This is the Self Preservation Society: A Crash Course In Surviving Life with Chronic Illness(es)

One of my dearest friends travelled up to spend the week with me and to help me. At the time, I thought she had come for a holiday - but it turned out she had plans to get me out of the house, organised, get us all out for a day out and help me sort the house and food out. She was here to look after me. I'm not one for being looked  after. It makes me feel like I am less than who I was, which even typing this my brain is screaming of course you're less than you were - you can’t teach any more, you can't run for a bus, you can't go kayaking or tree climbing, abseiling or even do the gardening any more.

So my nearest and dearest over the years have trodden very gently around this notion of help where I’m concerned. I once couldn't cope with the idea I needed help. Even though everyone needs help sometimes, mine was compacted by the feeling of  'I am not enough.'

We are in a better place now. And by we I mean my circle. Even last year when I discovered changes in my health, I told noone until my new condition became too hard to hide that friends independently turned up, usually with cake to sweeten the event, and had stern words with me. I had to keep them up to date with changes from that point on. If not for me then for my lads. My circle needed to be kept informed so they could support the lads and me. I liked that better. It still sits awkwardly with me. I'm not quite there yet.

Another friend asks me how I am twice. The theory behind this is that we all answer ‘Fine!’ as a knee jerk reaction - it is only after a pause and a second direct questioning that we will open up to those closest to us. It kind of breaks a pattern, I guess.

Generally it works. Even if she gets a 'Yeah well, you know, just the same really' before a launch into distraction question 'Have you seen the Handmaids  Tale' etc, she knows she's half way closer to my truth.

I've had to do a lot of work on me. I've been a work in progress all my life and so I will always be. But not only in terms of my physical health. I've been working on my mental health - depression and anxiety are with me constantly - but also my psychological health, my sense of self, my ego - the other bits that I never really thought abought before. And my spiritual self. Catholic to Anglican to Buddhist to Humanist and all those colours threading through me now to create a religion all of my own. I’m reading my tarot cards daily. A friend of mine helps me by reading my astrological charts. They help me make sense of my world, just a little each day. My son, a physics and maths genius (he’ll kill me) has told me the probability, likelihood and something else (I forget) of it working is very unlikely. I guess I’d be described nowadays as ‘Spiritual But Not Religious’ (SBNR)

Another friend rang me just before my summer holiday and noting the despair in my voice, her spider senses tingled and she turned up - we got the house, laundry and packing organised - she really came to my rescue.

Routine is helping me. It helps with medication, regular movement, regular eating and drinking, keeping on top of things at home and also keeps me on track towards deadlines. Not all them but I’m trying.

I finally took early retirement from teaching 4 years ago at 44 and was lost. I have relied heavily on meds and cbd over the years and as my reliance and tolerance of meds change, my meds have to change. It’s a constant balancing act of tolerance, reliance, efficacy and then change. But I have balms, oils, lotions and potions and I’m slowly learning the wisdom of resting, repairing and recuperating sometimes many times on a daily basis. I am finding a way to manage my illnesses but I take it hour by hour when I need to. 

I have a routine everyday and it’s fine if I don’t do everything on that list. My purpose is always changing and I’m always trying to help others, read, write, listen to music, watch films and box sets at points in the day. But not all at once. If I manage one thing, I give it a tick ✅.

There is always a way forward. Always.