The ME Community

I joined a couple of ME groups after I'd been ill for a few years. They gave me some information, a few jokes and cartoons about having ME and also offered a  few contacts which might help; a video rental and audio books by post company, for example.
Overall I found them, in those days, to wallow more in the fact of being ill. Not particularly helpful on trying to get better.
I want to suggest a few metaphors to you...
Imagine you are building a house. First job is to clear the land, maybe demolish a previous building or clear an area of vegetation. This would represent the beginning of the illness, the original crash, taking away the body's health and realising the life you had before has to be cleared of unnecessary activities.
Secondly you talk to an architect, check the designs and build the foundations. So talk to the doctor, find a diagnosis and try some options through the doctor's recommended treatments. Join an ME group or read some charity websites and relevant  books and realise the vast quantities of options that are out there. So utilise their resouces withou t clingin to them, this is your recovery with your body.
Third job is to begin the process of the exterior and load-bearing walls.You need a planning officer, a project manager to guide your progress and the job starts quite well. You follow your doctor's advice, or begin with an ME specialist, maybe also pain therapists and nutritionists, so the first steps to understanding the condition and initiating recovery have started.
Fourth job will include the roof and windows, also interior walls. The design can be changed at this point with inside walls maybe taken out or added. Weather might come along which prevent the roof going on for a few weeks or months. Little set backs can be disappointing and will lengthen the build time. You probably get the idea from here that treatment strategies might be working brilliantly and the more expertise you have guiding you the more likely you are to be able to choose the best options from the beginning. However no matter what is predicted little things, like a sudden virus, a family crisis, anything which will take away your energy from the treatment process, can delay the recovery. Just know that the building will be built and recovery will happen. At this point you might dip in and out of the ME charities still looking for advice sometimes, but realise that you have to choose your pages wisely- you're not at the onset of the illness anymore. The stages of illness are paramount. If you have had a storm come along and needed to rebuild, the charities and local groups might be helpful, but also your doctor and ME specialists who know you best (and most importantly you!) will guide any rebuild that needs to happen.
During the fifth stage, once the roof and windows are in and the interior walls are set in place the exterior builders can go home. The same project manager will continue the process, guided by your opinions and new experts are brought in to choose interior designs. Wallpaper, carpets, plastering, kitchen and bathroom fittings and any permanent features in the house like electrics and heating which haven't been set inside the interior walls. So the process continues. In some ways this is the most important. Having prepared the canvas by removing as much pain as possible and any more of the more rigorous symptoms more energy will have been achieved. So confidence is built, maybe advice is taken from yoga teachers or general life coaches who help people through the transition from chronic illness to better health and re-entering day-to-day life.  Habits and activities need to be set in place so the illness doesn't relapse as the recovery is continued.
Finally the furniture is chosen and garden is planted up to create a home rather than a house for many years pleasure. This takes time and will be changed as the months and years go by. In recovery new ways of life are chosen. Meditation and yoga might be continued for a lifetime, a more conscious way of living, in tune with the body and aware of its fitting in with the world.
The length of time this whole process will take is not set in stone, but as with house building the more firm the foundations, even if they have to be rebuilt a couple of times, the stronger and more secure the future of the final build.