Wilson's Disease

It's been a quiet few months on the blogging front but there's been a lot going on behind the scenes. I mentioned before that I was being tested for horrible things. Last October my neurologist brought up the possibility of Wilson's Disease. WD is a genetic condition where the body can't get rid of copper and you end up with a toxic amount in your body. If untreated it is usually fatal before 40 but if found can be easily treated with medication.

So in October I did the copper test and anxiously awaited the results. I was told it would be mid November before the results came back but even by my next neurology appointment in December we still didn't have them. Then on 4th January I got a letter to say my copper is indeed high. It was and still is an extremely stressful time.

Although the neurologist referred me on we couldn't wait another six weeks so we booked to see a private consultant. WD is treated by a gastroenterologist. We saw him last week and his view was that the copper was only slightly high so probably wasn't WD but obviously can't say for certain. He wants to start the testing again and see what results we get next time.

In the meantime things have really gone downhill and I'm back in the wheelchair full time again. I'm falling daily and couldn't get upstairs last night. Everyone is looking after me but it is incredibly frustrating not to be able to do normal things.

Tomorrow is a trip to the cardiologist and then Wednesday is a liver scan. Don't say i don't get out! It's hard to be my usual cheery self when all this stress is hanging over me but normal service will be resumed soon. I'll get there.

Holiday to Stoke

It's been a rather eventful couple of weeks here. I posted on Facebook that I made it to school without my wheelchair one day. Oh how the universe laughed at me. It's all been downhill ever since. My seizures have been terrible the past two weeks. 

On Tuesday I had the mother of all seizures. The full blown body shaking, eyes rolling, everything you imagine epilepsy to be. Being me though I didn't just have one, i had several all in a row. We weren't counting but we estimated 10-15 seizures with about 30 seconds in between each one. Emily said i looked like I was dancing and James said I looked like I was possessed! So we took a trip to Stoke A&E which was a lovely evening out. I highly recommend it. After a four hour wait I was pretty much back to normal so I got to come home. I start new medication very shortly so there wasn't much else they could do.

It's really shaken me up physically and mentally. Physically it felt like I'd been on a spin cycle in a washing machine and my brain was rattling around. Mentally I'm scared it will happen again. It wasn't a pleasant experience and not one I'd want outside of the house. For now I'm taking it very easy and getting my strength back. They took ten vials of blood from me this morning at hospital which I think is a personal record!

Is it 2017 yet??

An Update

I haven't blogged for a while due to feeling a little uninspired. I'm waiting for some scary test results to come back so that has been on my mind a lot.

I've also managed to give myself whiplash from a nasty exorcist style head spin. We had Emily's birthday party on Saturday and my legs have been wobbling ever since. I've been asleep for days to try and recover. It's not too dissimilar to having a hangover but not as much fun.

So all in all things are going well!

I had two splats at Emily's party, no shout outs though thank goodness. They seem to have gone now although I occasionally shout "no" at people. I'm due to start new medication very shortly depending on these test results. Either way I will be starting something new. The neurologist believes there may be something more than "just" epilepsy going on. We just have to try and get to the bottom of it.

37

I don't know about you but I'm feeling 37. Not so catchy but it's my birthday! I never thought about 37 being a milestone but after this year it feels like an achievement. Bring on the Prosecco and smarties because I'm celebrating!

According to my presents I am a Poldark loving, inhaler losing, mermaid. Sums me up pretty well! I've had a great few days with family and friends and more to come this week.

37 is going to be a great year...I can feel it in my achy bones!

Maximum Dose

So I'm officially on the maximum dose of my medication now. All 3000mg of it. I had several falls at the weekend but I've had a bug and antibiotics so I'm putting it down to that. I'm still optimistic that the maximum dose will work and I'll be back to a fully functioning human being soon. I should be back to the neurologist soon but their idea of soon and my idea of soon are quite different. I think they work in dog years. I've walked to school with the wheelchair a couple of times so that's nothing short of a miracle.

Emily is busy planning her spectacular birthday party which is a Cinderella and My Little Pony mash up. She's invited most of the school and if you didn't see it earlier she has decided to put a lock of her own hair into each party bag. Genius! She has list of invitees, a reserves list and a list of those not invited. On the not invited list is anyone else called Emily. Apparently she is the only Emily allowed at Emily's birthday party!

Speaking of birthdays the celebrations of my birth are beginning this weekend with a nice meal out on Sunday. Basically we are celebrating the miracle of me still being alive and making it through 12 years of untreated epilepsy. That's if I make it until Monday, better not speak too soon. Don't want to jinx it!

October is a bit crap

I see so many posts about how wonderful October is and how lovely Autumn can be. This is my post to tell you how crap October is...

Bugs, germs and anything else to make you feel like crap - thanks school!

I get a year older, more wrinkles and more grey hairs

Anniversary of Charlie's death - nuff said

It's hot, It's cold, It's warm, It's freezing - let's wear our entire wardrobe in one day

I feel the need to start buying Christmas presents

I forget I've already started buying Christmas presents until I hide the new lot

We have to pay out for two birthday meals because annoyingly me and Chris were born two weeks apart

I have to put up with constant mocking that I'm older for two weeks - if you had arrived on time Christopher we wouldn't have this problem!!

Leaves fall off the trees and make me sad

My flowers pretend to die and make me sad

It goes dark early and that makes me sad

I feel the need to redecorate - no I don't know why either

It's cold, dark and miserable for NO REASON

Did I mention I'm a summer person?

Christmas is quite good too

So let's skip October...deal??

Birthday Cards

As I am writing a birthday card I thought this was a good time to explain why you may not get one and why. It's a long process for me to get a card in the post. Here's a brief run down of what has to happen...

I have to remember it is your birthday
I have to remember to ask Chris to buy you a card next time he is at the shop
Chris has to remember to buy the card next time he is at the shop
Chris has to remember to tell me he has bought the card
I have to remember he has bought a card and where I have put it
I have to remember to write it
I have to remember to give it to him to post
He has to remember to take it and post it

As you can see there are many steps of remembering and frequently I fail to do so. If by some miracle you do receive a card from me then I would frame it and bring out each year just in case! Please don't be offended if you don't get one as somewhere the process has failed. I have many cards that have been bought and not sent or ones that have been sent to the wrong people! My Dad was thrilled to get a "New Baby" card at the age of 65! Just know that somewhere in my brain I did at some point remember it was your birthday so Happy Birthday!