I’m 6 days post reprogramming now, and day 2 of feeling awful. Until today my head was following a pattern of alternate 8-10/10 days followed by 6-7/10 days. If you’ve been reading my blog for a while you’ll know it’s been some time since I’ve seen pain levels below 8. Shockingly, at 9.30am Sunday morning I was driving to go see Hannah and her family to give Ivor his birthday presents and enjoy some family time. It was wonderful and I was shocked at how well I was doing. Normally, even a good day won’t have me functional before 10.30/11.
But today breaks the pattern, if you can call it that after just 6 days. My head is blazing, my tremors are making basic movements incredibly hard and I’m exhausted. But I made a risky cup of tea and held a zoom social with other members of UKCVFamily. I feel nervous holding these, scared I will say or do the wrong thing. Right up to the moment everyone else arrives and you remember we’re all doing something new here and learning on the fly. Then I relax a little and try to ensure everyone gets space to discuss what they need to.
Admittedly, I do feel a little brighter since the zoom. Perhaps lighter is the better word because I still feel awful, but I feel more relaxed now which naturally makes the tremors a bit less controlling. I’d like to think I could log in and do a bit of coursework, or perhaps finally paint my nails which I haven’t even been able to keep tidy since Christmas, let alone apply polish. But I’ve expended more than my body was capable of today and I know I must go back to a horizontal position and fire up the kindle.
Which, quite frankly, I’m fed up with. I read some really good books and series but I’ve grown quite disinterested in them of late. Which could explain why I’ve not been having such a good time because I’m sick of fucking lying here unable to do anything. So I pick my phone up for distraction – I truly hate phones. Being on it drains me and quite often makes me feel a little low. I’m not doom scrolling or taking in negative content, but still the act of being on my phone is exhausting. It’s the same with tvs and my laptop – screens do me no good which is why I limit them so much. I used to have such a healthy relationship with my phone that allowed me to use it for its essential functions and occupied my time with healthier activities. I no longer have that luxury and so it has seen my screen time increase significantly. Whether it’s playing brain games, sudoku or helping with the group, I’m just eagerly searching for a distraction and hope that I’ll find a quick serotonin boost while I’m there. Though helping with the group really doesn’t come into the ‘unhealthy’ activity category because it doesn’t make me feel like crap, quite the opposite in fact.
So I’m trying to change these bad habits that I’ve allowed to creep in. Though I am unbelievably bored of reading and lying down and not being able to live, I also know that without lying down, actively resting, and reading, that my health suffers. So here’s a little woe is me for you all before I stop procrastinating and actually lie down. The book I’m currently reading is very captivating, but I just wish more than anything that there was something else I could do that can occupy my mind whilst I get the rest my health is demanding.
I also had a couple of old friends reach out to check in with me recently. It’s very difficult when they ask how I am because the truth is that while the implant isn’t providing relief and my other issues are getting worse, I’ve in fact declined since I last spoke to them. I’ve never like to be a doom and gloom person, or someone who moans about everything, but I’m also an honest person. So it makes for an awkward admission on my part and I never quite know what the right thing is to say because nothing makes me more awkward than receiving sympathy. So I guess if you’ve got any tips on the right way to respond then please let me know. I know these people care and I want to show gratitude for them taking the time to think about me and make contact, but I also don’t want to come across as a miserable bitch. My current default is to flip the conversation onto them, but the trouble with doing that all the time is that when I do finally open up to someone, I’ve got so much stored that I’ve needed to get off my chest that I don’t fucking shut up.
So here’s me today, reluctantly lying back down. I promise I won’t go off on another tangent to delay the inevitable. I do really hope everyone reading this is doing well today, I hope you get to do something exciting and I really appreciate you being here listening to a sad girls woes.