I have decided to go onto Tysabri and put the risk of PML (fatal brain infection) out of my mind. Everyday at the moment I can physically feel my body changing and weakening so I don't actually think that I have much of a choice, I need to do everything humanly possible to slow down the MonSter.
About a year ago I was given the news I had MS, I remember thinking, 'well that isn't too bad', I had no idea. I don't think it is the worst thing in the world and I realise that there are people facing a lot worse but at the moment it is tough, it is tough to fight every waking moment but I will and I will win. Regardless of what the MonSter does to me I will fight and every obstacle he may put in front of me I will conquer because I have so much to live for and so many people to fight for. I am tired at the moment and get down about my situations but as my wise Mumma and Papa tell me 'Worst things happen at sea.
I have spoken to my MS Nurse and I am going to go for a blood test on the 11th July to see if I have the JC Virus, if I do I will not be allowed to take Tysabri. So we will see, I have the specialist on the 21st which will be interesting, fingers crossed folks, fingers crossed.
Wednesday, 29 June 2011
Tuesday, 28 June 2011
Monday, 27 June 2011
Friends
I have been a little distracted and a little down lately about this whole Tysabri business. I am not sure if I have told you much about this but it is a drug that could help me, it could slow my disease and keep me out of a wheelchair but it has a catch, a big catch...it can give you a fatal brain infection which has no treatment. My brain has been absolutely pickled by it all, it also affects me having children, doesn't stop me but comes with another set of risks. I have emailed out to all of my family asking for advise because although there is only a 1 in 1000 chance of getting the infection it is still something that could affect more than just me. If I snuff it I think there will be some people out there that may find that hard to deal with, they might just miss me I think. Anyway the clogs will keep turning in my head and I will let you know what I decide to do.
Today has been horrendously hot in our little flat and I have been on a rest day so been house bound. I have had trouble with the toilet again, sorry to talk about it again but I have to be honest don't I. I have been having to get up every hour all through the night due to my spasming bladder. The Nurse scared me a little by explaining that it sounds like I have a spasming bladder that doesn't empty and this causes me to get infections in my bladder and kidney's which has been making me feel so rubbish. Unfortunately there is no medication for this and I will have to self catheterise, which isn't pleasant but if it improves my life I will do it with a smile.
I just had the most amazing phone call from a women I have worked alongside for the past 4 years, and although we have never met in person has become a true friend. She called to tell me that she is doing a sponsored cycle from Glasgow to Edinburgh and wanted to know if she could mention me in her JustGiving page as she would like to raise money for MS. We also spoke about her and another lady she works with (and I have gotten to know) coming to London and stay with us, so I am very very excited about that. I always think it is amazing the people who come into your life and the impression they make on you. I am a very lucky girl because of such people.
Right due to it being about 30 degrees in here I am off for a very cool shower. Love you all xxxx
Night night xxxx
Jessxxx
Saturday, 25 June 2011
Sky
So on Thursday we were at a conference for work which was good, I did panic all day because of the amount of people that were there. It was a good day and the director of our section of Sky (thats who we work for) was absolutely amazing, they put us up in the Marriott hotel in Twickenham which was lovely and reduced the stress of getting here. He also asked me all the time if I was ok and if there was anything they coiuld do to make me more comfortable, also thanking me for making the effort to come to the conference so it was lovely.
I must admit that I had a little too much wine that night and spent most of yesterday paying the price for it. I think needed some drunk time (had about 5 glasses of wine) with all this medication thinking and future prospects I think I really needed time to just switch off and feel normal for a while. It is sad to say that my life is headed in a direction that I never could have ever imagined, these things happen to someone else, not to me. I was told the other day that I would have to start self Cathetrising (excuse the spelling) which is something at 29 I never thought I would hear. I know that it will help me but it is not s pleasant thing to have to learn to do and also knowing that this is something I will have to do baecause there is no treatment for this problem I have. Also that there is a high chance that I will lose the site completely in my right eye, and because my legs are affected there is a good chance that I will eventually end up in a chair.
I know that we shouldn't think if the future and none of us know our destinies but I feel sad that I have an insight into mind and however grim it might be we cannot change the course of it, I just have to be as prepared as I can to deal with it and ensure that I can enjoy ever but of my life with these disabilities. I am lucky because of the support network I have and the family that I have, every single person in my life plays a role that I need, every step of the way I have been blessed with kindness and support so I believe that the future is going to fine and that together we can cut our own shapes and enjoy it together.
Just of to Chiro now so will hopefully write again later.
Loves
Jess
I must admit that I had a little too much wine that night and spent most of yesterday paying the price for it. I think needed some drunk time (had about 5 glasses of wine) with all this medication thinking and future prospects I think I really needed time to just switch off and feel normal for a while. It is sad to say that my life is headed in a direction that I never could have ever imagined, these things happen to someone else, not to me. I was told the other day that I would have to start self Cathetrising (excuse the spelling) which is something at 29 I never thought I would hear. I know that it will help me but it is not s pleasant thing to have to learn to do and also knowing that this is something I will have to do baecause there is no treatment for this problem I have. Also that there is a high chance that I will lose the site completely in my right eye, and because my legs are affected there is a good chance that I will eventually end up in a chair.
