Oh dear, I don’t know the answer, because it almost could have been me writing! I was having a rant only yesterday, that the write-up of my most recent neuro visit claimed I have “no significant symptoms”, other than painful feet and slight urinary hesitancy. This certainly doesn’t capture how rubbish I feel on a day-to-day basis. Like you, I feel as if I can’t have explained it very well, and they think I’m doing a lot better than I am. Of course, none of it’s visible, which doesn’t help - although I should have thought most neuros would be well aware that with MS, looking fine can be deceptive - it doesn’t necessarily reflect how the person is feeling.
I feel constantly exhausted. I lost my job last year, but have never even looked for anything else. I recently started college just one afternoon a week, but am questioning whether even that is too much. Once the bus and train trip is added, I get home on the verge of collapse. Fatigue isn’t even mentioned in my write-up, nor the fact I ache everywhere, every day, as if I had permanent flu’.
One thing I did acknowledge, in my own rant about this, is neuros do see a lot worse cases. I know that is of little help, and doesn’t mean your problems (or mine) are insignificant. But it may help to explain why we see ourselves as struggling, whilst they think we’re doing well. Compared to their last patient, we might be!
But I know the mantra of: “there’s always someone worse” isn’t much comfort, when you wake up thinking: “Am I always going to feel this bad?”
I suppose it depends how much you want to pursue it. I would like my notes at least to reflect that my illness does interfere with life - which I don’t think they do at the moment. But on the other hand, I’m not desperate to add yet more drugs, so I’m not sure it’s worth making a fuss, if I’m not really wanting them to treat it. I don’t think anything they can prescribe will make it as if I didn’t have MS, so it might be a bit pointless clamouring for the impossible.
As someone (Alison) so rightly pointed out to me yesterday, it’s not always that we want something done, but more that we want our issues acknowledged. It is a bit dispiriting, when you feel lousy, but your medics are saying everything in the garden is rosy! They probably know it’s not “fine”, but they do see a broad spectrum of cases.