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A Long Journey - Louise


For me my memory & tiredness are the two main factors my Optic nerve was damaged so I have a light sensitive, sound sensitive, crowd sensitive.

The memory isn’t just forgetting things, its my actual memory, for example my cousin came home from Australia on the 4 July on the 22 September, he & his wife left to start their journey back home they don’t actually arrive home till 22 Oct, anyway we took lots of pictures which is my only way to remember it.

I know that it happened, but where as people can picture something in their mind, a certain event or a face, I can’t, that was the hardest thing not being able to picture an event that has happened, or a place & most of all people, that I still find extremely hard.

My memory also is short term, I have to write things down & do lists for most things, if you’re in a shop & see something for someone’s birthday & think must remember that, I have to write it down, the shop not just e.g.: jumper it’s the style colour price, where about I saw it in the shop, anything that will help me remember when I go back.

Tiredness is a nightmare, I sometimes can be so tired I can’t get off to sleep, then I will wake up after a few hours sleep & find I sleep late in the morning.

If I have a nap in the afternoon, this only makes sleeping in the night worse again. It’s taken me a long time to know this, on the other hand if I’m going to a night out, which doesn’t happen all that often now, but if I am, I have a nap in the afternoon and this helps recharge my batteries.

I had to stop drinking as much coffee, I only have one cup a day now, first thing in the morning. I don’t drink de-caff as I don’t like the taste. I figured one cup was okay, I was told that coffee stimulates the brain. I find things sometimes have a strange taste now.

I do drink water, but not all that much. I tend to drink Ribena, believe it or not I need the boost when I get tired. My husband can always tell, says it’s written on my face, I have some Ribena & you can see & admittedly I can feel the instant zing….

I went into hospital on the 1st November 1999 after being at work that day. I felt so cold, the cold that you can feel go right to your bones, I don’t remember getting home or telling my husband that I had pins & needles in my hands & feet, it could have been the cold, it wasn’t then I went ‘splat’ at his feet, he called the doctor it was just like I’d passed out he said, the doctor thought it was an ear infection, then I took a seizure, an ambulance was called & they had to do CPR on me in the ambulance, they then headed for the hospital that was taking emergencies that evening but on the way the medic in the back told the driver to go to Edinburgh’s Western General (thankfully) it has the best Neuro unit in the country.

I have read all these stories of people waiting a long time to see a specialist I had one out his bed & in theatre within 7 hours of arriving at the hospital.

I got a shunt clipped & sealed with platinum (so I now have scrap metal value)

They thought I wouldn’t survive & if I did they didn’t know how bad I would be would I know anybody? Would I be able to talk? Feed myself? They said 80/20, thankfully I can do all that & I like to think I have taken 80% disabled & 20% able & turned it around & improved on it a little too.

I know that it was tough on my husband Ronnie & my Dad, not knowing if I was going to survive or not & if I did what would lie in front of me/us. Ronnie told me that he would always ask other family members how they were doing, they themselves not the patients because they are the ones that need to be strong, they are the ones who have to keep it all together they know the reality of what’s happening the patient has no idea.

And I have to say that is totally right I cringe at some of the things I said to my husband in those early days (as I call them) but honestly, that wasn’t really me, it was who I was then, I do cringe, I don’t apologise.

We talk about it, its good to talk, remind ourselves what happened, in the beginning it helped me to talk about it. I don’t remember 5 weeks that I spent in hospital it made me part of it, mind you some of the things I have been told surprise me, they are out of character for me, but again it wasn’t really me.

I have been asked wouldn’t I like to get hypnotherapy to remember those 5 weeks simple answer “NO” to remember what they did! To remember lumbar punctures! Bed baths! Scans CT/MRI! Pain! Injections! – would you?

I had to go to a re-hab hospital where I learned to do things all over again, things you take for granted, getting dressed, brushing your teeth, tying your trainer laces, making a cup of coffee, most things were like riding a bike once you’re reminded it comes back to you, some things weren’t as easy so….

Then when I got discharged from the re-hab hospital a few weeks later & got a letter from work I was made redundant. 5 days later I was back in hospital with viral meningitis, the shunt then got a buddy, I got a tube in my brain which drains fluid from my brain, the brain produces too many vitamins, this is where the tiredness comes in, I never felt tiredness like this before.

It has not been easy for every 6 steps forward there have been lots more back the way, there have been lots of downs but I have learned to enjoy the good days there came a point when there were more of the good days than the bad ones & I didn’t notice it happening it sort of crept up on me.

Through the Re-hab hospital, they got me a place at college & I went to learn about computers. I did know a bit about them but not in the way I do now. It’s only been in the last 3 years that things have started to make better sense & at the beginning of this year, I made my friend a card, she’d just finished having chemo. We’d known one another for nearly 20 years at the time, it was a sort of story book she asked me to do a card for her Gran’s 90th Birthday, then something for the birth of her God-daughter, she & my husband have given me the confidence to keep going just that one step further with it, I would love to do something with this because it’s something that I really like doing, at the moment I am doing pictures for my other friends sons 21st in December, I find I am very (very) critical of myself something that I wasn’t before the Haemorrhage which really surprises me (a lot) I also have a great deal of determination now which I never processed before.

It’s a constant struggle wondering if things will go back to how they were before, but you can’t let that get to you, you don’t know what tomorrow is going to bring.

I owe a great deal to the surgeon & his team that saved me, with the help of my husband Ronnie, I have come this far. I have so much I owe them, my life for starters Ronnie for being here when I took ill & helping me through one of the darkest time’s of my life, he’s my rock.

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