Just found out that Dr Elrington is leaving the NHS Trust soon and my case has been transferred to Dr Klaus Schmierer who The Man and I actually met at the Digesting Science night that we attended a few months ago. We sat and had a brilliant conversation with him over a glass of wine (well juice in my case) but I remember thinking whilst speaking to him, that if I didn't have Dr Elrington I would hope that he could be my Neurologist and guess what...he is now! Funny how this thing called life works out and I hope that he is as good (if not better) than Dr Elrington.
Monday, 31 October 2011
Friday, 28 October 2011
EVERYDAY IN EVERY WAY...
If you had told me my life would be like this years ago I am not sure I would have continued on but I am so glad that no one told me. On the outside my life may seem slightly unbearable but on the inside I have to tell you that it's really not that bad. I honestly can't express how hard this journey has been and how there are days that I honestly don't think I can go on but, somehow, somewhere deep in me there is a need to survive, there is a voice that wills me on and there is a strength I never knew I had. Some peoples life achievements is Uni, some its marriage, some it's children, some it's work, mine is every day I get up, every day I open my eyes and brave another day.
I am not your average 29 year old, but it doesn't mean I don't deserve my place in the world, it doesn't mean that I should not be heard. I am locked in a body that doesn't work properly but I am finding ways around it, I am going to keep going until I am back in the world, back at work and back to my life. I have to say that my Mumma is a wise women, I know that I have said this before but she gave me the best advise ever, she told me to...
'Get up, have a shower, do your hair, do your make-up and do it for yourself'
Every morning I waken in pain, feeling uncomfortable, normally have had a poor nights sleep and I still get up, shower, do my hair and make-up whenever possible and it makes me feel better in myself. It would have been easy to just give up on myself because of my disability but I couldn't because it makes me feel better knowing that I look and smell nice. I can't control many things about my body but my appearance is something that I can and will. I have lost the ability to do zips and buttons, I can't wear long trousers because I trip on them but that doesn't matter to me, I can wear a million and one different outfits to look nice without those complications so why worry about them, why stop trying. I feel better every time I put my make-up on and every time I can do my hair. I am Jess and I am going to get better...
EVERYDAY IN EVERY WAY I'M GETTING BETTER AND BETTER!
Signing out folks, till next time.
Loves
Jess xxxxx
I am not your average 29 year old, but it doesn't mean I don't deserve my place in the world, it doesn't mean that I should not be heard. I am locked in a body that doesn't work properly but I am finding ways around it, I am going to keep going until I am back in the world, back at work and back to my life. I have to say that my Mumma is a wise women, I know that I have said this before but she gave me the best advise ever, she told me to...
'Get up, have a shower, do your hair, do your make-up and do it for yourself'
Every morning I waken in pain, feeling uncomfortable, normally have had a poor nights sleep and I still get up, shower, do my hair and make-up whenever possible and it makes me feel better in myself. It would have been easy to just give up on myself because of my disability but I couldn't because it makes me feel better knowing that I look and smell nice. I can't control many things about my body but my appearance is something that I can and will. I have lost the ability to do zips and buttons, I can't wear long trousers because I trip on them but that doesn't matter to me, I can wear a million and one different outfits to look nice without those complications so why worry about them, why stop trying. I feel better every time I put my make-up on and every time I can do my hair. I am Jess and I am going to get better...
EVERYDAY IN EVERY WAY I'M GETTING BETTER AND BETTER!
Signing out folks, till next time.
Loves
Jess xxxxx
Monday, 24 October 2011
Power of Nightmares
Infusion number 3 today folks, done and dusted, here is to feeling better. I know I have been rubbish at writing and I will stop apologising for it, just been finding it hard to find things I want to write about. I thought I would just let you know that I am just about to sit down and watch Enron with The Man, I have included a trailer of it below if you are interested.
It is too early to tell how the infusion has effected me but I will update you in the days to come as I have been signed off for 2 weeks so have some time on my hands.
Oh I thought this might interest you as well, it is a brilliant BBC documentary that I loved watching.