I know that we shouldn't think if the future and none of us know our destinies but I feel sad that I have an insight into mind and however grim it might be we cannot change the course of it, I just have to be as prepared as I can to deal with it and ensure that I can enjoy ever but of my life with these disabilities. I am lucky because of the support network I have and the family that I have, every single person in my life plays a role that I need, every step of the way I have been blessed with kindness and support so I believe that the future is going to fine and that together we can cut our own shapes and enjoy it together.
Just of to Chiro now so will hopefully write again later.
Loves
Jess
Friday, 24 June 2011
Wednesday, 22 June 2011
Feel like I am falling
Today has been really tough, it has taken me back to when I was first diagnosed and I felt so lost. Sometimes I feel like the floor falls away from me and I am just falling, sinking into my own unhappiness. The Man has been fantastic all day and I now feel a little happier about the world. I feel down and bad about all of this because sometimes I feel like it isn't fair. I always try to keep a happy face but why, why do I smile to make everyone else feel better when I am in so much pain. The reason is, because I love those people and keeping them away from this misery I feel is better than dragging everyone down with me. People always say encouraging things to me and I appreciate their words but sometimes they are just that, words. Nothing is going to change what this disease has done and will do in the future and no one can tell me why, so everyday is the same for me, wake up in pain, try to get through the day without falling appear and then try and get some sleep through the discomfort and toilet problems.
I know how miserable I sound and I know that this isn't going to be a popular Blog post but sometime letting the world know how hard this all is isn't a bad thing. I am grateful for all the world people in my life and all the wonderful experiences I am lucky enough to have so I am well aware that this isn't the worst thing in the world, but every now and then I sometimes lose that sight a little. I know that tomorrow will be better than today and the day after will be better still but I feel like there is a dark cloud just looming in my future and I can't see it properly so don't know what it is I just know that I am not going to like it.
The power of language is amazing, this feeling has come since I spoke to the MS Nurse and she used words such as 'Progressive', 'Aggressive','Rapidly', 'Evolving' and 'Severe' which when you are talking about a disease that you don't understand and can't stop is kind of terrifying. The Nurse told me that I have Rapidly Evolving Severe Relapsing/Remitting MS and if I don't slow it the future is not bright for me and I will end in a chair and the toilet issues will only keep getting worse. I know that it is important for me to acknowledge these things but I had deliberately avoided naming the type of MS I had or considering what the future might hold because I knew that all my strength would be shaken if I thought it was a fight I can't win.
Every now and then I realise that there is something I can no longer do -
I know how miserable I sound and I know that this isn't going to be a popular Blog post but sometime letting the world know how hard this all is isn't a bad thing. I am grateful for all the world people in my life and all the wonderful experiences I am lucky enough to have so I am well aware that this isn't the worst thing in the world, but every now and then I sometimes lose that sight a little. I know that tomorrow will be better than today and the day after will be better still but I feel like there is a dark cloud just looming in my future and I can't see it properly so don't know what it is I just know that I am not going to like it.
The power of language is amazing, this feeling has come since I spoke to the MS Nurse and she used words such as 'Progressive', 'Aggressive','Rapidly', 'Evolving' and 'Severe' which when you are talking about a disease that you don't understand and can't stop is kind of terrifying. The Nurse told me that I have Rapidly Evolving Severe Relapsing/Remitting MS and if I don't slow it the future is not bright for me and I will end in a chair and the toilet issues will only keep getting worse. I know that it is important for me to acknowledge these things but I had deliberately avoided naming the type of MS I had or considering what the future might hold because I knew that all my strength would be shaken if I thought it was a fight I can't win.
Every now and then I realise that there is something I can no longer do -
- Walk properly
- Paint my nails
- Do my hair up
- Do fancy Make-up
- Hang washing out on a line (without severe discomfort)
- Undo jars in the kitchen
- Hand whisk
- Lift heavy objects
- Jump
- .......and the list goes on
Every now and then I wonder what the MonSter will take next and where it will end.
Signing out
Love to all
Jess xxx
Monday, 20 June 2011
MS Nurse
I saw the MS nurse today and now I am in a bit of a quandary about it all, I thought I was sure that the No Drug route was the one for me but lately I have been getting tired. I spoke to her and she told me that the aim of the game is to stop MS before it does too much damage and she believes that I have Aggressive Relapsing and Remitting MS and that it is progressive, which means I am headed to what I believe to be a bad place. I still haven't looked into it all yet but I will be looking into all possibilities.
Amazing weekend
Apologies for not being in touch over the past couple of days but I have had such an amazing weekend. I did actually write and tell you all about it but my computer got the beach ball of death and I lost everything. I will give you a proper update later though about the weekend but here are the highlights –
Friday –
· Got the train down to Ma & Pa’s
· Had a Chiropractor appointment – absolutely amazing as ever, Jackie sorted out my back and gave me acupuncture all the way down my spine which was new, and some auricular therapy.
