Fresh Start

So, I haven't been on here for a while. There are many a reason as to why but, to keep it simple, I was taking some downtime whilst trying to sort my life out! 

I come with news. I've started COLLEGE. Yep, little me has gone and signed myself up for a two year course studying Health and Social Care. If you were to ask my parents what they assumed I would be once I grew up I would place a bet on them saying "nurse, or something in healthcare." For as long as I can remember anything medical related I have found an draw towards. So far in life I have followed my other passion which is the arts and have already gained myself an honours degree in Photographic Art. Then along came Epilepsy and completely changed the course of my life. For a while I thought it was for the worse but over the past five years I have grown to understand that despite all the negativity's, having Epilepsy does come with some positives. One being that is has re-ignited and strengthened my passion for all things Health and patient Care. That along with volunteering for St John Ambulance Cymru and all the experience and fire that has rewarded me with, I find myself officially studying towards my future once again. 

I've been on the course for nearly two weeks now, meeting new people, making friends and settling in to find that I love it. The idea of having a purpose, routine and an aim in life, leaves me filled with eagerness and anticipation for the future again. Something I had quietly lost over the past year or so. Epilepsy has very nearly robbed me of my life more than once now and I nearly let that ruin my positive outlook on life. Now, I can happily say that whilst seizures still rudely interrupt my life whenever they feel like it, emotionally I'm in a much stronger place. 

Now lets get practical... of course I'm having to be careful not to wear myself out whilst studying, volunteering and living life. Everyone studying my course have been split into three classes with differing timetables. The college were kind enough to put me on the timetable that means I have a day off between every day I have in. So my class days are Monday, Wednesday and Friday. Perfect. This means I have time to rest, and take my time to catch up on notes etc if I miss anything for any reason. I absolutely cannot fault how my college have treated me in terms of having uncontrolled Epilepsy. The very first day I was greeted and taken to fill out a Care Plan in case of seizure whilst on Campus and shown around the buildings to familiarise myself and meet various people I will likely come across in the event of a seizure or other illness. This is fab as it will help a little with post-ictal confusion and I'm less likely to react to my unfamiliar surroundings and people around me when I'm not quite back "with-it". It's also great that all my tutors are healthcare professionals - could it be any more convenient? 

I'm working on another positive little project at the moment which is becoming more rewarding as the the days go by. I'll ramble on about that some other time though. I hope to get back to blogging regularly again as the benefits and brilliant experiences I have gained from this in the past have been invaluable. All in good time though, I'm living a busy life at the moment and loving it! x 

Calm before the storm

I promise to be back here soon. Life's a little hectic and I managed to fracture my elbow during a seizure whilst out alone! So I'm enjoying some down time with family and friends before I start down a new path in life this September.

I'll also reply to emails received relating to my blog soon too!

x

Recent Happenings

It's been busy over here! At the moment I'm recovering from and allergic reaction to some medicine in amongst this heatwave we're having. It's HOT. Well hot for Britain anyway and I don't do very well seizure wise in heat so I spend most of my time next to a fan trying to keep cool. 

This is just  quick update on some happenings that have been going on...

My little niece Willow turned two years old so my dad and I travelled the 200 miles down to visit them for the day. She had a lovely little party at the local fire station (her dad is a retained fireman) and with lots of her little friends. We all had a great time.

Oo we had a choir concert the other night in which I sang soprano for nearly two hours under bright, hot lights and not once did I fall off the stage! 

 I've been creating little pieces of button art to auction off in aid of Epilepsy Sucks UK. I love little crafty projects like this and as well as keeping me occupied I find it very stress relieving.  So to put it to some good use by using it as a way to raise funds for the charity makes it all the nicer. 

I also had another neurology appointment. In which my consultant watched a recent video of me having a seizure and did that thing (that really frustrates me) where by he watched the video silently whilst furiously writing down things in his notes! Off the back of the video and me giving him the list of seizure I've had since I last saw him he increased my dose of Keppra to the maximum made sure I have the nurses number to contact if I need to and that was pretty much that. I want to know what he saw in the video... he did say he would send me a report of our appointment so I'll see if it says anything in that although I doubt it will. 

