Stuff and more stuff

Sorry for my absence lately I have been really uninspired to write and that is terrible I know, I feel like I come on here and just apologise about not talking.  I have had an issue with my legs over the last while and I think internally I have been worried and upset about it.  I don't know what is worse, thinking that something is going wrong with my legs or knowing it.  I am trying not to let it get me down because there is nothing I can do to stop what fate has in store for me, I can only hold my head up and hope that whatever the future has install for me I can handle it with grace and dignity.  I am such a lucky person in many ways I think it is always important to hopefully focus on those things and not let the rest of it get you down.

I am sitting listening to Tracy Chapman and I honestly think it massages to my soul when I take time out and listen to her, she has a focus that reaches inside and soothes me.

The Man is just about to do my ear candles because once again my ears have been bothering me somewhat so hopefully this will ease the discomfort.  I am also hoping that when I see the specialist about having my tonsils out it is straight forward, I do honestly think that my ear problems are mostly coming from my throat.  I don't know if I mentioned the throat stones thing but I will hopefully be getting that sorted soon.  Wow you should see what just came out of both my ears, I would take a picture if I didn't think it would gross you all out.  I have 5-6 big chunks of hard wax that have come out so hopefully my ears will now feel better.

We are watching News Night and they are talking about the Euro Crisis and whether Greece will leave the Euro and what will happen to Spain.  I must say that I feel absolutely terrible for the Greek people, I don't believe the normal people like us caused Greece's problems, I don't think they should be left out in the cold and made to suffer.  I am also at the point that I believe that we should all be ashamed to call ourselves European if we let the Greek people into a situation where they are starving and giving up their children because they can not look after them (obviously not all people but figures of this have risen).  I think we should all (as nations) have some morality and help each other out, by pass politicians (because more often than not they make the situations worse) and try and watch out for each other.

Night night for now
Jess

1000 Faces of MS

Look Deeper

Short and Sweet

I have been away in Spain for the past week so please forgive my quietness.  We were away seeing The Man's Mum and it was absolutely amazing.  We spent the entire time lying by the pool, swimming, reading, eating and putting the world to rights.  I think it was exactly what both The Man and I needed, vitamin D overload in a stress free environment.

I have to tell you all I am watching last weeks Question Times and I have to mention that I didn't know Griff Rhys Jones before now but I really like him.  Very rarely do I watch this problem and see someone that I agree with but this guy is straight talking, balanced and articulate.  I have tried to find some clips of him on the programme but sadly I can't find any.  He was speaking on a variety different topics but I thoroughly enjoyed watching it.

I am not going to stay long, I will be back soon and talk properly, sorry I am just finding time an issue and concentration, but I promise I will be back.

Loves
Jess xxx

Cooking

Sorry I have been quiet again,  I have been so unreally exhausted, it has been a little tough again over the past week or so.  I have been cooking though, it has been a while since I got adventurous in cooking so it has been good - this week we had -
- Breaded sesame white fish with wasabi mash & salad
- Tagliatelle with chilli & sausage meat
- Pork & Mushroom Stroganoff with brown rice
- Leek and Smokey Bacon Risotto
- Haggis & Apple (Parmesan) Crumble with Mash and Leeks

I have also made a summer fruit crumble which was lovely.  I have another menu this week which I will cook for The man and I.   I love cooking I like taking care of The Man as well, he works very hard and looks after me so well that it is my way of paying him back.

Prince Charles doing the weather

The Puzzle

Fampridine assessment

I had the assessment for Fampridine today, it is the drug that could help me walk.  I was assessed by a lovely girl, she did a variety of tests, from filling out questionnaires, a medical examination (reflex test, pin test, eye test and limb strength test) there was also a lot of walking involved and she filmed me walking when I was tired to capture the effects of what happens.  It was really good and she was extremely positive about my chances of getting the drug, if they can get funding for it.  She said that I was a perfect candidate which made me beam, giving me a little glimmer of hope.

I did find out something that made me sad though, I found out that my MS Nurse is off on extended leave which filled me with a little dread.  I really hope that she is one ok and two (selfishly) will be coming back because she is absolutely amazing.  I often think how lucky I am having her  as my Nurse and I know her other patients feel the same.  She has been the one person that I have learnt to trust and I follow her exact words and advice because she is always proved right.  Anyway I will not stress too much about it, I might speak to the hospital and other patients and see if we can organise some wine or flowers to be sent to her.  I will check out the possibilities, I think it important for her to know how important she is to us and that we appreciate everything she does for us.

I ordered a new camera, one that is a little simpler than mine one at the moment but I thought I could play around with it and get back in to photography, especially as it is coming into summer.  I used to take loads of photos, mostly of street art, I absolutely love street art (not graffiti) here is some example of what I love - 

So you can see, very different from graffiti.

