Although I had delivered the statement “the reason I ask is because of the PACE trial” in my best up-speak, implying questions such as “Have you heard of the PACE trial?”, “What do you think of the PACE trial?” etc etc, Dr Hanitsch, unlike my blood, was not to be so easily drawn.
If one day I am asked to compile a list of the top ten neutral, non-committal nods that I have ever witnessed, at least I’ll know who to put in the top spot. Dr Hanitsch silently inclined his head without turning. That was it.
I can only speculate that his line of work had taught him how quickly he could find himself pinned up against the wall by a red-faced PWME screaming “Are you for us or agin us?” Or maybe he just didn’t feel like discussing it. Or maybe he was simply too busy. I will never know.
It was time to stand up and have my blood pressure and pulse measured. I had told Dr Hanitsch that at rest my pulse was around 50, and that when I stood up it shot up to 100 or more, so was looking forward to demonstrating it, but unfortunately the machine showed my sitting pulse at 69 and my standing pulse at 93, which wasn’t nearly as dramatic as I had hoped. It was then measured again 5 times at 2 minute intervals, where it settled back down to around 83. My blood pressure seemed normal.
I told Dr Hanitsch that I was in a self help group and posted on an online forum, and that there would be interest in my visit, did he have any objection to me posting a report? He said no, there wasn’t much he could do about online reviews anyway. I said that if he had any objection at all then I wouldn’t write anything, but he really wasn’t bothered.
“Do you divide your activities into 3 categories?” he asked, “Easy, medium and heavy?”
“I have seventeen categories” I replied. After a further brief exchanged we agreed that we could skip the pacing talk.
“You do know that we probably can’t do much for you don’t you?” He said as he walked towards the door. “Unless we find that one of your blood values is very abnormal” he added as if that wasn’t particularly to be expected. “Yes, I understand that”, I replied.
And that was it, after 90 minutes he left me with the nurse taking my blood pressure at 2 minutes intervals, and when she had finished she said I’d be getting post in 6-8 weeks.
I had been told to expect a 3-hour appointment, but I think we probably saved half an hour each on 1)the conversation about everything I’d tried so far 2)the conversation on pacing advice and 3)the conversation about there being not much they can do.
So, as one person at my self-help group asked after I’d given a half-hour presentation on my visit, why did I go, was it worth it?
Well, yes it was. I will get my immune system completely checked over, my file will be discussed with Prof Scheibenbogen, my blood will be used in CFS research. And I expect to receive a diagnosis from a credible and recognised institution, which will be handy if I ever need to apply for a disability pension (not currently on the plan), or just for shutting people up generally.
Plus I will be getting my report in 6-8 weeks, and they might find something …
If one day I am asked to compile a list of the top ten neutral, non-committal nods that I have ever witnessed, at least I’ll know who to put in the top spot. Dr Hanitsch silently inclined his head without turning. That was it.
I can only speculate that his line of work had taught him how quickly he could find himself pinned up against the wall by a red-faced PWME screaming “Are you for us or agin us?” Or maybe he just didn’t feel like discussing it. Or maybe he was simply too busy. I will never know.
It was time to stand up and have my blood pressure and pulse measured. I had told Dr Hanitsch that at rest my pulse was around 50, and that when I stood up it shot up to 100 or more, so was looking forward to demonstrating it, but unfortunately the machine showed my sitting pulse at 69 and my standing pulse at 93, which wasn’t nearly as dramatic as I had hoped. It was then measured again 5 times at 2 minute intervals, where it settled back down to around 83. My blood pressure seemed normal.
I told Dr Hanitsch that I was in a self help group and posted on an online forum, and that there would be interest in my visit, did he have any objection to me posting a report? He said no, there wasn’t much he could do about online reviews anyway. I said that if he had any objection at all then I wouldn’t write anything, but he really wasn’t bothered.
“Do you divide your activities into 3 categories?” he asked, “Easy, medium and heavy?”
“I have seventeen categories” I replied. After a further brief exchanged we agreed that we could skip the pacing talk.
“You do know that we probably can’t do much for you don’t you?” He said as he walked towards the door. “Unless we find that one of your blood values is very abnormal” he added as if that wasn’t particularly to be expected. “Yes, I understand that”, I replied.
And that was it, after 90 minutes he left me with the nurse taking my blood pressure at 2 minutes intervals, and when she had finished she said I’d be getting post in 6-8 weeks.
I had been told to expect a 3-hour appointment, but I think we probably saved half an hour each on 1)the conversation about everything I’d tried so far 2)the conversation on pacing advice and 3)the conversation about there being not much they can do.
So, as one person at my self-help group asked after I’d given a half-hour presentation on my visit, why did I go, was it worth it?
Well, yes it was. I will get my immune system completely checked over, my file will be discussed with Prof Scheibenbogen, my blood will be used in CFS research. And I expect to receive a diagnosis from a credible and recognised institution, which will be handy if I ever need to apply for a disability pension (not currently on the plan), or just for shutting people up generally.
Plus I will be getting my report in 6-8 weeks, and they might find something …