I picked up a great little container to keep my various medicines in one place when I'm out and about from Medpac. It's bright orange which is great for if it needs to be grabbed out of another bag etc quickly and holds everything I need when out perfectly! 

The other day was awesome before my lovely medication reaction took hold. I've been dreaming about going to the beach for ages. My friends go quite a lot but I seem to always either be poorly, be recovering from injuries or have appointments planned etc. This time though I was free as a bird and feeling relatively human so off we went! I'd been eyeing up a new body board as well and finally got my hands on one and got to try it out on the waves. It was great! Sun, sea, sand and a great bunch of friends. 

Perfection! 

Young Epilepsy T-shirt

Check out my awesome t-shirt and not so awesome posing...!

I received a lovely package through the post a while ago and it turned out to be a gift bag from the Young Epilepsy Awards night. I was so chuffed to open it up and discover some exciting goodies in there. Folded up inside was this delight of a t-shirt. Now it's finally warm enough (just about) to wear it without a jacket! It'll be awesome to wear it especially whilst conquering mountains etc and raising awareness all along the way.

To grab one for yourself head on over to the Young Epilepsy merchandise web page where you can pick up a t-shirt and anything else you fancy including their new canvas bags. These bags are promoting their campaign Everyone Knows Someone.


Now get out there and seize the day! X

A Hospital Birthday

My birthday this year didn't exactly go to plan. This was the delightful view I was staring at as the clock struck midnight and signified me entering my 26th year on Tuesday night/Wednesday morning.

Tuesday lunch time I suffered a seizure in which I banged the back of my head pretty hard along with bruising and grazing my ribs.

Initially had no intentions on gracing the corridors of my local hospital with my presence but my body wasn't having any of that. I simply wasn't recovering at a "normal" rate. My head was banging, body aching and beyond tired but that's all normal. I saw a doctor during that afternoon for a quick check over of my injuries and for him to make a note of the fact I couldn't walk properly - I wasn't very well balanced. He did a quick check over and deemed me fine. We got back to my place and I took a nap but when I woke up again the vomiting started. Never a good sign when you've had a knock to the head. I still will do anything to avoid hospitals so rang NHS direct for advice on wether I needed to see someone again or if I could just stay home and ride it out. Unfortunately they told me to go straight to hospital to be seen. It's fair enough as you can never be too careful with a head injury - I'm just stubborn.

It took a few attempts to get an IV line in which is actually quite a good number for me especially as I was dehydrated. It also took a few different anti-sicknesses to finally stop me vomiting (lovely) I'm not 100% sure what they tried or what the final one was but it sure did burn my veins from the inside! At the time I couldn't care less though as it worked and I was finally able to keep my Epilepsy medication down. 

I'm very glad I had a friend there with me the whole time. She and her mum responded to my alarm and she didn't leave my side from then on! I was found unconscious in the middle of the kitchen floor. I think I was initially after a cup of tea!

Thankfully I didn't have any more big seizures so I was discharged during the morning and slept most of the day in my own bed. I did make it out for a lovely meal with a group of friends for my birthday and they came around to mine for a catch up and some cake after. So all in all despite a really rubbish start I had a surprisingly nice birthday! 

Now I'm just slowly getting over concussion. My head is still bruised along with my ribs but nothing long lasting so I'm ok with that and thankfully my walking is back to normal again. X 

3 days = 3 appointments

Migraines. Asthma. Epilepsy. 

This week has well and truly been taken over by medical appointments.

