I'm not drunk...I've got MS

The wonderful thing about Tysaberi, is Tysaberi's a wonderful thing

2012-02-08T01:55:00.000-08:00

Since my post last week things have been very good!
I had my second Tysaberi infusion and I'm feeling amazing!!
This medication is not meant to improve my MS, only reduce my relapse rate, but so far its making me feel brilliant. I am able to do things with my legs that I've not been able to do for ages (that sounds weird (and possibly a bit rude!) but I'll explain). I've found for the past few years that I have been unable to move my legs without man handling them, so crossing my legs meant grabbing my knee and putting it on top of the other, getting in and out of the shower meant lifting my legs over the bath, getting in and out of the car the same thing (you get the picture). But last night I was able to lift my legs to cross them, get in the lotus position and many others! I think my husband was getting a bit bored after the 30th time of me going"look baby, look! I can do this!!!!!!" but he's very happy. Another thing I've noticed is that I'm not dragging my feet as much either which is great.
Like I said before, I'm not sure if its the meds or if its a combination of being on a good medication encouraging me to do my exercises and just my general mind set of being positive now I'm back on meds, but I feel brilliant & that life is back on track now!!
I think a huge sign off difference is my reaction to the weather. Normally snow is a nightmare for me with the cold, but I really feel OK.
Buying a pretty new dress in my pre baby size for a friends wedding might also have helped!! I'll post pics of that when we've been!! xxxxxx

I am a bad bad bad blogger!!

2012-01-31T06:02:00.000-08:00

OK, so what has happened since my last post? Loads!!!!
My lack of posting is down to many reasons. If we start in June from my last post...........

My gorgeous little baby decided that they wanted to try and make an early appearance! Because of my low amniotic fluid levels and a couple of scares with babies growth I had to go to hospital every other day for scans of the babies heart rate and in to see the consultant once a week to decide on the best plan of action!!
This was a very scary time and there were a few occasions where we thought our little love was going to be a few months early!
Thankfully we ended up seeing a different consultant who was amazing and stopped our fears.
Eventually, 3 weeks early I gave birth to a beautiful little girl!

Ellie

She was so tiny when she was born, a teensy 5lbs 12oz and felt so fragile! Its was such a change in lifestyle when we got her home! We knew it would be, but I don't think either myself or my husband realised how different our lives would be!!

Those early days were a massive learning curve, from feeding and the times she wanted food, nappy changing (especially the early poo explosions!), bath time, sleeping, playing, carrying etc etc so much to learn!! Its been good fun though!

And now, the tiny person, who wasn't even half the size of her moses basket when we brought her home, is big enough to go into her own room, can turn over, chatters away in cute baby noises, sleeps through the night and is learning to eat solids!!!

Everything flys by so quickly!!!

And now she's bigger, we have decided that little girls have far too much stuff and we need to buy a bigger house!

I think my husband and I are incapable of just relaxing, we are always doing something!

I need to write about the trials of being an MS mummy, but that will be for another post :0)

Now I've settled into mummyhood I am going to keep up with this blog and make sure that I do a once a week update at least!! xxxx

I am a bad bad blogger!!

2011-06-01T04:20:00.000-07:00

There's just too much going on at the moment! Its crazy!
OK so what have I been up too?

Well no 1, growing like you wouldn't believe! My bump feels massive but baby has only just started to put on weight so I'm just going to keep on expanding! How on earth is there going to be enough stretch in my skin?!?!?!?!?
We have another scan next week which I am very excited by! I guess in a way, I'm lucky I have MS because all of my friends who are preggers ate the mo, have had their final scan and won't see baby until its born but I've got three more! I'll update this with new pics once we've had it xxx

The things they don't really tell you about pregnancy!

