I've decided to do some more writing on my blog than I did usually! I don't want to leave a five month gap like I did last time!
I'm still job hunting - I'm having real trouble at the minute. It's an issue finding a paid job working with children that's so local when my health is still so (what's the word?) unpredictable at the moment. The job interviews that I have had I didn't get because I didn't have the experience. It knocked my confidence a little bit, but it doesn't stop me searching.
I'm actually not at the charity shop at the moment. Someone actually burnt it down, so I have to wait until it's rebuilt and ready for me to start working there again. I can't exactly work in a place that still has damage from a fire! It's really annoying (and kind of boring), but we'll get there eventually!
Thursday, 10 November 2016
Wednesday, 9 November 2016
It's been months!
I haven't updated this blog for five months now! So I've decided to start it up again. So much has happened in the past few months that I want to write about and I really want to start talking again (even though a lot of people say I talk a bit too much!).
This has been an extremely eventful 2016. I feel like it's flown by - I can't believe it's nearly Christmas already! It hasn't been the best year of my life. In around July of this year, my Grandad was taken into hospital because he wasn't very well. This resulted in lots of hospital visits over the next few weeks.
Then in August, we received the news that Grandad had died in hospital. We made sure that we gave him a good send-off at his funeral though. He was very popular, so he deserved that.
On a lighter note, my VNS implant is working well! My seizures have decreased quite a bit, so although we are still tweaking the levels a bit on my implant, I think we are getting there. Like I have said numerous times before, if you think you can do something, and if you believe that you will do it, you WILL do it!
We went to Blackpool for a little holiday this year. That was a holiday that the four of us really needed. I've never been to Blackpool before, so it was an amazing thing for us all to do together! We walked around on the Comedy Carpet, and we went to Madame Tussauds, plus I managed to do the thing that I have always wanted to do! I danced at Blackpool Tower Ballroom! It was a Christmas present from Mum and Dad, and it was an amazing experience!
In September, we went on another holiday to Lanzarote, and it was great fun! It was a nice opportunity to have a relax and try to forget about all of our troubles. We rode a camel (which was extremely wobbly), but it was brilliant! However, it didn't all run smoothly. When we were out for a walk, I had one of my falls and I fell in some dirt! But look on the bright side, at least it wasn't the road!
It was my auntie and uncle's wedding anniversary and we had a big family party in Leicester! As usual, it was extremely noisy! I always love our family parties - we all have a massive dance together and we all have a really big laugh together!
So I haven't had the best year in the world, but we've had some great times too! We've had three great holidays, plus we got to see the family, AND we're sorting my VNS implant! So I am determined that 2017 will be better! In fact, I will make sure that it's better!
This has been an extremely eventful 2016. I feel like it's flown by - I can't believe it's nearly Christmas already! It hasn't been the best year of my life. In around July of this year, my Grandad was taken into hospital because he wasn't very well. This resulted in lots of hospital visits over the next few weeks.
Then in August, we received the news that Grandad had died in hospital. We made sure that we gave him a good send-off at his funeral though. He was very popular, so he deserved that.
On a lighter note, my VNS implant is working well! My seizures have decreased quite a bit, so although we are still tweaking the levels a bit on my implant, I think we are getting there. Like I have said numerous times before, if you think you can do something, and if you believe that you will do it, you WILL do it!
We went to Blackpool for a little holiday this year. That was a holiday that the four of us really needed. I've never been to Blackpool before, so it was an amazing thing for us all to do together! We walked around on the Comedy Carpet, and we went to Madame Tussauds, plus I managed to do the thing that I have always wanted to do! I danced at Blackpool Tower Ballroom! It was a Christmas present from Mum and Dad, and it was an amazing experience!
In September, we went on another holiday to Lanzarote, and it was great fun! It was a nice opportunity to have a relax and try to forget about all of our troubles. We rode a camel (which was extremely wobbly), but it was brilliant! However, it didn't all run smoothly. When we were out for a walk, I had one of my falls and I fell in some dirt! But look on the bright side, at least it wasn't the road!
It was my auntie and uncle's wedding anniversary and we had a big family party in Leicester! As usual, it was extremely noisy! I always love our family parties - we all have a massive dance together and we all have a really big laugh together!
