Short break down of the past two days because I have written this twice so far and managed to lose it twice...damn computers! So Thursday was a complete loss, I was suffering badly from optic-neuritis and also we had been out for a few drinks on Wednesday night and I was unbelievably sick throughout the whole day (Thursday) couldn't even keep the water down, so that was rubbish. I got through it though and now I have finally decided to stay away from alcohol for a while; although it doesn’t cause me problems every time I drink it is just not worth it, because when I am sick with anything else it just makes me feel absolutely terrible.
On Friday my Mumma and Aunty M came up to visit us which was amazing, I loved every second of it. I made us lunch for us, sweet potato and chili cream cheese soup which seemed to go down well which was good because it was the first time I had made it. We played perfume for a while which is definitely one of my favourite games, I actually had been waiting for them to come up to give them some as I have so many that I would struggle to get through them all, so I thought I would share the love and they both took 2 home with them. We went for a walk down to the Thames and stopped for a drink in a lovely Samuel Smiths pub and put the world to rights. Then we went to Pizza Express and The Man joined us after he finished work which was lovely. Later on The Man drove us all down the road, dropping my Aunty M off home and then headed to Mum and Dad’s.
Sunday, 31 July 2011
Wednesday, 27 July 2011
Good Charlotte - Right here where I belong lyrics (Cardiology new song 2...
Song that makes me think of The Man and how distant I may have been lately xxx
Tuesday, 26 July 2011
Digesting Science part 1
Hello everyone, hope you are all having a great day. I am on a rest day which I actually rested...I know, I know, I am getting good at this shiz-ma-niz (made up word, naughty I know). I actually have been on a bit of a sanity type-rope lately, I keep feeling as if I am going to fall off the wire into a horrible pit of dispair which has been scary. I keep thinking of the future and the different possibilities; I feel like someone has opened up a door and let me see into the future, (this might sound weird to people) it is like looking through a door where there are various people who look like me and they are all in different stages and outcomes of MS, the problem is they all have their backs to me so I can't make out exactly who my future self is. I know that none of us can predict the future and none of us know our fate but with the problems I have it is scary to even think of the future.
I feel terrible as well at the moment because of the impact this is also having on The Man, it must be so unbelievably tough for him. I try not to be horrible to him but sometimes my frustrations and unhappiness bubbles over and I snap or moan or just shrink into myself and cut him out. None of this is acceptable and I know that so I spend a lot of time apologising to him. I think he might write something on here soon, I know that he thinks about it but where I just babble I think other people who maybe haven't kept diaries and things like to think about what they write. Funny thing about this blog is I just type, I just spill everything that is in my heart at the time, whether it is coherent or not is another matter but if it isn't I am sorry, if I thought too long about it I would get myself into a pickle and end up not writing as much. Blah blah blah! What I was trying to tell you is that The Man has been going through all of this with me and sometimes it is worse for him in the way that he lives it without going through it which means he is the perfect target for the 'You don't understand's' and that is rubbish, he does understand and if anything he understands more than me because I guess when you look in you can be objective and reason with it better than if it is happening to you. Partners of people with MS are people to admire and I would like to say that if you are lucky enough to have a partner that stands by you or you know someone who is the partner of an MS patient or if you are that partner, you are or they are doing an amazing job and you/they deserve respect and praise because I think it is the hardest job in the world, an emotional roller-coaster.
I feel terrible as well at the moment because of the impact this is also having on The Man, it must be so unbelievably tough for him. I try not to be horrible to him but sometimes my frustrations and unhappiness bubbles over and I snap or moan or just shrink into myself and cut him out. None of this is acceptable and I know that so I spend a lot of time apologising to him. I think he might write something on here soon, I know that he thinks about it but where I just babble I think other people who maybe haven't kept diaries and things like to think about what they write. Funny thing about this blog is I just type, I just spill everything that is in my heart at the time, whether it is coherent or not is another matter but if it isn't I am sorry, if I thought too long about it I would get myself into a pickle and end up not writing as much. Blah blah blah! What I was trying to tell you is that The Man has been going through all of this with me and sometimes it is worse for him in the way that he lives it without going through it which means he is the perfect target for the 'You don't understand's' and that is rubbish, he does understand and if anything he understands more than me because I guess when you look in you can be objective and reason with it better than if it is happening to you. Partners of people with MS are people to admire and I would like to say that if you are lucky enough to have a partner that stands by you or you know someone who is the partner of an MS patient or if you are that partner, you are or they are doing an amazing job and you/they deserve respect and praise because I think it is the hardest job in the world, an emotional roller-coaster.
