I have seen first hand a very active person (my wife) who was committed to community life and to work become 11 years ago, at first, bed ridden and still all these years later still not able to even consider regular involvement in any activity.
As a supporter of someone with ME/CFS I have seen her have very bad days and not as bad days.
One thing we decided early that we needed to budget energy like money, that is you can only spend it once, and there is no saving scheme.
I have become aware of the issues that people with chronic illness face but because I have never experienced the debilitating effects myself I can only offer support and not direct sympathy as to what the condition is like.
What is strange is that I am part of a community that knows me as a man alone and not part of a couple, because she has not been by my side for the last 11 years at meetings, Church and other social events etc.
There is still a lack of awareness and understanding of people with ME/CFS and although people mean well very few actually commit to long term support of both the person with the illness or the support for the family of the affected person.
Although people see her with a smile on her face they don’t see the weary person behind the mask, they often say “your looking well” but she knows how she is really feeling.
As much as we try to explain what the condition is like people are generally to busy to take notice and sometimes the saying “out of sight out of mind” is so true.
I think it is time to raise the awareness of this condition, not for sympathy but for understanding and support physically, emotionally and spiritually for people with ME/CFS.