Hi, 

My name’s Rose, I’m 65, live just outside London and have had ME since 1991.  For most of that time I’d say I’ve been ‘moderately’ affected… ie. neither well enough to work, nor ill enough to be totally housebound.  The last 2-3 years have scuppered that a bit though, as I was diagnosed with severe osteoporosis in 2019, resulting in multiple spinal fractures the following year.  The additional pain and mobility issues from that, on top of the ME, have really limited my capacity, though the arrival of a mobility scooter recently has got me ‘back on the road’, at least to some degree.  That taste of freedom has been wonderful… and gives me hope…

My interest in community living probably originated in my early 20s, when a friend and I planned to travel round the world, then live in a self-sufficient community afterwards…. the hippy dream!!  More recently though, early in my M.E., I found myself moving regularly between rented properties, not always finding it easy to cope with my surroundings, neighbours etc.  I also discovered that holidays with other people didn’t work for me either, as they wanted to ‘do things’, cf. my capacity only really stretched to staring at mountains, or the sea, or watching the world go by!…. So I started travelling alone, mostly to Spain, taking it as slow and easy as I needed.  I found I felt much better in a hot dry climate, so tried to spend some time there each year, but often struggled to find accommodation that suited me…. quiet enough, beds that didn’t make me too achey, pools that were heated and had walk-in steps (rare in Spain back then), villages or surrounding land that weren’t too hilly etc.  A mental list evolved – out of which arose an almost-plan…. to create an affordable retreat centre somewhere beautiful, in nature, in Spain, where other people with ME could also come to rest, and with all the ME-friendly ‘attributes’ I’d found lacking elsewhere.  I was very into green building ideas, even then – so in my imagination there’d be self-contained  eco-pods (en-suite plus kitchen) for each resident or visitor (quiet, light, warm, well-sound-insulated etc), but also communal space for optional shared meals and connection and an organic garden, where hopefully much of our food would grow.  Plus that pool with walk-in steps, solar heated of course… Dependent on finance there might be occasional visiting teachers or therapists, to educate, inspire, support.  Sadly, the plan never quite materialised.  With hindsight I think that partners in crime were needed, to sustain the idea when my own energy, and money, flagged.  Which leads me to: 

Jessica’s AfME Resilience ad.  Her vision was too similar to my Spain idea to ignore, so I replied, despite not knowing whether I’d still have the physical capacity to participate.  Which I think is where resilience comes in.  To me that’s a great name for the group / project.  I see resilience as an inner quality, that kind of dogged-ness – or bloody-mindedness? – that enables us to get back up, however slowly, after every ME relapse, or other setback, and still believe, or at least hope, that sooner or later something better might be possible.  So we keep on trying, really – against the odds, as they say…

If a co-housing project can be created by a group of people with low and variable energy levels, might seem like a bit of a miracle – but when the incentive is that both our health and our lives may become better by doing so, then with a bit of determination and resilience, who knows… 

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