Tuesday, August 25, 2009


I was feeling a bit rough over the weekend, but I'm now much better. Unfortunately, the rest of my family seems to be falling apart instead. Following her pulmonary embolism, R has been diagnosed with Protein C deficiency, this means she is prone to blood clots and needs to be careful with long haul flights, and avoid taking the contraceptive pill amongst other things. Fortunately, since she met me this hasn't been a problem (due to my tubes being blocked we don't need to use contraception) so I guess she's lucky she married me ;-). This has also bumped up our travel insurance for our proposed tenth wedding anniversary trip, much more than my CF does, who'd have thought?

Oscar is struggling to poo. For the last few weeks he has been painfully straining throughout the day, we'll check his nappy and find nothing in there, except the occasional pea-sized rock-hard stool. It sounds funny but the pain is sometimes so bad that he howls in pain, it's not fun to watch. We finally took him to the doctors last night and he has been put on lactulose.

On top of this my dad is getting quite poorly. He has a genetic muscular disease called Myotonic Dystrophy (MD). It's not very well known, the symptoms are similar to muscular dystrophy but they tend to present themselves at different stages of someones life, in my dad's case he didn't really have any symptoms and wasn't diagnosed until the age of 50. He's now 64. Because of this he does have weaker arms and legs, but he has been managing to get about his bungalow OK and he has been managing all the problems admirably well. The big problem for him at the moment is that the muscles in his throat are getting weaker so it getting harder for him to chew and swallow food, which is why he's turning to liquid foods more often. It also seems to be slowing his digestion down. He is now on supplements to stop him losing weight (Fortisip, BuildUp, Scandishake, all the things familiar to PWCF!) and he is
also taking lactulose to help move his digestion along (again, familiar to PWCF although I've never actually been prescibed it myself) We're going to organise another Occupational Therapist visit to see if there is anything that can be done to help. I just feel so helpless really, I wish there was something I could do to help repair his muscles and help him to enjoy his retirement, he's a very clever guy, he loves travelling, he's worked hard all his life, I just wish he could enjoy his retirement in the proper way.

I feel really gutted about what happened to Vicky from the CF Forum. She went into hospital about six months ago for a simple port operation. However that didn't go smoothly and after that it just seemed to be one horrible thing after another. The pain she must have gone through I can't even imagine, or maybe I'm just too scared to imagine. I also guess I feel relieved that my version of CF isn't as bad, and it makes me so angry that someone so young should have to go through something like that.

Friday, August 21, 2009

Feelin' Mingin'

Robotic sounds mostly coming from my chest at the moment, especially when I'm asleep: Click, Whiirrrr, Click, Whirrr....Cough! Cough! Click, Whiirrrr, Click, Whirrr....

The cold virus from last week has moved onto my chest with a vengeance, and my daft CF lungs have responded in their usual fashion by creating pints and pints of goo. Bleuuurrr. Last night my head felt really woolly and I still feel a bit nauseus and spaced out; I also had a slight temperature. I don't think it's because I'm coming down with anything; it's just the sheer amount that I've been huffing through the day (which also makes me tense my neck and shoulders) that I've given myself a headache. I've put myself back on Uniphyllin to try and stop my chest getting tight, so hopefully things will improve in the next few days...I also can't use the Creon tubs as spit pots anymore because they've gone and changed the shape, so I'm using plastic cups in the car, which are minging because they're transparent. Moan, moan, moan....;-)

Edit: 2 Days Later. I've decided my symptoms are down to some kind of stomach bug, mainly due to the mild nausea and bloated feeling at night, coupled with aching limbs, especially at night. I'm also a lot more tired than usual, which all chimes with previous symptoms I've had a few years ago. ( No D&V this time though, thank god! )

Anyway, I heard this on the radio the other night. I don't know anything about early Fleetwood Mac apart from Rhiannon, but I thought this song was really beautiful. Stevie Nicks has a great voice. She's hot as well ;-)

Wednesday, August 12, 2009

Everyone should have a copy of this album...

Has it really been 20 years since this (their eponymous debut album) first came out? It can't be! As had been said before, they were a guitar band that you could dance to, who looked cute. What more do you need? Apart from some more albums of course :-)

The Stones Roses peaked too soon, but their fusion of guitar based music and dance inspired many other bands such as Oasis, Blur and the Britpop movement of 1995.

  • NME's best British album of all time revealed

  • The Stone Roses' self-titled 1989 debut album has been voted the best British album of all time in a Sunday newspaper poll.

  • In 1989 the critical response was generally positive and today the album is widely considered to be one of the very best British albums released.

  • The Stone Roses' eponymous first album has been voted best album of the last 50 years by listeners of the BBC digital station, 6 Music.

  • Reni is considered by many to be the best drummer of his generation, and the "single most important drummer in UK indie circles"

    Gonna add a link here to a guitar part I never learnt. Kids have it easy these days, at the time the only way to learn songs was to sit with your guitar forever stopping and starting a tape player to learn a riff by ear, this could take hours and even days. nowadays you've got ready made lessons on youtube!

Tuesday, August 11, 2009

Second cold in two weeks, grrrr!

Nurseries are lovely places full of joy and laughter. I sometimes think that working in a nursery would be my ideal fun job, then I remember the high energy levels of groups of kids under the age of 5 and realise I wouldn't be able to take the pace. They are also hubs for the common cold amongst other infectious bugs; Abby and Oscar have both come down with yet another cold - Abby had a temperature on Friday and they both came down with colds over the weekend, and it looks like me and R have now caught them as well. Pass the First Defence...

In the last couple of weeks, both Abby and Oscar have had their birthdays. Oscar is now 1 and Abby is now 4. (photos to follow.) In September Abby will be leaving her nursery and starting infant school. This is both brilliant and a little sad for me because I feel like she is growing up faster than I can keep up; she'll also be leaving the aunties and some of the friends that she's been with for the last 3 years.

Oscar is now very close to walking, and has taken his first few (unsupported) steps. His favourite pastime is emptying the kitchen cupboards of all their contents, including the cereal cupboard, noooo !