Blue Foot/Bladder/Shriek/Goodbye Blighty

I am being instructed to sit still and Blog, so that is exactly what I am going to do.  I once again have so much to tell you.  Firstly I will tell you about one of my lastest problems, my left foot keeps going a white/blue colour and my whole leg seems to be a lot colder than the other.  I am seeing the doctor tomorrow to have it checked out because my MS nurse isn't sure why this is happening as I am very active all things considered.  I am not getting too worried about it, I mean, there isn't anything I can do about it right this second so I am not going to worry.  The next issue is I keep falling over and hurting myself, nothing too serious but still unsettles me as I am a bit of a hazard to myself and possibly to others.  I am unsure what I can do about the falls so I think I will just keep my fingers and toes crossed that this is just a temporary annoyance.

I have to mention the lady outside my window today, she screamed (in a foreign language) down a phone for 2 hours, it was amazingly unsettling, but intriguing.  I thought it only fair that she got some air time on here as for anyone, even us crazy females, a two hour scream down a phone is good going.  I have no idea what she was screaming about and at times through the ordeal I had true sympathy for her, at other times I wanted to throw a bucket of water on her and for a while I wanted to go down and check she was ok.  Finally she waddled off through the park and that was the last I saw or heard from her, I am not so sure though that the phone call had ended, if not I possibly pitty the receiver of that call.  She will forever be imprinted on my ear drums and I think I will recognise that shriek if I ever had the misfortune of hearing it again. 

I also heard from my Continence Nurse today and she has referred me to the hospital to have Botox in my bladder, this will give me complete control and improve my life greatly.  I am very excited about this prospect as the urgency is really stressful and also distracting when out and about or at work and even at home sometimes.  I was told over the weekend about women who had Botox done in their faces over a significant time period had started becoming incontinent, smooth faces but wee problems...not good huh! I am going to make sure that this hasn't happened to anyone having it done in their bladders.  I will do enough research so that I am happy with my decisions.

It was Blighty's funeral at the weekend and I thought I was ready, I thought I had come to terms with the fact he was gone but obviously I wasn't, I cried and cried and cried.  He was a good friend and I have lots of memories of him which I will cherish.  I loved him like a family member and it broke my heart to see the man I knew and love slowly drift away.  Even though his death was unexpected I think those close to him knew that the day would come where we would have to say goodbye.  He lost his son to suicide years ago and it was something that he never came to terms with, he could never truly forgive himself for not being able to stop it.  Everyone knew how much he loved his wife and sons, it ripped them apart in a way that would eventually see the end to him.  It was a wound that could never heal in him and even though he was loved by many none of could help him.  I will miss him every day and just like Skelly, I will remember him with love and  happiness.

I will keep you posted with all my MS problems, all in all though life is looking better and better health wise, I really do think I am getting better, finally.

Night night for now.
Jess xxx

Twilight Zone

What a weird start to my day on Monday, an ex got in touch, someone who was in my life for a very very long time.  It was good to hear from him but I am not sure there is room in my life for our friendship now.  Although at times I miss him in the sense I see something and want to tell him about it, or I read a book I think he will like.  I don't actually miss him being in my life.  This is not the horrible ex, just to make that clear.  He is happily married and has a little boy now, I wish him all the best in life and it has been nice to hear that he and his family are well but that is where I am going to leave this one.  It has been a little like getting a message from my past and my life is now very different and is about moving forward, not looking back.

I had the doctors as well on Monday and I spoke to my MS nurse and the continence clinic.  What a lot of things to tell you all about.  Firstly the MS nurse, she is going to speak to my Neurologist and see if he will put me on Clonazepam to ease my leg spasms at night, I will see what he says, currently I am taking 1800mg of Gabapentin a day and 30 mg of Bacolfen.  I spoke to the Continence Nurse about looking into Botoxing my bladder, this will take away my urgency and give me complete control over peeing which will give me complete control of my life and hopefully will prevent me telling everyone about my toilet issues all the time, so you see I am doing this for you as much as for me (he he he!).  Finally I saw the doctor, Dr Dougall.  Every time I go to the doctors I go in with an enormous list, this time was no different, I brought up the meds for my spasming legs, I needed to get some micro enemas (I know but I have to tell you), I had to get ear drops as I have an infection in both my ears and finally I wanted to add some Umevate Cream to my prescription because I suffer from Eczema on my hands and back.  Successful on the whole.

