amazing and I didnt have to walk anywhere at all as he did it all.

I paid for it that night and spend all of Sunday indoors (after mcdonalds breakfast of course) resting but it was worth it. I was so tired and my little lungs felt really heavy and that is why I have come to a decision. I have spoken to Lance and requested to have portable oxygen sorted out rather than the portable concentrator. The concentrator doesnt last too long, is quite heavy to pull along and more 'obvious' to everyone. For people that havent seen it, its similar to a suitcase on wheels but not as big as a whole suitcase lol. If I have portable oxygen, I have a main base at home and fill the little cylinders up from that. I can then carry them in my bag or something and they last 8 hours. Bit more discrete and manageable. Having to have oxygen on when im not indoors is horrible as I hate people seeing me with it on, however, if it means i can do more and breath better, its worth it.

x Lots of love x

No comments:

Post a Comment