The Power Of Nightmares - Baby it's Cold Outside (Episode 1)
The Power Of Nightmares - The Phantom Victory (Episode 2)
The Power Of Nightmares - The Shadows in the Cave (Episode 2)
It is thought provoking, obviously you have to make up your mind about these things but I definitely found it interesting.
Loves for now xxxx
Jess
It is too early to tell how the infusion has effected me but I will update you in the days to come as I have been signed off for 2 weeks so have some time on my hands.
Oh I thought this might interest you as well, it is a brilliant BBC documentary that I loved watching.
The Power Of Nightmares - Baby it's Cold Outside (Episode 1)
The Power Of Nightmares - The Phantom Victory (Episode 2)
The Power Of Nightmares - The Shadows in the Cave (Episode 2)
It is thought provoking, obviously you have to make up your mind about these things but I definitely found it interesting.
Loves for now xxxx
Jess
Thursday, 20 October 2011
Dignity or Not
Having your dignity stripped away every day, you would think was something that had a limit, but with my disease I am finding that it appears not. I can't believe that I am 29 years old and this is happening to me. I try to stay matter of fact about all of this stuff but it bubbles away beneath the surface and terrifies me. I shed a few tears today about it, after graphically talking about pooing, weeing and sexual activity it all got a little much. I know that all of this will improve again (sounds like I'm talking about the weeing, pooing and sexy stuff but I mean my health) but sometimes it is a little hard keeping a handle on it.
This experience has taught me a lot about myself and how I deal with things but most of all it has taught me how lucky I am in so many different parts of my life. So my health is littered with problems but Multiple Sclerosis, Asthma, Eczema and Arthritis but none of this out weighs the amazing Man I have in my life, my truly wonderful family I have, my true friends, my fantastic work that I love and everything else I am lucky to have in my life. I just have to hold on tight to these things and not let Monster consume me.
Loves for now
Jess
This experience has taught me a lot about myself and how I deal with things but most of all it has taught me how lucky I am in so many different parts of my life. So my health is littered with problems but Multiple Sclerosis, Asthma, Eczema and Arthritis but none of this out weighs the amazing Man I have in my life, my truly wonderful family I have, my true friends, my fantastic work that I love and everything else I am lucky to have in my life. I just have to hold on tight to these things and not let Monster consume me.
Loves for now
Jess
Tuesday, 18 October 2011
Continence
Yep, I am back to tell you all about the Continence appointment I have on the 20th (this Thursday). To most of you the thought of sticking something up your wee pipe will be terrifying and something that you pray you will never have to do...for me I pray to be taught how to do it. I know that this sounds mental but when you have to pee every 40/45 minutes through night and day you would beg for someone to help you make it stop. I think one of the most annoying elements of needing to pee so much is sometimes I can't even go so I have that urgency where I think I am going to pee myself and then I can't go...yep you guessed it is so unbelievably frustrating.
The pain is verging on unbearable without the help of my medication, currently I am taking 40mg of Baclofen (Wikipedia - Baclofen), 1200mg of Gabapentin (Wikipedia - Gabapentin) and 150mg of Diclofenac (Wikipedia - Diclofenac). I am also having monthly infusions of Tysabri (Wikipedia - Tysabri), which I am due to have my 3rd on Monday. I am also taking Vitamin B Complex, Vitamin D, Omega 3, Cinnamon, Turmeric, Cranberry, Vitamin C, Chlorella, Acai and Complete Neuro. Every morning The Man and I have a fruit smoothy with Spinach, Summer fruits and Health shake. I have also been trying to cook all of our food.
Anyway I am going to chill out just now.
Night night
Jess xxxxxx
The pain is verging on unbearable without the help of my medication, currently I am taking 40mg of Baclofen (Wikipedia - Baclofen), 1200mg of Gabapentin (Wikipedia - Gabapentin) and 150mg of Diclofenac (Wikipedia - Diclofenac). I am also having monthly infusions of Tysabri (Wikipedia - Tysabri), which I am due to have my 3rd on Monday. I am also taking Vitamin B Complex, Vitamin D, Omega 3, Cinnamon, Turmeric, Cranberry, Vitamin C, Chlorella, Acai and Complete Neuro. Every morning The Man and I have a fruit smoothy with Spinach, Summer fruits and Health shake. I have also been trying to cook all of our food.