Sunday, 24 July 2011
Facets of a Disease
I thought I would write to you and tell you a little about my mental state at the moment, because as you might of read earlier there is about a billion things happening to me right now and although I hope I come across as if I cope with it all I have to tell you that I am only human and it terrifies me. I should mention here that I also have a problem with crying, what I mean is I find it difficult to cry so where a good cry could come in handy sometimes I just can't do it, I just can't make myself let go and cry. I know that sometimes in life we are all faced with unpleasant things or things that we do not want to deal with but at the moment every day is that and it is scary and tiring.
I should tell you I have had to separate myself into two to get through this, one that is strong, calm, ready to get things done to fix myself and still has some confidence. This side of me is the side I try and show the world, I am desperate in a way for people to think that this has all happened and I am still the same person, I can still do anything and I can also help other people get through this. The other side of me is the part that is absolutely terrified of living with this forever, the side that wakes up in the morning disappointed that I have to face another day of pain, discomfort, bladder problems and horrible decisions. This side terrifies me, it has no confidence and wants to stay locked away from the world, it gets angry and lashes out sometimes on those I love and this breaks my heart. This dark side of my personality is something that I am desperately trying to suppress but it is there and I think that you should know it because like I said I am only human and I promised to be honest with you, to bare my soul if you like and at the moment I feel that soul is hiding away trying to protect itself and in doing so sometimes makes me feel like I am being split in two.
There are so many different facets to having Multiple Sclerosis, I thought I would try and explain what I mean by this, so please bare with me.
Facets of my MonSter (Multiple Sclerosis) -
I should tell you I have had to separate myself into two to get through this, one that is strong, calm, ready to get things done to fix myself and still has some confidence. This side of me is the side I try and show the world, I am desperate in a way for people to think that this has all happened and I am still the same person, I can still do anything and I can also help other people get through this. The other side of me is the part that is absolutely terrified of living with this forever, the side that wakes up in the morning disappointed that I have to face another day of pain, discomfort, bladder problems and horrible decisions. This side terrifies me, it has no confidence and wants to stay locked away from the world, it gets angry and lashes out sometimes on those I love and this breaks my heart. This dark side of my personality is something that I am desperately trying to suppress but it is there and I think that you should know it because like I said I am only human and I promised to be honest with you, to bare my soul if you like and at the moment I feel that soul is hiding away trying to protect itself and in doing so sometimes makes me feel like I am being split in two.
There are so many different facets to having Multiple Sclerosis, I thought I would try and explain what I mean by this, so please bare with me.
Facets of my MonSter (Multiple Sclerosis) -
- Constant Pain and Discomfort
- Numbness and feeling removed from the world
- Toilet problems
- Feeling like I have lost my identity
- Feeling scared all the time
- Lose of my independence
- Feeling stupid all the time because I forget words or can't get my sentences out
- Feeling of giving up and surrendering to the Medicines and the Pharmaceutical companies
I have to go and do a supermarket trip but I will be back later
Thursday, 21 July 2011
Letter I sent to the family
Hello everyone,
I thought I would send out an email and let you know what is going on with me. I had the neurologist today (Dr Elrington) and my MS Nurse (Freya) came in with me, they confirmed that I have Rapidly Evolving Severe Relapse/Remitting Multiple Sclerosis which means my MS is unstable and with the rate it is affecting my life it suggests that left untreated my disability will worsen dramatically.
The only medication to slow the progression of my disease is Tysabri (http://en.wikipedia.org/wiki/Natalizumab). There are some significant risks but overall the benefits outweigh them, so under the advice and guidance of both my Neurologist and my MS nurse I am going to start taking Tysabri. What this means is every 28 days I shall have to go to The Royal London Hospital and have an infusion (drip), it takes around an hour and a half. The effects will not be immediate and I will possibly feel pretty bad for the first few infusions but then we should start seeing some benefit. This also means that I shall have an MRI scan every year and have regular blood checks, I will also be required to see Freya regularly to ensure that I am not developing PML (http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy).
Tysabri does not treat my symptoms but it will reduce the amount of relapses I have and allow my body time to heal. There is a number of other things that I will be doing such as Occupational Health are going to come and assess our home to ensure I have everything I need to make it safe and comfortable, Neurological Physiotherapy (no I am not going to learn how to read minds) this is to assess my disability and to help me stay as strong and subtle as I can and this may lead to me getting funding for FES (http://www.salisburyfes.com/). Due to my panic attacks and general anxiety I will be seeing a councellor to help keep me mentally strong (and save poor Matt from living with a crazy).
This is the section that you might want to miss out, toilet update coming! Due to my bladder issues I am going to have to learn to self catheterise, which although is unpleasant will help me considerably. I will be referred to a clinic that will help me with this and hopefully can make it as painless and easy as possible. The problem I have is that my bladder doesn't empty and this causes me to get bladder and kidney infections frequently and the result is my MS gets worse (also causes me to be a little more mental than normal). I will possibly have the option to have botox in my bladder, which would mean that it will never empty naturally and I will have complete control over when I choose to catheterise, but this will be something that I will decide on later on.