Never, Ever Give Up. Arthur's Inspirational Transformation!

The King's Speech & The Major

Wow!  We have just been to see The King's Speech, the West End production and it was brilliant.  Unfortunately it is set to close because it is not drawing in the audiences, which they have put down to being too close to the release of the film.  Lots of people have seen the film and possibly don't want to spend the money to see it in the theatre so soon after seeing the film.  I can tell you all now, it is brilliant and anyone who like the film would absolutely love the play.  The actors were fantastic, so unbelievably talented, their acting sucked me in and I was completely lost in the story for the entire play.  Anyway I will stop gushing about the play, if you get the chance go see it.

We are waiting to here who has won the London Major elections and I have my fingers and toes crossed for Boris Johnson.  It has just been announced that Boris Johnson is our new Major which is fantastic because the other candidates were rubbish.  I have just watched the speeches of the losers and Jenny Jones from the green party gave a disgusting speech along with Ken Livingstone.  I don't think I will ever vote Green if they put such poisoned people up.  Anyway, I am a believer in voting but I am completely disillusioned in by elections and politicians.  One thing that annoys me in the House of Commons is that they use the phrase 'My Honourable Gentlemen', I think this is laughable because I reckon you could collect every bone in that place and you would be hard pushed to find one that would be classed as 'Honourable'.  Rant over.

Right I am off to bed, I have not been sleeping because of my bladder, wow it causes havoc in my life. anyway, nothing a night sleep (well fingers crossed about the sleep) won't fix.  Sleep tight xxx

Jess

The King's Speech

Just to let you all know I am off tomorrow night to see The King's Speech.  Fingers crossed I feel a little bit better tomorrow but think I am going to have a rest day tomorrow if I don't sleep properly tonight.  Anyway, fingers crossed.

Night night
Time for BBC 'Question Time' (one of my favourites)
Loves
Jess

Positives and stones

I have had two bits of good news this week, firstly I had an Urology appointment, I know, toilet talk again.  I have had problems with my bladder for a few years now, I self catheterise because my bladder doesn't empty properly.  I also have the added complication that I suffer from urgency really badly, never knowing how long I have, which is very rubbish.  Anyway back to my point, I had an appointment with Urology and after The Man's help explaining that the medication I have tried has had really bad effects on me (like me not going for a No.2 for 11 days), so they have agreed to do botox in my bladder.  If you would like to read a little about this check it out here - Botox in the Bladder.  The waiting list is 4 months but it is amazing to finally have a solution to this problem.  First bit of good news.


I received a phone call from my MS Nurse, Freya on Tuesday and she informed me that they would like to do an assessment to check my suitability for this new drug Fampridine.  It has shown in the test to improve MSers walking, in honestly only in 30% of people but that is a 30% extra hope that I am willing give.  The assessment is next Tuesday and is 3 hours long and then I have to wear a monitor for 48 hours so it is an intensive process, I just hope I am picked.  On the plus side Freya and Dr Schmierer seemed positive at my chances so I will just keep my fingers crossed.  I guess we will never know unless I try.  Second bit of good news.

I have another weird thing to tell you which isn't that pleasant but remember that honestly thing we agreed on.  I have had an issue with my throat/tonsils since I was about 13 and it is finally coming to be a real issue.  I believe that I have pitted tonsils and I get tonsils stones which is very uncomfortable, causes me to choke and then I get these horrible white stoney things that I cough up.  I know you are thinking...yuk!  Just think how I feel.  Well I have a doctors appointment tomorrow about this and I have even put one of these horrible little things in a sample pot to take with me.  I am hoping that with my private medical care I might be able to get my tonsils out because this issue has been going on far too long.  There is no treatment or no effective treatment to this problem so I will see what Dr Dougall has to say about it.  Bet he is going to love my little gross sample pot.  I will let you know what the verdict is.

Oh and finally I had my last appointment with my Psychologist, Rachel and she gave me my results from the Neuropsych tests we have been doing and my cognitive skills on the whole are ok.  I did score slightly lower on tests that required me to concentrate on different things at the same time but I knew I had issues with these situations anyway.  She also gave me a goodbye letter to close our sessions and it said some lovely things which I really appreciate.  I would definitely recommend seeing a Psychologist because it has helped me so much.  I am sad that our sessions have come to an end but I do feel ready to take a leap of faith in my own ability to manage life without her.  Another postive this week.

Right my back and legs are killing me so I am going to go lie down on Buzz, to ease some of the pain.  All round though life looks better and better each day.

Love to you all
Jess xxxx