Anyway I am going to chill out just now.
Night night
Jess xxxxxx
Monday, 17 October 2011
Cooking Experiment
So much to say but brain won't connect it is so frustrating, it isn't as if I can't get think of things to say but I just can't seem to be able to but it down in words. I will start off by telling about the dinner I just cooked, I am feeling a little better tonight but I also feel something brewing so not going to get too excited. Tonight I cooked Tuna Loin in a Wasabi, Ginger, Mustard and Garlic marinade with an oven baked potato and salad. I have never cooked Tuna before so it was a little experiment and I think it was a success because The Man says he absolutely loved it.
I really enjoy cooking so when I am well enough I love to get in the kitchen and make something nice for The Man. Unfortunately I can't taste things like other people so I am always anxious about what I cook but The Man seems to like it so I guess I can't be too bad at it. Tonights meal was a but of an adventure because the recipe I wanted to use was for flaked Tuna so I kind of made my own version, taking the spices, ginger and garlic. I am not entirely sure what I will cook tomorrow if I have a good day but whatever it is I hope The Man will love it.
Tomorrow I will tell you more about this relapse and my appointments but for now I must snooze.
Love to all
Jess xxxxxxxx
I really enjoy cooking so when I am well enough I love to get in the kitchen and make something nice for The Man. Unfortunately I can't taste things like other people so I am always anxious about what I cook but The Man seems to like it so I guess I can't be too bad at it. Tonights meal was a but of an adventure because the recipe I wanted to use was for flaked Tuna so I kind of made my own version, taking the spices, ginger and garlic. I am not entirely sure what I will cook tomorrow if I have a good day but whatever it is I hope The Man will love it.
Tomorrow I will tell you more about this relapse and my appointments but for now I must snooze.
Love to all
Jess xxxxxxxx
Craig Colton opens a Jar Of Hearts - The X Factor 2011 Live Show 1 - itv...
Since being ill I have really gotten into X-factor and this year this guy is one of my favourites.
Friday, 14 October 2011
Beth Hart - Weight of the World - LIVE
This song is for my Mumma and Pappa. Love you both billions xxxxxx
Wednesday, 12 October 2011
Relapse Girl!
Yep...you guessed it...I am relapsing again. Rubbish, yes, painful, definitely, going to survive, most definitely yes.
This is a terrible time for both The Man and I but we are making it. It is hard to motivate yourself when every time you breathe it hurts and every time you move it is excruciating but I have to. Once again I am fighting my own body to make it from one day to the next but the difference this time I am not getting down about it, I am just going to get better.
This is a terrible time for both The Man and I but we are making it. It is hard to motivate yourself when every time you breathe it hurts and every time you move it is excruciating but I have to. Once again I am fighting my own body to make it from one day to the next but the difference this time I am not getting down about it, I am just going to get better.
Sunday, 9 October 2011
IKEA magic!
I don't know if any of you are familiar with the one and only IKEA but if you are, you will understand this post. OH MY GOD! I honestly think that people should have to talk a marriage strength test before walking through those doors, here are some questions I would ask...
1. How would you describe your marriage?
a) Strong & Love filled
b) Good but a little shakey
c) On the edge
d) We actually HATE each other
2. Do you have any common interests?
a) Yes
b) No
3. Do you have common taste in furnishings?
a) Yes
b) No
4. Are you children trained in public appearances?
a) Yes
b) No
5. Do you understand the concept of baby changing areas?
a) Yes
b) No
6. Can you speak in a tone audible to the rest of society?
a) Yes
b) No
I truly believe that by asking these question IKEA would save it's staff so much headache and would generally boost their sales because normal people would want to go and spend more time and money in the store. I would obviously suggest only allowing the people who successfully answered (a) to most of these questions as to allow any other options in reduces the enjoyable experience had by other customers.
Blah Blah Blah! I know, I am being judgemental and horrible, but honestly, go to your local IKEA on a Sunday afternoon and watch relationship after relationship crumble before your eyes. They should use this as a form of conception, send people to IKEA for an afternoon at that is sure to help sort out the booming world population.