Lastly I have to tell you all that I got the results of my blood test back and they were positive for JC Virus. This is a virus that over 50% of the population carry (http://en.wikipedia.org/wiki/JC_virus) and is usually from infections such as tonsilitis. There is no need to treat it as it is harmless but what it does means is the risk of getting PML is slightly higher for me (1 in 500), JC Virus is not the cause of PML but it has been linked to all other patients that have contracted PML.
Right I shall stop rambling on and on about me me me and leave you good people alone.
I thought it was important to make you all aware of what is going on as I know lots of you read my blog and also you are the closest people to me (us).
Love millions
Jess xxxxxxxxx
I thought I would send out an email and let you know what is going on with me. I had the neurologist today (Dr Elrington) and my MS Nurse (Freya) came in with me, they confirmed that I have Rapidly Evolving Severe Relapse/Remitting Multiple Sclerosis which means my MS is unstable and with the rate it is affecting my life it suggests that left untreated my disability will worsen dramatically.
The only medication to slow the progression of my disease is Tysabri (http://en.wikipedia.org/wiki/Natalizumab). There are some significant risks but overall the benefits outweigh them, so under the advice and guidance of both my Neurologist and my MS nurse I am going to start taking Tysabri. What this means is every 28 days I shall have to go to The Royal London Hospital and have an infusion (drip), it takes around an hour and a half. The effects will not be immediate and I will possibly feel pretty bad for the first few infusions but then we should start seeing some benefit. This also means that I shall have an MRI scan every year and have regular blood checks, I will also be required to see Freya regularly to ensure that I am not developing PML (http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy).
Tysabri does not treat my symptoms but it will reduce the amount of relapses I have and allow my body time to heal. There is a number of other things that I will be doing such as Occupational Health are going to come and assess our home to ensure I have everything I need to make it safe and comfortable, Neurological Physiotherapy (no I am not going to learn how to read minds) this is to assess my disability and to help me stay as strong and subtle as I can and this may lead to me getting funding for FES (http://www.salisburyfes.com/). Due to my panic attacks and general anxiety I will be seeing a councellor to help keep me mentally strong (and save poor Matt from living with a crazy).
This is the section that you might want to miss out, toilet update coming! Due to my bladder issues I am going to have to learn to self catheterise, which although is unpleasant will help me considerably. I will be referred to a clinic that will help me with this and hopefully can make it as painless and easy as possible. The problem I have is that my bladder doesn't empty and this causes me to get bladder and kidney infections frequently and the result is my MS gets worse (also causes me to be a little more mental than normal). I will possibly have the option to have botox in my bladder, which would mean that it will never empty naturally and I will have complete control over when I choose to catheterise, but this will be something that I will decide on later on.
Lastly I have to tell you all that I got the results of my blood test back and they were positive for JC Virus. This is a virus that over 50% of the population carry (http://en.wikipedia.org/wiki/JC_virus) and is usually from infections such as tonsilitis. There is no need to treat it as it is harmless but what it does means is the risk of getting PML is slightly higher for me (1 in 500), JC Virus is not the cause of PML but it has been linked to all other patients that have contracted PML.
Right I shall stop rambling on and on about me me me and leave you good people alone.
I thought it was important to make you all aware of what is going on as I know lots of you read my blog and also you are the closest people to me (us).
Love millions
Jess xxxxxxxxx
Wednesday, 20 July 2011
Put my head up, dust myself off & put on a brave face.
Its ok folks, I promise not to rant today, I have stayed away from the news there is no need to be mental today. I spoke to my Best Friend last night and being 432miles away from her is tough, it is like constantly thinking you have left something behind like your keys, phone, purse because it is something that should always be there. We went for years being in each others pocket and one day it was gone and although we are still close we have ended up in different countries. I was describing her to The Man last night, although he has met her I don't think that he really had the chance to get to know her, as I described her he laughed and told me I was describing myself.
When we were growing up people used to say we were 'Black and White', we were complete opposites but that's what made our friendship so strong. She has always been the good one and I have always been the bad one so it made sense in some ways. I think as I have gotten older I have started to realise that we are not that different and in a lot of ways we are very, very similar. I think I have always come across as the confident one who strided off and did what I wanted with no fear; she was considered and made decisions that were well thought out. I think somewhere along the way I almost needed her to believe that I wasn't afraid so that I could look out for her but in actual fact our roles were reversed; for years she has looked out for me and made life make sense when it hadn't before, she was the fearless one because she left our town and everything we knew to head off to Uni in a different country.
As we have gotten older people from our past have come and gone but our friendship remains forever strong. I know that I don't have to call her every five minutes but I know if I do call her and I need her she will be there, and I hope she thinks the same. She has been my Best Friend for about 17 years (been in my life for 22 year) and I know that she will be for the next forever. I miss her terribly but I do find comfort in knowing she works with my Big Brother and his wife, so if ever they can be there for her if I can't.
