This ain’t no lifestyle blog, dude!

Here are some pictures of our kitchen.....

Our front room....

And now the avocado on sourdough toast I had for supper...... 

KIDDING! As much as I do love our house (over the 12 years we have been here we have removed the faint smell of cat piss, re-plastered every wall, moved doors, extended twice, changed every flooring, and renovated the garage to make the kids a games room). We have built a home. It’s covered in art, piled high in books, scattered with discarded shoes (rarely paired) and littered with toys (and the latest ‘in’ toy? Slime). It may be a little grubby around the edges, but it is most definitely a home, a party place, a social hub, music always a tiny bit too loud. Put it this way, you walk into our house, and you get a pretty good idea of who we are and what we love. No beige, no neat piles of magazines, and no loo roll with folded sheets..... 

Anyway, I digress! My point was that this ain’t no lifestyle blog (if it were, I would have to tidy more, and with our lot, that’s not possible). This is the story of our lives with our sons Cystic Fibrosis. It can be merry, but more times than not; it is raw, it involves lots of sputum, it hurts, and as much as I try to put a positive spin on things, I don’t always feel that way. Maybe I’m trying to write ourselves out of the waves of negative, the pain, the nausea....

A year ago this week, Isaac got very sick. Weeks later he was still oxygen dependant, in a wheel chair, and scared that the effort to breathe might get too much. But we got him out of intensive care. We got him home. And he’s spent the last year fighting to get fitter than ever; 

...preparing for the next battle that we know with absolute certainty will come. 

He is so fit right now, and it takes a pretty rocking personality to take the knocks he takes, and get back up running like he does. Our little dude (I say little, but let’s face it, he’s near my height now). 

This other CF dude writes about life with CF in a super eloquent, moving, and very real way. He is post lung-transplant and doing well. So worth a read. His points about CF being an invisible disease are spot on; for every funny look we have been given as he coughs excessively, or when we leave pharmacy with not a bag, but a box load of drugs, jump the queue in X-ray, or when we allow him to add a tonne of salt to his food - please don’t stare people. Disease comes in all shapes and sizes. 

More on us soon x 

Happiness, flu jabs and another loss.

Clinic was pretty frickin positive...! LF was down slightly, but still bettter than it has been most of this year. For now we try extra oral antibiotics (a new one), a new steroid inhaler, and picking up his nasal rinses again (problems with his polyps/sinuses may be contributing to this). So no steroids, and no immediate IVs, for which we are very, very happy. 

It’s flu jab time of year again, and we will be first in the queue. Please remember, if you can get vaccinated, you’re defending not only yourself, but also reducing the spread of the virus and protecting those more vulnerable around you. (note: you cannot ‘catch flu’ from a vaccine, it’s not live, and these days, you can often choose between a nasal spray and the jab). 

Do this. 

Give blood. 

Sign up for organ donation and make your family aware of your wishes. 

At least that’s what I think, but who I am to say?

"Life isn't about being happy, life is a roller coaster of crazy emotions. One second you're fine, and the next second you feel lonely and despair and like nothing is ever going to be okay again. It's not about emotions, it's not about how you feel second to second. It's about what you're making with your life, and whether you can find a deep pride in who you are and what you've given. Because that is so much more impactful, so much deeper than whether you're happy or content or joyful. It's okay to feel pain." - 

- Claire Wineland, an insanely uplifting and beautiful person, who died this month, following CF post transplant complications. This disease is so fucking cruel. Everyone should watch this. x 

Roid fears.

The cough continues, with a scattering of tummy issues thrown in for good measure. CF clinic tomorrow. Hoping for answers and treatment, but please god.... not steroids. I’ve posted previously here about his ‘roid rage. We’re also only six weeks post IVs, so hoping for a longer break from those too.... for his sanity, ours, and his poor battered kidneys. Of course, more than anything, we just want him well. More soon x 

Rhyme or reason

I wrote a long post, and then lost it! DRRRRR. So here is a shorter and much less eloquent update;

Isaac is coughing. 

A lot. 

Like, people stare at you in Tesco, coughing over the veggie aisle, and sleeping is miserable type coughing.

But when we took him in last week for an emergency review, he blew his best lung function in a year!

This, after it being at ‘stable-but-quite-shitty’ level for some months, even when he appeared well.

CF continues to surprise us. 

Occasionally, how symptomatic he appears has no rhyme or reason with his lung function, supposedly the measure of wellness in CF.

Treatment is Azithro and brufen for inflammation, as the doctors feel after a year of intensive treatment of his infections, the coughing now may be due to an overly excited inflammatory response (calm lungs, calm!).  

In CF, infection and inflammation form a vicious circle in the lungs, and if this treatment doesn’t work, he may need steroids (always the last option with him, due to the side effects).

As is his norm, Isaac is taking it on the chin, smiling on, and not letting anything hold him back.

…. Not many people get to live with their hero, but I do. He never ceases to amaze me with his courage, humour and tolerance. 

Some pictures from my travels to Toulouse (holiday) and Madrid (work) recently….

More soon x