finally an update!

Sorry I've been so lazy and not updated this for a few weeks, it's been a combination of being super busy but also have nothing of interest to write about!
My friend in oz messaged me this morning saying she wishes I had updated because she likes knowing all the news!
So here we go........
The last two weeks have been pretty dull all in all! We have had some great low key evenings with friends involving too much wine drinking, eating yummy food and playing mine and hubbies new favourite game Articulate! This is so much fun especially when you've had a few drinks! I really loved playing it on Thursday round Laura's. It was me and Laur on one team and Hubbie and our friend Paul on another. The boys are both football mad and their strategy for winning was relating every answer to football! I'm not sure if that's cheating cause Laur and I had no chance of guessing their answers! Cheats! :)

Friday was interesting as we went to an audition for a game show! Was really fun! We were in a group of about 20 pairs and had to answer questions in the group and Hubbie and I rocked! There were about 20 questions and we answered 13 of them! Not sure if we've got through  but will keep you all posted!

Yesterday we went to chessington with my nephew Harvey, our friends and their little girl Matilda.

 Was a really fun but tiring day. We went on pretty much every ride (thanks MS for having one use, QUE JUMPING!), the kids had a great time and H was such a good boy we bought him a buzz light year toy which has been a joy this morning ;}

My favourite bits of the day we the bubbleworks, hubbie got soaked when he leaned back into the water jets to avoid me and H splashing him, the monkey swing cause H&M demanded they sat on the outside not realising they would get soaked! The poor things were dripping when they got off!
Below are some pics from the day

Right got to go as we are skyping another friend in oz! this has been a bit of a non flowing post but will update more in the week! xxx

What a rubbish blogger I am!

I realised this morning I have not updated this for ages! There hasn't been an awful lot going on so thought it would be dull!
Anyway, here's what I've been doing:

Last Saturday we went to hubbies cousins for a BBQ and it was such a great day! Their two little girls are gorgeous!

They are both so smiley and lovely and it's brilliant now J is talking a lot. She's such a clever little girl, at a very young age, she can already count to 15 and knows her ABC, she's a child genius! She is also very funny. It was time for her bath and she didn't want to have it so her dad said to her "if you're not clean the flies will get you" so off she went and when she came back we all said how lovely and clean she looked. J replied with "No flies on me!" brilliant! Her little sis H is fun too, she's such a happy little thing and it's quite funny to watch how sibling relationships develop. The way they are around each other now reminds me of when me and my sis were little. I used to get so annoyed with her pinching my things, but now I couldn't be without her. She's been on holiday for the past two weeks and I've really missed our daily catch ups. Hopefully J&H will grow up to be just as close.

Went to see the Neuro on Thursday and was one of the most positive meetings I've had with her. We talked about my medication and how I can go on Tysabari, which is great as my friends are on it and it seems to be so good! She also said she is not going to be as tough on steroids administration whilst I am off the Rebif so that is good! You are only meant to have them at 6 month intervals max, so it's good she will let me have them if I need them at shorter intervals..

Oh, almost forgot! I passed my driving theory test last Friday! I've booked my practical now and have to really gear myself up for this! To help, hubbie has said he will buy me a car for my 30th, which is brilliant, can't believe I might be driving soon scary!

OK, this has been a little boring, but I promise I will do something exciting next time! xxx

Boring!!!

Sorry I've not updated this all week, it's been a rather dull one!
I've been getting over my cold, going to work, revising for my theory test and sleeping! All rather dull really!
I think the only exciting thing that has happened this week is our drains getting blocked which has been a nightmare! We've had this a couple of times in the flat but not nearly this bad! We had yucky water over flowing from the toilet and the sinks in bathroom and kitchen blocked! Nightmare! We had to go to our friends to use the loo, bless Laura she was really good!
After 6 HOURS the management company that look after our flat sent someone out, and that took ages as they had helpfully covered up access to the drains with some green shrubs. I really hate our management company, they take ages to fix anything, do the job shoddily and expect the owners (i.e us) of the flats to be grateful that they came out at all!! Grr! They shall be getting a very nasty letter from me that is for sure!
Anyway, enough ranting, I need to carry on my revision ready for tomorrow! Will update and let you know how I do!