I spoke to another one of my dearest friends the other night, he has been one of my closet friends for year, maybe 14 years now and he is going through a tough time. He is back in Scotland and I feel very distant from them both, although they don't have contact anymore I would love to go back in time and find a way to buy my parents old house in our home town. We all used to hang out there and life seemed so easy, life seemed so good. There was 5 of us and back then we thought we would be friends forever...we couldn't have imaged the truth. Two of the boys feel out and haven't spoken for about 10 years, the other boy got messed up with drugs and completely changed, my best friend drifted away from the boys as life move on and as for me, I still have ties to the other 3 and I don't think that that will ever change.
I have the Neurologist tomorrow so I am a little shaky about it, not that I believe it is going to be bad, just that it is not something I want to deal with. I am hoping that I will be able to start these new meds and just get on with getting better. I have a page of symptoms as long as my arm and I am hoping that collectively between the nurse, my neurologist and myself, we manage to find a happy mix that will help me and prevent me from getting any worse. Tomorrow will be a positive day, I just have to make sure I stay positive, I often find when I have to deal with these things my mood changes and I get quite down. One feeling I have at the moment is an overwhelming sense of failure, I feel like I have given up and joined everyone else in the search of medication. I feel like I should try harder to deal with this naturally but I don't think I have enough fight in me, I am tired and scared about this whole thing. Saying all that I have to put my head up, dust myself off and put on a brave face.
When we were growing up people used to say we were 'Black and White', we were complete opposites but that's what made our friendship so strong. She has always been the good one and I have always been the bad one so it made sense in some ways. I think as I have gotten older I have started to realise that we are not that different and in a lot of ways we are very, very similar. I think I have always come across as the confident one who strided off and did what I wanted with no fear; she was considered and made decisions that were well thought out. I think somewhere along the way I almost needed her to believe that I wasn't afraid so that I could look out for her but in actual fact our roles were reversed; for years she has looked out for me and made life make sense when it hadn't before, she was the fearless one because she left our town and everything we knew to head off to Uni in a different country.
As we have gotten older people from our past have come and gone but our friendship remains forever strong. I know that I don't have to call her every five minutes but I know if I do call her and I need her she will be there, and I hope she thinks the same. She has been my Best Friend for about 17 years (been in my life for 22 year) and I know that she will be for the next forever. I miss her terribly but I do find comfort in knowing she works with my Big Brother and his wife, so if ever they can be there for her if I can't.
I spoke to another one of my dearest friends the other night, he has been one of my closet friends for year, maybe 14 years now and he is going through a tough time. He is back in Scotland and I feel very distant from them both, although they don't have contact anymore I would love to go back in time and find a way to buy my parents old house in our home town. We all used to hang out there and life seemed so easy, life seemed so good. There was 5 of us and back then we thought we would be friends forever...we couldn't have imaged the truth. Two of the boys feel out and haven't spoken for about 10 years, the other boy got messed up with drugs and completely changed, my best friend drifted away from the boys as life move on and as for me, I still have ties to the other 3 and I don't think that that will ever change.
I have the Neurologist tomorrow so I am a little shaky about it, not that I believe it is going to be bad, just that it is not something I want to deal with. I am hoping that I will be able to start these new meds and just get on with getting better. I have a page of symptoms as long as my arm and I am hoping that collectively between the nurse, my neurologist and myself, we manage to find a happy mix that will help me and prevent me from getting any worse. Tomorrow will be a positive day, I just have to make sure I stay positive, I often find when I have to deal with these things my mood changes and I get quite down. One feeling I have at the moment is an overwhelming sense of failure, I feel like I have given up and joined everyone else in the search of medication. I feel like I should try harder to deal with this naturally but I don't think I have enough fight in me, I am tired and scared about this whole thing. Saying all that I have to put my head up, dust myself off and put on a brave face.
Tuesday, 19 July 2011
Ranty McRant
Good Day all! How are you all today? Well today has been a day and a half, yesterday was a little bit of a train wreck, it was horrible for both The Man and I. I was zoning in and out, it is scary for me and The Man because he says I go away somewhere, for me, I just vanish, I kind of come too somewhere else. I know that when I am like this I look at things and it is like my eyes focus and then don't and like I can't quite understand what is going on, what everyday things are, it is scary. I was also having problems walking so that made the whole thing even worse. Today I stayed in the safety of our own home, away from the scary world.
I have laid in bed most of the day (apart from cleaning the bathrooms, washing the floors, putting on 2 washes and cooking dinner oops) watching the Committee questioning the Murdoch's, Rebekah Brooks and the Police over this phone hacking business. I honestly can't believe how little they actually know as they are the heads of their professions. I have made the 'executive decision' that I should be the head of a multi billion industry because I definitely know that hacking into dead children's phones is wrong. Sorry to be harsh but these people amazes me, they shouldn't just shut The News of the World they should admit that their company has been involved in some of the most heinous acts that could have been committed in modern time. I couldn't care less about celebraties but for the dead I think it is inexcusable and today was just a circus for idiots to perform. Why these people were brought before politicians I will never understand, they are just as corrupt as the ones they were casting judgement on today.
