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⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being. ⚠️
please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it
For a few days before the MRI, I had what I call white coat syndrome. Properly speaking, white coat hypertension is when your blood pressure shoots up around doctors, hospitals and anything wearing a lanyard. What I had was the whole rotten family: medical anxiety, claustrophobia, bad dreams, nerves buzzing, bladder acting like it had joined the resistance, and a head already planning its escape route.
I kept saying I was fine. Of course I did. When Albertine asked how I felt about going for the MRI, I said, “Everything is okay. I’m fine.”
That was bollocks.
What she did not know at first was that I had been having horrible dreams about the MRI machine. That white, soulless tube. The tube I hate going into because I hate enclosed spaces. For several days before Sunday, it was living rent-free in my head.
With MS, stress is not just a thought. It gets into your body. The fatigue gets louder, the nerve feelings get weirder, the bladder gets more urgent, sleep goes to hell and your brain starts behaving as if it has been left out in the rain with the lid off. You can feel like you are preparing for a minor medical appointment while your body has decided it is the final scene of a disaster film.
Monday morning, as I write this, I am definitely not back to any sort of normal — which, with MS, is a fairly flexible concept anyway. The drive had sapped every last bit of energy from me. Then, about an hour and a half or two hours after getting home, everything kicked in. I felt strange. My head felt like it was on another planet. It is hard to explain, but it is one of those horrible MS feelings where you know you are not right, yet you cannot put it neatly into words for somebody who has never lived in a body with faulty wiring.
The MRI itself was not exactly a spa day.
I was lying on a platform with my head wedged into a restraint of some sort. Then they put the mask over my face. I asked what it was, and the chap told me it helped with the scan.
Helpful. Lovely. Grand.
The moment that thing went over my face, My Living Hell properly began.
It was the sudden enclosure. That instant feeling of, “Oh God. Oh dear.” My body started reacting badly. Bear in mind, I do not like enclosed spaces at the best of times. He told me that if I had any problems, no matter what, I should give them a shout.
Well, that was reassuring.
I had written on the form, in big letters, that I suffer with white coat syndrome and that I have a fear of enclosed spaces. They asked me what white coat syndrome was. I suspect “my body panics around medical stuff because life has repeatedly given it excellent reasons to” may have been too long for the form.
Then I was sent up the tube with a little alarm ball in my hand. I was told to press it if I felt weird.
As soon as I went in, blind panic arrived like it had been booked in for the same appointment.
How the hell do I get out of here if something goes wrong?
That was the only thought going through my mind for the first few minutes. I was looking for escape routes from a machine specifically designed not to have any. This was probably my fourth MRI, so you would think I would be used to it by now. Apparently not. Trauma does not become charming with repetition.
The machine began its full industrial-noise concert. Whirring, banging, clanking, alien drilling sounds — all loud enough to make you wonder whether NASA had accidentally built the hospital next door. I had headphones and earplugs in, supposedly to protect me from the noise. “Supposedly” is doing a great deal of work in that sentence.
I lay there holding that little ball as if it were a sacred egg and the only thing between me and a full-blown escape attempt. It was the weirdest feeling and the weirdest mindset. If you have never been through it, trust me: it is a real head fuck. No fun whatsoever.
I would rather have a lumbar puncture than an MRI.
Actually, no. I have had three lumbar punctures. They were horrendous too. So perhaps I would rather be left alone with a cup of tea and no medical equipment within a ten-mile radius.
Then, because apparently the day had not supplied enough inconvenience, I had to take my nipple rings out. Now I cannot get the damn things back in. So I will probably have to pay somebody to put them back through. What an absolute faff. Plastic bars may be the sensible answer if there is another MRI in my future, because I do not fancy yanking them out again just to visit the white tube of doom.
Sorry if that is too much information. But this is my blog. You knew what you were getting into.
Back in the scanner, the sounds carried on. My body began doing what it does: spasms in my legs, spasms in my arms. At one point they pulled me out because they could see I was in discomfort. The nice young man took the mask off, had a chat with me, and then it was back into the hole of death I went.
The descent was very slow. Even slower than my three-wheel trolley of death — otherwise known as my powerchair.
I went deeper into that white tube, still clutching the alarm ball for dear life. I saw a little red-and-white target at the end and thought, “How much longer have I got to put up with this?” I tried to tell myself not to think about what was happening. Naturally, that made me think about it even more.
It felt like an eternity.
Eventually, I was pulled back out. The staff asked whether I was okay. I said I was as well as could be expected with what was wrong with me, and I laughed a bit. Because if you cannot laugh at the absurdity of it all, you may as well scream into an MRI scanner — which, to be fair, I was considering.
Then I found myself in the lift, heading down to the ground floor, and there was my wheelchair still waiting for me. Small mercies. I was ushered through the doors and saw Albertine in the waiting room. I think I might even have smiled. I was bloody glad to be out of there.
I got back into the WAV, took a slug of water, and headed home. Thankfully, I did not take any strange directions this time. The old VW has already cost me nearly two grand in injectors this year, because apparently it too has decided to develop a chronic condition. It is over ten years old, expensive, temperamental and occasionally makes alarming noises. We have a lot in common.
Once home, I did my blog and then spent the afternoon feeling strange in my head and body. Still do, if I am honest. That is MS for you: a medical ordeal can finish, but the body does not always get the memo.
So that was my MRI experience: the white tube, the noise, the mask, the spasms, the panic, the tiny alarm ball and the overwhelming desire to be anywhere else on Earth.
To anyone facing an MRI while living with MS, anxiety, claustrophobia or all three: you are not weak, dramatic or making a fuss. Your body is reacting to something it finds frightening. Tell the staff. Ask questions. Ask for breaks if you need them. Hold the bloody ball if it helps.
And if you get through it, you have earned a very large cup of tea — or whatever gets you safely back into the land of the living.
Peace, healing, love and light to everyone reading this. Have the best week you can manage. The cold weather is coming, so get the blankets and warm stuff early, before the shops decide they have vanished into the same dimension as common sense.
Warlock Dark
Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
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