27/10/2017 Feeling Tired

I'm doing remarkably well considering but I am feeling tired and each day is a reminder that I desperately need this surgery. Today I battled to manipulate the mouse pad on my laptop. With no feeling in my fingertips it is difficult to do simple things like that. The last few nights I've been up with sickness throughout the night only settling in bed at 5.30am. I can feel myself getting weaker. You'd never guess it from my smiling photos during the few hours I am able to function more. Fluid released from the pressure in my head ran down my throat into my chest again but I managed to cough it up this time. Hoping for a better night, onwards and upwards!

10/10/2017 Snapshot

To give you a snapshot of life right now, it takes me a lot longer to do things and I have much less ‘functioning’ time per day. Yesterday I only managed to be out of bed at 7pm, today at 5pm. I am dislocating joints more easily, especially in my neck, even with wearing my neck brace. It's not easy constantly adjusting to how pain, increase in seizures, etc, is affecting my day-to-day life. Some days my sight is too poor for me to check any of my messages, or I am wiped out in bed with the terrible pressure in my head, unable to function at all. Other days, like today, are mixed. I was rough and in bed till 5pm but within an hour of being able to be up, I managed a walk with Otty and then later in the evening was able to visit my church youth group and say hi (they're busy fundraising for me). A few hours later and I was rough again... It's a mixed bag and the ‘good’ hours I have are becoming more few and far between, but I am very grateful for them. :)

09/10/2017 Update from Home

Hi everyone, just thought I'd let you all know how I am doing. My brother Jon and family have been visiting from Australia, they've now gone back. I only see them once a year and I treasure any time I get to spend with them but my current health had quite an impact on the visit this time. I just wasn't able to be up and about to spend as much time with my gorgeous two nephews as I would have liked. All the time spent unwell in bed, too poorly to be up or having to rest, was disappointing and a reminder of how much things have changed. A short trip to the local park round the corner with the boys and my lovely assistance dog Otto was managed only twice and that took it out of me, but was well worth it. It's a far cry from their visit last year when I was able to go out with them every day and took the boys bowling, to Adventure Island, visited parks and the woods, indoor play centres, etc. But the boys were fantastic and it was a joy to watch them playing games, making puppets etc, still quality time :)