So I haven't had the best year in the world, but we've had some great times too! We've had three great holidays, plus we got to see the family, AND we're sorting my VNS implant! So I am determined that 2017 will be better! In fact, I will make sure that it's better!
Grandad with me as a baby!
Me and Emma with Grandad on his birthday!
Lanzarote in April!
Me and Emma dancing at Blackpool Tower Ballroom!
With Mo Farah at Madame Tussauds!
At the family party!
Lanzarote in September!
Saturday, 11 June 2016
Increasing my VNS!
Well I've had my VNS turned up!
We went to see my epilepsy nurse at the hospital to see what level we should put my VNS up to. We looked at my seizure diary to see at the number of seizures that I had and then my nurse looked at the amount of seizure activity that I had in my brain. We used the weeks that I was away and the seizure diary that I had so she could see if she could match where we had written about my seizures and where my VNS had picked up the seizure activity. There was one point where I was out for a walk to the shops with Emma and I thought that I was going to go into an absence, and I seemed to feel my VNS "kick in", and my absence was cut short! It was a weird feeling, and it will be something to get used to, but it was nice to have a shorter absence. Emma managed to take the exact time that I had the seizure so I could write it in my seizure diary so that was useful!
It turned out that we managed to spot 49 signs of activity and the signs that we spotted were able to be matched up to the times on the computer! We told my epilepsy nurse about the absence that I had that I felt was cut short by the VNS and how Emma took the exact time and she looked it up on the computer to see if the VNS managed to pick up the same time that Emma said. To our surprise, she managed to find exactly the same time on the computer! She also said that it said that I used my VNS magnet a lot which is strange because I hadn't used it at all, but then we realised that I might have used it when I was showing my managers at work how to use the magnet if I go into a seizure!
She used a type of wand that she told me to place over the generator in my chest that she linked up to a handheld computer so she could adjust the settings in my VNS. She then changed the settings to a level of 0.5. This may not seem like much, but I could definitely feel it! Sometimes, I felt as if I was being continuously punched in the throat and I kept on coughing. At some points, I had issues with shortness of breath as well. This also made me panic even more which made my breathing even more difficult, so I have been having a few issues! But over the past few days, I've been getting used to it, which means that I haven't been feeling as much pain in my throat any more. I was telling my dance teacher about my coughing, and she said that the coughing may be difficult, but she's sure that it would be easier to cope with that absences and tonic-clonic seizures! And I have to say, she has a point!
I'm feeling a bit better since my increase now, and I just feel the occasional lump in my throat and the need to cough, but on the bright side, I have barely been having any absences and my tonic-clonic seizures are a lot better. This shows that the VNS is definitely having a positive effect!
We went to see my epilepsy nurse at the hospital to see what level we should put my VNS up to. We looked at my seizure diary to see at the number of seizures that I had and then my nurse looked at the amount of seizure activity that I had in my brain. We used the weeks that I was away and the seizure diary that I had so she could see if she could match where we had written about my seizures and where my VNS had picked up the seizure activity. There was one point where I was out for a walk to the shops with Emma and I thought that I was going to go into an absence, and I seemed to feel my VNS "kick in", and my absence was cut short! It was a weird feeling, and it will be something to get used to, but it was nice to have a shorter absence. Emma managed to take the exact time that I had the seizure so I could write it in my seizure diary so that was useful!
It turned out that we managed to spot 49 signs of activity and the signs that we spotted were able to be matched up to the times on the computer! We told my epilepsy nurse about the absence that I had that I felt was cut short by the VNS and how Emma took the exact time and she looked it up on the computer to see if the VNS managed to pick up the same time that Emma said. To our surprise, she managed to find exactly the same time on the computer! She also said that it said that I used my VNS magnet a lot which is strange because I hadn't used it at all, but then we realised that I might have used it when I was showing my managers at work how to use the magnet if I go into a seizure!
She used a type of wand that she told me to place over the generator in my chest that she linked up to a handheld computer so she could adjust the settings in my VNS. She then changed the settings to a level of 0.5. This may not seem like much, but I could definitely feel it! Sometimes, I felt as if I was being continuously punched in the throat and I kept on coughing. At some points, I had issues with shortness of breath as well. This also made me panic even more which made my breathing even more difficult, so I have been having a few issues! But over the past few days, I've been getting used to it, which means that I haven't been feeling as much pain in my throat any more. I was telling my dance teacher about my coughing, and she said that the coughing may be difficult, but she's sure that it would be easier to cope with that absences and tonic-clonic seizures! And I have to say, she has a point!
