Sometimes things come up and I don’t quite know how to process them. Or even if they do need processing but I don’t seem to be able to let them go.
In therapy the other day I stated that I can be toxic to my own health by overdoing it. It was harder post reprogramming because I didn’t have the increased pain to warn me that in a few hours and the following day I’d really suffer. I was called out for talking about myself like that. We discussed it further and eventually I realised why I do this. Of course, now my device isn’t working sufficiently I don’t have the pain warning, in fact the pain doesn’t ease much anyway.
When I have a good day I immediately want to do something – walk Bella, see friends and family, make a simple dinner, do a chore so my mum doesn’t have to. The trouble is that I don’t pick one, I try and do it all. I’ve had 3 reprogramming sessions since my operation. The first and 3rd were great but short lived. The 2nd was awful. The 3rd was on December 13th and it hasn’t worked really since Christmas eve. That’s pretty short lived success. But it was success and the chances are its the formation of scar tissue that’s impeding this, or the wires being moved slightly. I honestly don’t know, but I do know its shite.
Following the reprogramming and before Christmas I tried to do everything. I went Christmas shopping for all the children in my life, I saw all of my friends and family, I cleaned or hoovered a around the house (a little bit at a time because I’m still fucking disabled) and I worked through my enormous pile of dirty laundry. Now in writing all that down I’d just like to double confirm that I definitely over-did things.
When someone becomes chronically ill the loss they feel is both immense and all-consuming. The grief of losing so much of who and what you were can be crippling in itself. I know this because I have felt it and continue to feel it. So when you get a light reprieve from your symptoms you seize the opportunity and consequences be damned. Because who knows when you’ll next feel good; it could be a few weeks, it could be months. It could also be so long that you don’t remember when the last good day was. Because for me it can be so rare that I don’t remember the last good day, or at least it was pre-op. I had a good day once in June I think and before that it was September 2022.
My therapist told me how she’s had clients who are in their 80’s and that nearly all of them say that they wish they’d done more despite their ailments. That they never regretted the consequences and wish they’d carried on and not let them stop them doing so much. I responded without thinking and said ‘The pain lets me know I’m still alive’. That I have brief glimmers that allow me to live, even if it’s just coffee or simple crafts. I’ve felt fairly fucking shite since Christmas Eve yet the other day I made a simple ramen noodle lunch for friends. I chose a 20 minute recipe, including prep – a sensible amount of time I am able to stand and cook/chop for. I felt awful before, during and after but I needed to do it. I needed a reminder that I am alive, I am loved and I can on occasion do something and give back to those I love. It was really important to me that I did this, regardless of consequences.
I actually didn’t feel any worse the next day which is incredibly rare, but I was very grateful. At the moment, with my device not performing as well, I am mentally in a really tough dip. The wires in my neck are pulling so tight that on top of my normal HC pain I also have pain from the wires pulling in my head. So much so that even raising my head to adjust my pillow feels too risky. There’s also the mental impact of feeling amazing and then its snatched away. That this programming lasted just 10 days is fucking ridiculous. Perfectly normal of course, the tissue is still healing after all, but its still very disheartening. I know there’s an element of trusting the process, and I will. But I also have to accept that part of that process is feeling the overwhelming disappointment and having a cry.
When it comes to embracing the good days now and pushing through on some of the bad days too there’s a very simple reason for it; fear. When I realised my programming was working I was absolutely terrified that it would stop working again, because it had before and that lasted quite some time. So I will take full advantage of ever feeling slightly good, consequences be damned, because I am absolutely terrified I won’t feel good again. And worse than that I’m absolutely terrified of regretting not making the most of that better day.
So I’ve decided I’m no longer toxic to my own health, I am not the problem either. The problem is my bad health in the first place. The absolute unfairness of this happening to me in the first place is the problem. Me embracing the good days and doing as much as possible regardless of the consequences I know I will face is not the problem. I’m just a woman, who is chronically ill and is often crippled by her fear of never experiencing a good day again, of never experiencing lunch or coffee with friends again. Of never having the chance to experience life in all its glory again. I have to and will continue to do things, hopefully to slightly less extremes, to remind myself that I am alive and that to experience even just a few hours of ‘normal’ existence a week is a gift. The consequences will suck, they always will, but I really do think they are often worth it to know that I am alive.
Life is everything combined, that’s the pure joy of it. You cannot just experience the good, the bad must come along for the ride too. I’ll moan about it, of that I can be certain, but I think I am incredibly fortunate to be able to experience any of it because Lord knows how many times I wanted to experience none of it.