I never know where to even start these posts. You all know by now that I’m one for anniversaries but as more of them pass, I’m increasingly put off and seem to mentally avoid them. I haven’t even known what to title it because how on earth do you sum up five years of being ill? How do you title something detailing what it’s been like to be unwell for such a long period of time?
Whenever I write a blog post, I try to have a plan. I’m quite a spontaneous writer, I break all of the writing and blogging rules about having a word limit and a posting schedule. As you’ll have seen, I post as and when something comes to me and sometimes that’s multiple times a week and other times I go for months without having anything to share at all. But, I do usually have a reason to post and something specific I want to say and that’s why these anniversary posts are so difficult to write because usually the only reason to write them is the date and because I feel I ‘should’ have something to say rather than actually having anything to say.
For the most part, I try to ignore the time of year, ignore the dates and don’t let them mean anything. But five years feels like a hell of a milestone and feels like I really should be saying something even though I don’t actually know what that is. My life is currently in upheaval with a huge amount of change going on and even more on the way. My grandparents who are a huge part of my life and who I’ve spent increasing amounts of time with over the last few years are moving away, it’s not that far but for me it’s a world away. I’m currently at their house at least 4 days a week, for about 30 hours as I’m a carer for my Grandad and in the next few weeks they’ll be an hour’s drive away and I currently can’t get there. I may discuss all of that at a later point but those are the basics and it’s the reason why I’ve been so quiet on social media and my blogs and YouTube Channel because all of my mental capacity is taken up being there or processing everything that’s going on and changing. It’s a hell of a lot to take in.
In some ways, I’ve been really glad of the distraction because although I’ve noticed the date approaching of me being ill for five years, I’ve not really had a chance to focus on that or be sad or really feel anything about it. I’m quite grateful for that. Five years is such a long time, it’s over a sixth of my life and I still don’t know how or when I’ll get better. Being a carer and being needed has definitely helped me to push myself harder than I thought it possible to push and I’ve certainly been noticing the changes that that has caused in my confidence levels and belief in my ability. However, it’s a very specific set of circumstances that those changes have occurred within and I feel very worried and doubtful that I can translate those to any other situations. I’m not being negative, I’m going to do everything in my power to continue to go out and not go backwards when my grandparents move and I no longer ‘need’ to go out but even though I’m managing that, I still can’t just make myself go for a walk or set foot inside a shop. There is such a mental block in my brain and somehow ‘needing’ to do something overrides that a bit but as soon as the task is a choice, I can’t do it. Even artificially ‘needing’ to do something isn’t enough to make me go. There are so many things that I want to do but wanting it isn’t enough to get me out of my front door. The situation with being a carer for my Grandad seems to have special status in my brain and overrides all sorts of things that little else manages to do. Mostly I’m just grateful that it has, that I’ve been able to build up my confidence and start meeting new people (the other carers on the team) and for it not to be so obvious outwardly that I’m suffering so badly with anxiety.
I do worry a lot at the moment about how I’m going to cope once my grandparents leave though, everything in my own life has been on hold since before January because I just can’t concentrate on anything else and some time soon, they just won’t be here anymore and I’ll go from every waking hour, and many asleep hours too, spent thinking about them to this void where they’ll be gone and my brain will probably still be so full that I won’t be able to do anything to redirect or distract myself. I’m trying really hard to be kind to myself, to be forgiving and accepting and just let myself feel whatever comes up but oh my God, it’s exhausting! My emotions are all over the shop and I can’t keep up. I’ve always been quite emotionally stable, often not in a great way but still, I’ve always felt quite stable and so I never know what to do when these periods of turmoil come up and not only is everything in my life changing, I’m also all over the place with my feelings about it all too. I’m worried about the time immediately after they leave. I have so many things and activities and projects to work on but they all seem to require concentration and even the most basic levels of that are out of my reach at the moment. I keep wanting to record videos explaining what this is like to live through because I know I’m not alone in experiencing this but I never get as far as even setting up a tripod and always remember at ridiculous moments when it’s not appropriate to be filming. I also have no idea what would come out of my mouth which is the status quo for me but when my concentration is off, it’s even more of a surprise and I feel like a liability so I tend to just avoid all of that. At least when writing a blog, I can edit it and take chunks out if I really need to, though that is something I try to avoid as I don’t like filtering things.
As you can probably tell, my brain, my thoughts and feelings are all over the place and my life circumstances are too, there is so much change coming up and I don’t know what’s happening from day to day, let alone from month to month. I have a lot of hopes about things I want to do and things I hope to achieve and I’m hoping that maybe once I have more time to myself and once my brain has finally cleared a little that I might be able to concentrate and focus and achieve some of those things. I’m hoping I might also be able to make some more significant and sustained improvements that aren’t so situation-specific. That’s a lot of hoping right there but that’s something I’ve learnt throughout being ill, I can’t plan, I can’t expect or demand but I can hope and I put all of my energy into that and then trying to make those hopes come true without placing expectations or time limits on it. It means that I’m always working and travelling in the right direction and not failing just because I’ve not achieved something yet.
Five years on, I’m not where I hoped or expected to be, but I’m still here, I’m still fighting and that’s enough for me.
In The Midst Of Madness 