I haven’t written anything for sharing for some time now. In truth I’ve been struggling a little, I’m in a period where I just crave the quiet life and shutting myself away for a while. The counter to that is that I haven’t seen people as much and that I hate, but it’s just where I’m at currently.
Lots has been going on. I’ve started my taper off pregabalin, going very low and slow, using water titration. The brain fog is pretty bad and I get mentally exhausted very easily, even struggling with simple conversations. It’s also increased my head pain more and I’ve noticed that my need for pacing has become much more necessary as I burn out and crash faster. That being said, I’m ok and it’s going better than I expected, but I dropped the dose again today so we’ll see how I fare over the next few weeks.
I had nerve conduction studies on my legs, which came back negative. They told me I wasn’t there for a full assessment, I just needed a diagnosis, so they went with Functional Neurological Disorder (FND). They believe a bit of physio will see me right, which of course is tosh as I’ve been doing daily physio for several years to try and prevent further decline.
I’m tired. I’m medically fatigued from all the fighting, chasing and advocating. I need a break. I have an appointment next month for the incontinence, but otherwise I’m checking out for a while. I just can’t keep banging my head against a brick wall, expecting a positive result. I wish I had an answer to prevent my disabilities getting worse, but I’m obviously not getting them in the near future.
The truth is that for the first time in 4 years I’m actually happy. I don’t spend everyday in bed resting, and most days I’m out with Riley for a walk at 11. Most days that’s the best I can do, but I don’t then have to spend the rest of the day in bed, I’m upright and doing very simple and low energy things like a bit of a jigsaw, reading or some admin for the charity. I get to see my friends usually every 2-3 weeks and I don’t suffer significantly for it. I’ve got the most important parts of life back and right now that’s more than enough. I’m content, I’m grateful and I just can’t continue wasting energy on fighting a system that just doesn’t want to understand vaccine injuries. So I’m not going to keep torturing myself.
I hope one day there is an answer, that I find something that helps to give me some more of life back, or helps me maintain where I’m at more consistently. But I don’t think that answer lies within the NHS. I’ve been adding supplements and making dietary changes which is what’s given me the most improvements.
Last week I even made a last minute trip to Bella’s beach with Riley and Mum. I’m suffering for it still, but just 6-8 months ago I couldn’t have even considered that. I mean I did it with Bella when I knew I had to make the decision to let her go, but we weren’t there long and didn’t go far. Last week we spent hours there and then had lunch before coming home. Like I said, I really am suffering but it was worth it. I allow myself a few “silly” days like that a year, where I decide the consequences are worth it and I’m glad I did.
I have been over-doing things in general. I’ve been taking on as many tasks as possible to help the charity because it genuinely brings me joy and peace, with no additional stress. But I didn’t do it in a safe way for my health, because you can add all the positive distractions you want, normal life stuff is still there and will still need your attention eventually. Like pointless appointments! So I’m having a stricter few weeks; with very few plans, so I can get back to baseline and then build up a sensible schedule that is actually manageable for me and my health; A schedule that balances my want to focus on charity work, while ensuring I see my friends and family and deal with the other normal life stuff.
I think if I’ve learned anything over the last four years, it’s that life is about the little things. Being able to connect with friends and family, being in nature and receiving joy from the little things like sunsets, army aircraft flying low and kisses from your adorable dog. It’s taught me to slow down, slowing down allows you to actually see and appreciate these things. But I’m craving being even slower. Han said to me a few weeks ago that she thinks I need a holiday, a complete break from life and I think that’s what I’ve been trying to achieve by going MIA and sitting helping UKCVFamily whenever the opportunity arises. It’s not that I don’t want to see people or do things, it’s that I’m in need of a complete switch off and some time to just fester in my armchair.
I’m craving quiet, likely because my mind isn’t very quiet at the moment and no amount of holiday is going to switch it off unless I deal with the noise. So that’s what the next few weeks are about, dealing with the noise in my head while festering in my armchair. If I’m lucky I’ll come out the other end with a clearer head and maybe even a savings plan to get me and Riley away for a few days somewhere.
I think that’s enough waffling for me tonight, I’m exhausted despite it being a rest day so the thoughts are only more confusing to try and write. I hope you’re all well and I’m going to try to keep on top of posting here a little better. The journaling is a big part of keeping my mind and peace and I shouldn’t be neglecting it like I have. Hopefully I’ll have something useful to write in the next few days!