New York Marathon

Well, I think you can gather that I will not be running the New York Marathon, but I know someone who is, and even better, she is running it in aid of Cystic Fibrosis. Alison is around the same age as myself, and has already run the London marathon for CF. Her family are good friends of my own family, and have always been so supportive of all our fundraising events. The very least I can therefore do is give Alison a mention here on my blog, and put a link to her 'Just Giving' page where sponsorship can be donated online (click the banner on top right of blog).

Lots of Luck and thank you for choosing to support CF once again!

Wheel Chair Rally Driving

Well, I am almost finished my IV's - 2 days and counting. I am feeling better, although still very tired at the moment. Sometimes the antibiotics themselves can really drain you though, so hopefully I will feel much brighter next week.

I did manage to go on my trip to Arran and had a nice relaxing time. We had my friends civil ceremony on the Tuesday morning and a meal in the evening, so I was able to have a rest in the afternoon. I was really tired on Wednesday though so we decided the best course of action was to just drive around the coast, looking at the nice scenery and generally behaving like a pair of pensioners. Fortunately the weather was absolutely beautiful, so we got the roof down on the car and I can now technically say I spent the day outdoors. We did get out the car to take photos, eat an ice lolly and have some lunch. Adventurous pair that we are.





Having had such a sedate day on Wednesday, I felt determined to see some of Arran from outside the car before we left on Thursday. Neither my lungs or my peg tube (which has been playing up big time again) agreed however and I managed a shuffle round one shop before we had to go back to the car again. Not to be beaten, I had brought my newly acquired emergency wheelchair with me, and decided we should give it a test drive. I had borrowed one from the Red Cross a few months back, so that I would have a back up plan for getting out when I was really breathless. Although I didn't need to use it much, it seemed a good idea to get my own so that I have more options for getting out and about. The GP kindly organised that and I got a nice shiny black one (to match my nice shiny black car) just last week. I call it my back up plan, because at the moment I do want try and walk as much as I can, to maintain some muscle bulk and general fitness. However, when I have days when I would choose to stay in because I can't walk further than the next room then this seems like a sensible choice to make. In the past I have worried that by using a wheelchair I was giving in; now I can see it simply means not giving up.


Anyway, to get back to my story, on one of the leaflets we had there was a list of suggested walks and trails for the 'less able' and it had information on suitability for wheelchairs. We selected one that was apparently accessible to wheelchairs and pushchairs. It started off alright - a little bumpy perhaps but generally flat and even. Then gradually the road became more rough and before I knew it we seemed to be in rocky terrain, bumping and jolting and generally taking off road wheelchair use to completely new levels. As we charged down this stony path, Andrew seemed to think that the only way to overcome the rocks and boulders strewn in our path was to gain momentum and just hurtle me over them. I did not know there was such a thing as 'wheelchair sickness' but I can assure you it does exist. To make matters worse, there were several small bridges to be negotiated. I say bridge - they were in fact planks of wood, only about 6" wider than the wheelchair going across streams. I did that thing where you hold you breath, as if it makes everything smaller. Andrew did that thing where you pretend you are going to steer the wheelchair over the side and into the water. Oh, is it only him that does that? I thought so. This face was not laughing. At the point the path was now going to cross a golf course and we had the added hazard of being knocked out by a roving golf ball, we decided to turn back. Once back to the car, I had to take tablets for nausea, pain killers for my peg tube which had been jostled around, and was in need of a stiff drink for my nerves. Andrew had a sore back from bending over almost double and red raw hands from gripping the chair as he rammed it over rocks. Maybe next time we will just stay in the car.


The start of our rocky journey:


Herring Gull, snapped by Andrew from top deck of ferry:

Spot the resemblance?

I thought Seb looked a bit like a sunflower with his cone on. He wasn't particularly impressed when I made him pose beside the sunflower for a photo though - look at that huffy wee face. He is wearing his orange cone as a preventative measure, as I noticed he was scratching at the skin round his eye and the last time he did this it lead to conjunctivitis which went on for weeks. It seems to have helped and he is now on a cone-free trial and the skin is looking much better. Unfortunately he was rather over invigorated its removal and over the course of yesterday I rescued a trainer, 2 slippers and my Pep mask from the back lawn. I'm hoping the novelty will have worn off today.