I will say though that The Man and I got round the store in good humour and bought some lovely things for our little home. I had a great afternoon with The Man on IKEA safari, not something that I think either of us will have to do for a while but all in all great. We did buy pillows which have the WOW-factor! I know, I know but they are temperature controlled, memory foam and awesome, in fact I am off to have my first night with them...this is going to be amazing.
Love to you all
Jess
1. How would you describe your marriage?
a) Strong & Love filled
b) Good but a little shakey
c) On the edge
d) We actually HATE each other
2. Do you have any common interests?
a) Yes
b) No
3. Do you have common taste in furnishings?
a) Yes
b) No
4. Are you children trained in public appearances?
a) Yes
b) No
5. Do you understand the concept of baby changing areas?
a) Yes
b) No
6. Can you speak in a tone audible to the rest of society?
a) Yes
b) No
I truly believe that by asking these question IKEA would save it's staff so much headache and would generally boost their sales because normal people would want to go and spend more time and money in the store. I would obviously suggest only allowing the people who successfully answered (a) to most of these questions as to allow any other options in reduces the enjoyable experience had by other customers.
Blah Blah Blah! I know, I am being judgemental and horrible, but honestly, go to your local IKEA on a Sunday afternoon and watch relationship after relationship crumble before your eyes. They should use this as a form of conception, send people to IKEA for an afternoon at that is sure to help sort out the booming world population.
I will say though that The Man and I got round the store in good humour and bought some lovely things for our little home. I had a great afternoon with The Man on IKEA safari, not something that I think either of us will have to do for a while but all in all great. We did buy pillows which have the WOW-factor! I know, I know but they are temperature controlled, memory foam and awesome, in fact I am off to have my first night with them...this is going to be amazing.
Love to you all
Jess
Friday, 7 October 2011
Number Stations...WOW!
Whilst we were watching Fringe last night there was an episode that incorporated Number Stations, I had never heard anything about them, wow! If you are interested at all in it look it up, here is a link - NUMBER STATIONS it is absolutely fascinating. I have also found a Radio 4 programme about it which is also very interesting, it is only 30minutes long and definitely worth a listen if you have the time - Tracking the Lincolnshire Poacher - BBC Radio 4
Thursday, 6 October 2011
Big Ramble Bamble
Pulling my thoughts out of my head and writing them down is so unbelievably difficult at the moment, it is so hard to love to write and not to be able to find your words. I feel like God (if there is one) is playing a horrible joke on me, giving me a love of writing and then taking away my words, giving me a dodgy bladder and walking problems, letting me get my dream job and then making me sick, somehow I think he is laughing at me. Oh and there is something else which I believe he is laughing at me with, the worlds reserve of helium is running out which means if we don't find some more...no more MRI scans for Jess (or anyone else for that matter). Tell you something, if God (if there is one) is having a good laugh at me now, wait until I meet him, I am definitely going to kick him right where it hurts.
Life for me has become the size of our 2 bedroomed flat in London, it is safe here, I can manage here and I like being here. I dream of going to work, Monday to Friday, 9-5.30, I crave the feeling of annoyance that I spend more time at work than doing other things I enjoy. I miss the challenge of solving puzzles at work, talking to a loads of different people about hundreds of different topics. I miss racing for public transport, shuffling along with the masses at rush hour, drinks after work, nights out, getting drunk and getting home. I miss a million different things that I bet most of you never give a second thought, funny how life turns out sometimes.
The Man are sitting in watching 'Fringe' tonight - http://www.youtube.com/watch?v=qBoD5MuUmC8
we are on the third series and it is brilliant, we both love it and it just keeps getting better. It is nice having quiet evenings in with The Man, I forget sometimes how much I like Autumn and Winter when you can nest and get comfy for the dark nights and cold weather. I am definitely a March Scottish Baby, I love the colder weather and snow. I thought I would show you where I am from, the cold but beautiful place I am from, Helensburgh.
Although I love my home town and miss belonging, I don't think I'll ever go home, I don't think I will ever live there again. Strange that the setting of my home town is perfect, but my life there wasn't. I miss my best friend who is still up there but other than her, there is nothing left there for me, just memories.