When I left the doctors I walked around the corner to the bus stop but caught my foot and fell over.  It has been a while coming I think as I have decided to try and learn to walk with my walking sticks and have been braving it with just one stick which isn't really the smartest idea but I have to do it for my own peace of mind.  I didn't hurt myself but my pride was a little dented and my knee got a little bumped.  I got to work and did the rest of the day but my walking was a harder and my balance was not good either.

I took Tuesday  off and worked from home to see if I could shake this ear infection and let my walking improve.  Today I had a Psychology appointment so I used the day as a rest day.  I am going to see how I am tomorrow but all going well I will be in work.  I much prefer going into the office but it I am desperately trying to find the balance and not push it too much because I know if I do I risk relapsing and being off again which is just unbearable to think about.  I will be fine though, this time I am better at managing my condition.  Fingers crossed the ear infection passes soon.

Our new bed arrived today so I dismantled the old bed and The Man put up the new one.  It is lovely to have a bed that doesn't sound like it is falling apart and one that doesn't wobble every single time you move.  The new bed is a white metal with bed posts, so I feel like I am on the bed from Bedknobs and Broomsticks

                                    

We had Pancake Day last night round ours and it was lovely, there was 8 of us in total and it was a brilliant night.  I bought the ingredience for the crepes and everyone else brought their own variation of toppings and then we all shared so we had lots of lovely food and fun.

I have to go sleep now it is past my bed time.  Night night all, sleep tight xxxx
Loves
Jess xxxxxxx

Useful Documents

Click on the Links

Fatigue & Pee Diary

Exercise Diary  - Fill in your own set of exercises

Factsheet - Fatigue

Factsheet - Pain and Sensory Symptoms

Factsheet - Shrinking the Monster

Factsheet - Temperature

Factsheet - Tremors

Factsheet - Managing Bladder Problems

Factsheet - Memory and Thinking

Factsheet - Managing a Relapse

Factsheet - Living with the effects of MS

Factsheet - Speech Difficulties

Factsheet - Muscle Spasms & Stiffness

Factsheet - Claiming DLA

Factsheet - Sex, Intimacy & Relationships

Factsheet - Mood, Depression & Emotions

Factsheet - Quick Guide

Factsheet - Hearing Problems

New Business Cards for Blog

Front of Business Cards


Reverse of Business Cards

21st century, toilet talk and shopping

We are going up in the world folks, we are reaching out further.  I have just ordered 250 business cards and set up a new website and twitter account all in the name of memyselfandms (memyselfandms at homail dot co dot uk, and @msmyselfandms) I am going to try and get better at this social media malarky.  It is important for my Blog to be something that I am proud of and also that helps others know they are not alone and also that they can get in touch with me if they like, if anything I write helps.

I have been keeping something from you all and I can't do it anymore, it is something that I promised not to do and it is something that I will not do again. As you know at the start of the year I was very constipated, I was finding life pretty tough and very uncomfortable. After stressing about it I spoke to my MS nurse and the continence clinic they it was decided that I would try Peristeen.  I am not going to go into detail about it all but I wanted to let you all know that if this applies to you - there are things out there that can help.  This quote helped me decide to own up about it..
'Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there
till tears appear.'

There are things out there that can help, and if it improves your life even just a little then it is worth doing it.  Psychologically it was really tough to accept and to envisage having this in my life, but once I had done it just once all that worry and stress went away.  It improves my life 10 fold and isn't hard to do, isn't as time consuming as sitting for ages and not able to go, and because I am finally able to clear out the toxic waste I actually feel more energetic, free to do things without worrying and generally healthier.

I went off to Westfields shopping centre today with The Man and I didn't panic, which for me is very good, I am not the bravest, but I am getting better and better at it.  We got some pressies and cards for the month of March which is good, and every organised.  We had dinner late so we are sitting out and making sure that it has had time to digest a little before heading straight to bed, which means you folks get to humour me.  Sorry!

Right, I have to give up though, or I am going to end up falling asleep here on the couch, on the man.

Loves always

Jess xxx

Charlie Brooker - The Sun Poem

Got this from MSRC....Brilliant!

