I feel a bit out of sorts at the moment. Like I’m constantly trying to catch my tail. My head seems to be a bit more stable, which is a good start and a sign that this programme is starting to perhaps take effect. I’m still not able to adjust I don’t think – I’ve lost track of time if I’m honest. But as I am allowed to use the constant programme, I’ve experimented by turning it on when active and I must say the consequences of the activity are significantly reduced.
But still I feel out of sorts. I’m restless, yet I desperately need to rest. It’s like I have adrenaline coursing through me that just won’t allow me to properly stop. I’ve been too busy of late, something that’s been out of my control. Following the great clearance of my room and my new bed I had to catch up on my safeguarding course. I’m doing it as part of my role with UKCVFamily, and, while thoroughly interesting, it’s quite heavy and highlights the extent of my cognitive decline. It’s not been easy, but I’m getting there. Thankfully the funding college is very supportive and allows me to extend deadlines to allow for the excess downtime my health demands. So I met my deadline last week for unit 1, and then had a few days of deep suffering before going to see my brother on the weekend. It was a great day and I love seeing him and his family, especially when there’s a roast beef involved! But the 5 hours of driving killed me off. Sunday I rested, ready to take Bella to Bristol on Monday to have her very expensive eye checked out. It’s still stable so that’s fab news! Yesterday I took mum for some tests and now I’m in bed. I’m desperately trying to rest but I feel out of sorts and fidgety. A bit like when you’ve forgotten something but can’t put your finger on it.
When I’m like this my tremors and shakes are worse, and I get easily frustrated with myself for making regular typos or being clumsy. Though it’s not really clumsy, just normal function through the tremors isn’t so easy. On these days I normally decide the kettle is out of bounds, though I often don’t notice that I’ve poured boiling water on my hands until the next day when I wonder why they sting a bit. So it’s easier to just stay away. I am frustrated, I need to be studying and getting on top of some admin, but I also know my body needs to rest and whatever I do will only infuriate me further. But the buzzing feeling inside just won’t go away, though it won’t go away if I do something either. With this I do also feel a strange sensation in my head, a little woozy is the best way to describe it. Dizzy but not dizzy, faint but not faint. Strange, but I wouldn’t be me if I wasn’t a little strange.
These are some of the things I’ve been unsuccessful in getting help or assessments over. My main focus since the V had always been my head pain because it really was the most overwhelming issue. But I have been trying for over a year to get some answers and help on the rest, to no avail. So for now I just have to accept being buzzing and also useless!
On the bed – I’ve not once had issues getting in and out of bed. No more grunting and straining, no more crawling to the bathroom. It’s been the most wonderful investment into myself and I’m glad I spent the money. It seems minor, but it really did use up excess energy to get myself up or down, so being able to eliminate that struggle has had a huge benefit. I bought a rather large footstool, which helps both Bella and I onto the bed some days. For Bella everyday as she’ll do a damage jumping from this height, and despite the dementia she seems to have finally accepted using the stool.
I think the biggest win is the help that I got from Kalie and Laura to clear my room and make it a much cleaner, clearer and manageable space. Every day I’m able to reset my room and within minutes it’s clean, tidy and calming. I also get to reset my bedding daily which not only helps me in my OCD but also means I’m getting a little exercise in everyday. You may laugh at thinking it’s an exercise, but some days even just going downstairs to grab a drink registers as intensive exercise on my Garmin! So all in all it’s a win and I’m grateful for all the help I received as I can now manage to keep this space the sanctuary I need it to be. My dad also came and put my tv on the wall so I could ditch my desk, clearing the space of more clutter. I do need to make a new shelf to go under the tv, but it’s not a necessity right now. I made my other scaffold shelves and know it won’t take long to sort another, it’s just not a priority worth spending spoons (or money) on.
Most importantly, I now no longer feel my wonderful candle collection is a waste to burn on a messy room. I always felt my room and the chaos it was didn’t deserve to have good wax wasted on it. Now I get to burn all the lovely scents I’ve collected, though it’s still hard to choose from my 30+ candles. But now it doesn’t feel wasted as sanctuaries deserve a calming scent to match.
So that’s where I’m at. A lot of ramblings about nothing in particular as I’m feeling out of sorts and my thoughts aren’t particularly coherent. I hope you’re all well, and I must apologise as I still haven’t managed to catch up on my messages. In truth everything has fallen behind, this is actually the first thing I’ve written since my last post because I’ve just been empty with nothing left to give. I will catch up and I’m grateful for everyone being so patient and understanding!