Health wise, I've been a bit off colour and had to start back on IV antibiotics on Monday. I was really quite disappointed as I only finished the oral ones on Friday and thought I had been doing quite well before that. Its scary how quickly my chest can decide to go downhill again, but I am adopting the 'act quickly' approach and am refusing to let things grumble on. Hopefully these IVs will get me back on track as soon as possible. In the meantime I'm just taking it easy (nothing new there) and hoping for some sunshine so I can sit in the garden. I think that might be asking a bit much though.

I am going to my friends civil partnership ceremony next week, and then afterwards the guests are being treated to a night at a spa hotel in Arran. I am really looking forward to the day, and have also booked an extra night in Arran so we can have a chance to see some of the sites, as I have never been before. Hopefully my chest will be a bit better by then, but we can at least have a drive round the island and admire the scenery from the comfort of the car, so I'm sure it will work out ok. I must admit that trying to arrange going away somewhere with oxygen in tow does make things more complicated, but I think I'm more or less sorted now. I have even decided on my outfit after mum insisted I try things on and decide early, as I have a terrible habit of waiting until the day before announcing that my outfit no longer fits because I have lost weight. I feel like I'm looking a little on the scrawny side just now, but managed to select something that makes me look a bit less so. Clearly some more carrot cake is required..

I'm off now to finish reading Harry Potter. I have been dreaming about witches and wizards for the past few nights. The fact I had a factual discussion with my friend this morning about unicorns would suggest that my ability to separate reality from fantasy is fast diminishing. I must finish the book soon and then read something more adult, before I regress completely. I fear it may be too late.

Plants and Pigeons

Apologies for the lack of updates on my blog, but life has been fairly quiet and non eventful of late. Health wise I am doing ok. My chest went a bit of the rails last week, but I got some oral antibiotics and am feeling much better now. It's funny how sometimes you don't realise how bad you were feeling, until you start to feel a bit better again. It just makes me realise that I can't even begin to imagine how much better I will feel after my transplant. I think you lose perspective of what is 'normal' in these circumstances, but I'm sure I will be in for a pleasant surprise.

The garden is progressing well and the rockery is now planted. We took a lot of care and attention laying out all the plant pots in their positions before planting, but in reality since we don't know what half the plants are or how big they might grow, it will all be a great surprise when things start to mature (or not, as the case may be). Seb has show great interest in the new rockery, and when ever he goes into the garden he heads straight for it, leaping over the small wall into the soil. He then parades around between the rocks, kicks the soil up with his back legs before finally peeing on every plant in site. I'm hoping the novelty of this wears off soon. He did however take this to a new level of naughtiness the other night, when he actually dug up one of the plants and tried to run off with it. Fortunately we were both in the garden and rescued the plant from a crazed and exhilarated Seb, who seemed to think this was a great new game. I have seen him do this once before when he was a tiny puppy. I had planted lots of pots with bedding flowers, only to come out an hour later and find them strewn over the lawn, soil all over the patio and an exhausted little puppy looking rather pleased with himself. Thankfully he never touches the plants in mum and dads garden, so hopefully this was just a moment of madness and will not happen again. Fingers crossed.

Percy the pigeon came into my kitchen the other day. I think it was because I had forgotten to fill up his bath, and he thought he could maybe use the sink instead. I was a little surprised to see him sitting on the window sill when I came into the kitchen from the garden, and quite alarmed when he kept repeatedly flying at the window in an effort to escape. Dad was with me at the time and like any good responsible parent, he chose to quickly run back into the garden and leave me standing there on my own. Seb did come sprinting in from the garden to help until he was told in no uncertain terms to GET BACK OUTSIDE (in that tone) before he made the situation ten times worse. Thankfully in the time it took me to go and get a big towel (which I was going to attempt to catch Percy with) he had managed to find the back door and flew up into the tree, where he stayed motionless and traumatised for the rest of the day. Next time, his bath will be ready and waiting.