I'm feeling a bit better since my increase now, and I just feel the occasional lump in my throat and the need to cough, but on the bright side, I have barely been having any absences and my tonic-clonic seizures are a lot better. This shows that the VNS is definitely having a positive effect!
Friday, 27 May 2016
Turning on the VNS!
I went to the hospital to get my VNS turned on and the clips taken out today! In the room there were two epilepsy nurses and one epilepsy nurse took out the clips and then they turned it on. It has made me feel a little bit nauseous and it's made me cough a bit, but I'm sure after a while I will get used to it.
My surgeon has left the scar from the VNS implant so you can barely see it, so we are all very excited about it! We are going to see my epilepsy nurse to adjust the settings every two weeks for six months until we get the right setting, but we are sure that we will get it right.
We have been told to keep a seizure diary so we know what setting to put the VNS at. This involves information such as when a seizure is, the type of seizure it is, and how long it lasts for. We're very excited about when the VNS implant and we can't wait to see how well it works!
My surgeon has left the scar from the VNS implant so you can barely see it, so we are all very excited about it! We are going to see my epilepsy nurse to adjust the settings every two weeks for six months until we get the right setting, but we are sure that we will get it right.
We have been told to keep a seizure diary so we know what setting to put the VNS at. This involves information such as when a seizure is, the type of seizure it is, and how long it lasts for. We're very excited about when the VNS implant and we can't wait to see how well it works!
Monday, 23 May 2016
Bubble Wrap Suit!
I've gotten the chance to write a post for my blog today!
A couple of days ago I went to my cousin's 21st birthday party! This was nice because most of my family live in Leicester and the times that I get to see them tend to be at family parties. However, it wasn't all plain sailing because I had a tonic-clonic seizure beforehand and we had to turn up a little later.
But I knew I would still go I though - a seizure wasn't going to get in the way of my cousin's birthday party that easily! Remember when I had a seizure on Emma's birthday in Lanzarote and I still refused to stay in the villa and wanted to go out with the family? I'd choose my family over my seizures at any time!
A couple of days ago I went to my cousin's 21st birthday party! This was nice because most of my family live in Leicester and the times that I get to see them tend to be at family parties. However, it wasn't all plain sailing because I had a tonic-clonic seizure beforehand and we had to turn up a little later.
But I knew I would still go I though - a seizure wasn't going to get in the way of my cousin's birthday party that easily! Remember when I had a seizure on Emma's birthday in Lanzarote and I still refused to stay in the villa and wanted to go out with the family? I'd choose my family over my seizures at any time!
Our family!
When I got to the party though, I was greeted with a present of a bubble wrap suit by another one of my other cousins (I have a lot of cousins)! Now that was the last thing that I was expecting! But then again, I was sharing pictures of people in bubble wrap suits saying how useful having one would be on Facebook so maybe my cousin saw that! But the first thing I did was take a picture of myself in the bubble wrap suit and put it on Facebook. I think I look cool!
Me in my bubble wrap suit!
Friday, 20 May 2016
The Operation's Over!
The operation is finally over! I'm so glad that we don't have to think about the operation any more and we can just carry on with our lives.
Before they put me under anaesthetic, there was a bit of a debate about whether I was going to be tested to see if I am allergic to penicillin or not. Our family always assumed that I am, because the rest of our family is allergic. I am guessing that I'm allergic, because there's no one telling us anything different!
Because I wasn't allowed to drink anything after six o'clock in the morning, the person needing to get some blood from me really struggled to find a vein when she wanted to get some blood. This meant that she decided to leave it to the surgeon to get some blood from me. This is all very well, but obviously the surgeon seemed to struggle with getting blood from me, because of the number of bruises I have on my arm and hand! I also woke up to find blood over my hand and two cannulas in me, one in my hand and one in my foot!
Do you like my stockings and my socks? I'm dressed in Christmas colours!
I was a bit nervous when it came to going under general anaesthetic, but in the end, it was quite a weird sensation! One second it was eight o'clock in the morning and they were discussing whether they should test me for whether I am allergic for penicillin or not, the next second, it was mid-afternoon, and I was waking up with a nurse next to me saying,
"You've just finished your operation."