How we with MS feel.... When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below...[please note for personal safety do NOT actually do these] Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how you feeling now? Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles. Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm. Loss of Feeling in Feet and/or Legs: Ask a doctor for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down. TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily. Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, trousers and undergarments wear them for an entire day. Tingling: Stick your finger in an electrical socket - preferably wet. Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing? Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot. Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with bandage tightly then finally treat yourself to some spoiled food or drink. Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house. Spasticity: Hook bungee cords to your rear belt loops and rear trouser leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing. Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one... Bzzzzzzzzzzzzzzzzzz Balance and Walking Problems: Drink 100 proof vodka and then sit and spin in an office chair for 30 minutes, now get up and see what happens. Urgently Needing to Pee: We put a half litre remote controlled water bag and drip tube in your pants, we point out 2 toilets in a crowded shopping mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a toilet. Just for spite we may make that 20 seconds without telling you. Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too. Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet... Get a very large tattoo in your most sensitive area. Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed. Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all. Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine. Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appear. Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead... optional of course. Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms..... hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson. Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in. Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper. Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things. Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it. Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep. Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up. Swallowing: Try swallowing the hottest chilli pepper you can find. Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world. Then Finally... After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counselling is the answer. Author Unknown p.s and get everyone to say, 'but you look so well!'

R.I.P Blighty

I almost lost the reason I started my blog, but I am slowly remembering the magic it brings me.  I thought that I would never get sick again, I thought that I would live out my life as normally as anyone else.  I thought I had left the tough times behind me and then one day I was told I had MS.  At the time I thought, ‘well, that’s not too bad, I know people who are still fine and living life to the full with that illness’, I had no idea what was around the corner and I am glad I didn’t.  The outlook of dealing with this disease is terrifying and makes me cry a lot when I think about it, but the answer is don’t look forward.  Live now!  Make the best of what you have now and take what comes when it comes.  Do not try and predict your future because none of us can be certain of what is to come, if we did, none of us would cope well with it.

I remember the story in the film Krull, about the Cyclops.  The Cyclops people we like us once upon a time, two eyed and they made a deal that they would give up one of their eyes for the gift of seeing the future.  They became Cyclops but they were tricked and the only future they saw was their own death.  I think the reason I like this story is that is what the future holds for all of us and none of us truly wants to know that reality.  It would not reassure any of us if we could see into the future so I have decided to stop trying.  I am all about today, I am not going to worry about tomorrow because I don’t need to, it will come and when it does I will conquer it much the same as I have conquered today.

I am at work and I am listening to the bustle of the office and I love it.  I have sore ears (think I have an infection in them) but I am here and being a part of something is so important to me.  I succeeded in getting back to work and if you had asked me a couple of months ago if I would make it back here I would have said definitely not, I would have been trying to predict the future and I would have got it terribly wrong.  I have worked hard to be here and now I am going to work equally hard to stay here.

I got sad news this week, one of my friends sadly passed away.  He was one of the first people I became friends with when I moved down to England and has remained a good friend ever since.  He has been riddled with life’s problems for a long time and I think that his heart finally gave up on him.  He was 64 (I think) and he liked to call himself my second Dad  which I think he needed.  He lost his son to suicide and has another son that has grown up and is living his own life.  I will miss Blighty a lot, he was a character that I am glad to have had a short time with.  He was an old surfer from the west country and spent his life in the prison force, being part of the rapid response unit and dealt with many of the large Prison riots over the past 3 decades.  He will always be in my heart and I hope Skelly is up there to welcome him.  I will forever miss them.

That’s me for now

Jess

Babble and MS Life

I am very tired so this is going to be a short post but I wanted to let you know that I have been at work all day and it has been a great day.  It is sad as The Man is leaving tomorrow but as he is a contractor it is just part of the nature of his work, I am secretly hoping that he will be back in a few months.

I am really enjoying relearning my job, although it is hard it is something that I love.  I am working on getting back to my life and although it is happening slower than I would like, I am doing it.  I am working on being in work as much as possible and also being as productive as I can.  I am also trying to learn to walk with 2 or 1 sticks.  The stick problem is that my balance is greatly affected and I also have severe drop foot in my left leg so there is plenty to battle with on that front.

I have been asked to promote MS Life on here which I definitely will but what I will do for just now is add the info I have on it -

World-leading MS research to be showcased at MS Life in Manchester

The MS Society has announced that Manchester is to host its flagship national event, MS Life - Europe’s largest event of its kind – for the third time when it returns to the city from 14^th-15^th April.

The free two-day lifestyle event will take place at Manchester Central and is aimed at everyone affected by multiple sclerosis (MS), whether personally or professionally.

Providing an impressive programme of speakers, MS Life 2012 will allow attendees to learn about the latest in MS research from experts including renowned Professors Robin Franklin and Charles ffrench-Constant who are leading the MS Society’s groundbreaking Centre for Myelin Repair and the Edinburgh Centre for Translational Research.