Bums Ranty McRant is back in action folks...sorry!
I am actually a happy(ish) person, I know that you all might find this incredibly hard to believe as I either rant or tell you what problems I have but if I were to constantly tell you how sunny, shiny and great my world was I think it would be a very boring read. I do however have about a billion things to be grateful for which I could list to you but it is 21.03 and I am a little bitty tired he he he! I will tell you that I have an absolutely amazing man who looks after more than you could believe. I am not the easiest patient to deal with and I absolutely hate being ill so I fight it till I have no more fight in me. I guess when my brother said The Man 'is not a carer he must be a handler' he was right.
Anyway I will go just now
Bye for now
Jess x
Parachute Regiment Tribute; Singing For The Angels, Ash Baker
Another Tribute by Ash Baker to the men he has served along side
The Soldiers Prayer, Ash Baker
This is a video made by a friend of mine who is in the Para's, he has served in Iraq and Afganistan and is an absolute treasure.
Monday, 18 July 2011
Mixture Ramble
So I left you the other night talking about going for dinner with Samir we met at the airport, I think. We over the weekend we drove down to Swindon, stayed in a hotel and went to Fairford International Air Show, which was absolutely amazing. It was rainy and cloudy but I think that made the flying seem even more impressive, it also gave The Man and I the opportunity to get matching outfits which made me giggle. There was 5 of us, The Man, Dad, Grampy, U.S and myself, it was brilliant. I will post some photos so you can all see.
I have been feeling dodgy lately and it has been upsetting me muchly to be honest, I just want to feel well. Althought being on Gabapentin is good it doesn't solve all my problems (symptoms) and if I want to tackle all of them I forsee a future of pills, infusions and tests, so I am going to have to find another way around this. I will keep you posted because at this moment in time I have no clue how I am going to do this.
One thing I have noticed is that I have become more and more insecure and I need a lot of reasurance which is weird. I was explaining to The Man that when I was diagnosed with MS I lost my independence but around the same time we got together so I lost a completely different part of my independence so I think I am still coming to terms with those two sides and learning what is what. I think sometime I get confused about it all and then get upset, hence the reasurance required.
I am at work and I feel terrible, I am not sure I can tell you exactly why I just know that I really need to lie down flat and rest, these are 2 things at the moment are not possible. I am looking forward to heading home, curling up with The Man and forgetting about today and looking forward to tomorrow. I think one of the blessings and curses of MS is that you never know how you are going to feel so the best option is to try and stay positive. I know I sound whingy about not feeling well but I honestly do think that although this is a long and tiring process I am getting better, I am improving slowly but surely.
I actually can't think of anything else to talk about, apart from my desire to one day write a book. I have thought about this long and hard and I think the only thing I can do is try and write a book about my experiences, my life. I don’t want it to be specific to me I would like it to be a novel roughly based on my experience. I listened to a women talk about sleep deprivation and how serious it was, she had suffered severely after the birth of her first child and has written a book about it but made it into a fictional novel based on her experience http://www.helen-walsh.co.uk/
Right I am going to go and figure out how we are going to get me home.
Loves
Jess
I have been feeling dodgy lately and it has been upsetting me muchly to be honest, I just want to feel well. Althought being on Gabapentin is good it doesn't solve all my problems (symptoms) and if I want to tackle all of them I forsee a future of pills, infusions and tests, so I am going to have to find another way around this. I will keep you posted because at this moment in time I have no clue how I am going to do this.
One thing I have noticed is that I have become more and more insecure and I need a lot of reasurance which is weird. I was explaining to The Man that when I was diagnosed with MS I lost my independence but around the same time we got together so I lost a completely different part of my independence so I think I am still coming to terms with those two sides and learning what is what. I think sometime I get confused about it all and then get upset, hence the reasurance required.
I am at work and I feel terrible, I am not sure I can tell you exactly why I just know that I really need to lie down flat and rest, these are 2 things at the moment are not possible. I am looking forward to heading home, curling up with The Man and forgetting about today and looking forward to tomorrow. I think one of the blessings and curses of MS is that you never know how you are going to feel so the best option is to try and stay positive. I know I sound whingy about not feeling well but I honestly do think that although this is a long and tiring process I am getting better, I am improving slowly but surely.