It was over so quickly I felt like saying to him
"You haven't finished it. I was only sat there before my operation a minute ago."
In the end, I just said,
"I feel a bit woozy..."
At one point, I thought I was going to stay in hospital for longer than one night though. When I was sat in bed once, a surgeon from my operation came to me and said that they were going to look at my discharge papers and see if they would have to keep me for one or two nights! I was seriously hoping not because I was having a horrible night's sleep!
It took me a while to sleep off the anaesthetic!
I was hoping that I would go home as soon as possible because I felt extremely tired and the nurses kept on waking me up to take my blood pressure and I didn't really appreciate that! But I'm very glad that I'm home now. Emma and Mum were the ones who came to pick me up and took the opportunity to send me a selfie of them both outside the hospital!
Mum and Emma outside the hospital!
My surgeon made two incisions - one on the left hand side of my chest, and one on my neck. Electrical impulses will then be sent from the generator in my chest wall into the vagus nerve in my neck and then into my brain.
The one on my neck!
15 staples down the left side of my chest!
We're going to see my epilepsy nurse next Thursday so we can remove the staples that were used in my operation and she is going to then turn on the VNS device. She is going to use a type of staple remover to take off the staples and then we are going to have appointments every two weeks for six months while we tweak the settings!
It's a slow process but I'm very excited!
Monday, 16 May 2016
1 day to go!!!
It's tomorrow! I never thought the past few days would go by so quickly, but my operation is nearly here!
I thought that today I would be more nervous than I was yesterday, but for some reason, I was a lot calmer. I don't know whether it was because I got all of my nerves out of my system yesterday, but I seemed a lot better today.
My surgeon said that I needed to be as clean as possible ready for my operation, so I needed to have a wash for that and Mum even changed my sheets as well! When she said that she was going to do that, I couldn't help but wonder whether that was going a bit too far! My surgeon also said that I needed to have a last meal before midnight before my operation and nothing else between then and before my operation, so I'm hoping I don't get hungry!
I am wondering whether deep down, I am a little nervous for my operation, because earlier I had a tonic-clonic seizure and I have those sometimes when I am nervous. I'm trying not to nod my head because my hurts whenever I nod it as I threw it forwards during my seizure!
Of course, I probably won't be updating my blog tomorrow because I'll be getting up at 6 o'clock to go straight to the hospital (which I'm not too amused about because I'm not a morning person!) and I'm staying overnight, but I will update as soon as possible after my implant. There is a lot of nervous excitement in our household at the moment!
I thought that today I would be more nervous than I was yesterday, but for some reason, I was a lot calmer. I don't know whether it was because I got all of my nerves out of my system yesterday, but I seemed a lot better today.
My surgeon said that I needed to be as clean as possible ready for my operation, so I needed to have a wash for that and Mum even changed my sheets as well! When she said that she was going to do that, I couldn't help but wonder whether that was going a bit too far! My surgeon also said that I needed to have a last meal before midnight before my operation and nothing else between then and before my operation, so I'm hoping I don't get hungry!
I am wondering whether deep down, I am a little nervous for my operation, because earlier I had a tonic-clonic seizure and I have those sometimes when I am nervous. I'm trying not to nod my head because my hurts whenever I nod it as I threw it forwards during my seizure!
Of course, I probably won't be updating my blog tomorrow because I'll be getting up at 6 o'clock to go straight to the hospital (which I'm not too amused about because I'm not a morning person!) and I'm staying overnight, but I will update as soon as possible after my implant. There is a lot of nervous excitement in our household at the moment!
Sunday, 15 May 2016
2 days to go!
Two days to go until my VNS implant! Now that I can officially say that I am having my implant the day after tomorrow, it has suddenly become more real.
Because I have more absences when I'm stressed and nervous and I am getting a bit nervous about my operation, I thought that I would have more absences, but for some reason over the past couple of days I haven't had any absences! This was the last thing I expected!
My feelings about my operation are coming in waves. Sometimes I get pretty nervous, which was what I expected to be honest. I knew that I'd probably have a feeling of nervous excitement, so I wasn't really surprised when I felt this way. When I woke up this morning, my VNS implant was the first thing that I thought about which, again, wasn't really a great shock to me. I reckon when I wake up tomorrow, it will be on my mind a bit more.
