The question dreaded by most people living with illness on a daily basis.
Should we just smile and say ‘I’m fine thank you’? Do we go ahead and tell the truth and, if so, how much information do we share, is there such thing as too much information?
For a long time I practised the former; I put on a brave face and tried to make out that everything was fine. I didn’t talk much about my illness or experiences to anyone; in a way I was living two separate lives. Perhaps at that point I still had hopes of recovering fully and carrying on where I had left off; all I know for certain is that the longer I tried to keep it up, the harder it became until I finally began to open up to people and accept Still’s Disease and all that comes with it, as part of my life. Now when people ask how I am, I try to tell it as it is, albeit in various shades of the truth – obviously my doctors and those who are closest to me need to know when I’m feeling downright rotten or they might start wondering just why am I still in my pyjamas at noon/not up to cooking a meal from scratch/ready to bite someone’s head off. It also means that they can try and help me as much as they can, help that is often much needed. For others that I see from time to time I limit it to letting them know I’m having a good day/week/month or not. I think my favourite response is ‘not too good at the moment but I’m hopeful that will change soon’. I know that some people are a little taken aback when they hear something other than the standard reply of ‘fine thank you’, but so what? They asked the question, if they can’t handle the answer well that’s their problem.
So just how am I feeling today?
I feel rotten!
This is pretty much the norm at the moment. I have been off work sick since January, when I was admitted into hospital, and since then I have been waiting for a new treatment regime that should hopefully include a drug called Abatacept or Orencia. This has to be applied for and apparently my local PCT are dragging their feet over any funding decisions right now; my consultant expected to have heard back weeks ago, his registrar promised it would be last week at the latest but I’m still here, waiting and feeling a little bit worse every day. Today, for instance, the joints in my left arm have gone from feeling a bit sore and tender to me barely being able to move them – shoulder, elbow, wrist and fingers. In fact, my elbow is locked at a 120 degree angle and won’t straighten. Strangely enough, this makes it easier for some people to understand that I am actually ill, since they can see an actual physical problem. I just hope that news of this treatment comes before it is more than obvious.