Now that explains it
In May 2020 after my Diagnosis of Intercranial Hypertension in the April, I’d started the medication and was letting this settle in, I was still off work until I knew that everything was going to return to normal for me…There was to be a slight delay with that.
A few weeks passed and although the blurred/double vision seemed to have disappeared I still wasn’t feeling great but couldn’t put my finger on why? I remember it being a lovely sunny day in the middle of May and we were sat in the garden me, Ryan and Ryan’s daughter they were in t-shirts and shorts and I was absolutely freezing in a hooded top, coat, hat and gloves. The hot tub was on but the thought of having to get undressed to get in made me feel physically ill, I thought at the time it isn’t right to be feeling like this but I had no reasoning to explain it. Fair to say I didn’t sit outside for long.
Over the next week I noticed I started feeling ‘wobbly’ on my legs and if I turned around too fast or looked at something too quickly I stumbled, usually in the kitchen for some strange reason? In my kitchen where the sideboard of the sink meets the sideboard for the cooker there’s a good space that I quickly learned could stop me from falling if I stayed close, so if I was in the kitchen for any length of time that’s where I used to stand in case I became unsteady. I’d also noticed that each morning I would get horrendous pins and needles in my hands and feet that would last around 10 mins. I started to think the tablets weren’t agreeing with me, but decided to give them at least a month before speaking to the Doctor.
I didn’t get chance to give it a month, one morning in late May I woke with the most awful headache like I had been hit with something very heavy, blunt and that possibly someone had tried to murder me and failed badly, now I knew that was unlikely and it was just all in my head! As I turned over to get out of bed I got the urge to vomit so quickly laid back down and got my breath back. Every time I moved my head from side to side or attempted to get up I vomited, I remember thinking it must be a sickness bug, Ryan brought water and a more suitable vomit bucket!! That lasted a whole day, night and into the next day, by the next day I was feeling worse by the hour and decided to call the national 111 helpline and told them my symptoms, previous double vision, Intercranial Hypertension diagnosis and now the headache and vomiting, they advised I go to my nearest A&E to be checked over. My sister-in-law drove me but had to leave me at the reception due to Coronavirus, as I went from one department to the other I was having to walk sliding along the wall so I didn’t fall over, probably looking extremely drunk to everyone. They kept me in overnight took some bloods and gave me Intravenous Fluids. The next morning I felt even worse when the Consultant came over and said to me you have Gastroenteritis and should go home to rest. I knew it wasn’t Gastroenteritis (purely because there was only something coming out one end and not both) I probably seemed very desperate and pathetic but I asked if I could have another lumbar puncture to check the cranial pressure as I was adamant it was linked to that to be feeling this rubbish, he said no and I was sent home.
Another two days passed and I felt no better if not worse, I was beginning to feel so fed up. Ryan would make me tea and toast and bring it up to bed for me and pleaded with me that I’d eat it but I just couldn’t, one day I gave the cat a piece so he’d think I’d eaten it (suppose I’ll be in trouble now!) But still every time I moved I vomited, the next day an ambulance was called and they took me into the department where I spent the whole day, the same thing was said to me that I had Gastroenteritis, I knew I didn’t, but who was I to tell them, what could I possibly know! Again I was sent home.
The next day or the day after that, I’m not really sure anymore the double vision made its grand re-appearance, such joy! mixed in with the headaches, the vomiting and barely able to walk I rang the 111 helpline again. Again I was told to go to A&E, but this time they kept me in, it was a weekend so I was monitored, bloods taken, given some fantastic anti-sickness medication until Monday morning finally came. A team of Dr’s visited my bedside and said they would like me to have another lumbar puncture to check the pressure, great!!I didn’t even care if it was Edward Scissorhands performing it, I was finally getting it done and hopefully it would find some answers. As the Dr was about to leave there was a noise over to the left and I looked in that direction, he stopped and crouched back down in front of me he said can you look that way again and keep your head still so I did, he called over the Junior Dr and said “ask this lady to look to the left and tell me what you see??” I did as I was told and she said “Oh yes, Nystagmus” I thought to myself ‘Ny what, this is not an appropriate time for Greek Mythology?!’ He then added I would need a follow up eye clinic appointment and an MRI brain scan. I had the lumbar puncture which came back normal and the eye clinic appointment where they disposed of my eye patch and fitted a prism on my glasses (Goodbye! Jack sparrow I now looked like an extra from Phoenix nights). I was sent home and told I would receive a telephone call when I could have the MRI.