2011-05-01T12:14:00.000-07:00

I have read so many books, have lots of phone apps and spoken to everyone I know that has had a baby in the last few years and there are some things people don't really mention a lot about:

1. The hair!! And I'm not talking about the super thick head hair growth, I'm talking tummy hair! Its crazy but I think my stomach is now rivaling my husbands for hairyness. Thankfully its Blondie not dark, but if it catches the sunlight, I can seriously rival chewbacca! I'm really hoping it all falls out after the birth otherwise I shall not be wearing a bikini without some serious waxing!

2. Constipation: all the pregnancy books mention this but none go into the horror of not being able to "go" for four days!! I know this is hardly conversation for polite society, but it's a nightmare! Its equally bizarre for me as my MS tends to have the opposite problem for me so this is weird! I'm trying really hard to put this in nice ways but its not exactly nice conversation!!

The other thing i am finding hard because there is no info on it is dealing with ms & pregnancy. I honestly cant be the only woman to get pregnant whilst having ms and yet there is nothing to help me through. A lot of the symptoms i am getting in pregnancy are similar to ms symptoms. The legs cramps which I'm getting at the moment are apparently common in second trimester but I get these anyway with MS and its so much harder to wriggle the cramp off when your legs are bad. The back ache as well is killer! How do you deal with a painful back when not only is it the pain but you also get odd spasms in it too! gggrrrr!

OK enough moaning! Tomorrow I am going to reclaim this website for its original purpose, showing MS does not mean you give up on life. For all the moaning I have actually done a lot in the past few weeks so I'll tell all tomorrow! xxx

wow, i can access this at work now!

2011-04-13T07:39:00.000-07:00

Have just discovered that I can access this at work! Wicked!
OK so bump update! Well the bump is really making itself known to the world! It's huge and I'm only half way through! I'm now just waiting for the 20 week scan and to feel pip kick for the first time! Come on pip, kick!! I need to add some of my bump watch pics that my husband has been taking on here, that way the world can see the size of it!

On another note I am really starting to struggle clothes wise which is making the silly vain side of me cross! I love a summer dress and have so many pretty ones. Unfortunately they are all sitting in my wardrobe calling to me "oh but Emmy, pleeeeaaassseee wear us! We love the sunshine!" Instead of pretty dresses though I am still wearing jeans and leggings and tunic tops! I want pretty summer dresses!!!!! And summer sandals with heels!! Obviously with pregnancy you shouldn't wear heels too much but the joy of pregnancy AND MS is that this is not even an option :( Silly MS legs are being absolute pains at the moment! I swear someone has a little key and are tightening up all of the muscles in my legs making it hard to move them. If this is you and you have the key, please stop!!

Oooo not sure where that rant came from! OK on to happier things!

Had a lovely weekend! Went to Hampstead heath with hubby and two friends and their little boy for a picnic. It was so much fun and such a lovely sunny day (I even got a bit sun burnt, oops!). I love the summer so much, especially the change in mood it brings on most people! Everyone is so happy and smiley! It's really odd, because pre MS I wasn't a lover of summer. Pasty pale skin, hayfever and an abundance of freckles used to make it less than enjoyable for me. Since I've had MS the summer is my favourite! I used to love the Autumn & Winter. Going for long walks in the ever changing colours, stomping in the snow and how magical it made everything look! Now I hate it! I think this comes from the dreadful affect the cold has on my legs and also the fact that I can't do those long walks anymore and as for snow.... jeeez, I quite like being upright!
Ooh I'm in a funny mood today! This post has been all over!
We have friends coming for dinner tonight which is very exciting! They are pregnant as well and due a week before us!
Loads of love xxx

I really don't think I had realised how hard this was going to be

2011-04-04T03:50:00.000-07:00

I don't want people to think that I am ungrateful or don't want to be pregnant but I don't think I quite comprehended how hard this was going to be.
My legs are as always the main issue for me. Before we started trying for a baby, they would always be the things that caused me the most problems but it was managable and I was a lot more mobile and able to keep them moving. Having been off meds for 2 years now I can really feel the change in them. They are so stiff and heavy and really painful, especially at night. I think that is what has inspired this moany post! Due to the pain in my legs I am not sleeping at all and waking up in agony needing to stretch. Obviously lack of sleep is not good at any time, even less so when your body is using everything it has to grow a new life!
I hate being a whinge as that is just not in my nature but I'm so tired and in so much pain I just want to scream!!
I need to keep focused on why my body is like this and the great thing that will be here in 5 months which I know will make all of this totally worth it. I think I'm just having a down day and need to perk myself up!

