“Is this normal?” What is normal? I’m at 5yrs since my last surgery and I still have those symptoms, I admit not as a constant anymore, but still daily. 5weeks post surgery is still fairly early in your recovery. Your body is still making adjustments to its new reality and although the theory is ‘6-8weeks and the body has healed’ when it comes to the brain 6-8weeks is only the start of your recovery.
I was seeing a pcp and his view was “They operated, they fixed…” But this is far from fixed. I am now seeing a different pcp, one who comprehends this reality.
The surgeon’s view is that I’m over reacting ‘cos it can’t be THAT bad’ but, man this is just so exhausting. I even had one neuro tell me I just simply had a low tolerance to pain. No, I have a low tolerance to idiot dr’s who think they know it all. They don’t. Only those of us who have been here, been living this reality will ever know the true extent. I often explain it like this. When you hurt your arm, it’s your arm that affected. But when it’s your brain it affects EVERYTHING. Others don’t seem to comprehend this at all.
Because everything is affected we now have to adjust everything. Our ‘normal’ is no longer. Our ‘normal’ tolerances are no longer. I have learnt my body’s new signals but it has taken years. My initial thought was I needed to push through my pain to build stamina, to build new tolerances. But although I could push past my limits I paid dearly for that the following day. Now I have to listen to my body because it does tell me “Laydown or I’ll put you down” and if I don’t listen or ignore those signals it does put me down and sometimes this can mean days in bed in a darkened, silent room. Any stimuli and my head is banging to the point it feels like my eyeballs are going to explode from my skull.
Is this normal? I have lost all reference to what is ‘normal’. I now have to manage the reality of today. I can’t plan for tomorrow with any surety, I can make plans but I never know what tomorrow will bring. If I can function, well, that’s a bonus but I can never be sure.
I’m sorry, this probably isn’t what you want to hear, (nor do I), but this is my reality. Now in saying all of this I’ve had a few neurosurgeries (6 so far) and each one has knocked me a bit more, with the last operation knocking me out of commission permanently. After some time you may recover a bit more, but no one can say how much nor how far that recovery will go, imo least of all the medical fraternity.
Natalie, I do wish you the best of luck in your recovery and do hope that things do get better, but just know that if they don’t you are not the only one in this awful position. Some of the medicos make out we are in this position by choice, but who the hell would want to choose this? Not me that’s for damn sure.
Merl from the Moderator Support Team