Isaac hasn’t been feeling well for a while now. We’re in contact with his CF team often, and hope for some test results next week. He is struggling with low sugars (reactive hypoglycaemia, manageable, but difficult with his digestive problems), joint pain (investigating CF related arthritis), vomiting (not new), significant weight loss (still not understood) and the usual coughing. What can I say? CF well and truly SUCKS, I won’t gloss over this fact. What would be the point, in a blog about our lives with CF?
People often ask me if Isaac is working right now. Sadly the truth is that his current job is to do treatments, attend frequent hospital appointments, engage in discussions about possible clinical trials which we hope to join (we spoke with the team at the Royal Brompton this week, which gave us new hope) and manage symptoms. This is more than a full time job; the hours are unpredictable and long, the pay and pension - non-existent, the social life - terrible.
This week I’ve even had to help him sit up to take meds, to get out of bed, to hobble down the stairs due to the pain. Everything about this makes my cells scream and my mind weep. This is a completely useless emotion; but it all feels so fucking unfair.
All that said, in other recent weeks he has been up and able to work on his new extension, at least in short stints (which he has to pay for later). I can’t remember if I said, but we’re building a room off the back of what was our garage, as his current bedroom is tiny and this will give him a larger room and en-suite, and at least the feel of a bit of independence and privacy in his own space (it’s not attached to the house). We’ll have him in before Christmas, and will post pictures then. It’s looking fantastic, and he’s been involved throughout, which is lovely. Today, after throwing up and before falling asleep on the sofa feeling crappy, we enjoyed a dog walk in our favourite woods. It’s all about the small wins.
In other news, Anouk is smashing all her revision and exams (she took one GCSE a year early and got an A* - my amazing girl!). Now in year 11, her hard work, zest and intellect fill me with those mushy feelings of enormous pride, almost as much as her empathy and huge heart have always done. Rosa, our force of nature, while struggling with school and academia, is flourishing in her own ways. Our time with the dogs and horses together is my favourite part of each day. Love, love, love x
Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after your death. Thank you.