The week that followed I only remember certain parts of now. I could barely walk, Ryan had to wash my hair in the bath for me, I couldn’t physically get out one day and he stood fully dressed and lifted me out, he was wet through but not bothered in the slightest (I priced up a full wet suit and flippers thinking it would look really good on him). I had the MRI one evening the next week, it was around the time McDonalds had re-opened for drive through and my friend who drove me for the scan took us there after, but as much as I’d missed it I just couldn’t eat that beautiful cheeseburger with gherkins and red sauce!! (ALARM BELLS starting to ring louder!!! Now I knew something was seriously wrong!)
I received a letter for a follow-up appointment at the eye clinic in a weeks time. That morning was the worst I had felt in the last 2 months, I couldn’t even get dressed. Ryan dressed me and I took his hand in both of mine and said to him “I know there is something seriously wrong with me, I feel like I am actually dying, please remember that I love you, I’m not even sure if I will make it home today, will you make sure my son is OK” and with that I started to cry and couldn’t stop. My mum came to pick me up for the appointment and I can still remember her face when she walked in and saw me, she also knew something was really wrong.
Mums have this amazing ability to know things about you before you even know. For example 9 years ago I went to her house for tea one night and she said to me you look different and stared at me for about 10 whole minutes. Around a week later I found out I was pregnant with my son!!! Strange extrasensory psychic intelligence at its best!!
Slumped in a wheelchair I was wheeled round to the eye scanning machines and followed the instructions the best I could, I just wanted to lay on the floor and didn’t care who or what walked over me, I was having a real life Ian Beale moment… “I just had nothing left.” The eye clinic door opened and a Consultant interrupted the woman who was taking my scan photos he asked her if she had finished, she seemed annoyed at him that he had just walked in and she replied with “No I have not” he said “Well I want this lady in my office as a matter of urgency” and before I could say Phil Mitchell I was whisked away, I felt so ill that I wasn’t worried, anxious or wondering what the hell was going off.
In his office he said to me “You work in the medical profession don’t you?” and I gave what was passable as a nod with that he turned his computer monitor around to show me a grey and white image of a brain which I knew must be my MRI. I have to admit I didn’t really understand what he was showing me other than an image, I think he could tell this and said to me “You see this white part” and he circled the whole top section of the image, he might as well have just run his fingers around the whole edge of the screen, the whole image displayed was a glowing piercing white, I again nodded and he said “This is inflammation, all of this is inflammation and you are extremely unwell” My first thought was well at least that explains how I’ve been feeling. He stared at me in the wheelchair and shook his head in disbelief, he said “I do not know how you are sat upright in that chair” I said ” Neither do I, I feel like I’m dying” and I began to cry again.
He said to me “You won’t be going home, you will be going upstairs!” Jesus Doc! Don’t sit on the fence for a bit will you? Ok right well at least I would get to see our hamster again that died 3 years ago! Maybe the guinea pig from when I was 9 too?… He broke into my vision of the afterlife saying “Today, I mean you won’t be going home today”, ah that made more sense. The next thing I know is my mum is sat at the side of me and I hear the Consultant mention the words ‘it does indicate Multiple Sclerosis’ I looked at my mum and she began to cry, as if I wasn’t dehydrated enough already I started to cry some more, the health assistant also started to cry, thank god the Consultant didn’t crumble or we would seriously have been up shit creek with absolutely no paddle. The consultant was frantically on the phone to numerous different people and asked me if I understood what was happening, I understood loud and clear (I think).
Over the following week I stayed on the Stroke unit having intravenous steroids, anti-sickness meds and fluids, too many blood tests to remember I was a trainee phlebotomist’s dream and learning how to walk again with the help of Physiotherapists, well that was a strange feeling but have to admit quite fun at times, I felt a little like royalty having someone either side of me as I went around and around and around the same spot on the same ward. After I’d mastered it though I was walking around like Teresa May making her entrance on stage at the Tory party conference in 2018!
I wasn’t allowed any visitors due to the Coronavirus, but looking back now that wasn’t such a bad thing, because having people that love and care about you asking how you are feeling and what your thoughts are when you honestly don’t have a clue yourself would have been more upsetting, it gave me more time to comprehend what had been said and that no official diagnosis had been made as yet…yet.
One person in the whole time I was in hospital really stood out to me and after telling some close people about her and the strange story behind it they have named her as my Guardian Angel, now I know I was having a lot of brain issues at the time, but she was certainly alive and not dead so maybe a living guardian angel? But that’s a story for another time…..
Read the follow on Blog named Guardian Angel in the main menu to find out what happened next…
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