· Chilled out at Ma & Pa’s, did a little work and then dosed on the couch
· Ma & Pa came home and then Big Bro and Sis (-in-law) turned up.
· The Man soon followed
· Had dinner and then crashed out.
Saturday
· Got up took met Ma, Pa & Big Bro out for a walk with TobyTigger (my doggy)
· Got back had breakfast together
· All went to the HMS Sultan Show http://www.sultan.org.uk/ we had an absolutely amazing day.
· Big Bro & Sis (-in-law) paid for us all (but Pa, he doesn’t like flying) for us to go on a Helicopter ride. I got to sit in the front and it was unbelievable, I have always wanted to go in a Helicopter so it was absolutely amazing.
· Went on the wall off death (spinning fairground ride)
· Watched Monster Trucks (yyyyyeeeeeaaaaaaaa)
Sunday
· The Family came round for Fathers Day, Nanny & Grampy, Aunty P & Uncle S, Aunty M, Couz S, and the 6 of us.
· Had to drive back up to London Town, which was sad to leave everyone.
I will add photo’s later.
Loves
Jess
Friday, 17 June 2011
On the train
I am sitting on the train on the way back down to my Mumma and Papa's house it isn't a bad journey but I wish I had a teleport machine. Saying that I would worry that it would put me together in the wrong order, it could get a little messy. I am heading down to see Jackie the chiro and I am looking forward to it because I have been sore lately. Since I saw her about my knee last time it hasn't flared up at all which is amazing, she does work wonders on me. I honestly think of all the treatments I have tried she is the best. Every time I go and see her I am a lot better.
I am also excited because my brother and his lovely wife will be there which always helps me as well. They have the power to make me feel so much better as well. It is my sister in laws birthday next week so I have bought her pressie, fingers crossed she likes it. I think she will because it is so pretty, pretty things for pretty people.
The Man took me through the tube system today and made if so easy with was amazing, I love him to bits. One thing I have noticed lately is that I get incredibly nervous about getting places on time and I think it is because I have been all out of synch lately, our routine has been a little messed up because we have be breaking up the morning in a way that doesn't cause me too much pain and discomfort. Mornings are my worst time I think, I waken not feeling too refreshed and my body is stiff and sore from the spasms through the night. Not that I can complain too much, I can still get up and get going and besides all the pain and discomfort I am lucky to still have what I have.
I am typing this on Izzy iPhone so if there are tons of mistakes I apologise, I do have Annie MacBook with me but it is a faff getting her out and I also feel a little vunera or with such an expensive bit of kit and the inability to deal with life in general. I love Izzy iPhone though, since losing the feeling in my hands I find if so easy to type on her. I honestly love my iPhone now, I didn't get on with the first one but I love this one.
Oh I have to tell you about Waterloo station this morning, it is Ascot todays so all the posh folk where out in their glad rags and if was amazing to watch. The outfits of the men and women were fantastic. I love seeing people all smart and pretty, and the shoes, wow! Women in high heels that will absolutely destroy their feet and you could tell some had already realised there mistake. It was great 'Life TV' and I hope they all have a fantastic day.
I have to tell you some things I get jealous of nowadays, toilet talk coming, just to warn you. I am very jealous of other people's wee flows, I sit on the toilet at work or in public places and fight with my body to let me wee and people stroll in, straight into the cubicle and wee....ahhhhh! Probably sound stupid to you but it is so frustrating. People walking, not thinking of every step, happily strolling along without a care in the world.. Oh and joggers, I find myself having to resist the temptation of screaming 'SHOW OFF'. Women in high heels, I love to watch them, makes my heart sink but I know that it isn't really important. A people (girls) who can paint their own nails, I used to do it every other day but I shake too much now so unfortunately I have to leave it for the professionals.
Anyway nearly there will go just now.
Loves
Jess
I am also excited because my brother and his lovely wife will be there which always helps me as well. They have the power to make me feel so much better as well. It is my sister in laws birthday next week so I have bought her pressie, fingers crossed she likes it. I think she will because it is so pretty, pretty things for pretty people.
The Man took me through the tube system today and made if so easy with was amazing, I love him to bits. One thing I have noticed lately is that I get incredibly nervous about getting places on time and I think it is because I have been all out of synch lately, our routine has been a little messed up because we have be breaking up the morning in a way that doesn't cause me too much pain and discomfort. Mornings are my worst time I think, I waken not feeling too refreshed and my body is stiff and sore from the spasms through the night. Not that I can complain too much, I can still get up and get going and besides all the pain and discomfort I am lucky to still have what I have.
I am typing this on Izzy iPhone so if there are tons of mistakes I apologise, I do have Annie MacBook with me but it is a faff getting her out and I also feel a little vunera or with such an expensive bit of kit and the inability to deal with life in general. I love Izzy iPhone though, since losing the feeling in my hands I find if so easy to type on her. I honestly love my iPhone now, I didn't get on with the first one but I love this one.