I actually can't think of anything else to talk about, apart from my desire to one day write a book. I have thought about this long and hard and I think the only thing I can do is try and write a book about my experiences, my life. I don’t want it to be specific to me I would like it to be a novel roughly based on my experience. I listened to a women talk about sleep deprivation and how serious it was, she had suffered severely after the birth of her first child and has written a book about it but made it into a fictional novel based on her experience http://www.helen-walsh.co.uk/
Right I am going to go and figure out how we are going to get me home.
Loves
Jess
Saturday, 16 July 2011
adventure part 1
So I have to tell you about the last few days because I have not been tuned into the world properly at all, think I have fallen off it but I am now scrambling back to normality. On Wednesday evening we met up with the Egyptian gentleman we had met flying back from Austria, he had insisted that we allow him to take us out for a meal on Edgeware Road. We met up at about 8pm and The Man drove us around to the restaurant which was called Maroush I (http://www.maroush.com/Default.aspx?treeid=170&RestaurantID=1&menu_id=1). We had a lovely evening with Samir, he spoilt us with amazing food and great company. He travels around Europe on business, he imports and exports fresh fruit and vegetables to and from Egypt. He has a farm in Egypt with villa's on it and has invited us to stay with them over if and when we get to Egypt.
got to go but will continue this story soon I promise xx
Loves
Jess
got to go but will continue this story soon I promise xx
Loves
Jess
Friday, 15 July 2011
Bestest Male Friend
I was meant to write to you all tonight but I have been speaking to my Bestest Male Friend so sorry folks, I am not going to write tonight. I am off to stay in a hotel in Swindon tomorrow night because on Sunday we are going to the RIAT - Royal International Air Tattoo and I am very excited.
Thursday, 14 July 2011
Political Rubbish Rant
Instead of Luther Corp (in Superman) we have been battling News Corp (British side News Int). There are many different characters in this whole mess and they are all evil, the problem with this story is we don't have a Superman to come and save us, what we do have is a Parliament full of Jokers though.
I work for BSkyB so I have been in the thick of all this take over malarky and I have to tell you all that it was a little concerning as I know someone who has worked for News Int and they said it was awful, the way they do business and the way that they treat their staff. I am not entirely sure what impact it would have had on little old me but I think having an illness like Multiple Sclerosis would not have been something that they would have been amused at and my recovery could have been seriously affected. On the other hand I do disagree with anyone having that amount of power in regards to the media, as we all know that our politicians are so far up these people arses that democracy is something they shove down everyone else's throats but have conveniently forgotten the meaning of the word.
I don't know much about anything but the world every so often makes me laugh, makes me forget my troubles and giggle at the state of the world. I try not to take all this too seriously as you might have noticed, all this nonsense going on is a slightly tragic because there is a large room full of pompous people that we continually put our faith in and believe that they will protect us and be 'honourable' like they repeat over and over again which frankly I think you will agree is rubbish. I truly believe you would be hard pushed to find an honourable bone in Parliament. Maybe I am a bit of a cynic about it all but this has been going on for the past 10 years (maybe not that long) and NO ONE in government knew. Have to laugh though, we obviously love throwing money at these people, it makes me giggle because I can't work out who is more 'stoopid'!
Signing out back later xxx
Wednesday, 13 July 2011
Monday, 11 July 2011
Strange Encounters
We are back from Austria now and I am in work, I came in on my day off to catch up with some emails before returning properly tomorrow. I had the blood test this morning which all went well so hopefully I will have the results for Dr Elrington. I met some interesting people in the hospital, they were actually having the Tysabri infusion while I was there so that was interesting. Interestingly all of them thought this drug was amazing and said that they would never come off it and although they all knew about the risks the risk of not taking was too high and terrifying. I think that at this point in all of this I am thinking the same, there is a 1 in 1000 chance it will kill me compared to the 100% chance that this disease is only going to get worse, odds I don’t like but are a reality. I am willing to take the 1 in 1000 chance because I don’t believe any of you are lucky enough for me to pop it early…the universe isn’t that kind. All in all the visit to see the nurse and get the test was a success, and to make it more successful I walked up there on my own and to work on my so I walked 1.2 miles in total all on my lonesome, well with my trusty accomplice Dylan.
The Man bought me some more perfume, one of my absolute favourites to cheer me up after going to the hospital. I have an absolute obsession with perfumes and they make me so happy. My Mumma once told me ‘Get up, have a shower, do your hair and make-up regardless how bad you might feel and it is guaranteed to make you feel better’ I live by that, it does make me feel better, if I look and smell good to the world I feel better in myself. I think it I like an like having a superhero suit on, different smells for different occasions, it is amazing how a smell can change the way you view the world. Anyway, long story short, The Man is absolutely amazing, I love him so much and I am a very lucky girl to have found her Prince Charming.