There will also be a plethora of individual workshops covering a range of topics for visitors to attend, while the exhibition space will be split into separate zones. Within this space, visitors will be able to gain one-to-one advice and information from the Support, Employment, Mobility and Lifestyle Zones as well as meet the event speakers at the Meet the Experts Zone. On a further interactive level, visitors will also be invited to take part in activities such as yoga and pilates at the Get Active Zone, while the Spa Zone will offer the chance to relax with a massage or complementary therapy.

MS is a complex neurological condition with many symptoms which might include fatigue, vision problems and difficulties with walking. In the UK, over 100,000 people have MS.

Simon Gillespie, Chief Executive of the MS Society, revealed the popular event, which has seen around 7,400 visitors and over 200 exhibitors over the course of previous years, will be bigger than ever before. While the event is free, people are being urged to sign-up to confirm their place as soon as possible.

Simon says: “MS Life 2012 will have the theme ‘Get Active’, tying in with the Olympic year, so a range of activities will be on offer to celebrate this. In addition to research talks from world-renowned scientists, there will also be complementary health, relaxation and beauty sessions and exhibition stands offering support, information and advice on MS, so we are advising those hoping to come along to book their place early.”

A number of interactive workshops will take place during the course of the event, from advice on how to manage symptoms, such as fatigue and tremor, to how to keep active with MS through cycling and exercise. Also included in the comprehensive programme are workshops on childhood MS and how positive psychology can be of benefit.

A colourful Wheel & Walk fundraising event, following the streets of Manchester will allow participants to take in famous landmarks like Albert Square and Manchester Cathedral while raising money for the MS Society. The 6km route is suitable for wheelchair users and buggies and it is hoped families and friends will join in the fun. The past two Wheel & Walk events held at MS Life have raised over £20,000 for the charity and it is hoped that a significant amount of funds will again be raised this year.

Simon adds: “Anyone with a connection to MS will benefit from the range of information available during the weekend. This is the best time for people to find out what scientists are doing to beat MS as well as take part in the more fun aspects of the event.

“MS Life has made its mark in Manchester, cementing a strong presence in the North West region and we have received enormous support from Marketing Manchester which we are very grateful for. The event in 2008 gained support from Manchester United’s Danny Wallace, Ryan Giggs, Gary Neville and Paul Scholes so we are delighted to be back hosting MS Life in such a fantastic and responsive city.”

For further information about MS Life 2012 and to book a free place, please visit www.mssociety.org.uk/mslife or call 020 8438 0941.

2 Artist I really like

Lori Earley - New York Oil Painting Artist

 

 

Daniel Merriam - Biography

Some Songs

This song has been so relevant to me because when I hear it, it makes me think of the person I once was; fearless, sociable, active, loved to out and about and was full of dreams for the future.  It makes me think of who I have become; riddled with pain and discomfort, self catherising, unable to walk, scared of many situations, unsure of myself and highly medicated.  It makes me think of the old me talking to the me of now and me talking back.  It sums up some of the despair that I have felt over the past year and a half.

I might be getting better, or learning to cope better but one of the hardest things I have done in the past year and a half is rejoining life.  I am not the person I was, I am nothing like that person and I know that she is never coming back.  I didn't grow out of that person, I didn't move on or choose to grow up and stop being her.  Everything changed and I had no control over it.  I mourn the person I was as if she had died, as if she was someone I had once known.  Probably sounds ridiculous to most people but it is very real to me and although things change in everyones lives, sometime I find the changes in my life tough to cope with as they are not decisions or gradual.   

On a happier not I have a song for that makes me smile when I hear it and it doesn't matter where I am, how good, bad or terrible I feel it makes me smile and makes me think of The Man.  Through this whole ordeal he has been absolutely amazing and has given me so much strength and has taught me to love the new me.  (beware this is soppy)

This one is for my Brother who moved to America because he called me one day and said this song made him think of me.  

Finally, this song makes me think of my Mum & Dad because they have always been an inspiration to me and have always made me believe I can do anything and achieve anything.

One more then I and I will stop, this song always makes me smile

Cirque De Soleil and babble

Where do I start?  I have so much to tell you once again but I am unsure whether I am going to be able to tell you it all in one go.  We went to see Cirque De Soleil (Circus of the Sun)

It was absolutely amazing and The Man, Mum and I were absolutely stunned the whole way through it.  It is on in the Albert Hall, which in itself is absolutely amazing.  Unfortunately my Dad got stuck in Chicago and missed the show but I think we are all keen to see it again, it was absolutely amazing.  

