Sorry for the radio silence over the last couple of weeks, but the truth is I’ve been sinking.
There’s only so much a person can cope with, or so strong a person can be before they crumble. I’ve taught myself though that that’s okay, I’ve just got to dry my tears, pick myself up and carry on when I’m able to; I’ve done it before, so I hope I can do it again.
I don’t even know where to start explaining what’s been going on over the last couple of weeks, or to express just how relentless things have been. My vomiting has been horrific, and pain pretty bad too. I had an endoscopy the week before last and an endoflip test to asses the function of my pyloric sphincter (which enables the emptying of my stomach). Unfortunately, it was found to be utterly paralysed and so I was given Botox into it and my NJ tube was also changed. However, the Botox has had no impact, and if anything, my pain has been worse since. My vomiting has been happening daily, even if I haven’t eaten anything orally.
Aswell as this, one of my carers suddenly left. This was difficult because there wasn’t even a goodbye, and I’d had her for quite a long time. It’s so hard for so many reasons needing to have carers, and losing someone that I trusted so much and spent so much time with has been so upsetting, particularly given the way it happened. Trying to find carers that can cover my hours and meet my needs has been far from easy over the last few years, and starting afresh with a new carer is a really challenging time too. I’ve been fortunate that I have one new carer who has started last week whom I’ve clicked with and is fortunately settling in to the role so well, but I’ve still been left without all my hours covered for the time being which is an added stress.
One thing that I was looking forwards to this week was my ‘Smart Wheels’ being delivered. These are the powered wheels for my wheelchair that I have waited for for around 8 months after having to appeal for funding etc. However, when they arrived on Wednesday, they were faulty. I can’t even put into words how disappointed I was after planning taking them to different places and looking forwards to hopefully having a bit more independence being able to propel myself. It ended up that they had to be taken back by the rep, and I have to wait to hear from the factory as to when they’ll be ready again when we’ll attempt another hand over of them.
With everything going on and my symptoms also being so relentless, I’ve just felt so distant and isolated with no motivation to do anything whatsoever. I really enjoy things such as blogging and also writing to my pen-pals, but I’ve really struggled to bring myself to do anything. I try to keep hope that things will get better, but I wake up and every new day is the same as the last.
There is a new week ahead and I’m trying my best to go into it with a more positive mindset, but we shall see what each day brings. I’m just so grateful, as always, for my Mum being my absolute rock throughout this all, the love of Jeffrey and support of Ollie and my other friends and family; it is because of you that I keep fighting.