Death and Rebirth
It's been over four months since my last post.
When I wrote my last entry, Losing My Mind, I was still working full-time, trying to make things work and get through my days. I had tried to keep some relationship with my bike - and therefore some sense of freedom - but through the harsh realities of this illness I was shown in no uncertain way that I couldn't do it.
My life was whittled down to simply trying to get to work and make it through the day. I came home and went straight to bed. There were no reserves left to make dinner, or spend time with friends, or go for a walk. My tank was empty.
Whilst I was starting to accept some of the illness, particularly the very many symptoms, I was still struggling to accept that drastic changes were needed. I was still powering through. I spent a few weeks trying to work from home for three days a week, to alleviate the pressure to perform in the office, and to allow myself invaluable extra time in bed in the morning and space to take naps during the day.
After a few weeks of working from home, I reached a wall. I couldn't continue. The deterioration of my mental capacities made it hell at work, although I still completed my work to a high standard. But I was clearly suffering, despite doing my best efforts to try and hide it for my colleagues.
Fortunately I have a line manager who is familiar with ME and understands what it means. Through a frank discussion - which was a breakthrough because I was frank with myself and saying it out loud - we agreed that it was time for me to take sick leave, and crucially that it was OK to do so. It was OK to be scared. I very clearly needed to succumb to the illness, allow myself to be ill, and to stop using what precious little energy I had for fighting. It was time to Let Go. It was the end of July 2014.
It is the end of October 2014 now, and I have been on full-time sick leave for three months.
For the first two and a bit months I wasn't alive. I felt like I was dying every day. The physical pain, both muscular and neurological, was excruciating. I slept. I took baths. I tried to eat. I forced myself to my invaluable physiotherapist at the Edinburgh Sports Injury Clinic (ESIC) for desperately needed hands-on pain relief and energy work. I also started working with a kinesiologist to address my illness, as the NHS had no options for me. Sleep, bathe, eat, heal, repeat. Everything was impossible. Getting up and walking to the toilet took it out of me. I wasn't here. I couldn't breathe. I had intense, realistic dreams where I was away in other worlds, other places. The only thing that remained from my Self was a kernel of determination that I was going to get through those Dark Days.
In my case, letting go of 'having to do' anything was crucial. There were no responsibilities to anyone apart from myself and what my body needed in that very moment. It was a difficult - but affirming - lesson in putting my needs first. My relationship (the same one I mentioned in Adapt or Die and which I had resumed) suffered because I could no longer give so much of myself to making it work and putting it first, and in September I ended it for good.
In the last three weeks or so I can say with confidence that I have turned a corner. Whilst it still takes me at least 30-90 minutes after I wake up to physically be able to get out of bed, when I do I have the energy to cook my breakfast, eat, and shower. After a period of resting or meditating I may have the energy for a brief walk outdoors with the dogs (or meeting a friend for coffee, or some other task such as changing the kitty litter or sweeping the bedroom floor). Then it's back to resting, staying warm, and then making dinner and eating. These are my days now.
The Dark Days have recently ended, and I am now in a new phase. I call it the Twilight Zone because this improvement is a fragile one. I need to be even more patient now than even in the Dark Days, so that I don't give in to this reintroduced feeling of being Alive and spend it all in one go. I've had a few days of being overzealous and excited and walking too far, for example, and have felt the regression afterwards. I am still really far from 100%. So, slow and steady does it. The dawn is when things start stirring, not when they reach full speed.
I have come through Death. This is my Rebirth. I am waking up. Just as a newborn needs it, so too do I need warmth, care, love, sleep and food. It's all about the basic needs of life right now. Getting this stage right will be essential to my future improvement, and I would be a fool to let anything jeopardise it.
When I wrote my last entry, Losing My Mind, I was still working full-time, trying to make things work and get through my days. I had tried to keep some relationship with my bike - and therefore some sense of freedom - but through the harsh realities of this illness I was shown in no uncertain way that I couldn't do it.
My life was whittled down to simply trying to get to work and make it through the day. I came home and went straight to bed. There were no reserves left to make dinner, or spend time with friends, or go for a walk. My tank was empty.
Whilst I was starting to accept some of the illness, particularly the very many symptoms, I was still struggling to accept that drastic changes were needed. I was still powering through. I spent a few weeks trying to work from home for three days a week, to alleviate the pressure to perform in the office, and to allow myself invaluable extra time in bed in the morning and space to take naps during the day.
After a few weeks of working from home, I reached a wall. I couldn't continue. The deterioration of my mental capacities made it hell at work, although I still completed my work to a high standard. But I was clearly suffering, despite doing my best efforts to try and hide it for my colleagues.
Fortunately I have a line manager who is familiar with ME and understands what it means. Through a frank discussion - which was a breakthrough because I was frank with myself and saying it out loud - we agreed that it was time for me to take sick leave, and crucially that it was OK to do so. It was OK to be scared. I very clearly needed to succumb to the illness, allow myself to be ill, and to stop using what precious little energy I had for fighting. It was time to Let Go. It was the end of July 2014.
It is the end of October 2014 now, and I have been on full-time sick leave for three months.
For the first two and a bit months I wasn't alive. I felt like I was dying every day. The physical pain, both muscular and neurological, was excruciating. I slept. I took baths. I tried to eat. I forced myself to my invaluable physiotherapist at the Edinburgh Sports Injury Clinic (ESIC) for desperately needed hands-on pain relief and energy work. I also started working with a kinesiologist to address my illness, as the NHS had no options for me. Sleep, bathe, eat, heal, repeat. Everything was impossible. Getting up and walking to the toilet took it out of me. I wasn't here. I couldn't breathe. I had intense, realistic dreams where I was away in other worlds, other places. The only thing that remained from my Self was a kernel of determination that I was going to get through those Dark Days.
In my case, letting go of 'having to do' anything was crucial. There were no responsibilities to anyone apart from myself and what my body needed in that very moment. It was a difficult - but affirming - lesson in putting my needs first. My relationship (the same one I mentioned in Adapt or Die and which I had resumed) suffered because I could no longer give so much of myself to making it work and putting it first, and in September I ended it for good.
In the last three weeks or so I can say with confidence that I have turned a corner. Whilst it still takes me at least 30-90 minutes after I wake up to physically be able to get out of bed, when I do I have the energy to cook my breakfast, eat, and shower. After a period of resting or meditating I may have the energy for a brief walk outdoors with the dogs (or meeting a friend for coffee, or some other task such as changing the kitty litter or sweeping the bedroom floor). Then it's back to resting, staying warm, and then making dinner and eating. These are my days now.
My stretching companion ©
The Dark Days have recently ended, and I am now in a new phase. I call it the Twilight Zone because this improvement is a fragile one. I need to be even more patient now than even in the Dark Days, so that I don't give in to this reintroduced feeling of being Alive and spend it all in one go. I've had a few days of being overzealous and excited and walking too far, for example, and have felt the regression afterwards. I am still really far from 100%. So, slow and steady does it. The dawn is when things start stirring, not when they reach full speed.
I have come through Death. This is my Rebirth. I am waking up. Just as a newborn needs it, so too do I need warmth, care, love, sleep and food. It's all about the basic needs of life right now. Getting this stage right will be essential to my future improvement, and I would be a fool to let anything jeopardise it.
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