Sunday, December 09, 2018
Chronic illness, setting the pace and saying No!
Since my first diagnosis in Oct 2007, I maintained a perfect sense of denial to all who knew me. I had worked as a primary teacher since 1995. We were a close knit team – we helped each other, supported each other and drinks out on a Friday night were a ritual. The pace was incredibly fast and we thought nothing of 16-18 hr days. I went for a routine appt only to find out my pelvis was fractured in 2-4 places and I was signed off immediately. The ibuprofen I’d been inhaling since April when Harry was six weeks old was replaced with tramadol and I was sent home from work on sick leave.
Nothing could be done. I had an op in 2010 which got me working again in 2011 and I very quickly got into that mode of long days, less sleep, high stress. I thrived on it.
The pattern repeated itself until in 2017 I was medically retired. I’d officially used up my nine lives!
But I’d always given myself fully to work, always trying to do better – I was never the best teacher or SENCo but I always wanted to do my best which drove me on.
And here I was. I saw this as being at the end of the road. Depression, anxiety, insomnia, it all kicked in. But whenever I got the chance to help with something – be it writing or music management, music promotion or even just going out for an evening, I would rev up, take extra meds and ignore the pain. I’d always manage one or two days then I’d crash for 4-5 days. I thought this was just how it would always be.
Physio got me off crutches and walking with sticks in late 2017 and improving my balance but only when I was rested. Other days I could barely get off the sofa. I did not know what pacing was.
My doctor had sent me for Cognitive Behaviour Therapy over the years which had been helpful in 2010 and 2014 during huge crashes. But this time she felt I needed counselling one to one with someone who could help me with grief and adjustment. I realised I had never allowed myself to deal with my situation as I what always been convinced I would ‘get better’. Medical Retirement at 45 was the reality check. I was officially on the scrap heap.
I confided in my counsellor at my first session that everyone seemed to want me to give up and stop doing the things I wanted to do. He soon got the measure of me and asked why I felt the need to run myself in to the ground.
‘Because then I know I’ve given my best and done as much as I possibly can.’
‘But at the expense of your health?’
‘Well that doesn’t really matter when I have to get the job done’
‘What would you say to a colleague who you saw doing this?’
I’d be worried for them’
‘So why aren’t you safeguarding yourself and your own physical and mental health needs?’
I really had no idea. To me, I’d always equated doing my best with running myself ragged. And I know I’m not alone in this. When I was a teacher, we would even compare our sleepless nights or schoolwork filled weekends as a kind of Kudos. This was the culture I’d been trained in. Accountability and the needs of the school, child and teacher were drilled in to us but we were not asked to protect ourselves.
My first lesson from my lovely counsellor was to have three days spread across the week where I was to make no plans. Have no planned visitors. I had to ringfence time for me to rest.
This has taken me three months to master. I am the Queen of reading other people’s minds really badly so every time anyone asked me to attend something I’d say yes as I decided they’d be cross/upset/let down if I said no. I could always manage to overdo it for a week or two then crash for the next three to four weeks. So then I let everyone else down.
When I crash, the curtains stay drawn I don’t answer my phone I sleep a lot and I hide. My dear friends let each other know that I’ve ‘gone to ground’ as they call it and we keep in touch by text.
But over time I’m learning to say yes to one or two outings a week, two little pop outs for coffee and in between days I rest at home. It’s incredibly difficult and I still wrestle with my demons ‘what will people think?’ But I am slowly improving. It’s okay to say no to invitations and reschedule.
And this pacing malarkey is working. I’m still in pain and I generally rest with extra meds on my inbetween days but I’m managing to get out of the house 2-3 times a week now with the use of my fabulous power chair when going any distance and sticks if it’s just from the car to the cafe and back.
We are all different. We have different energy levels and pain thresholds but this really has changed my life. Along with this I have had to accept going down a couple of gears in order to function day to day. But the benefits of this means I’m present and able to enjoy my days increasingly.
I have started grieving for the life I’ve lost and I’m trying really hard to like who I am now. I’m still very judgmental and critical of myself feeling sad that I can’t do what I used to do. My counsellor is currently helping me with this and I hope in time I’ll see my self in a new positive light.
Pacing myself is really helping quite this. By keeping a diary, I have learned that when I’m in pain and chronically fatigued, I am much harder on myself. A real grump in fact. On better days I can see the silver lining, I can appreciate the huge amount of good in my life which I sometimes struggle to see through pain.
I am certainly a work in progress. But that’s a good thing. Living in the present is wonderful. I do have to remain mindful and grateful which I find easier some days than others but that’s just life I suppose!
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