I think I am feeling nervous because I have never been under general anaesthetic before, and as much as Mum and Dad have described that feeling to me, I still continue to wonder what the feeling is like. I guess I won't know until I'll go under anaesthetic. I know it will be fine though - I've always been a worrier!
I'll update tomorrow when it's ONE day until I go into hospital! My feelings will probably be mixed, but I know that that's natural! I went to a social group of people with epilepsy so I could chat to them once (They were were a nice lot, but let's just say I'm not going back there!), and I met someone who had a VNS implant. He doesn't even need to use the magnet he uses to make his implant work any more because his implant works so well!
I feel a bit worried sometimes, and I know that it's normal to worry, but I also need to think about what the benefits are! It may work, but it may not work - you don't know if something will work until you try it!
Because I have more absences when I'm stressed and nervous and I am getting a bit nervous about my operation, I thought that I would have more absences, but for some reason over the past couple of days I haven't had any absences! This was the last thing I expected!
My feelings about my operation are coming in waves. Sometimes I get pretty nervous, which was what I expected to be honest. I knew that I'd probably have a feeling of nervous excitement, so I wasn't really surprised when I felt this way. When I woke up this morning, my VNS implant was the first thing that I thought about which, again, wasn't really a great shock to me. I reckon when I wake up tomorrow, it will be on my mind a bit more.
I think I am feeling nervous because I have never been under general anaesthetic before, and as much as Mum and Dad have described that feeling to me, I still continue to wonder what the feeling is like. I guess I won't know until I'll go under anaesthetic. I know it will be fine though - I've always been a worrier!
I'll update tomorrow when it's ONE day until I go into hospital! My feelings will probably be mixed, but I know that that's natural! I went to a social group of people with epilepsy so I could chat to them once (They were were a nice lot, but let's just say I'm not going back there!), and I met someone who had a VNS implant. He doesn't even need to use the magnet he uses to make his implant work any more because his implant works so well!
I feel a bit worried sometimes, and I know that it's normal to worry, but I also need to think about what the benefits are! It may work, but it may not work - you don't know if something will work until you try it!
Saturday, 14 May 2016
3 days to go!
It's three days until my VNS (Vagus Nerve Stimulator) implant and the days until my operation seems to be going by quicker and quicker! I think when tomorrow comes, I will start to think about it more and more! One thing I did discover today is that I will be having my operation on what will be Epilepsy Awareness Week in the United Kingdom!
The disadvantage of having my VNS implant on the 17th May is that it's my cousin's 21st birthday party four days afterwards and my surgeon said at my pre-op that I won't be able to dance as much as I usually do at her party! I was chatting to my cousin yesterday and she said that maybe she could get me a chair so I could sit and join in with the dancing! Apparently, I can join in with the dancing, but I can't wave my arms around. I've agreed to that, but dancing without waving your arms in the air is easier said than done!
I've been given a couple of weeks off work so I can recover, but when I go back to the shop I'm not allowed to do any heavy lifting. So I guess that means that I will be sticking to the till and I won't be carrying clothes around the shop and lifting lots of books on to the bookshelves!
I'll continue updating over the next few days ready for the VNS implant because things will be officially changing here!
The disadvantage of having my VNS implant on the 17th May is that it's my cousin's 21st birthday party four days afterwards and my surgeon said at my pre-op that I won't be able to dance as much as I usually do at her party! I was chatting to my cousin yesterday and she said that maybe she could get me a chair so I could sit and join in with the dancing! Apparently, I can join in with the dancing, but I can't wave my arms around. I've agreed to that, but dancing without waving your arms in the air is easier said than done!
I've been given a couple of weeks off work so I can recover, but when I go back to the shop I'm not allowed to do any heavy lifting. So I guess that means that I will be sticking to the till and I won't be carrying clothes around the shop and lifting lots of books on to the bookshelves!
I'll continue updating over the next few days ready for the VNS implant because things will be officially changing here!
Friday, 13 May 2016
The News and my pre-op!
Hello!
It's been a few months, but I have finally gotten back to writing my blog again!