I've been useless

I started writting this blog to show having MS doesn't mean the end of the world, and yet I have done nothing but moan and be dull on here for the past few weeks. Sorry people!
I've just been having a bit of a tricky time of it lately. First there is all the stuff with Mum, which has been on my mind constantly and we have just found out that the cause of it may have been down to her Dr! Mum got put on the pill last month as she was told she was too old for the injection (how is 50 old?) and my sister did some research into the one she was on and it quite clearly states that this should not be given to anyone with a high blood pressure (which mum has) and should not be given to people with Neurological conditions such as MS! And the real joy of all of this is that one of the side effects may be causing strokes! I am so cross at mums Dr, I have a good mind to go down there and tell all the other patients exactly what they did and what happened! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

Secondly, this cold I have has been a nightmare. What started off as a sniffly nose has turned into a full blown chest infection resulting in antibiotic taking. It has also scared the heck out of me. When I get a cold my walking gets affected a bit but it's still manageable. This time has been different. Monday and Tuesday were very scary as my ankles were turning in on themselves and I couldn't stand or walk. I was so scared. I just started thinking "what if the rest of my life is going to be like this?" it broke my heart and all I could do was cry into my husbands shoulder and babble.
Thankfully, since Thursday, my walking has been great and I even did a Driving lesson this morning but it has really made me think, I need to do more exercise, I need to learn to relax and not keep going when I am exhausted.
So life has been a b***h these last few weeks, but I'm thinking onwards and upwards. No more being down, only up! We are seeing mum this weekend so that will be good, and I'm planning on relaxing so that I can get on with things in my usual sunshine way xxx

There's always payment for having fun!

Had a fab weekend! The lovely KJ came round Friday, we went to Bingo, came back to play cards and did too many shots as Kels and I were rubbish at cards!
Saturday was spent in a retro Em & Kels way. Husband went to watch football, KJ and I stayed in our pyjamas all day watching John Hughes films, the Hollyoakes omnibus, drinking loads of tea and getting Thai take away! Such a lovely day! The problem with growing up is that you don't get to spend weekends doing nothing anymore
:(. There's always housework, or family to visit, or weddings, Christenings, friends kids birthdays etc etc!
Would be wicked to go back in time and say to 18 year old me, enjoy doing nothing, you'll be busy with a million things in 11 years time and never get a chance just to be lazy!

The problem with having this much fun doing nothing, is my body finally relaxed and caught a cold, grrrrrr!
So I am keeping this short and sweet today so that I can avoid my runny nose dripping and try to sleep!
Night all xxx

What a week

This has been one heck of a crazy week, sorry about not updating this!
My mum had a stroke on Friday. This was very scary. You always assume that parents are indestructible, I know mum has MS too, but shw deals with it and just had to modify life. No biggy, but this has been different. For a start it has effected the left side of her body. Her MS affects the right side, so she was not able to move really. Her face dropped and her left leg would not move. I'm not sure if the MS made it worse?
There was also talk of it being an MS related stroke. They thought one of the legions from the MS had broken free and caused a blood clot. They have since found this not to be the case and that it has been caused by her arteries in her neck being furred up.
This is interesting as the studies into MS and the CCSVI treatment they have been doing, suggests that this is a common problem in MS and the treatment they have been doing to clear this up, is similar to what they were going to do to mum.
Unfortunately, they will not be doing this treatment anymore. Instead they are giving her crystals. I have no idea what this treatment involves but hopefully it will sort it out for her. It will be interesting to see if this treatment will do what the CCSVI treatment does for MS.

Sorry to keep this short but I'm exhausted! The lovely Miss James is coming round tonight and I need to get my strength up! xxx

ok, full festival debrief!

What an amazing weekend! I did something I thought I would never do again and it was amazing!
Before Mystery S, I loved a good festival. Wandering in a field for a weekend, wearing flowers in my hair, seeing loads of cool bands and drinking more cider than is good for you was my idea of fun! After MS, I thought my festival days were over. How on earth could I possibly wander round fields when my legs barely let me wander round the shops? Thankfully husband and friends are even more "don't let this beat you" than I am and as a team effort I conquered the big chill!

First hurdle- Camping. Now my wonderful husband has never really been one for camping. I on the other hand loved nothing more than my DoE awards and festivals, getting muddy, sleeping in what is basically an over sized plastic bag and getting down with nature! Putting up the tent was going to be tricky anyway with my reduced mobility and doubly so with Ants broken arm! But we did it! The tent came up pretty fuss free and stayed up all weekend- result!

Second hurdle- Getting around. As mentioned before my legs get far too tired to wander for ages so we took the dreaded chair. On the whole, this wasn't too bad. Poor ant had difficulties pushing me around cause of his arm, but our lovely friends took it in turn to push over the super bumpy bits and we did it! I would like to say thanks to the people at big chill for letting us use the backstage metal paths and also add more of these next year, makes life so much easier!

Having the chair also helped when there weren't enough seats for us all! I always had one and it made life much easier!

