I always suggest that people verify my claims especially since they seem to go against what is considered normal or standard(for example exercise and any amount of small exertion in general harms us with ME. This is a bit counter intuitive as people seem to see exercise and beneficial if not curative).

Thank you. small joys is a good way of expressing it. But I also feel a lot of grief and trauma. Grief that I am too ill to play with my pets. Grief that I never had a chance at a successful life or to express my talents an hobbies. Grief and trauma watching how this illness effects my husband. Grief from being abandoned by my family (very common in disabled people in general).

I wasn't always as sick as I am but this illness is progressive and only gets worse as time goes by.

I do get small moments of joy-but they come with a price. One of the most insidious parts of this disease is enjoyment/anticipation can often cause debilitating crashes (this is known in the medical community as PEM/PESE. I highly recommend a video series from The Bateman Horne Center on Youtube regarding PEM for more information). Our immune systems cannot handle exertion be it mental, physical or simply experiencing joy. We pay dearly for these things.

We also cannot do things that most people can to cope with the stress of out illnesses or the stress of life. I cannot go for a walk, exercise or even listen to music or watch tv at times. I cannot visit friends and socialize. I cannot take up a hobby or any sort of activity.

I am on the severe/very severe spectrum of the illness but even those with the "mild" classification struggle to do these things and they always come with a price.

I spend a lot of my time in a quiet dark room because I cannot handle sensory inputs(lights sounds etc). It is like solitary confinement though no crime has been committed.

Video 1 from Bateman Horne regarding PEM. There are 7 videos in this series.