Please only ask if you are willing and able to listen if the answer is not good.
Many times I have been asked, and partly because they asked, and partly because I am a ludicrously honest person (a quality that has got me into some pretty awkward situations in the past!) I have told people how it really is, only for them to awkwardly stumble over their words, clearly keen to get away. Leaving me just feeling awkward and kind of sad.
Janeil’s experience of trying to balance her public persona as an honest account of the bitterness of life with CF, whilst also wanting to show that life is not all about CF - sadly familiar too.
People are often surprised to hear that Isaac regularly plays football for a team and goes to CrossFit as much as he can, but our reality is that the very next day he might be in hospital on IVs to help him battle his live-in bug residents. Even in hospital his physios have him in the gym for an hour a day. What he can do each time varies incredibly; a spectrum all the way from walking just a few steps from his wheelchair using portable O2 to supplement his breathing, to press ups and sprints on a treadmill. Exercise is massively important to his lung health, and so we encourage him to do his best, whatever that might be that day.
CF is an incredibly complex disease, the prognosis might suggest a slow decline of lung health over years, but we also see huge dips and peaks in symptoms along the way too. Add to that, the number of other organs affected by CF (for Isaac, this is mostly his GI problems right now) and side effects from his many medications, sometimes when I’m asked how he is, the answer might also be;
‘umm, kind of OK, not sure, bit mixed, he threw up coughing this morning, and then bench pressed his best weight, might be on the brink of another admission or a fantastic apperance at football’ - we can’t always tell.
So if you ask, be happy with us when it’s good news, and listen when it’s not. But thank you for caring enough to ask, all the love and support we receive never ceases to amaze us.
This week has been a funny one. Dan had a football injury a couple of weeks ago, and his leg later became inflamed. The GP diagnosed an infection in his vein, and prescribed an antibiotic. And then another one as it was getting no better. And then a third. After that didn’t work, he was advised to go to A&E - where today they told him it’s not an infection at all, but thrombosis - He has a bloody blood clot from his mid calf almost to his groin! It’s massively inflamed and painful, but a painful ultrasound revealed it’s a superficial vein, not deep vein thrombosis which is more dangerous. He is now home, and hopeful that a 45 day course of blood thinners will sort him out. Got to love him, but he is a plonker, he’s limping around but wants to work tomorrow!
Isaac, on the other hand, is having a good week. His GI problems persist, but it’s manageable. Next week he is having some hi-tech tests in hospital to assess how well his body tolerates exercise. More on that soon.
Was so nice to see some sun this weekend. Rosa and I took a walk in the woods - how gorgeous is this girl? Roma time (the name we call ourselves together, Ro and Ma 😊).
To support our fundraising for the Cystic Fibrosis Trust who fund seriously groundbreaking research, please click here. CF is actually one of the areas of medicine where a cure is a realistic idea, but they lack the funding to achieve this potential. As such, myself and a bunch of my amazing friends will walking the Great Strides walk in the Surrey Hills in June. For me, a bonkers 67km in a single day.
Have a great day x