I wanted to tell you about our crazy adventure on the way home. After saying a sad goodbye to The Man’s Dad and his wife we got through the airport with no problems at all, Vienna airport is small, walk-able and you can’t spend too much money on the way through because perfume is so blooming expensive. We got on the plane no problem and had a good flight, we sat right at the front so we could decided when to get off. The Special Assistance at Gatwick was amazing, we got one of those buggy things all the way through the airport, got our bags and as we went through we made friends with an Egyptian man (older, in is 50’s) who was over on business and gave me a card and said if I was ever in Egypt to contact him and he would look after us. We offered him a lift to London as navigating the trains to London and then through London can be stressful, especially when you have walking issues and luggage. So off we went together, we had a lovely drive back to London but got him safely to his hotel. He was so thankful he wants to meet up on Wednesday and take us for a meal which is lovely. It was our little adventure and both The Man and I were glad to have met him and made friends with him.
I will have to get The Man to check this so sorry if there are any mistakes.
Loves
Jess xxxx
Thursday, 7 July 2011
Bratislava
I have had a wonderful day in Bratislava with The Man and his Dad. Earlier before we left for Bratislava we went to the chemist in Pernitz because I had not brought enough Gabapentin with me on holiday, I showed the pharmacist and he said no problem and got me some straight away. They are so lovely and helpful, he also gave the man some anti-botics yesterday as he has a chest infection. I will be writing him a thank you note for sure for his kindness.
I will add some photos from this holiday when I get home, unfortunately I can't do it from my iPhone (Izzy). We have taken some brilliant photos.
Oh I have to say sorry for all the mistakes recently I have been using the iPad and my iPhone so it is sometimes hard to type, think and correct.
Loves for now
Jess xxxx
I will add some photos from this holiday when I get home, unfortunately I can't do it from my iPhone (Izzy). We have taken some brilliant photos.
Oh I have to say sorry for all the mistakes recently I have been using the iPad and my iPhone so it is sometimes hard to type, think and correct.
Loves for now
Jess xxxx
Wednesday, 6 July 2011
6+ tonnes of wood stacked
So today was a tough day but it was brilliant, I have loved every single second of it and more. We got up just after 7 and the wood was delivered about 7.30 whilst we ate breakfast, so we finished up and by 8.10 the three of us were out stacking just over 3 tonnes of wood. The Man loaded each and every wheelbarrow and his Dad and I were in the shed, I passed the wood up to him and he stacked it. We found this to be the most effective way of stacking the wood and it worked incredibly well. The Man was absolutely phenomenal loading the barrows and wheeling them , it was definitely the toughest of the jobs and he made it continually look easy. It was a brilliant team building exercise and I think more people should try and do something like this because it shows great qualities in people. The Man was definitely the orchestrator and the muscle and I took direction and his Dad quietly steered but also stepped back and took direction. All in all, I have had an amazing few days helping the men stack over 6 tonnes of wood.
My illness affects my mobility and causes so much disruption in my life, the past three days have been nice just getting on with a task and getting it done. There were times that I could have given up and played the MS card but I didn't because this was something that could and would prove to me and others that I am still in the game. I might not be able to do everything in life but I can help stack 6 tonnes of wood and I will do a half marathon in 3 months and you know what...I love it! I can't remember the last time I actually felt this alive, I am so happy.
I have decided that I need to have challenges in my life to conquer because that's how I know I am still alive. I think that anyone and everyone should find something like this to do even once a year do it because is it not only great physically to achieve something like this it is also amazing for the soul.
Our trip to Austria has been absolutely amazing, it is brilliant to be able to come here and visit The Man's Dad and his lovely wife who I have to mention has looked after us so well whilst we have been here. E (The Man's Dad's wife) has cooked some of the most amazing food whilst we have been here, from amazing fish, Paprika Chicken, meat loaf today, amazing sweet dough cake, some wonderful salads and much more. I think I will be dieting when I get home but while I'm on holiday I am going to enjoy every second of it.
Right enough from me. My legs don't really work anymore for the day and my spine is a little bit jumpy but all in all I am on top of the world.
Loves
Jess xxx
My illness affects my mobility and causes so much disruption in my life, the past three days have been nice just getting on with a task and getting it done. There were times that I could have given up and played the MS card but I didn't because this was something that could and would prove to me and others that I am still in the game. I might not be able to do everything in life but I can help stack 6 tonnes of wood and I will do a half marathon in 3 months and you know what...I love it! I can't remember the last time I actually felt this alive, I am so happy.
I have decided that I need to have challenges in my life to conquer because that's how I know I am still alive. I think that anyone and everyone should find something like this to do even once a year do it because is it not only great physically to achieve something like this it is also amazing for the soul.
Our trip to Austria has been absolutely amazing, it is brilliant to be able to come here and visit The Man's Dad and his lovely wife who I have to mention has looked after us so well whilst we have been here. E (The Man's Dad's wife) has cooked some of the most amazing food whilst we have been here, from amazing fish, Paprika Chicken, meat loaf today, amazing sweet dough cake, some wonderful salads and much more. I think I will be dieting when I get home but while I'm on holiday I am going to enjoy every second of it.