Oh I have to tell you about Waterloo station this morning, it is Ascot todays so all the posh folk where out in their glad rags and if was amazing to watch. The outfits of the men and women were fantastic. I love seeing people all smart and pretty, and the shoes, wow! Women in high heels that will absolutely destroy their feet and you could tell some had already realised there mistake. It was great 'Life TV' and I hope they all have a fantastic day.
I have to tell you some things I get jealous of nowadays, toilet talk coming, just to warn you. I am very jealous of other people's wee flows, I sit on the toilet at work or in public places and fight with my body to let me wee and people stroll in, straight into the cubicle and wee....ahhhhh! Probably sound stupid to you but it is so frustrating. People walking, not thinking of every step, happily strolling along without a care in the world.. Oh and joggers, I find myself having to resist the temptation of screaming 'SHOW OFF'. Women in high heels, I love to watch them, makes my heart sink but I know that it isn't really important. A people (girls) who can paint their own nails, I used to do it every other day but I shake too much now so unfortunately I have to leave it for the professionals.
Anyway nearly there will go just now.
Loves
Jess
Thursday, 16 June 2011
Tough day
Today has been another toughy, just when I think I am getting a handle on this whole MS malarky it seems to throw new stuff at me and I have to try and struggle to keep up with it. This week has been hard because I have been once again riddled with pain, from the minute I wake up to my poor broken sleep through the night. Never was a truer word spoken than 'worse things happen at sea' but sometime I wonder how bad thing were to have lasted all these months.
When I say The Monster has thrown new things at me this week one of the major things is every time I move my neck I get a shock, not horrific ones like before but still uncomfortable, The Monster has also been hugging my chest tightly making it hard to breathe and my walking has been tough, lifting my left leg is really bad at the moment. When I walk it is as if the messages are just not getting to the right bits in the right order meaning it is tiring and eventually painful. None of these things are at all as severe as they were before but they are annoying and also wearing on my ability to cope. I find that I am getting anxious about the strangest things, which with the help of EFT (Emotional Freedom Technique) I will be able to overcome these things.
Although my health has been tough I have made it to work Tuesday, Wednesday and Thursday and I am working from home tomorrow afternoon so I have achieve and I have also managed to walk to and from work every day with the help of The Man. He has been amazing all through the week. I love him, if you didn't get that from earlier.
Night night for now
Loves
Jess
When I say The Monster has thrown new things at me this week one of the major things is every time I move my neck I get a shock, not horrific ones like before but still uncomfortable, The Monster has also been hugging my chest tightly making it hard to breathe and my walking has been tough, lifting my left leg is really bad at the moment. When I walk it is as if the messages are just not getting to the right bits in the right order meaning it is tiring and eventually painful. None of these things are at all as severe as they were before but they are annoying and also wearing on my ability to cope. I find that I am getting anxious about the strangest things, which with the help of EFT (Emotional Freedom Technique) I will be able to overcome these things.
Although my health has been tough I have made it to work Tuesday, Wednesday and Thursday and I am working from home tomorrow afternoon so I have achieve and I have also managed to walk to and from work every day with the help of The Man. He has been amazing all through the week. I love him, if you didn't get that from earlier.
Night night for now
Loves
Jess
Dr Elrington
Thought you might like some info about my Neurologist -
Dr Giles Elrington qualified at St Bartholomew's Hospital in 1980 with honours in Surgery, and in Clinical Pharmacology & Therapeutics. He trained in London, Oxford and Southampton. His MD thesis in the late 1980s was on cross-reactive autoimmunity between small cell lung cancer and the neuromuscular junction. Thereafter he acquired an interest in headache and since becoming a consultant in 1993 has run the Headache clinic at the Royal London Hospital, later Barts and the London NHS Trust where more recently he has done clinical trial work in headache and multiple sclerosis. From 1993 to 2001 he was also consultant neurologist in Colchester where he established the neurocare rehabilitation team. From 2001 he has has a portfolio career in which the largest growth area has been running clinics from Primary Care Trusts in Essex.
He is a former treasurer of the British Association for the Study of Headache, on the Executive Committee of the Anglo-Dutch Migraine Association, and a Director of the City of London Migraine Clinic.
He is a former treasurer of the British Association for the Study of Headache, on the Executive Committee of the Anglo-Dutch Migraine Association, and a Director of the City of London Migraine Clinic.
The Man
Waiting for The Man to head off to work and he is writing a bio for a conference he is speaking at in October, he is so talented and I beam with pride when I listen to him. He is so interesting as a person and has great speaking skills, he also doesn't fully realise his own talents and also his own charm. He is gorgeous as a person and professionally someone to admire and learn from. This morning I feel very proud to be his girl xxx
Wednesday, 15 June 2011
Quote of the day
"Learn as if you were going to live forever. Live as if you were going to die tomorrow."~ Mahatma Gandhi
Tuesday, 14 June 2011
Stuff..Busy...Stuff...Busy....grrrrrrr!
