That is certainly something I recognise. My wife tries to live by pacing herself. That is the only way she can manage her condition. She knows it is a lot worse in winter than in summer and it will flare up if she over-exerts herself. She can save energy for specific occasions, for example a conference, work or an evening out, but no matter how much she plans, it can catch her out. She will be too exhausted or in too much pain to meet a deadline or go to a meeting. She ends up giving her apologies and feels that she is unreliable. She has practically given up trying to plan social things in advance. It is incredibly frustrating.
Unless more research can be done into this condition and more awareness raised among the medical profession and employers, fibromyalgia suffers will continue to be disadvantaged by more than just their symptoms. For us, this is not just about how fibromyalgia is classified under the Equality Act 2010, but, in common with many recurring and fluctuating conditions, about how people with these conditions are treated and supported. There needs to be much more research into the condition alongside consistent treatment pathways, with better training for medical professionals to recognise and then treat the symptoms.
Services should be in place to support fibromyalgia sufferers to enable them to live their lives as fully as possible. It has taken my wife two years, at her insistence, to be referred to a pain management clinic. A year on, she is still waiting to be seen. All the time she is suffering and her condition is deteriorating. I hate what this condition has done to my wife and our family. It is so frustrating not being able to help her make the pain go away, not being able to help her find a way for her to live her life as she should. It is so frustrating that there appears to be no hope on the horizon that things will get any better soon.