Dad was away in America helping my Brother and his family move from Orlando to Chicago, around 1200 miles and about 20 hours driving.  I have 3 brothers, twins (7 years older than me) and an elder brother (9 years older than me), my brother in America was moving and my Dad and his twin went out to help him.  My eldest brother and his wife were away in Dubai, they absolutely loved it and the pictures look absolutely loved it.  I have 2 nephews and a niece and another nephew on the way.  It is tough us all be so far apart but we are still close so it isn't too bad.

Right I am babbling so i am going to quit there and try again tomorrow.  I have ear ache and it is driving me crazy, but hopefully it will be a little better tomorrow.  

Love xxxx 

Jess

Some Cool Pictures

Fampridine, Tysabri, Fingolimod

I went to work today with one stick in my bag and using one stick. The Man and I got the bus and  walked round the with just one stick.  I used the normal door into my offices today, it is a revolving door and I haven't been through it for about a year.  I managed to stay at work until about 16.30 and then came home. I am a little frustrated that I am unable to make it through a whole day, but I know that I have to be patient. I know that each day I make it in is another day that I have achieved.  I am happy to be back and although there are bumps and challenges to achieve my goals.   I will bare it and keep pushing and hopefully keep moving in the right direction.

Yesterday I emailed my Neurologist about getting on the trail for Fampridine and he is meeting with the Board on Thursday and he has promised to get in touch with me and let me know.  It is very exciting and I hope that it works, but it is doesn't, I haven't lost anything, but it is definitely worth a shot.  Saying that, I am glad that I didn't switch from Tysabri to Fingolimod because out of 30,000 people taking it, 11 have died.  To be fair the risk of death is higher on Tysabri but the success cases are higher and if you are going to risk death at all (with is very unlikely either way) it is better to risk it on something that you know for definite it works.

I am going to go on Buzz (the massage bed) now and then I am going to go to bed as I am a tired girl.
Love to you all
Jess

Marilyn, Heston, Pierpoint and more.

As you will see I have added a slide show of Marilyn Monroe to my blog and I thought I would tell you why.  I think she is absolutely stunning and her eyes tell me that peoples emotions and even possibly their souls can been seen through their eyes.  There is true happiness sometimes in her eyes and then sadness so real you can feel it when you look at her pictures.  I don't care about the person that she was, I don't care what she did or didn't do, I was not around then so I can not judge but she fascinates me.  She died at the age of 36 which is so young, in such a short life there are hundreds of photo's of her and I wonder if anyone at the time saw her smile change, her eyes die and what was going to happen to her.

The reason that Marilyn Monroe fascinates me is people say that they can tell how I am feeling because of my eyes.  I wonder if I am different from others because of this or is it that the people closest to me care to notice, can read me like a book because they know me, love me and want to see.  Did no one see the sadness in Marilyn Monroe's eyes, did no one care or was there simply no stopping the inevitable.  I wonder if I was ever that sad, could my path be changed or are we all pre-destined to a fate that we can not change.  Possibly my crazy brain thinking too much but that is the story behind her appearing on my Blog.

Some pictures -

  I think you can see happiness in her eyes

The sadness is in these photo's

Enough about my Girl Crush on Marilyn for now.

I have had a lovely weekend with The Man, we have done a lot of nothing and it has been amazing.  I love spending chill out time with him, he is the best company in the world.  We have talked about a million different topics and I love it.  I have recently found the magic of Heston Blumenthal, I have added a clip here in case you are unfamiliar.  He studied Molecular Gastronomy which is something I never knew about, but The Man told me about it and about going to his restaurant 'The Fat Duck' and tried the tasting menu (click on the link there to see), pretty crazy food but it is all about the flavours.  I love this stuff so I will be reading more into it, and I love that The Man opens my mind to millions of new things that I never knew about.  

  

We are currently watching Pierrepoint the film, about the most prolific British Hangman, Albert Pierrepoint.  It is a brilliant film about this man as it is an awful job to have done but it portrays him doing it with a great amount of humanity.  It is interesting to know a little about this as it is a subject that keeps arising, should we bring back the death penalty.  I personally think that it isn't a deterrent but it should be brought back to truly punish those that have done the unthinkable.  There are crimes that I honestly don't think people can be rehabilitated from, they are so unthinkable that there is no clear place to begin.  I am not for or against the death penalty, I don't claim to know enough about the subject.  Definitely worth watching though.