Busy, Busy, Busy! Life goes at a million miles and hour and doesn't wait for no man does it. I have decided that life's urgency to finish is slightly rude. I seem to chase my tail all the time at the moment and I don't seem to be getting anything done, it's a little rubbish. On the plus side my health appears to be improving which is amazing, I thought I would be stuck with the continual toothache pain over my entire body but now I only seem to have a dull ache all the time that intensifies like when you eat ice cream with sensitive teeth.
I have a lot to do at work and I love it but I feel like I am going round and round in circles. I also find it difficult to concentrate all day as well but I am really trying to over come that with Pomodoro (concentration technique that The Man told me about). I have been reading The A to Z of Multiple Sclerosis today and seeing if I can find any tips and hints to make myself feel even better. I must say every time I tell people I have signed up for the Great North Run they act as if I have done the worst thing in the world. I am trying not to let it put me off but I am starting to get concerned.
I know this is slightly morbid but I have been reading about life expectancy and I find that pretty scary. I know that none of us know when we will die but it has shaken me a little that 6-7 years has been knocked off my life expectancy. I am aiming to live to 100 so if I don't make it to 107 I think I will be glad of it. The Monster can't be so greedy that he will take some of my good years and then steal some at the end. He has to choose and as he has already interrupted so much of my young years he will have to settle with that and leave my golden year to me.
I have some friends coming round tonight so this is my one and only post until tomorrow. Have a great evening and I will be back tomorrow.
Loves
Jess
I have a lot to do at work and I love it but I feel like I am going round and round in circles. I also find it difficult to concentrate all day as well but I am really trying to over come that with Pomodoro (concentration technique that The Man told me about). I have been reading The A to Z of Multiple Sclerosis today and seeing if I can find any tips and hints to make myself feel even better. I must say every time I tell people I have signed up for the Great North Run they act as if I have done the worst thing in the world. I am trying not to let it put me off but I am starting to get concerned.
I know this is slightly morbid but I have been reading about life expectancy and I find that pretty scary. I know that none of us know when we will die but it has shaken me a little that 6-7 years has been knocked off my life expectancy. I am aiming to live to 100 so if I don't make it to 107 I think I will be glad of it. The Monster can't be so greedy that he will take some of my good years and then steal some at the end. He has to choose and as he has already interrupted so much of my young years he will have to settle with that and leave my golden year to me.
I have some friends coming round tonight so this is my one and only post until tomorrow. Have a great evening and I will be back tomorrow.
Loves
Jess
Sunday, 12 June 2011
V's Birthday
Sorry I have been rubbish over the past few days, that weird thing called life keeps getting in the way. On Thursday we were out with The Man's sister as it was her birthday, we went over to Whitehall (posh) and went to a pub called The Clarence which was lovely. It was a lovely night and it was great to meet some of her friends and work colleagues, it was also nice for me to be out doing something normal.
On Friday after work we decided to stop in for a drink on the way home which was brilliant until the walk home. It was lovely to be out with everyone being normal(ish) but I had 5 small glasses of wine which is WAY too much for me. When I drink alcohol it really affects my walking and it causes so much pain that it is honestly just not worth it at all. I just can't handle it at all, it isn't often that I allow The Monster to bring tears to my eyes but that night it did. It took us and hour and 20 minutes to do a 20 minute walk, it was horrendous. I love The Man so much for helping me and being so patient, I couldn't believe that anything could make my whole body scream that much. I have to say though that I will not be making that mistake again in the near future. I can enjoy 2 glasses of wine when I am out and not have too much difficulty so that is what I have to remember and enjoy.
Yesterday we went round to The Man's sisters and his Dad and Aunty were there as well, it was lovely. We didn't get around there until about 6pm and we stayed until about 11pm so it was a late night. It was amazing to be at V's house and to meet her closest friends, it was also nice to be around The Man's family because they are lovely.
On Friday after work we decided to stop in for a drink on the way home which was brilliant until the walk home. It was lovely to be out with everyone being normal(ish) but I had 5 small glasses of wine which is WAY too much for me. When I drink alcohol it really affects my walking and it causes so much pain that it is honestly just not worth it at all. I just can't handle it at all, it isn't often that I allow The Monster to bring tears to my eyes but that night it did. It took us and hour and 20 minutes to do a 20 minute walk, it was horrendous. I love The Man so much for helping me and being so patient, I couldn't believe that anything could make my whole body scream that much. I have to say though that I will not be making that mistake again in the near future. I can enjoy 2 glasses of wine when I am out and not have too much difficulty so that is what I have to remember and enjoy.
Yesterday we went round to The Man's sisters and his Dad and Aunty were there as well, it was lovely. We didn't get around there until about 6pm and we stayed until about 11pm so it was a late night. It was amazing to be at V's house and to meet her closest friends, it was also nice to be around The Man's family because they are lovely.
