I have recently discovered the joy of the mobility scooter! If you know me you will know I hate shopping of any kind, it makes me tired, I get out of breathe, I feel lightheaded, get headaches and I avoid it all costs. We get our food shopping delivered (when Pete is home to help unpack) and I just avoid doing any form of shopping in general. This is OK for most of the year as I don't have any money to buy things anyway, however at Christmas time it can become more difficult. There is only so much online shopping you can do, sometimes you just need to see the item in the flesh or try it on etc.
Say hello to the mobility scooter! Most shopping centres have them to rent for free, you book them in advance for however long you like and off you go! Now obviously there are downsides to these scooters, for a start they are not exactly very cool and I think it took a lot of nerve for me to admit that I needed to use one as it's just another way my CF makes me feel useless, feel different and acknowledge I have a life threatening illness that is worsening slowly. Secondly, there is a high demand for these scooters at this time of year and it can be difficult to book one. So you have to plan way ahead when you are going to go shopping and make sure you call as early as possible to book one and you have to turn up at a certain time and leave by the end of your session. You can't just think, ohh I'll go shopping tomorrow when I'm up and ready. It requires planning. Thirdly, these scooters are pretty big and won't fit in shops, I ended up taking out a box a mannequin was on the other week at the gap wasn't big enough! So you spend a lot of time getting off the scooter and going in the store or to look at a certain item as you can't get to it on the scooter. Lastly, they beep when you reverse, it's so embarrassing! As if it isn't bad enough being in your 20's on a scooter, without the damn thing beeping loudly when you need to reverse, and by the way people do not move for you!
So yes, the mobility scooter, a life saver for shopping but not exactly something a woman in her 20's wants to be familiar with. Here is a picture of me stuck trying to get out of a lift, naturally Pete took a photo rather than help me...!
I'm rather excited to tell you I have a new inhaler that replaces my tobi nebuliser! I nebulise tobi which is the antibiotic tobraymcin twice a day, I nebulise tobramycin to try help control the infections on my chest. Through the old type nebuliser called a porta-neb this would take 30-40 minutes for each dose and that just one thing I nebulise every day. Then the I-neb was introduced and this cut nebbing time for tobi to about 15-20 minutes for each dose. Now I have a tobi podhaler which takes about 6-8 minutes to do each dose! But the greatness doesn't stop there. The capsules do not need to be refrigerated as they are a powder not a liquid, everything is delivered to my house (no GP's or chemist required!) and nothing has to be washed afterwards. I'm really impressed with some of the advances in CF happening at the moment, its improving not only quality of life as it means less time doing treatments but also it will improve compliance with treatments as well. I'm going to do a video of me doing my podhaler for my next blog but here is a picture in the meantime. The white tube is not actually the podhaler but the case, the podhaler is inside and much smaller. It does make me cough quite a lot, particularly the first breath and I find I have to do three inhalations per capsule rather than two as they suggest to breathe it all in. Also I am having to try it one month on - one month off rather than being on it constantly (I assume due to cost) which I'm nervous about. However so far I am impressed!
Following on from my last post I'd like to share the latest comment I've had that has upset me. A few weeks ago my friend and I went to see the new Twilight film (judge me all you want...!). The car park for the cinema is lower than the cinema so you have to walk up lots of steps. I tried to park in disabled but it was raining and cold so of course the spaces were all full of people that are not disabled. Therefore we had to walk up loads of steps in the cold and hence I was coughing away. A couple in front of me turned around and asked if I was going to see the James Bond film? I shook my head (coughing too much to speak) to which the man replied, 'good!'. His partner then quite nastily told me I should be in bed not at the cinema! My friend said she was so mad she had to bite her tongue! I was concentrating on trying to breath too much to have any kind of thought at the time. Don't you just love people, more concerned about their film viewing than if the girl behind them can breathe or not!
Merry Christmas to everyone! xx
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