My last blog posts were around Christmas last year. I did not plan a long gap. Life simply narrowed, the way it does when something serious starts gathering speed in the background.
This is the first anniversary of my neurosurgery. The surgery was on 20th February 2025.
I thought I would write this on 20th February. It turns out I needed a bit of distance before I could put it into words.
Even writing that sentence feels odd, because it is not an anniversary in the celebratory sense. It is more like a marker. A line in the calendar that reminds me how quickly things can turn, and how much of that period was spent trying to be taken seriously in a system that moves at its own pace.
Late December 2024 was when it became clear the medications were not having an effect on my IIH, and were actually destroying my kidney function.
Up until then, there is a part of you that keeps hoping you are the person who responds well. You tell yourself it will settle. You give the tablets time. You try to be sensible, patient, compliant. You do what you are told because you assume the plan is the plan for a reason.
Then you hit the point where it is obvious the plan is not working.
In my case, that meant a referral to the neurosurgeons, and a shift in tone that I will never forget. It stopped being about symptom management and started being about risk.
The disease was progressing rapidly. The damage to my sight was increasing. The risk was that this could lead to permanent sight loss.
That is not a vague worry. That is a clock.
Christmas into January: the waiting that does not feel like waiting
The neurosurgeon was initially reluctant to do the surgery.
I understand caution. I understand risk assessments and clinical decision-making. I also understand that from the patient side, reluctance can feel like you are being asked to sit calmly while your world starts to narrow, literally.
Christmas through to January was very worrying.
It is a strange time to be scared, because everyone else is busy being festive, or at least pretending to be. The world is full of closed offices, slowed down services, and people saying things like “try to have a good Christmas anyway”.
Meanwhile you are watching your symptoms, watching your sight, watching the calendar, and trying not to spiral every time you notice something has worsened.
This is the part people often miss when they talk about illness. It is not always the dramatic moments. It is the sustained tension of not knowing if the right thing is going to happen in time.
The point where I pushed
At the end of January 2025 I pushed all the medics to get the surgery done.
That sentence matters to me, because professionally I push to escalate all the time, just on behalf of other people. I have spent my working life playing the role of Andy to any number of Miranda Priestley’s, so that their work was seamless. I chase. I follow up. I apply pressure politely but persistently. I get decisions made. I keep things moving without anyone else having to carry the stress of it.
Doing it for myself was different.
It is one thing to advocate when you are calm and clear-headed and doing it as part of your job. It is another when you are frightened, your symptoms are worsening, and the risk you are trying to prevent is permanent sight loss. You are trying to sound reasonable while your brain is screaming at you to move faster, and all the while there is that background fear of being labelled as difficult. As if urgency, when it comes from the person living it, is automatically seen as inconvenience.
But there comes a point where being “a good patient” and being a safe patient are not always the same thing.
Finally I was told that I would be added to the emergency list.
That sounds straightforward written down. In real life it lands with a mix of relief and fear. Relief because something is finally moving. Fear because you do not get placed on an emergency list for a laugh.
The call I got while I was sitting in clinic
I got the call from the surgical team whilst I was actually in the Neuro Outpatients for a monitoring appointment.
There is something almost surreal about that detail, and it sticks with me. I was sitting there for monitoring, in the place you go to be assessed and tracked and told what is happening, and the call came giving me my date to attend the ward for admission.
It was happening.
Not “we will see”. Not “let us monitor for a bit longer”. Not “come back in a few weeks”.
A date. A plan. A next step that was finally real.
I was admitted the following morning.
Surgery was done the day after.
And just like that, the months of deterioration, the uncertainty, the worry, the pushing, the waiting, the constant mental effort of staying steady through fear, all collapsed into a very short sequence of events. Admission. Surgery.
As I awoke from the anaesthetic, I was immediately aware of something that felt almost impossible to trust at first.
The greying out of my vision, which had been rapidly increasing, had stopped completely.
Not eased. Not slowed down. Stopped.
When you have been watching something worsen day by day, you expect more worsening. You brace for it. You almost do not let yourself believe good news, even when it is happening in real time.
But it was there, right away. A sudden stillness where there had been constant decline.
What I remember most
People often ask what it was like, and I never know how to answer in a neat way.
It was frightening, because the stakes were frightening.
It was also oddly clarifying, because when you are facing the possibility of permanent sight loss, you stop negotiating with yourself about whether you are “overreacting”.
You are not.
You are responding to what is in front of you.
There is a unique kind of exhaustion that comes from having to advocate hard for yourself when you are already scared. You have to explain and repeat and insist, all while managing the internal voice that says you are being dramatic, that you are bothering people, that you should wait your turn.
I do not say this to criticise individual clinicians. I am sure many people did their best in a pressured system. I say it because it is true, and it is part of the experience.
One year on
This being the first anniversary means it is still close. Not “I can talk about it as a neat story with a lesson at the end” close. Just close.
A year is long enough to have some perspective, and short enough that your body remembers the fear before your brain finishes the sentence.
The last few months, from Christmas to now, have been a time of reflection and introspection for me. In part, I was still weighed down with the what might have been, because there is no neat way to edit that out. Those weeks before surgery were filled with worst case scenarios, and even when you come through the other side, your mind can still replay them.
At the same time, I have felt something I did not expect: exhilaration. Not because any of the experience was good, but because I was not being forced to live in the worst case scenario. I was not having to adjust to the outcome I feared most.
Before the surgery, I was merely existing. Waiting. Watching. Trying to stay calm while the outcome sat in the hands of others. This winter, I have been trying to really live this part of the year, because I can. Because I am here to do it. Because I am not on pause any more.
That does not make me brave. It makes me honest about what it felt like, and what it still means.
Why I am writing this now
Part of the reason I am writing this is simple. I stopped writing publicly for a while, and this is me coming back to the blog in an honest way, rather than pretending the gap did not happen.
Another part is that people living with IIH, or any condition that threatens your sight, are often dealing with a specific kind of fear that is hard to explain to anyone who has not been there. It is not only the pain or the symptoms. It is the awareness that what is happening could be permanent.
If you are in that Christmas-to-February place, where things are worsening and you are waiting for the next step, I will not insult you with platitudes. I will simply say this.
Keep records.
Keep pushing when you need to.
Do not let politeness become your risk factor.
And if you have a moment where your body tells you the situation has changed, listen to it. That instinct is not drama. It is information.
One year on, I can say this with complete certainty.
I am grateful the surgery happened when it did.
And I am back. Working again with strength and determination, but also with a clearer sense of what matters, and what is not worth sacrificing myself for.
If you are looking for more information about IIH and IIH neurosurgery, or support, IIH UK is a good place to start: