Friday was a big day. The wheelchair was very late being delivered, which meant I didn’t get to see Laura, Kalie and Amy and meant that I had a little stress meltdown. I don’t do well with plan changes or unexpected issues that mess with my scheduled plans. I build myself up for plans, I prepare, mentally and physically, everything is organised so my anxiety is chill and it quickly unravelled.
Nevertheless I now have a wheelchair! Seeing it again in person, I was reminded just how bloody big this thing is. That was the intention, the chair is specifically to allow me complete freedom in nature for long walks and adventures. While knowing it can get me round most shops, that wasn’t the key focus when choosing a chair. So we’ve got to work out some storage as it’s a bit of a beast and we don’t have an enormous house. I can’t get it out the house myself, we don’t have a ramp and aren’t sure if a ramp would work. I also need to look at getting a boot hoist on Motability so I can get it in and out the car myself.
Anyway…
I took it for a quick walk yesterday morning with mum and Riley and bawled my eyes out. I was finally experiencing the feeling of a brisk walk, I could feel myself moving through the atmosphere. I felt so free and alive again. Riley’s a way off long walks but I did manage a little bit with me holding the lead and him trotting alongside me. He was completely unbothered by the chair so I have high hopes for the future.
Getting the chair now also meant I could spend Friday having help working out public transport. There is a little UKCVFamily meet up in London on the 27th and I couldn’t attend as it would be too much physically. Now I have a chair I just knew I had to find a way to meet everyone, which meant public transport. I HATE public transport. It’s not because it’s dirty or anything like that, I get anxiety and sensory overload, I also feel the energy of everyone around me, which means that public settings are draining for me. I also get confused with working out trains etc, especially these days where my cognitive decline makes working out anything new a challenge. But the members were on hand to support me and I’ve booked trains and tubes from Westbury to Stratford, along with booking passenger assistance. This means someone will meet me, loads me onto the train with a ramp and take me to my “seat”, and vice versa for disembarking.
As long as I don’t think about the journey, I’m very excited for Thursday.
This feels like a big year for me, I’ve really come into it as a new person with a different mindset. I’m in my healing headspace and it feels bright and full of hope here.
My goals include being out more, reducing the use of pharmaceutical medications and focusing on natural healing. I’ve made great leaps with my energy levels and it’s come from nothing but avoiding low histamine diet to keep the MCAS at bay, watermelon and a newish supplement regime. No shit, nothing that causes additional side effects and nothing that I can’t bloody pronounce. All this has also resulted in a decrease in my inflammation and allowing my implant to work more efficiently.
I’m not healed. I’m coming up to 4 years post vaccine and this has been the first sign of improvement. My physical issues aren’t improving, my incontinence is getting worse despite my best efforts with endless pelvic floor exercises and as I mentioned my cognitive issues aren’t improving, in fact in some areas they are declining. So I’ve increased my brain training exercises, I’ll keep assessing supplements and if they work I’ll keep them. I hope to work with a kinesiologist this year, but initially I’d like to work on getting rid of the horrendous drugs that are doing more harm than good and making the improvements I can myself.
I don’t know what the point of writing all this was, I guess one some level it’s for accountability, but I felt the urge to write and so I did. I still write journals how I always do, I open the notes app and just type without much thought until I can’t think of the next word. It’s a brain dump and it’s also really refreshing to share my mindset with others. I saw Hannah this week and she told me I was glowing with energy and looked really good, the best part was that I actually felt really good. That afternoon my head pain was super high and I’ve been a bit off balance for the last 4 days, but I’m full of hope and hope can take you really far if you let it. So 2025 is the year of trusting my gut, and I truly hope that by doing that it will allow me to better help others because that really is what I want to do with this whole experience.
I’ll add that I think I know why the last few days have been off balance, aside from me foolishly trying to use all the energy I’ve been gifted; grief. I deeply miss my darling Bella and I’ve been feeling this week as much as I did the week after I said goodbye. Riley is here, making me laugh and keeping me entertained and is wonderful company, but that doesn’t stop me mourning the loss of my first soul-dog. This increase in energy is wonderful and it’s filling my mind with big dreams and a wish list of places to visit, but I do wish Bella was here to share this with me. Of course I know that the Bella she was at the end wouldn’t have enjoyed any of this, but I wish she could see the Chloe I am today, the Chloe who has hope and a smile for what the future could hold.
As usual I haven’t edited of proofread this, so my deepest apologies for all errors and I hope you’ve had a bright weekend with those you love!