My family have decided that it's better to choose a holiday destination where it's a little bit cooler and also we are able to cope with the heat. We decided that Lanzarote was an excellent destination and also it was nicer to be able to stay in the sun for a bit longer. I even managed to celebrate the fact that I didn't have any seizures by having a seizure on the last night (on Emma's 24th birthday!). My family suggested getting a takeaway instead of going out to eat, but no way was I going to let the family do that just because I had a seizure! We were definitely going out both for dinner AND cocktails! We were going to celebrate Emma's birthday and we were going to do it properly.
We got back home to the usual pile of mail that we expected because we were away, but what we didn't expect was for me to get a letter. I was just sat there minding my own business, waiting for the football to start, and then Dad walked into the lounge and passed an envelope to me.
From the layout of the font on the envelope, I recognised that the letter was from the hospital (much to my confusion). As I opened it, I saw three letters which just said "VNS". But as I continued to read, what I didn't expect was to receive the news that my operation would be held on the 17th May with a pre-op on the 9th May. I didn't expect it to be so soon, especially because:
1) I was told at my last appointment by my surgeon that it was a long waiting list.
2) The operation would probably be in around July time.
3) The date I was reading the letter was on the 1st May.
So. That was quite big news.
But, as I came to terms with it, I went to my pre-op with my parents to talk to a few people and meet the other surgeon who would be doing my VNS implant. But, all in all, the day was all sorted and now it's just a case of counting the days until my operation! My operation is in four days and it's at seven o'clock in the morning! I'm allowed to have something to eat at midnight and then I can't eat anything else until after the operation!
So, I will definitely update more now because of my VNS implant. So here we go!!!
It's been a few months, but I have finally gotten back to writing my blog again!
My family have decided that it's better to choose a holiday destination where it's a little bit cooler and also we are able to cope with the heat. We decided that Lanzarote was an excellent destination and also it was nicer to be able to stay in the sun for a bit longer. I even managed to celebrate the fact that I didn't have any seizures by having a seizure on the last night (on Emma's 24th birthday!). My family suggested getting a takeaway instead of going out to eat, but no way was I going to let the family do that just because I had a seizure! We were definitely going out both for dinner AND cocktails! We were going to celebrate Emma's birthday and we were going to do it properly.
We got back home to the usual pile of mail that we expected because we were away, but what we didn't expect was for me to get a letter. I was just sat there minding my own business, waiting for the football to start, and then Dad walked into the lounge and passed an envelope to me.
From the layout of the font on the envelope, I recognised that the letter was from the hospital (much to my confusion). As I opened it, I saw three letters which just said "VNS". But as I continued to read, what I didn't expect was to receive the news that my operation would be held on the 17th May with a pre-op on the 9th May. I didn't expect it to be so soon, especially because:
1) I was told at my last appointment by my surgeon that it was a long waiting list.
2) The operation would probably be in around July time.
3) The date I was reading the letter was on the 1st May.
So. That was quite big news.
But, as I came to terms with it, I went to my pre-op with my parents to talk to a few people and meet the other surgeon who would be doing my VNS implant. But, all in all, the day was all sorted and now it's just a case of counting the days until my operation! My operation is in four days and it's at seven o'clock in the morning! I'm allowed to have something to eat at midnight and then I can't eat anything else until after the operation!
So, I will definitely update more now because of my VNS implant. So here we go!!!
Friday, 15 January 2016
Happy New Year!
Happy New Year!
It is a very late message, but it is a New Year's message! Between my last blog post and this blog post, it has been both Christmas AND my 21st birthday so there is a lot to catch up on!
We really hoped that we would get through my birthday and Christmas with no seizures of any kind and I am pleased to say that we managed to sail through with no hiccups! I still haven't finished all of my chocolate!
I still can't believe at how it's all systems go now with the VNS implant, but it's very exciting!
To my relief though, I got my dancing exam results back even though I had a bad feeling about it. I got...
HIGHLY COMMENDED!!!!
It is a very late message, but it is a New Year's message! Between my last blog post and this blog post, it has been both Christmas AND my 21st birthday so there is a lot to catch up on!
We really hoped that we would get through my birthday and Christmas with no seizures of any kind and I am pleased to say that we managed to sail through with no hiccups! I still haven't finished all of my chocolate!
I still can't believe at how it's all systems go now with the VNS implant, but it's very exciting!
To my relief though, I got my dancing exam results back even though I had a bad feeling about it. I got...
HIGHLY COMMENDED!!!!
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