The NHS & Chronic Dis - ease.

I think I can definitely say that dis-ease is a constant in my life. Ease would be nice. Not sure I remember what it actually feels like.

Currently I'm feeling nauseous & fatigued because I'm gradually coming off all the pills the medics have prescribed like smarties. (Monitored by my GP). I have finally decided that as none of them seem to be stopping the considerable pain and stiffness there is little point in taking them. The issue I have with the way the NHS works is that they literally do operate a "suck it and see" policy for people like me with a whole range of chronic conditions. They fire bullets & hope that one will hit home, but bullets can kill you & drugs are toxins.

I have found, over the many years my body has baffled medical science, that doctors in general are very good at tolerating their patients pain. They have to be or they would have a complete emotional breakdown. However, for the patient this is bad news.

When I have an appointment with any medic I take an updated synopsis of my medical history, (a little shorter than "War & Peace" & not so entertaining). I also have bullet points of queries & concerns. I go prepared, so I try to ensure that there is an effective exchange of information and clarity.

The wheels of the monolith NHS do grind slowly though, unless you have an accident or a very serious illness. Because everything is supposedly done by testing & is evidence based there is a tendency to dismiss those who fall outside the accepted perameters. A consultant has just admitted to me that a very small percentage of people can fall outside the norms & still have the condition. This is the second time this has happened to me. Once with Hypothyroidism & now with Polymyalgia Rheumatica. The old fashioned way of diagnosing by symptomology seems to have fallen by the wayside.

I can't get out of bed in the morning because of stiffness & pain. I am sleep deprived because the pain wakes me up, or stops me from going to sleep. Walking to the ensuite or down / up stairs to have breakfast is an accident waiting to happen. I'm not going to die from this - whatever "this" is, but it is hampering my life 24/7. It is exhausting.

I want an accurate diagnosis & I want effective pain relief. I am by no means alone in these simple desires. Is it too much to ask?