Isaac, along with his Dad, cousin Ben and Auntie Jo completed his first 5km colour run today, and had a great time. This is a run with 20 obstacles and a whole lot of colour. Sounds easy, but not so much when you have CF and his current nose/tummy problems. Thank you so much for the sponsors so far, and if you'd still like to, click on the image of him on the right in the red t-shirt.
Isaac and Ben, best friends and cousins.
Ben. First one over the line.
My lovely and ever supportive sister, Jo.
Even when well his day consists of physio therapy, nebuliser one, nebuliser two, nasal sprays, inhalers, medicines he hates but has to drink, tablets, even more tablets, more physio, nebuliser 3, nebuliser 4, nebuliser 5 (hell yeah, CF includes a LOT of breathing treatments!) more tablets, medicines he hates but has to drink, and many more tablets whenever he eats, all interspersed with a Mum checking he feels OK, requests for coughing up sputum samples for the lab, a good 'hands round the chest' huff to check his lungs, O2 saturations and temperature checking, plus all the usual homework, teeth brushing, eating both vertically and with cutlery (this request still surprises him) that we have to ask of him.
Now we can ensure he does his treatments every single day, 100% of the time, but what we cannot ensure is to what effect he does these, as he needs to put the effort into his breath to do breathing treatments effectively, and we can't measure that at home. Therefore, he insists he has done enough (the required number of breaths, huffs and coughs) but with effort of a geriatric mouse, and so we can't be sure that his chest is cleared of the infected, inflammation causing mucous that clogs his airways. The teenage years are about giving our kids the responsibility for their own lives little by little, and we have to allow them to make their own decisions, however good or bad. The only difference for us is the potential impact of those bad decisions. We have fought hard to keep his lungs as well as we possibly can for 12 years, and seeing him resist, cheat, and lie through treatments leaves us heartbroken.
People often ask me how we cope, with three kids, both working full time, and with CF to boot. And the truth is, I don't always, at least not very well. And just lately I have felt the balance between coping and not has been kind of, well.... wonky. You know how they say people think about sex every 7 seconds or something? I doubt people look back on their day and think, wow, I thought about sex 376 times today! It's a back of the mind kind of thing, and that's how I feel about CF too. It doesn't dominate our lives exactly, but we sure as hell live alongside it. It is always there. (edit; actually, the whole 7 second thing I might have confused with a goldfishes memory? Either way, hopefully you catch my drift).
In a crisis, I am a lioness for my cubs; I generally do OK in hospital, even when it has been very hard. And at times, it has. It's when I get home that I crumble (typically by popping open the gin and listen to The Cure or Patti Smith on my headphones very loud and having a little cry). It might surprise a lot of people who know me that I take antidepressants for anxiety, and have done for many years, and I don't mind saying that, as I feel passionately about mental health awareness. Why should I hide this fact, but openly talk about physical problems? (And everyone knows that I'm a chronic oversharer on health generally (see previous blogs from earlier this year about living with a catheter bag!). It's all the rage anyway.... Prince Harry is talking about mental health, as are other celebs, so we must too, I think its great and does go some way to dispelling some perceived shame about feeling a bit shit.
I asked my best friends to describe me in three words, and they said; positive, loving and empathetic; creative, honest and generous; bubbly, fun-loving and thoughtful; Spirited, loving and imaginative. This was not me fishing for compliments (although it did cheer me up some, as I like to think I am all of those things to my friends, as I love them dearly) I'm trying to illustrate the point that you can suffer from anxiety, in truck-load of worry proportions, which at times can feel quite debilitating, but also be optimistic, happy, and be a good Mum. And I really am happy, and I do feel like a really lucky person. It's just OK to be anxious, sad, and admit that you're not coping so well at times too. For me, this means focussing more on doing what I like most, hugging my kids until they squirm, spending more time with those closest to me, and figuring out how to get that balance better between work and play. And since many people with CF suffer from poor mental health at times, due to symptoms, limited life expectancy or the burden of treatments, I hope I am showing Isaac that it's OK to not be quite so OK always too.
Have a great day, but if you don't, that's OK too x