Thursday, 9 June 2011
Good Times
So folks if we get 13 more people read my Blog today we have hit 2000 in just one month, that is awesome. I know I bleat on about the figures but it is such a boost for me every day to know that folk want to read. After meeting my new hero (my neighbour) and finding out he has had 150,000 page views in 5 years I am wondering how I can step up my game and interest more people. No that's not entirely true, I love writing and I love sharing this experience with people, hoping that I might just make a difference to someone else going through this.
Last night we had our housemates from 110 round for Beer and Pizza Wednesday and The Apprentice. It was really nice to see everyone. Although living in a big house with so many people had it's trails and tribulations towards the end because of my illness, it was one of the happiest times of my life and I love them all and miss them. We ordered Pizza for Pizza Express, we had vouchers for 4 Pizza's for £20 and another one for 2 Pizza's for £12, luckily for us there was 6 of us so it worked out perfect. The Apprentice was good as well and we all agreed on who we thought should go which was funny, it was all round a good night.
Today has been busy at work but something really made me smile, Chez created her Just Giving page for the Great North Run and here is watch she wrote -
Hello friends, family, colleagues, housemates etc!
I am entering the BUPA Great North Run on behalf of Shift.MS which is a charity which helps to support sufferers of multiple sclerosis.
Last year, one of my best friends Jess was diagnosed with MS and she has found that Shift.MS has really been a help, enabling her to speak to other sufferers in what is really a very confusing and scary condition.
However, as she is so brilliant, she is organising a group of us to do the Great North Run to raise awareness of MS. Jess has had many weeks in the past year where she has had to walk with a stick, so this really is a massive deal. Most people think she is crazy for even considering entering herself, but she is... and so am I!
Those of you who know me well know that I have never done anything fitness related before, so this is a big deal for me too!
Any monies you can donate, either personally, or as a group with others, would be totally amazingly appreciated.
So please please please give what you can.
Cheryl x
She has always been a good friend to me and I am so happy that she will be with me on this adventure, it is getting scarier by the day but will be the most amazing thing I have ever achieved when I complete it. Here is her page if you are interested in sponsoring her (which would be amazing) http://www.justgiving.com/Cheryl-Anne-Lee I will be adding my page soon, I just have to think of the wording, I am not as good at those kind of things.
Right off just now
Loves
Jess xxxx
Last night we had our housemates from 110 round for Beer and Pizza Wednesday and The Apprentice. It was really nice to see everyone. Although living in a big house with so many people had it's trails and tribulations towards the end because of my illness, it was one of the happiest times of my life and I love them all and miss them. We ordered Pizza for Pizza Express, we had vouchers for 4 Pizza's for £20 and another one for 2 Pizza's for £12, luckily for us there was 6 of us so it worked out perfect. The Apprentice was good as well and we all agreed on who we thought should go which was funny, it was all round a good night.
Today has been busy at work but something really made me smile, Chez created her Just Giving page for the Great North Run and here is watch she wrote -
Hello friends, family, colleagues, housemates etc!
I am entering the BUPA Great North Run on behalf of Shift.MS which is a charity which helps to support sufferers of multiple sclerosis.
Last year, one of my best friends Jess was diagnosed with MS and she has found that Shift.MS has really been a help, enabling her to speak to other sufferers in what is really a very confusing and scary condition.
However, as she is so brilliant, she is organising a group of us to do the Great North Run to raise awareness of MS. Jess has had many weeks in the past year where she has had to walk with a stick, so this really is a massive deal. Most people think she is crazy for even considering entering herself, but she is... and so am I!
Those of you who know me well know that I have never done anything fitness related before, so this is a big deal for me too!
Any monies you can donate, either personally, or as a group with others, would be totally amazingly appreciated.
So please please please give what you can.
Cheryl x
She has always been a good friend to me and I am so happy that she will be with me on this adventure, it is getting scarier by the day but will be the most amazing thing I have ever achieved when I complete it. Here is her page if you are interested in sponsoring her (which would be amazing) http://www.justgiving.com/Cheryl-Anne-Lee I will be adding my page soon, I just have to think of the wording, I am not as good at those kind of things.
Right off just now
Loves
Jess xxxx
Tuesday, 7 June 2011
'Multi- tasking doing nothing well'
This isn't going to be a big post today because I am making dinner, writing a letter to my niece and trying to write this post, 'multi- tasking doing nothing well'. I am listening to the news and they are talking about IVF and whether it should be on the NHS, what a horrible thing to have to have to decided, there are so many people out there that would make amazing parents but can't get pregnant and not having a child puts such a strain on them but then there are drugs out there that could help a variety of sick people that are deemed 'too expensive' for the NHS. It is such a hard thing to have to think about and on both side of that fence there are good, valid arguments. I think there are certain things in this life that we have opinions on that if you take time to think about it you realise that really we don't understand we only think we know what is best. I get angry and want a medicine to make me better but then I couldn't imagine how hard it is to want a child and not be able to carry your own. I have that life adventure to come and I really hope that the powers that be allow me to have my own, naturally.
