Hello everyone and welcome to life update 3!
I’m going to start off this post with the most boring things to get them out of the way; the life update will follow the bullet points below (towards the end of the page), as will the ‘Participant of the week’.
(N.B. Contact details are at the bottom of the page for easy access in case of needing to contact me).
• To start off with, I have made a ‘news & announcements’ section on the home page where information like that which follows will be posted in the future.
• To address ‘the elephant in the room’ – Coronavirus. Although it will arise at times throughout this post, I am currently writing another separate post about the virus, what it means, and some things that both myself and other organisations have arranged that can be done at home. I will link the post here once written.
• Thirdly, for those waiting on parcels/prizes/charms/kits/letters etc. I haven’t forgotten you, I’m just trying to do the most safe and sensible thing at the moment. I have decided that everything will be posted together. I don’t know when exactly – I hope in the near future – but I am aware of those waiting on post.
• Next, (and slightly more exciting!), I am working on the annual Easter competition (which I am SO excited for) and will be posted soon. I would really love and appreciate as many people as possible taking part for the sake of the project.
• As with the old project, I have decided to go ahead with looking for a company to ‘sponsor’ the projects that I run (because they obviously can’t run self-funded as they have been forever), and so I don’t have to stop the project completely. I have emailed – and will continue to email – as many relevant companies as possible, but if anyone is aware (or willing to help me find) any sponsorships, donations (in the form of money, items for care kits, medical equipment for teddy adaptions, or simple advertising on a platform so that more people can be made aware of what we do, I’d be so grateful for your help.
– Finally, you can contact me via:
- EMAIL: email@example.com or
- TEXT: +447477 222 786
- POST: 66 Bevendean Avenue, Saltdean, Brighton, BN2 8PF
- CONTACT FORM: https://form.jotform.com/200795125053349
This week’s Bravery Bottles ‘PARTICIPANT OF THE WEEK’ is Naomi Gilchrist. She has worked tirelessly at her rehab programme in hospital and still finds the time to put others first to send mail to those who need cheering up, or those she keeps in contact with via post. Congratulations Naomi, your prize will be sent with all of the others when I can do so.
SO, AN UPDATE ON MY LIFE…
To be honest, I haven’t got much to report! I’ve decided by my own choice to self-isolate and to limit as many visitors as possible because of the Coronavirus outbreak. With the chronic health conditions I have, and the immunosuppressants that accompany them, I have to do what’s safest for me.
However, over the past couple of weeks, I’ve seen my consultant who – to my disappointment – doesn’t expect much improvement in my health and, living my life in a lying position at all times at the moment, is something I hoped WOULD improve (and I’ll continue to do all I can to improve my quality of life).
On the flip side though, this gives me a lot of weight on things like adaptions and personal aids, because I have evidence that things (in the opinion of the medical profession) are unlikely to change in the foreseeable or near future.
Since contracting Urosepsis in August of last year and my Suprapubic catheter having to be removed, I’ve been living with an indwelling urethral urinary catheter. This has caused me nothing but problems and last week I finally saw my Urologist who agrees to putting in another SPC, and we all hoped it would be fairly quickly. With the strict guidance in regards to Coronavirus however, I have no idea if, when, or how soon this will happen, but at least he’s prepared to give it another try before the next stage up – a Urostomy (which he made clear could well be what has to happen in the future).
As I said, I am keeping contact to a minimum and only going out for critical appointments etc. such as having my RIG-J (feeding and drainage tube) replaced after it got blocked on Saturday. This meant that I had no way to gain nutrition, hydration or medication, so basically had to ‘get through’ until Monday when first thing I was phoning around, begging them to replace my tube (which at first they told me they were too busy to do). I told them that if it wasn’t able to be done today, I’d have to go to A&E to be admitted, yet at the same time I was given strict instructions that A&E is too dangerous for me, and I wasn’t to go there in any circumstances. So what was I supposed to do!? In the end, I had a ‘sit and wait’ appointment in theatres..my tube was fairly easily replaced, and now (as with all of my tubes and lines), I’m treating them like gold dust!
So, until further notice, I’ve decided to stay at home as much as possible. As previously mentioned, I am working on the Easter competition post and also a more in depth COVID-19 post (with individual and group activity ideas for those in isolation too), and I hope to get that uploaded soon.
In the meantime, I hope you all stay safe & well, listen to the advice given and consider your own circumstances when deciding on the steps that you feel are right for you.
Thank you for reading!
Love Katie xxx