Monday was an appointment with my general doctor. The reason I booked it is because my migraines have kicked up a gear in frequency again with no obvious reason. My usual medicine for them (Naratriptan) isn't working as effectively as when I first started taking it to ease the pain of a migraine once it has begun. This has a knock on effect as not only does that mean I feel the full force of the migraine but as they also make me physically sick I'm at risk of not keeping my Epilepsy medicines down resulting in more seizures. The doctor I saw is new to the surgery and was really lovely. She suggested I try the medicine Rizatriptan. Not only is this medicine powerful and hopefully good at its job but it's also a dissolvable tablet that you put on your tongue as opposed to one you swallow. Which means I will be able to tolerate it even if I vomit. I'm to see how these go over the next month or so then go back and see her to either get a repeat prescription of them or try something else. She also suggested that I might have to consider using a prophylaxis medicine in the near future if things don't improve. That is something I'll have to think long and hard about as it would mean taking daily medication along with my current regime of medicines which means and increase in side effects etc. 

Tuesday I was called in the surgery to visit the nurse for a review. This is just to look over the medicines I'm on and how my illnesses are currently "behaving". We discussed various matters around Seizures, Migraines and Asthma. All was fine until she asked me to do a peak flow test. This is where they use a tube type thing to measure a persons ability to breathe out air. Very basically the reading reflects how constricted the airways are. Mine was half of the number on the lower end of the "normal" values scale. I've had Asthma for as long as I can remember but have been having a particular trouble with my lungs since an infection over this last Christmas. I was put on steroids for a while to help me gain some half decent breathing back again and I finished them about 2 months ago. Monday afternoon though I was at the scene of a house fire (I'm a drama magnet.. I can't leave the house without some emergency or other happening - all residents where fine thankfully part of the house were destroyed though!) anyway that meant cycling/running to the scene very quickly up hill and then standing in smoke checking everyone was ok. Needless to say my lungs were on fire and I desperately needed my inhaler. Anyway with the peak flow reading as low as the one I gave there was no choice but to put me back on steroids again for the time being. 

Today I was at the hospital for an appointment in Urology. This one is a little embarrassing to write about to be honest but hey it's a part of me so...

Since being in ITU (intensive care unit) last year I have had a problem with my waterworks down below. Doctors are unsure as to wether my problem is due to nerve damage or possibly a side effect of medicine. Long story short whilst in ITU I was obviously catheterised for days and also had pretty severe seizures during the time. A few days after I was back on a regular medical ward I started experiencing horrible pain in my abdomen and had to have the catheter out and replaced a few times due to blockages. Eventually I had a scan of my bladder and swelling was detected. Now, how it was caused is a mystery but we're thinking either wrong insertion or seizing with it in has dislodged it and caused damage. Since then I just simply cannot pee properly! It's like I can't register when I'm too full and need to empty my bladder. I have to make myself go to the toilet and try to pee but for some reason my system isn't emptying anywhere near as much as I'm taking in. Skip forward months and plenty of tests and I'm now at the point where the pain from retaining so much urine is causing huge discomfort and gradual damage to my bladder and kidneys so the only option is to self-catheterise. I had a good long chat with the nurses at the clinic and they carefully explained how the catheters work and what I have to do. I had to give it go at the hospital to make sure I know how to use them properly and empty my bladder before I left. I was holding over a litre of fluid when they scanned me! After my 'practice' session I was successful and when they rescanned me had next to nothing in there thankfully which in turn made me far less bloated and much more comfortable. The catheters are surprisingly discreet so I can carry some around in my bag etc which is good. Plus they are delivered to me door, whoop! 

Just another chapter in the life of Jade X

Post-Seizure Fuel

Check this out for a delicious pile of colour! 

This was my lunch the other day, a post-seizure day. I had a massive craving for cheese and in particular the salty taste of Halloumi. So I popped out to the shop to grab a pack of Halloumi and decided to whip up a salad from ingredients already sitting in my cupboard and fridge. I was going away for a few days so needed to use up some fresh food anyway. 

In the end there was quite a list of foods that made it onto my plate:

• Grilled Halloumi
• Fresh uncooked Spinach
• Cucumber
• Cherry Tomatoes
• Beetroot
• Sprinkling of seeds
• Drizzle of Olive Oil
• Pinch of Salt+Pepper

The result was scrumptious and energising! I've just back got from a long and tiring weekend so I thought I'd repeat it and make it again to eat today to make up for lack of energy. Yum. X