The only really difficult bit we had was getting to the monkey bar. My lovely friend Lucie does the PR for the whiskey brand and we wanted to get up there to see her and do the graffiti T's that she had organised (see pics). This was one heck of a mission but we did and it was well worth it! (Thanks for the cocktail too Luce)

Third possible problem- drinking. I used to be able to keep up with the boys when drinking but MS has meant I am now the worlds cheapest date and drinks go straight to my legs! Silly amounts of whiskey cocktails and pear cider meant by about 2pm on the Friday i was ready for bed!

A little bit tipsy (can you you tell? ;)

We managed to get back to the tent, I had a sleep and was good to go again!It was a lesson learnt and I paced myself for the rest of the weekend!

We saw loads of fab bands, won the music quiz, did rockyoaki, I danced a bit, spent loads of time with our lovely friends and am still exhausted from it all!

I'm gonna put loads of pics below so have a look and a giggle!

Claire and Nik, my standing support team!

Gregg and the monkey cocktail bar- mission to get to, but drinks worth it!

deep in music quiz thought

drinky drinky!

My gorgeous boy

Pulling off festi fashion!

Singing my heart out!

The winning team! working the red visor look!

Thanks for this crazy stranger!

Ant and our music quiz prize!!!

Was such a fab weekend! Def do it again next year! Now I'm off to bed, still catching up on sleep! xxx

back from the festival!!

And in one piece! I'm too tired to go into massive detail about it now but will update tomorrow properly. Heres a photo to show some of the fun we had!

A&E but not for me

Ok, so it's 10 past one in the morning. I was really looking forward to an early night but instead I'm sat in A&E cause husband boy may have fractured his wrist at football. I don't mind the hospital we're in as Ant proposed in this very same x-ray ward. I do mind being exhausted! I wish they had some kind of system where if your partner has an illness that requires ridiculous amounts of sleep so she could function properly, you could Que jump. Alas they don't. I think I might write to someone and suggest this. Blogging to kill time when already tired is probably not the best option but hey go. Thought I'd share this with you all. Right off to see if I can find a comfy sleeping position on stiff un-comfy a&e chairs zzzzzzzzzz

what to wear?

OK, so this post is not technically about MS, more my own vanity, but it's important to me!

We're going to the big chill next weekend, and I really need to think of what I can wear!
Part of my job involves looking at all the fashion that everyone is wearing at the festivals and it's filling me full of dread!
My festival uniform used to be the scruffiest clothes I owned, that I wouldn't care about getting muddy/covered in beer/ripping etc etc. That's not acceptable these days though! I need to think of well planned outfits that look good, bang on trend and are not too try hard!
I should be relishing in this as for the first time ever I shall be going by car so space is not too limited (although Husband may object to a car full of shoes!), we will be staying in disabled camping which is quite plush by festival standards and I shall be in my chair for a lot of it so will not need to think about shoes that are suitable for bouncing around and walking in mud!

However, by nature I am not a summer dresser. I am happiest in winter when I can do skinny jeans, sparkly top and killer shoes, all tied up with a lovely coat.
My forays into summer dressing at festivals have so far involved going to see blur at Hyde Park where denim shorts, vest and sunnies were fine

and seeing our friends band do an outside gig where I thought I would do (fake) wayfarers, straw Trilby and parka

The first look was fine, but the second not so good as a Trilby does not suit me and the wayfarers are not kind to a large nose!

Oh what to do! I know this is very self obsessed and I should be thinking about more important things but I'm pretty good MS wise (thanks steroids!), life is being kind and I feel the need to indulge the silly girly side of me! I have pulled out loads of clothes that I need to start whittling down to make some sort of festival chic from.

I will try to update when I have some time and let you know how I'm going!

Also, we were told the other day that we can hire a mobility scooter at the festival which would be cool, but they want £90 for the pleasure!! so I am going to be in the silly chair for most of it, when all I'll want to do is dance around. I have tried this before and I don't half get some funny looks going from being in a chair to doing a half dance/wiggle thing! I worry people think I'm faking!

Oh well, rambled enough for one day!

xxxx

acupuncture- quite weird!

Had a good day today! Steroids kicked in, walked without using my stick most of day wooo woooo! And i did my first bit of actual designing today! I moved from buying to design about 8 months ago, and I have just been doing admin stuff. I am now actually doing my bit of design, we shall see how it goes and if it was the right move! I'm not mega happy, bit scruffy but let me know your thoughts!

These are meant to be back pockets on jeans with Butterfly applique! They need to be better but not bad for a first attempt!

