Back in February I collected notes for a new blog post about my thoughts and psychological experience of illness in the last month or two. This was partly about sharing the experience, and partly about getting the same thoughts over and over again out of my head and onto digital paper.
I never got round to properly writing most of it, and a few months on, I don’t think I will soon. So I thought I would upload the notes as a blog post anyway so that at least something is up there instead of gathering dust on a shelf. And I tell myself I can always edit the blog post directly if I find myself with time to.
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Lots to say, but also not much new to say. Waffley and repetitive, representing thought experience of the last months
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- Symptoms still strange
- Art dots, headache from that, legs tense up as it overloads my nervous system with “stress”.
- The lag thing, of course.
- If get sad, sneeze. If bladder half full and mental exertion, urgently need to wee.
- Beyond medical understanding.
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- Monotony, sameness. Same thoughts, over and over. Not much new stimulation. Sometimes it’s normal, then that’s strange that it’s normal
- Existentialism thoughts. Just experiencing thought. “This is really hard” – but what is hard? Last year experiencing difficult mind states.
- Mindfulness and existentialism answer.
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- Variety of human life. Mine before to now. Around the world. Documentaries, nature. Life is absurd.
- Also, this is normal. Humans have long had illnesses they don’t understand. Being crippled is common part of human experience. Waiting out winters.
The human experience is yearning and striving and hoping and impotence and tragedy. I’ve long thought that life is about making the most of it, you are dealt the cards you are dealt and you play them as best you can. There’s nothing new about that. But it is strange being in the ‘you can’t really play at the moment’ part of that, the yearning and impotence without the ability to be striving much in the face of it.
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- These are the golden days. John Green quote. Last september, thought ahead. Now i’m in them. Easy, peaceful days. Stable. 12 months since disastrous iatrogenics hospital. Gratitude – bowels work, not in fight flight freeze mode lots, not so bored, can do more laptop stuff, have been able to finish legal theory projects.
On the good days, when things feel fine and seem stable and are moving in the right direction, I remind myself to relax and enjoy the lightness of it. That these are the golden days, with no immediate stresses or suffering.
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- There are still crash days. Usually after trying something more, pushing to see where the edge of the envelope is. So i still have stability if I stay within my known pacing limits. They are still pretty horrible, the symptoms feel yuck. And the crushing of dreams. A few days of positivity, feeling good, spirits soar with hopes for continued improvement, smashed, usually after trying something and feeling fine the day before. Still have to draw on mental reserves to PERSEVERE, wait it out, it will pass.
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- Strangeness of endurance. It’s “hard”, but what is hard, just experiencing emotions? Nothing to do or overcome apart from feeling feelings most the time. Used to be hard to make myself bathe or overcome fight-flight-freeze.
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- Mind is amazing. Grief, repression. Now coming up more.
- Severed from life, relationships. Time warp. Cut off no news no social media. Strange, just, removed from the wider world.
I haven’t seen any news really for a couple of years ago — I don’t go on social media, check news websites, and only see occasional things that pop up via the youtube algorithm.
- And this ties into how I used to be doing lots, politically active etc, as a big part of my identity and activity. Not anymore. Maybe again.
- I can message more, but reengaging is strange, and brings up the grief and sadness.
I’m starting to be able to be in touch with people again. But that’s strange too… reconnecting after being severed. I know little of what is going on in people’s lives. There’s an experiential void to cross, we are in different worlds.
- Out of survival mode. I knew this phase of recovery would come, so, try to embrace the moving forward even if it’s more sad.
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- TIme dilation
The experience of time is strange – but also exactly as expected. each day passes fairly slowly, with not much happening to satisfy the brain. Sometimes I look forward to small things because it’s something for my brain to do. With such monotony, longer periods seem to have passed quickly… 2 months / 6 months.
Increased capacity and Thinking I can do things in the next 1-2 weeks! But then having 5x as much as can actually.
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- The range of emotions
Of emotions is strange too. Sometimes things are peaceful, relaxed, positive. I tell myself to just bask in the peace, be content that I am calm and healing is happening and that I am blessed to have hopes and dreams. I think back to bad times, such as around the time of the disastrous hospital trip for testing 12 months ago when my bodymind was stuck in a stressed out time for a couple of weeks, and while I kept reminding myself it would pass, I also told myself to remember it so that I can be grateful simply to be relaxed and at peace. Or when a simple thing like a new text message or question from my parents would totally overwhelm my brain. It’s amazing to just be relaxed, and that each day I can now do a safe 20 minutes of writing or work-level activity on the computer, which is much more than when I could only do 5 or 7 or whatever last autumn, or 10 or 12 or so in December. And grateful that, although I’m slightly bored and understimulated, I can still watch a variety of interesting enough TV shows (slowed down), so lucky to have this digital technology while I am so limited.
So much else to be grateful for.
BORED IS GOOD.
Sometimes loneliness and grief and isolation and loss come on strongly. I wouldn’t quite say unbearably, but intensely.
Of course, this range of emotions is very normal, happened too in normal life. I think what I find strange is the lack of stimulation, the monotony of my daily life, and that not much is prompting these emotions… just tides and currents of the mind. Although definitely my mood is affected by my momentary state of health – when my nervous system is calm and energy is positive, I feel much better than when my nervous system is quite disregulated or my energy in deficit or a crash. Blah blah. Of course it’s like this.
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- Future thoughts strange. Simple life goals, realistic life goals, big life goals. My past life feels life a past dream. I guess it is. Future scary. Radical acceptance. Like I died and get another go, make the most of it, even just a limited half-life. Adventure mindset. Blessing to have had my past chance. Blessing to have such dreams and possibilities for the future.