Mental health.

I meant to post during mental health awareness week (just a little late then...). If I had, I would have written about the fact that I too have suffered from mental ill-health, and it’s not something I shy from telling people. I no longer feel that shame that I did once, and that’s partly because I have seen and been inspired by a number of close friends and family who have suffered much worse (breakdowns, crippling panic attacks, stints in hospital sectioned) and come through that AND continue to be the funniest, smartest, and most wonderful people I know (that is fact, no exaggeration at all). 

My mantra when faced with the kids, how can I put it, challenging behaviour (in the case of Rosa this is a big fat fricking AHHHHH!?!! at times) has always been ‘everything is just a phase’, and occasionally, that can be true of adults too. It is for me, and I still now need to remind myself that how I am feeling one day won’t be forever. 

I hope that mental-health awareness week goes a long way to help others understand mental ill-health, and accept and embrace this in the same way they do physical ill-health. My own experience has not been a particularly dramatic one, but I respect my mental health now and try to take better care of my mind and body to keep myself well. 

In my hard partying twenties I once found myself sobbing, literally paralysed at the top of the stairs in a pub, irrationally feeling 100% sure if I delved down into the basement toilets I would be attacked (anxiety induced paranoia). 

I became pretty agoraphobic at college for a while, alongside a weird addiction to watching Dallas repeats on UK gold. 

Even now, I can understand the addictive lure of self harm to release stress (I resist now, but didn’t always). 

Today I rely on a daily dose of Citralopram to keep my anxiety on an even keel (for me, this works, and if it ain’t broke, don’t fix it!); 

I use alcohol to self medicate for stress on a pretty regular basis....(not recommending that one). 

Yet ask any of my friends, and I’m pretty sure they would tell you that I am one of the happiest, most chirpy people they know, most of the time. I think I balance hiding it well, whilst also confiding in my right people, when I need to (find your right people). At my saddest, I want to dig a hole, talk to no-one, listen to sad music very loudly with headphones on, non-stop, maybe walk to the river with my dog and morbidly stare at twigs and leaves for hours. 

But having a big family means I cannot hide for long, and this is both THE most annoying and yet THE most wonderful thing. It no doubt saves me. 

BUT this is me; a healthy Mum of three absolutely gorgeous children, with a job I love and some pretty kick-arse friends and family to boot. When I feel down, I feel guilty too, knowing all I know about how hard life with CF can be; I have to be able to pick myself up to show an example to Isaac, whose challenges, stresses and pains are a hundred-fold to any of mine (albeit I am his Mum, and I love him so much, his pain hurts me too). 

I am no expert, and but the one thing that I can share that always helps me is music. I have eclectic tastes (I make no apologies for a little prog-rock in there!) but in those moments, these are the kind of songs that help me most. I hope you like them. I’m not quite sure how this sharing playlists works, so if you click on the link and get loads of weird hip-hop, that will be Isaac, as we share an account. Anyway, let me know what you think, and also, what helps you. Because one thing is f’sho.... sharing helps peeps! Much love x 

PS: Spotify sometimes adds random tracks they think you might like to the end of playlists, to stop this, go to settings, and turn off auto play, I think that works. Unless you like random suggestions that is. I just don’t want them to add some Cliff Richards and for you to think it come from me 🤨

67

Next trek is booked! I will be walking a full 67km around the beautiful Surrey Hills in June 19, supported (in relay) by some fabulous friends and family to cheer me on. After Brecon Beacons, I said 50km was my limit, but what the hell, what’s another couple of hours with peripheral neuropathy so bad your feet feel like they are no longer housed in skin? 

You can sponsor us here (more on that later) but this post is to say we would LOVE more people to join us; so if you fancy challenge, a chance to get fitter, with THE best company, and all for great cause, PLEASE LET US KNOW. To find out more, and sign up to this or a number of other events in support of the Cystic Fibrosis Trust, see here.

Today in the sunlit woods. Happy weekend all x 

Lakes and growing up.

