Three.

My diagnosis journey. Where you realise that your whole life changes in the blink of an eye. How one day you can be thousands of miles away from home, sunning yourself at your private swimming pool at the villa on your first proper holiday abroad, listening to cheesy eighties ballads up loud on a bluetooth speaker and tipping your boyfriend off the crappy €5 lilo you got at the Spar into the water, no cares in the world, then the next day, back in Scotland driving along the M8 when you suddenly get severe head and neck pains and think nothing of it but over the next 3 weeks your whole life gets turned upside down. This is my story.

I went to Majorca for a weeks holiday, 15th to 22nd April 2017. I had been having a pretty tough year so far already so this was my thing to look forward to, my light at the end of the tunnel.

On our first full day there, Sunday 16th (Easter Sunday), I found out that mosquitos really like me and it turns out i dont like them, as i had a pretty severe allergic reaction to their bites and had to go get an injection (some sort of steroid called celestone chronodose) and a topical steroid cream from a doctor to stop the reaction. That done i was on my way back to continue enjoying myself.

Monday 17th and Tuesday 18th were amazing, a dream come true. We found some nice hidden beaches that weren’t typical tourist hotspots and went swimming in beautiful crystal clear waters, gazed over the turquoise sea and lay on white sandy beaches, cliff jumped into the water and all round had the most fantastic time ever. I did get pretty severe sunburn but it never blistered or anything so i just coated myself in aloe vera aftersun and kept myself covered and in shade for the next two days.

On Saturday 22nd April we got back to Scotland and headed home. This was the day i started to get a really bad headache – worse than any normal headache and a stiff neck. I originally thought maybe i had slept in a strange position the night before or maybe sat at a crooked angle on the plane but my head pain was slowly increasing as the afternoon went on. I thought it may be to do with the allergic reaction to the mosquito bites so i spoke to NHS24 who said to try paracetamol and see my GP if its not gone after 48 hours. By Tuesday 25th my headache was still there so i made an emergency appointment with a GP who checked my blood pressure, my temperature, my eyes and ears, all of which was normal and I got prescribed asprin and advised to give that a few days to see if that helps. Over the following days i started off at the low prescribed dose and gradually increased the dose of asprin to see if any dose would take the edge off the pain, but it didn’t. I went to see my GP on Friday 28th April who again checked me over and prescibed me a migraine tablet. At this point i was 7 days into my constant headache that felt like it was going to make my head explode. I was dizzy and felt sick. My neck was stiff. My vision was going blurry and i was struggling to focus as i had black spots on everything i tried to focus on. I woke up one morning and opened my eyes to complete darkness for ten seconds. I could hear my blood rushing in my ears. I couldnt lie down without my head feeling like it was going to burst. I often slept sitting up on the sofa. I bought a memory foam luxury neck travel cushion to support my neck incase i was causing this pain myself. I had to put my socks on by bending my knee sideways so my foot was level with my knee cause i couldnt bend forward as it felt like my brain was going to fall out my skull. If i sneezed i was worried incase i would cause a nose bleed or one of my eyeballs would pop out. I was constantly anxious of what was wrong with me. The doctors so far could not find a reason for the headaches.

On Friday evening i started to get worse. My headache was becoming sorer and sorer, my neck more stiff and the painkillers weren’t helping at all. I was constantly dizzy. It was my nephews birthday party the following day and I had promised him a stay over at mine followed by a trip to the safari park so i gritted my teeth and soldiered on, after all, it’s only a headache, right?

I shouldn’t have pushed myself through it.

On Monday the 1st May, the 10th day of my constant headache, i was now unable to move my neck at all. Not even one centimetre either way. I phoned NHS24, had to ask a friend from work to come and take me to an out of hours appointment as i couldnt drive due to not being able to move my neck at all and saw another GP who literally told me to go to sleep and prescibed me some codine, then told me to go to specsavers as i hadn’t had my eyes checked for a few years. She didnt seem to listen when i said that my eyesight has always been perfect up until 10 days ago.

On Tuesday 2nd May, i made an emergency appointment with my own GP and said something needed done. I practically refused to leave the room until he sent me to hospital. I was referred to the Clinical Assessment Unit and an hour later i was in a gown getting my bloods taken.