I had a good day today, I was worried because last night was tough for me, I thought I was going to have a hard day today. We went to the supermarket (Waitrose as it is nearest) and I spaced out, it is a weird experience because it is as if I am looking at things and situations but I can't make sense of them at all. The Man had said we should just go home after work but I had begged to go and get some salad stuff so he did, and it was tough on him. I forget that my illness and actions have an effect on him as well, it is tough for me but it is really tough for him watching it all and not being able to stop me or help me. What I am trying to do is remember to be careful with myself so that The Man doesn't suffer because of me. He is the best thing that has ever happened to me and his happiness and welfare is so important to me, which means I have to be more cautious and listen to him even when I want to be stubborn.
I am watching a documentary that my Dad told me to about Afghanistan it is called 'Our War: 10 Years in Afghanistan' it is about 3 Platoon, 1 Royal Anglian and it is brilliant it is about their tour and the death of one of their boys Chris Gray - http://news.bbc.co.uk/1/hi/uk/6555969.stm . If you didn't see it please watch it, this is one of things that I think we should all take a minute to remember the Brave men and women that go to these awful places in order to help keep us all safe and others free. Reading through this made me cry, please if you do one thing today just take a minute to acknowledge the fallen http://www.bbc.co.uk/news/uk-10629358
loves
Jess xxx
I had a good day today, I was worried because last night was tough for me, I thought I was going to have a hard day today. We went to the supermarket (Waitrose as it is nearest) and I spaced out, it is a weird experience because it is as if I am looking at things and situations but I can't make sense of them at all. The Man had said we should just go home after work but I had begged to go and get some salad stuff so he did, and it was tough on him. I forget that my illness and actions have an effect on him as well, it is tough for me but it is really tough for him watching it all and not being able to stop me or help me. What I am trying to do is remember to be careful with myself so that The Man doesn't suffer because of me. He is the best thing that has ever happened to me and his happiness and welfare is so important to me, which means I have to be more cautious and listen to him even when I want to be stubborn.
I am watching a documentary that my Dad told me to about Afghanistan it is called 'Our War: 10 Years in Afghanistan' it is about 3 Platoon, 1 Royal Anglian and it is brilliant it is about their tour and the death of one of their boys Chris Gray - http://news.bbc.co.uk/1/hi/uk/6555969.stm . If you didn't see it please watch it, this is one of things that I think we should all take a minute to remember the Brave men and women that go to these awful places in order to help keep us all safe and others free. Reading through this made me cry, please if you do one thing today just take a minute to acknowledge the fallen http://www.bbc.co.uk/news/uk-10629358
loves
Jess xxx
Nina Simone/ Feeling Good
Whenever life gets a little much for me I listen to this and I it makes me smile.
Monday, 6 June 2011
Busy Bee
This is just a quick note because I am on my lunch break at work. I have spoken to my boss and he has agreed to let me work Monday, Tuesday take Wednesday off and then work Thursday, Friday. I think to start with this will allow me time to rest mid week and make me more productive in the second half of the week. Hopefully getting into a good routine will help me get back fully soon and will not cause me to get sick again by trying to push it.
I am going to stop off at the Swimming pool tonight and register which will be good because I can then start my swimming regime and hopefully that will help me build up my left leg muscles. I have my zapper on and have been using it every 1 and a half, hopefull doing this will help build that muscle even when I am at work, fingers crossed anyway.
I have done our calender for 2012, to utilise all the Bank Holiday's and I will be putting them through at work as soon as I have sign off from The Man and his family. I have also printed off the DLA (Disability Living Allowance) form again which I will be taking to see my neurologist when I see him on the 30th June. I am going to organise my hospital/doctor book tonight so I am all organised and ready to see him.
Right lunch is over, so I will shove off but hopefully I will be back later on.
Loves
Jess xxx
I am going to stop off at the Swimming pool tonight and register which will be good because I can then start my swimming regime and hopefully that will help me build up my left leg muscles. I have my zapper on and have been using it every 1 and a half, hopefull doing this will help build that muscle even when I am at work, fingers crossed anyway.
I have done our calender for 2012, to utilise all the Bank Holiday's and I will be putting them through at work as soon as I have sign off from The Man and his family. I have also printed off the DLA (Disability Living Allowance) form again which I will be taking to see my neurologist when I see him on the 30th June. I am going to organise my hospital/doctor book tonight so I am all organised and ready to see him.
Right lunch is over, so I will shove off but hopefully I will be back later on.
Loves
Jess xxx
Sunday, 5 June 2011
Saturday, 4 June 2011
Moan then declaration of being a dork
So we have had a productive day so far, this morning I dyed my Mumma's hair, The Man went to see Jackie the Chiro and then I got my eyebrows waxed...awch! We then headed up to the Range, which I have to say is such an awesome shop, you can change the appearance of you house every week if you so wished, it is like a huge Woolworths but without music and DVD's. We headed into town and The Man bought me some electrodes to try and strengthen that thigh muscle I was telling you about.