Isaac is having a really good week, much better than he has been in a long time. I post a lot less when he is well, always mean to, but we’re usually busy enjoying life. That said, I had a few weepy moments today; we cleared out his room of toys to give away or sell. Long overdue, as he hasn’t really played with Lego and the likes for ages, but hoobah doobah, the memories! My little boy is one big strapping lad now, and that is hard to get my head around. 

Here are some pictures (must confess, not mine, stunning aren’t they?) of some of the lakes where I walk Obie, just ten minutes from our house. 

Happy autumn all x 

A gene treatment?

Isaac has a fairly rare (severe) mutation of CF, which means he will not respond to the small molecule drugs that you may have heard about in the news of late, which should work for a wonderful 90% of people with CF. So what hope have we? 

“About 10 percent of all CF mutations don’t allow for any CFTR protein — working or not — to be produced at all. Compounds can’t correct or potentiate a protein that doesn’t exist, so an entirely new approach is needed — one that might fix the CFTR gene itself. Vertex may be “the CF company,” but gene editing is not its expertise. So, it teamed with two companies: CRISPR Therapeutics and Moderna Therapeutics. Scientists discovered in 2014 a way to harness CRISPR/Cas9 — a mechanism used by some bacteria to prevent infection by viruses — to cut unwanted DNA from organisms, raising the possibility of doing so in people. The field has exploded since, with researchers worldwide testing CRISPR’s limits against genetic and other diseases in a kind of “scientific frenzy,” according to The New York Times. Vertex sees CRISPR as a possible pair of “molecular scissors,” acting to remove a dysfunctional CTFR gene before it is replaced with a working one – effectively curing the disease.
But CRISPR trials in CF patients aren’t likely anytime soon. “[W]e’re up for the challenge. We are working on it,” Altshuler said. “But anyone who’s serious about it realizes that there’s a multi-component aspect.”As Altshuler explained, “The DNA piece, or the correcting-the-gene piece, is the easy part.”  The hard parts include editing to only affect targeted genes, while aiming at those in both mature lung cells and lung stem cells — which give rise to new cells — because cells in the lung turn over frequently. CRISPR is still in its infancy, and some scientists and bioethicists have already raised concerns about a limited understanding — and the possibility the tool might be more unpredictable than thought. A study in mice, published in the journal Nature Biotechnology in July, reported damage to genes beyond those targeted.A separate three-year research partnership was started in 2016 with Moderna Therapeutics, which specializes in a gene therapy approach targeting messenger RNA. Messenger RNA (mRNA) is involved in the transcription of genetic information, the first step in producing a protein.
“We hope it’s sooner, but we’ll work for 10 or 20 years to develop genetic therapies — or any other type of therapy — to treat those people living with CF who cannot take benefit from our small molecule or oral therapies,” Altshuler said. So, while its triple combinations appear to be zooming ahead, Vertex is with gene therapies about where it was in the early 1990s, screening for the small molecules that eventually became Kalydeco, Orkambi, and Symdeko.“I want to express … our deep commitment to completing our CF journey. We’ve made a lot of progress. We’re very proud of that,” Kewalramani said. “But we’re not going to rest until we get to all patients … our commitment is really unrelenting.”

It’s encouraging that they say they are committed, it really is. But also knowing the frustrations that come from NHS England and Vertex having yet to agree a deal which will allow people with CF access to one of their existing drugs (Orkambi) and the fact the ‘gene therapy’ was the buzz phrase when Isaac was born and yet still bears no fruit; it’s also a huge (head banging) frustration. These are as close to a cure that we can hope for right now. 

We were told when he was born that the earliest we could hope for access to a treatment that would work on the underlying cause of his disease (rather than just the symptoms) was about five years. We’re 13 years and counting now, trying to keep his lungs as healthy as we can so that the treatments, when they do come, may still work for him. 

So, I’m working on my next fundraising plan; we are bloody in this for the long term! Have a great day x