I should tell you that it snowed in London (and most of Britain) last night so we woke up to a beautiful white world and for the first time in ages London seemed quiet.  It is amazing how much the snow buffers sound and how peaceful the city sounded today.  It was lovely looking out of the window and seeing families playing in the snow, making snowmen, having snowball fights, it was lovely.  Midday onwards and the teenagers descended on the world and screamed, shouted, swore and were generally unpleasant.  I think that some teenagers really are from another universe and I am wondering if there is a 'Return to Sender' option out there.  I am all up for having fun but they are like monsters that attack in packs, it is horrible.  The family fun soon disappeared to make room for them, shame I would take a billion families v's 1 teenager.

It is infusion day tomorrow and it can't come a day too soon.  I don't know if I told you about last week when I went to the hospital and I was a week early, I was gutted, I honestly thought it was infusion time.  I am looking forward to it tomorrow though, I really am.  I almost feel like a drug fiend as I crave infusions but I know that I will feel so much better after it and I know that the more I have the better I will feel.  Life on medication is a commitment and it does take some getting used to but it is a million times better than trying to go it alone.  

I have been itchy all day, not noticeably so but just scratchy, but about 40 minutes ago I noticed a big patch of sore, dry skin on my shoulder and I have irrupted into a big itchy mess.  The Man has given me some antihistamine to calm it but now I am uncomfortable and sad.  I hate when I have reactions to thing it really suck, I have no idea this time what it is, I am hormonal so I have eaten more chocolate than maybe I should have but other than that I don't know. Going to go sleep it off 

Night night for now 

Loves 

Jess xxxxx

Stuff and writers block...

Again I am having writers block, I keep writing a few lines and then closing my computer and it is starting to get to me.  I wanted to tell you about some of the things I have been learning in my Psychology appointments.  I know that talking about things you discuss with your therapist is sometimes not the 'done' thing, but I think it is important.  We have worked through a lot and have used 2 theories to do so, the first was CBT (Cognitive Behavioural Therapy) and the second is Mindfulness.  I have been suffering for the past year with anxiety attacks (panic attacks) and it didn't matter what I did I couldn't shake them so I started seeing a therapist and since I have things have started to get better.  I think that sometimes there is  stigma attached to therapy but I have to say that it has been a helping hand, it has been a way of adding tools to my (hypothetical) tool box.

I have to learn something else to do with the toilet but I am not going to tell you too much about it because it isn't very pleasant but it is something else that will help improve my life and anything that helps me do that is welcome.  If anyone is particularly interested, due to having issues in the toilet department then please email me on the email address to the right hand side of my Blog, in my 'About Me' section.  I know that some of you out there will have similar issues and I just want my Blog to be somewhere that you can know you are not alone.  It is difficult to come to terms with things when they go wrong but the thing I am learning is every time I learn to cope with another facet of this disease I win, I am starting to feel like they are all little victories.  For those of you who don't have this disease, I am sure you can identify with times that life throws you a curve ball and it is difficult to adjust, that is what it is like but no matter what life throws at any of us, we learn, we adapt and we carry on.

Right going to jump on the massage bed and then head to bed.
Love to all
Jess xxxx

Quick post

So another exciting week in the world of Jess.  Firstly I will tell you that last night The Man and I went to the Theatre to see War Horse and it is the best production I have ever seen and I would advise everyone to go and see it, even if you are not a Theatre lover, I think you would be hard pushed not to love it.  We drove over there and parked in an NCP car park so the whole night went really well, and stress free.  

I was going to tell you all about the Research Day we went to on Saturday, it was really good and I have done something that is very unlike me, I have asked if I can be part of the NICE trail for a new drug called Fampridine.  Fampridine has shown to improve peoples walk who have MS, so it sounded like a drug that could help me out.  Here is some literature about it - http://www.mstrust.org.uk/information/publications/factsheets/fampridine.jsp
Feel free to leave some comments about it for me, if you have any opinions.

I am doing a half day today, home this morning and going into work this afternoon.  Everyone is so protective of me at the moment and I was banded from this office today but I feel ok, so I am going to break the rules and go to work.  I am loving being back at work, feeling back in the world and although I am not half as productive as I would like to be, I am enjoying doing what I can and hopefully things will fall into place soon enough.

Right better get too it.  Bye for now xxx