I also had some more acupuncture! This was the first time I've seen what the needles looked like as i got the boy to take pics! I always thought they would be bigger and look less like odd old fashioned needles! It does work though and since I've been having it my back pain has virtually disappeared! So much than taking more meds, I swear I would rattle if people shook me!

Apparently my tattoo works as a good starting point for my physio and where he puts the needles!

Tomorrow will be the first day I have done exercise for ages! Going to aqua aerobics which will be cool. Will let you know how I do tomorrow! xx

I'm back in the game!

Thank goodness for steroids! This weekend has been fab!
Friday night we went out for a friends birthday, had cocktails and a giggle!

Cocktails in buckets yum!

Me, Laur & Shelley

Ant & Si

Saturday we went to the pub for another friends birthday, non alcoholic drinks but lots of giggles

Me and the gorgeous boy

Sarah Justine and me

Today we went to the park, did the Winnie the Pooh trail

 and practiced setting up our tent for big chill! It's really silly but steroids lift me so much! I've walked everywhere (sometimes without my stick!) been a really happy girl and I just generally on top of the world!! woo hoo for meds!!!

woo hoo the fug will be over soon!

I'm getting steroids today! I know I shouldn't get so excited, but my walking has been so pants of late and I am sooooo tired all the time steroids will help massively!

I really find that while I'm am off the meds for baby making practice, steroids are the only thing I can take that makes me back to normal.

I will probably be updating this on a steroids buzz for the next few days so I apologise in advance for any rambling!
Also to cheer myself up I bought new shoes!! Once the steroids kick I shall be walking in pretty heels again!

being a bit wobbily does have advantages!!

The whole rubbish week so far has been boosted by the fact that we are going to the big chill festival! We have 2 4 1 tickets, disabled camping and it will be fun! First festival since being told I have mystery s and I'm sooooooooooooooo looking forward to it!!! xxx


Now to find my festival fashion......

What's it all about?

I've not been at work for the past two days cause the Mystery S has decided to play up. Nice. I'm exhausted, my legs feel like someone has tightened all the muscles with a wind up key, my eye aches (weird to describe but I get a dull ache in my eye and feel it would be better if I could just take it out!) and I keep getting this weird kind of claw look to my hand if I use a computer mouse to much.
I spoke to my MS Nurse this morning and she's going to speak to my Neurologist on Thursday to see if I can have Steroids. In the mean time, I have to stay put and rest like a good girl. BUT IT'S BORING!!!!!!!!!!!!!!!!!
I find it impossible to sit still, relaxing is not in my vocab unless it involves a facial or a massage.
I know people that would love to be ordered to rest, but how can you rest when you can see bits of housework that need doing?
Maybe I'll start adding net to an other of my 50's style dresses? But then that will probably bring on the claw. sdcljahdvcilahdcvlonhdlv jbn! That's how I feel!
And I'm inflicting it on the poor readers of this. Sorry guys xxxx

AAAgggghhhhh

I've just written a whole post about my weekend and the silly computer crashed!!!!!!!

OK so start again!

On Saturday we were due to be going to our friends for a BBQ to celebrate their engagement. As we live in North London and Di & Josh live South East, we knew this was going to be a mission as my legs have been poop all week. So off we set, wheelchair in toe (hate hate HATE that thing!) and full of high hopes for the day!
Unfortunately, by the time we got to London bridge, the BBQ had been cancelled as Di was poorly!

Ant & Kels disappointed faces

As we had come across London and Greg's little boy was really hungry, we decided to make the most of the day and find a place for food and drinks!

As I haven't been to South London for ages I decided to be a bit of a tourist!

Not sure what this is but I liked it!

Top of St Paul's

The Globe

After finding a good park, we settled down to an afternoon of Football, Piggy in the middle and Champagne drinking (sorry Di & Josh we will buy you some more!)

Me & KJ

Kel tackles Gregg!

We also found a fun use for the silly chair! Playing tip up and seeing how close we could get to the floor was fun! Joe loved it! I think other people in the park thought we were weird!

I was also really chuffed with the present Kels bought me!

There is a bit of me that has always wanted to be a 50's house wife: baking cakes, making clothes and giving my friends some home made pressies! Kels has got me one step closer to this with this gorgeous book! I hope all my friends are ready for gifts of egg cosies and appliqued aprons!

The picture below sums up how I felt at the end of the day

Its days like today that I really wish I didn't have silly Mystery S, and that I could run around, play football and not have to sit in a silly chair to get around on bad days. But as much as I hate it, I also have to be thankful that it's not all bad! I have fab friends who buy me AMAZING presents and I still have a laugh!

xxx