Life

Well folks I am back at work which is amazing and I am loving it.  I have to make notes all the time because I am finding my memory is not once it once was but saying that I am trying to get a long without worrying too much about it.  It is all about finding the ways round obstacles and not letting them trip.  Work is good because it is challenging in millions of different ways but if I am at work it means that Monster is at bay so all in all it is a winning day.

I have just had the second round of Botox in my bladder which has really helped me keep to a normal life.  It is a nightmare having urgency and then not being able to go, also having urgency every 40 minutes is tiring through the night and day so I am a massive fan of the Botox.  I also now have to remind myself to go, quite the opposite from before.

I am just rushing off down to my Mum and Dad's to see my eldest brother and sister in law so I shouldn't really be writing to you but I thought I would just nip on for 2 seconds and say hello.  I am going to wear my onesie down in the car so if you are all lucky I will take a picture and let you see how ridiculous I look.

Bye bye for now.

Loves
Jessica xxxxx

Barbados

I should quickly mention that we went Barbados at the beginning of the year, it was amazing!  It was just The Man and I and it was magical.  I thought I would not bore you with a big details account of our holiday but put on some pictures for you to see.

This was our amazing hotel room,  we stayed in Garrison in the converted Rum Stores.

The Man and I had just swam at sunset and it was perfect.

Every day at sunrise they brought the race horses from the islands race track down to swim.

The Man and I on a boat on the way to go down in a submarine (my Daddy was a Submariner) 

This is a Cruise liner and I just thought it was a gorgeous picture.

This was a view out of the submarine window, we went down 150ft to the bottom of the reef.

This bell was given to the islands first church by the Bell Foundry in Whitechaple.

This was a view from our beach

Another one of the horses swimming, they were stunning.

Thats it xxxx

Changing to Lyrica

I have over the past 2 weeks gone from taking 1800mg of Gabapentin to taking 225mg of Lyrica.  I was having a couple of weird side effects and I was waking up with intense pain in my spasming legs.  So my wonderful MS nurse suggested I start taking Lyrica, it is still patented so it is really expensive but can be more effective so I felt positive about the change.  I actually don't like messing with my medications, I find it is such a fine balance but if my MS nurse tells me that it is a good idea then I trust her.  I actually trust her completely and I know that I can always talk to her and be honest about how the medication is affecting me or when I need something else.  It is so important to have people around you that you trust, medical people are often scary because they have the knowledge that you wish you had so that you could know how to piece yourself back together.  The thing that I think we all forget is, we have the feelings, we know what it feels like, we are what they have studied so our input is essential.

It get me down when I can not go to work because of my illness but this was a side effect, this time my disease was not flaring up it was just an adjustment of meds.  This meant that although I have been really frustrated about not getting to work I did have a slightly more calming experience this time because I knew it was only temporary and that I would soon be back on top of the world.  Today is the first day that I feel clear headed, I have not taken my afternoon tablets yet but hopefully I will stay on that track and feel good.

I thought I would also share my reasons for writing this stuff down, it wasn't to make people aware, it wasn't to educate anyone, it was simply one girls story about living with MS and how dealing with life on top of that can sometimes be a little tough.  I think sometimes I forget the purpose of my words, I forget why I transferred my diary onto a blog that others could read and the purpose originally was to allow my friends and family to read it to know how I was doing and also to hopefully comfort others who have MS, knowing that others go through it as well.  It is good to remember this, clear the confusion and hopefully move on from here and get back into writing because I really miss it when i don't write.

Over and out for now
Loves
Jess xxx

Dear Elizabeth

Hello,

I have decided what might be making it so hard for me write.  I always found writing to you so easy and then I was told I had to let you go.  I did a session where someone told me that the relationship I have with you is not healthy and that I should do the right thing and let you go.  I think this might have been the worst advice someone has ever given me.  I have gone through my life knowing that you were there, knowing that this path I walk has two sets of footprints in the sand.  I have spoken through writing to you for more years than I can remember and that is something my life needs.  I am sure the advice was meant with good intentions but I am not ready or willing to give this up.  Hopefully figuring this out will free up my mind and allow me to write to you like I always have.  Thanks for waiting for me.

All my love
Jess xxxx

Week 11 done

Another week done!  I have had a good week, busy but good all the same.  We are heading down to my Mum and Dad's for a flying visit tonight so I can't wait to see them.  I think it is strange when I hear people talking about their own parents and say things like 'oof my parents are coming to stay for TWO whole days, I am not sure I will cope', I honestly don't know of a time when this thought has crossed my mind.  I could hang out with my parents all the time and they definitely don't annoy me, they are not over bearing, they are not hard work, they are just great company and fun.  All things considered I could spend all the time in the world with them and love every second of it.  Saying that, they might not quite feel the same, I am a little hard work.  Actually saying that about my parents, The Man's parents are great as well, I think we are just very, very lucky in this life.

I had a very funny conversation with my MS nurse today, telling her all about me losing my temper at the Urology Registra.  This guy was a total plum and I honestly have great doubt that he attended medical training, I am doubtful that he even took a first aid course.  He had the people skills of a feral child and after being rude and dismiss he soon learnt who was boss.  I got my point across so I was happy.  I was meant to have a Neurology appointment on Wednesday next week but he unfortunately had a funeral to go to in Germany so I said I would see him when he is free.  No bother though because I feel better than I have done in years so no dire need to see him.

Anyway I must get going or I will never get there.

Love to you all
Jess xxx

Gingerbread

We just got back from a lovely evening with friends but I just thought I would let you all know that I am doing ok and I am still a happy bunny. I made Gingerbread men the other day for my work and decorated them so that was cool. I have had a few good days and I am planning to have a few more xxx

Archie

I just thought I would try typing to you on Archie i-Pad. The Man got me him for Christmas and I absolutely love him. I must got to sleep because I am tired and have work tomorrow but this is turning out to be a good test. Sorry if there are mistakes in my posts, just getting back into writing again.

Loves
XxxxX

p.s I have had to change the name of this post and the format of i-Pad because the blog was being spammed.