I am just babbling, I know but I am just writing what comes to mind, trying to get my flow back, so please bare with me. My Best Friend has just put a lovely message on Facebook, thought I would share this because it made me smile ear from ear.
“Today you are You, that is truer than true. There is no one alive who is Youer than You.” Dr Seuss
She is lovely and always makes me smile.
Night night for now xxx
Loves always
Jess
Life for me has become the size of our 2 bedroomed flat in London, it is safe here, I can manage here and I like being here. I dream of going to work, Monday to Friday, 9-5.30, I crave the feeling of annoyance that I spend more time at work than doing other things I enjoy. I miss the challenge of solving puzzles at work, talking to a loads of different people about hundreds of different topics. I miss racing for public transport, shuffling along with the masses at rush hour, drinks after work, nights out, getting drunk and getting home. I miss a million different things that I bet most of you never give a second thought, funny how life turns out sometimes.
The Man are sitting in watching 'Fringe' tonight - http://www.youtube.com/watch?v=qBoD5MuUmC8
we are on the third series and it is brilliant, we both love it and it just keeps getting better. It is nice having quiet evenings in with The Man, I forget sometimes how much I like Autumn and Winter when you can nest and get comfy for the dark nights and cold weather. I am definitely a March Scottish Baby, I love the colder weather and snow. I thought I would show you where I am from, the cold but beautiful place I am from, Helensburgh.
I am just babbling, I know but I am just writing what comes to mind, trying to get my flow back, so please bare with me. My Best Friend has just put a lovely message on Facebook, thought I would share this because it made me smile ear from ear.
“Today you are You, that is truer than true. There is no one alive who is Youer than You.” Dr Seuss
She is lovely and always makes me smile.
Night night for now xxx
Loves always
Jess
Obsession of Jess...
I thought I would share my obsession with you, some girls love shoes, some love clothes, I love perfume, it is the one material thing that makes me happy, I wear perfume everyday regardless of how bad I feel or how tough life gets. Perfume makes me feel better.
25 in total and recently I have finished 4. I do get through them so although you might all think this is a little much, I promise I go through them.
Tuesday, 4 October 2011
Losing my words....
I am finding it tough to get the inspiration to write, it is not that I haven't anything to say it is just that the words do not come to me. I find it so easy to write usually but lately I haven't found my words, I still want to share this experience with you so please if you can bare with me I would love for you to stick with me. It is weird, I walk around the house narrating to myself what it is I want to write and when I sit down to type it is all gone. I will always promise to try my best to put something down but if it is a few days between posts I apologise.
I have had a problem with my hands lately, I woke up the other night and my fourth finger (the one next to the pinky) was lying across my hand under my middle finger and forefinger. My hands were so cramped up and spasming that I couldn't move them. It is so painful and it is so debilitating, take away your hands and you are pretty helpless. Along with this my hands have been weak and it has been hard to do just about anything, which is frustrating and upsetting, but it is just another bump in the road to my recovery. I have also had trouble with my legs lately, they have been deteriorating at a rate that is concerning even my Physio, so it has been tough not to get upset about that. I truly believe that this will get better with time, when the Tysabri has had a chance to work, I just have to put on a happy face and keep believing.
Anyway I will leave it there and I will hopefully be back tomorrow. I have got a dictaphone on my phone so I can make notes for the Blog, so fingers crossed.
Love
Jess xxxx
I have had a problem with my hands lately, I woke up the other night and my fourth finger (the one next to the pinky) was lying across my hand under my middle finger and forefinger. My hands were so cramped up and spasming that I couldn't move them. It is so painful and it is so debilitating, take away your hands and you are pretty helpless. Along with this my hands have been weak and it has been hard to do just about anything, which is frustrating and upsetting, but it is just another bump in the road to my recovery. I have also had trouble with my legs lately, they have been deteriorating at a rate that is concerning even my Physio, so it has been tough not to get upset about that. I truly believe that this will get better with time, when the Tysabri has had a chance to work, I just have to put on a happy face and keep believing.
Anyway I will leave it there and I will hopefully be back tomorrow. I have got a dictaphone on my phone so I can make notes for the Blog, so fingers crossed.
Love
Jess xxxx
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