Right enough from me. My legs don't really work anymore for the day and my spine is a little bit jumpy but all in all I am on top of the world.
Loves
Jess xxx
Tuesday, 5 July 2011
Wood stacking
Good day everyone, we are still loving it over here in Austria. Yesterday we helped The Man's Dad stack 2 tonnes of wood and this morning we did about half a tonne, tomorrow we will be doing about 3 and a half tonnes so it is a big day tomorrow. Weirdly enough it is actually quite fun doing the wood and I think that it is amazing bonding time for The Man and his Dad, as they say, nothing brings you close than hard labour.
I am still trying to fill out the DLA (Disability Living Allowance)form which is honestly breaking my spirit more than anything else I have ever had to do. This form makes me puts my problems down in black and White, it makes me realise just how bad things get sometimes and also hard it can be to deal with. Anyway I have to fill this form out by Monday so I can take it to the MS nurse.
The Man's Sister has got flights out to Austria so she arrives on Thursday, which is very exciting, V is lots of fun. It will be nice as well for The Man, his sister and their Dad to have some time. One question that his family often ask me is why I don't call him by name, this is because I think it is fine for me to write about my life but sometimes it is not fair to write about his life so therefore I only speak about him as a character and encourage him to write to you himself on here.
Umm, I have to tell you about Gabapentin, it is a epileptic drug that is used for neurological pain in MS sufferers. My Aunty (well Mum's cousin) wrote to Mum and Dad about her friend in Spain that has MS and who is taking Gabapentin and although I have had the tablets for a while I had not taken them because of the bad effects they can have and also the whole 'issue' I have with medications. After reading her letter I decided to give it ago, it gave me confidence to try. I have to say I had 2 weeks of incredibly sad thought, dark despairing thoughts but I did come out of the other side and it has made me feel better, so for now I am giving a thumbs up to Gabapentin.
Better go for a nap now as have some serious wine tasting to be done later on xxx
Loves folks xxxx
Jess
I am still trying to fill out the DLA (Disability Living Allowance)form which is honestly breaking my spirit more than anything else I have ever had to do. This form makes me puts my problems down in black and White, it makes me realise just how bad things get sometimes and also hard it can be to deal with. Anyway I have to fill this form out by Monday so I can take it to the MS nurse.
The Man's Sister has got flights out to Austria so she arrives on Thursday, which is very exciting, V is lots of fun. It will be nice as well for The Man, his sister and their Dad to have some time. One question that his family often ask me is why I don't call him by name, this is because I think it is fine for me to write about my life but sometimes it is not fair to write about his life so therefore I only speak about him as a character and encourage him to write to you himself on here.
Umm, I have to tell you about Gabapentin, it is a epileptic drug that is used for neurological pain in MS sufferers. My Aunty (well Mum's cousin) wrote to Mum and Dad about her friend in Spain that has MS and who is taking Gabapentin and although I have had the tablets for a while I had not taken them because of the bad effects they can have and also the whole 'issue' I have with medications. After reading her letter I decided to give it ago, it gave me confidence to try. I have to say I had 2 weeks of incredibly sad thought, dark despairing thoughts but I did come out of the other side and it has made me feel better, so for now I am giving a thumbs up to Gabapentin.
Better go for a nap now as have some serious wine tasting to be done later on xxx
Loves folks xxxx
Jess
Sunday, 3 July 2011
Austrian BBQ
Hey there folks, I am sitting in The Man's down lounge with The Man and I couldn't be more happy. We have had a lazy sunday morning, got up for 9ish and had breakfast which was lovely and headed back to laze upstairs. I downloaded an app that tells you that you were in a past life, I was an Eastern Indian girl in the 1700's and I was killed by my drunken father the night I was meant to do my first dance performance. The Man was a blacksmith in London and had 7 children. We're having a BBQ this afternoon, really looking forward to it.
Better go now
Loves
Jess xxx
Better go now
Loves
Jess xxx
Saturday, 2 July 2011
Go to Austria
Just thought I would let you all know we got to Austria safe and sound. Had a slight issue with getting on the plane at Gatwick due to the ground staff Menzies but Easyjet were lovely and took good care of us especially a airhost called Lester. The Mans dad collected us and his wife cooked us a lovely fish dish and an amazing dough cake. I was absolutely pooped so went to sleep at 6 and slept through till now, thought I would update you quickly and then go back to sleep.
P.S don't tell anyone but the plane malarky made me cry xxx
Loves xxxx
P.S don't tell anyone but the plane malarky made me cry xxx
Loves xxxx
Friday, 1 July 2011
Off to Austria
We are off to Austria tomorrow so I will blog hopefully when we get there and get settled, I have got roaming Bundle on my phone so I can use it while abroad so laughing :) I will try and blog as much as I can :)
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