Fighting off the burden of bed

Over optimistically I had hoped that I might manage a winter without the misfortune of a stay in the Hallamshire Hospital. Unfortunately I have already had a sojourn in that luxury accommodation courtesy of a viral pneumonia. Nearly two weeks in the infectious diseases ward (E2) and now another week in bed at home is testing my physical and psychological reserves. This is in spite of the amazing, compassionate care the staff of E2 provide; flexible and thoughtful care from consultants – Ben Stone and Rachel Tattersall, – and the support and love I have from family and friends.  In my mind nights as an in patient are still Having had such a good summer (for me) thanks to Anakinra, the combination of disease flare and infection making me feel so ropey feels doubly bad by comparison – and it is quite incredible how quickly time can disappear essentially doing nothing except “rest”. The uncertainty of how long the situation will last is potentially very demoralising – I can only manage by simply focussing on one day at a time and how I will get through that day rather than thinking about the many ‘what ifs’. I am grateful for mindfulness having taught me to live in the moment – and that doesn’t just mean the moment when things are going well. It also means recognising that when things are difficult I don’t have to think about that being long lasting – I only have to think about getting through the next hour, afternoon whatever and that is entirely manageable. Visualisation of healing along with time spent meditating feel very important to my recovery alongside conventional treatment -which is being kept under constant review and amended as necessary – even if that means stepping outside of usual uses for the therapies .

I am using the time to indulge my creative tendencies and knitting all sorts of things that can form part of my sustainable hand made presents for this Christmas. Not only is it satisfying producing something concrete but knitting is also extremely good for keeping my hands moving and therefore preventing them stiffening up. I persuade myself it will also ward off dementia having once read an article somewhere that suggested knitting was protective against dementia. A bit like believing the articles I have read that say that caffeine is good for you!

Inevitably the other area I am trying to keep on top of is the garden. Directing planting from my bed and hopefully tomorrow spending some time tomorrow planting some seeds. A potting area has been set up in the kitchen so that I can do short spells planting seeds/potting on without exerting too much unnecessary energy and also keeping warm at the same time. It means I can also stay in my pyjamas and just put an apron on over the top maximising the energy available to actually propagate. It is also a good opportunity to draw plans of the garden and do detailed planning for next year and I am just getting started on that. I am determined that my plans to develop the garden as a therapy garden will continue to progress in spite of my current challenges!

And of course enduring a period like this is only made possible because of the support and love of family and friends including my four furry waggers who sleep faithfully on the bed with me when they are not out being taken for a walk or being fed (or hanging around in the kitchen hoping for some scraps to be dropped their way). It really does endorse the view that connections (as in social connections) are critical to resilience in the context of complex chronic health problems. In fact the whole area of resilience and how it can be promoted to help individuals manage their own health problems more effectively is fascinating and a growing area of study/research. I have already read quite widely around the area but this experience has prompted me to revisit the evidence; so more of resilience another time…….




One thought on “Fighting off the burden of bed

  1. Sorry to hear of recent set back, hope you are making progress in the right direction. As part of social connection critical to resilience, are you free next Thurs am? I have a morning free and happy to turn up for a coffee, even if the scarf is not quite finished.
    Aiwyne xx


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