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.
Jenny Nicholson's "Top 10 Reasons I Won't Do ASMR" ASMR
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