This would be a good time to mention the Disability Living Allowance that is available in the UK, now I would never usually mention benefits but today it has made me a little cross. Since being diagnosed we have had to buy, shoe implants, walking sticks, tens machine, wheelchair, walker, neck support, stress balls for my hands, balance cushion, hypnotherapy, chiropractor, oxygen tank, physio therapy, having The Man travel with me all the time even when he isn't going where I am, health supplements, muscle toner, books probably more over the months. My point is that the Disability Living Allowance was set up to give people of all walks of life a little extra to compensate for the added expense that people have to fork out because they are sick, but it is really tough getting it and my application was rejected for reason up known to myself. It is something that I have been told that you just have to reapply and reapply but that infuriates me, it isn't as if I am going to have any thing different or that I am going to have been cured. I think it is a waste of taxpayers money all the admin fees of people applying multiple times when they have incurable diseases.
Enough of the moaning just thought I would share my thoughts. I have to say that if none of this makes sense I have been multi tasking watching Britains Got Talent and I have to say I am totally sucked into it, I will add some clips. Have to go now cause the winner is just about to be announced...shhh I never said I was cool! He he he!
Night night
Jess xxxx
This would be a good time to mention the Disability Living Allowance that is available in the UK, now I would never usually mention benefits but today it has made me a little cross. Since being diagnosed we have had to buy, shoe implants, walking sticks, tens machine, wheelchair, walker, neck support, stress balls for my hands, balance cushion, hypnotherapy, chiropractor, oxygen tank, physio therapy, having The Man travel with me all the time even when he isn't going where I am, health supplements, muscle toner, books probably more over the months. My point is that the Disability Living Allowance was set up to give people of all walks of life a little extra to compensate for the added expense that people have to fork out because they are sick, but it is really tough getting it and my application was rejected for reason up known to myself. It is something that I have been told that you just have to reapply and reapply but that infuriates me, it isn't as if I am going to have any thing different or that I am going to have been cured. I think it is a waste of taxpayers money all the admin fees of people applying multiple times when they have incurable diseases.
Enough of the moaning just thought I would share my thoughts. I have to say that if none of this makes sense I have been multi tasking watching Britains Got Talent and I have to say I am totally sucked into it, I will add some clips. Have to go now cause the winner is just about to be announced...shhh I never said I was cool! He he he!
Night night
Jess xxxx
Bad Girl
I am so sorry I have not been writing this week, I have had a bit of a tough one, my whole body has felt like a big sore bruise. This has taken some of my inspiration for writing way this week so sorry for not updating. I am feeling better now and will be updating more regularly. I wanted to thank everyone for reading my little Blog, you have no idea how much it means to me and how much it helps me through the tough times.
I had appointments with the Chiropractor and Hypnotist yesterday which was good, the Chiropractor was once again absolutely amazing. I love going to see her, it is the best treatment I have had since getting sick. I told her about the pain I get under my left knee cap that causes me so much pain, it is the pain that actually started all of this (well made me go to a physio, who sent me to a neurologist). I have had x-rays, MRI scans and it drained (sucked out the inside of my knee...YUK!) and no one has been able to tell me what is wrong with my knee, but Jackie (Chiro) did and it makes perfect sense. She explained that my knee cap is meant to sit away from the knee joint and is held away by your thigh muscle, because I have muscle deterioration in my left leg, the muscle isn't strong enough to life my knee cap, so my knee cap cartilage is rubbing straight onto my knee joint. Hence it hurts so much! I have difficulty exercising that muscle as the signals are not getting to my leg correctly so I am going to by an electrode tenser to help me build that muscle.
I have to go dye my Mum's hair just now but I will write again tonight. We are off shopping for our new flat today and I am getting my eyebrows waxed, which as you girls out there might know, is the worse thing in the world.
Loves for now
Jess xxxx
I had appointments with the Chiropractor and Hypnotist yesterday which was good, the Chiropractor was once again absolutely amazing. I love going to see her, it is the best treatment I have had since getting sick. I told her about the pain I get under my left knee cap that causes me so much pain, it is the pain that actually started all of this (well made me go to a physio, who sent me to a neurologist). I have had x-rays, MRI scans and it drained (sucked out the inside of my knee...YUK!) and no one has been able to tell me what is wrong with my knee, but Jackie (Chiro) did and it makes perfect sense. She explained that my knee cap is meant to sit away from the knee joint and is held away by your thigh muscle, because I have muscle deterioration in my left leg, the muscle isn't strong enough to life my knee cap, so my knee cap cartilage is rubbing straight onto my knee joint. Hence it hurts so much! I have difficulty exercising that muscle as the signals are not getting to my leg correctly so I am going to by an electrode tenser to help me build that muscle.
I have to go dye my Mum's hair just now but I will write again tonight. We are off shopping for our new flat today and I am getting my eyebrows waxed, which as you girls out there might know, is the worse thing in the world.
Loves for now
Jess xxxx
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