Today I traveled up to London from where I live to see my neurologist, it didn’t go well.
I got there on time sat down to fill in my forms and heard that the clinic was slightly delayed, which was no surprise as last year I was the 2nd appointment of the day and I still had to wait over 3 hours to be seen because my neurologist was late turning up to the hospital.
An hour and a half went by and then I was called in to see my neurologists nurse, who is very nice. She gave me a letter from the clinical director that was addressed to me regarding the situation with ONS surgery being on hold, and basically just stated that it was still on hold and they are not sure if or when the problem will be resolved. She went through the medications I’m on, which is now only medications to control my POTS. And then asked me about what my pain levels have been like, which has been awful recently. She said that they had nothing more to offer me medications or procedures wise because I have ran out of options. She said that the only thing left was ONS surgery which obviously can’t happen any time soon because of the issues with the NHS and them putting it on hold. But there were the more recent external simulators which have recently come on the market, like Cefaly and GammaCore, and that if I wanted to I could try them. She then said she would go and speak to my neuro in the other room and for me to go to the waiting room and wait.
45 minutes later she called me back, I was expecting her to take me to see my actual neurologist but she didn’t she sat me down in a room with her. I was a bit confused so I asked her if my neurologist was actually here and whether I was going to get to see him. She said that there was nothing he could do so she didn’t see the point in me seeing him and she could just deal with me. By now I was pissed off, I had been waiting a year for this appointment, traveled a fair distance to get to it and was in pain and I wasn’t even going to get to see my neurologist. She said I could see him if I wanted to but there wasn’t much point and it would be another 45 minute wait, so I said I would wait to see him, and off I went back to the waiting room annoyed.
Another 45 minutes later I get called back, this time to actually see my neurologist, finally. He went through what the nurse had said and we had a discussion about it, I agree that there isn’t much he can do but I should be entitled to see the guy I have an appointment with and not be fobbed off with his nurse. I also wanted to ask him a question, that I really wanted and needed to hear the answer to and only he could answer it for me. I asked him if I was going to be in pain for the rest of my life. He said that he wasn’t going to make any promises but it’s highly likely that I will be in pain for the rest of my life. I told him I was desperate, he said he knows and he knows that I needed relief yesterday/today/years ago and that I’ve been in pain a long time now, and he understands that I’m desperate. He is a really nice guy and I truly believe he wants to help me, though there isn’t anything more he can do for me at the minute.
Safe to say have a mixture of some lovely negative emotions about today. I feel defeated and helpless, and I also feel scared about how on earth I am meant to go on in pain for the rest of my life, and I really don’t know what to do, because there is nothing I or anyone else can do to help me. Not to mention I feel beyond miserable and depressed about today and my life. I told my mum when we got home about the question I asked and she cried when I told her what he said, I haven’t cried yet, but that’s nothing out of the ordinary because I hardly ever cry, will probably break down some when soon about it, but for the minute I’m just feeling desperately depressed and helpless. I was feeling bad before today and now I’m just feeling even worse about everything.
Hope everyone else had a better day than I did!