Over the next three days i had numerous different consultations with different doctors, countless amounts of blood taken, a CT scan, an MRI scan and a lumbar puncture. The lumbar puncture (3rd time lucky as they couldnt find my spinal fluid so i have 3 nice puncture holes in my back) was done backwards as the anaesthetists had to do the procedure so the spinal fluid samples were taken before the pressure reading was taken but my closing pressure was 22. They ruled out blood clots on the brain, tumours, meningitis and any other nasty diseases. I was given an initial diagnosis of Idiopathic Intracranial Hypertension, which was to be confirmed after my eyes had been checked.

In my MRI scan they saw a marker called “empty sella” which, as far as i understand is an indicator that there is high pressure in the skull which is pressing down on the pituitary gland which makes it look smaller than it should be. In the blood tests they did they also noticed that my stress hormone (cortisone) was slightly lower than it should be so i had to go back for further tests regarding this two weeks later. These tests came back normal.

On the third day of tests in hospital i went to an eye clinic as my optic nerves and discs behind my eyes were swollen and inflamed – a condition called Papilledema. I had a haemorrhage in both of my optic discs which was caused by the high fluid pressure inside my skull which was causing the vision issues. My IIH diagnosis was confirmed. I was given a prescription to start me on medication to help stop this condition from damaging my eyes any more and to try and reverse the damage already done to my eyes.

It had been a scary week. I was in pain. My back was agony from the lumbar puncture. I woke up the following day from it unable to move the bottom half of my body. My hip had seized up. I wasn’t sure if it was internal bruising from the doctors pressing so hard looking for my hip bone repeatedly or if the pain was normal after a lumbar puncture, or if something had gone wrong and perhaps a nerve had been touched while the procedure was taking place. All i knew was that it was 6am and i was panicking and crying because i couldnt even adjust myself in bed to a different position without excruciating pain.

Was this going to be my life now? Am i going to end up blind? If these little pills dont help, will i never be able to see my beautiful nieces and nephews faces again? Will i never be able to drive again? Am i going to be disabled for life? All these questions were running through my mind and i had nothing to distract me from them.

Distraction has always been my coping mechanism. I will throw myself into work, happily doing 12 hour shifts so i am too mentally exhausted to think about my own personal life after work. My days off I would get up and leave the house to visit friends or family for the day (or two or three…) to keep me busy. I liked being alone, i like my own space to recharge my batteries, but i do not like my own company. I do not like to let myself get lost in my own mind. I find paths i dont recognise which lead me to intriguing caves full of darkness which suck me in and i cant escape. I find myself in these caves at night often, in my dreams, but thats a story for another day.

Since my diagnosis I had my first appointment with my neurologist. She seems pretty great and very helpful. She has taken the time to answer all my questions and explain everything thoroughly to me so i understand. My medication has been doubled and a new type of pill introduced as well which i am struggling with the side effects of. I am hoping as my body becomes more used to the medication the side effects will become more tolerable.

I am finding it very hard to come to terms with the fact i now have this condition. This illness. This disability. A brain tumour without the tumour. I’m not in a wheelchair or limping so its not easy for people to see that i am not well. They will not see me falling over in the privacy of my house though. Slipping in the shower cause i am dizzy and unbalanced. Falling up the kerb because i can’t judge how close the ground is to me. Falling against the wall and cutting my hand on the pebbles. The shortness of breath that comes with my medication where i am breathless from trying to even change a bed sheet. The forgetfulness that comes with this condition. Permanent brain fog. The anxiety that comes with that. The embarrassment i feel when i can’t speak properly. And the pain that i cope with each day, that painkillers do not help with. From morning to night i have constant pain. But I will be judged. Called lazy. A faker. A scammer. I felt their eyes upon me last week when i had to hand in forms relating to a benefit claim (which i am not entitled to but thats also something for another day) at the Jobcentre, i walked in there with two functioning legs. I didnt have crutches or walking aids or a carer. I could feel them all judging me because i didnt look sick enough.

I am scared. Scared of myself. Scared incase i hurt myself. Scared incase i hurt someone else. Scared because i have no control over what is happening to me.

Today my sister said to me that a caterpillar has to fully break down in order to transform into a butterfly and that this is my transformation. That even though it feels to me that my mind and body is broken just now, it has to do that in order to become the butterfly. Its funny because yesterday when i set up this blog, i was looking for a suitable picture and i originally chose one that said “Perhaps the butterfly is proof that you can go through a great deal of darkness yet become something beautiful”. There is nothing stronger in this life than the connection between two people who love and care deeply for one another. Perhaps her choice of analogy today after me choosing that particular picture yesterday, without her knowledge, is proof of this.

W.♡