On the positive side of things, my lovely husband painted the nursery yesterday!! This is no mean feat in itself as it has taken us a while to decide on a colour! At one point we had 12 patches of different paint on the wall and my baby/designer brain was not happy with any of them! "thats nice, but too grey" "yuk, hate that too dark!" "hmmm ok but it's too much on the grey side, needs some yellow in it" I think Ant was close to just painting it white and telling me to shut up! We eventually settled on a lovely shade of pale yellow which is great for either a boy or girl. The really daft thing about it is, when Ant was getting out all the painting equipment, he found the paint we used in the hallway, and guess what? It was practically the same colour we had gone for in the nursery! typical! xxxx

so, what's going on in baby growing world?

2011-04-02T04:25:00.000-07:00

Well, I'm getting a lot bigger, the sickness has stopped and we've heard the bumps heartbeat again!!

Lets talk about my size first: this bump is huge! I love that you can now see that I am pregnant and not just getting fat. It's quite an odd feeling though. I keep imagining what it is going to be like in a couple of months time when I won't be able to see my feet. I'm also waiting to start feeling those magical kicks. All of the books/I-Phone apps we have say that I might be able to start feeling them from this week and I think I might have done but not sure! I think I want the bump to give me a huge kick so I know for sure!

Hearing the bumps heartbeat again was so magical. It was quite scary though as it took what seemed like an age to find it! According to Ant my face went from super happy smiley to almost in tears until they found it! It's such an amazing sound when they did. The best way I can describe it is like being under water hearing a really fast drum beat. Its amazing!!

I would say the only thing causing me problems at the moment are my legs. Not being on my medication for the past two years is really starting to show. My legs feel really un co-ordinated, I am tripping up quite a bit and my legs are so heavy it's really hard to lift them sometimes. Whilst I've been off the meds, when I have had these sort of relapsing symptoms, a course of steroids has done me the world of good and got me back to a cope-able level. Obviously taking steroids whilst pregnant is not an option so I have to just get on with it. I feel really awful wishing that I could have steroids because I know that they could cause problems for the baby but I really wish I could walk with a bit more ease. Am I mean? I keep worrying as well about when bump is here. If my legs stay this bad, will I be able to carry bump around the house? Will I be able to take bump for a walk if my legs are playing up? Will I be able to drive bump to Dr's appointments? When would I go back on meds because I really want to try and breast feed but you can't take meds at the same time so I'll need to wait until I've finished feeding. It's a really weird feeling because there is the majority of me that wants to do everything I can to make sure our baby is as well looked after whilst I'm growing her/him but there is also a tiny selfish bit of me that wants to make sure that I'm OK and able to carry on with my life as best as possible. I don't know if it's pregnancy hormones or what but I'm so up and down at the moment. I'm not sure where my head is. I'm excited but nervous, scared but really looking forward to the challenges. Pregnancy is such an odd yet so natural state to be in!

I love it though and really can't wait for pip to get here xxx

What a lazy lazy lazy lazy lazy lazxy blogger I am!!

2011-03-17T05:02:00.000-07:00

Wow, I knew I hadn't updated this for a long time but didn't realise that time was 6 months long!!
OK, so what has happened in the last 6 months? Quite a lot actually! First off I passed my driving test!! Yippee! Hooray!! Woo Hoo!!! It was second time lucky but I did it! Very pleased with myself for doing it. It was no mean feat what with feeling a relapse coming on at the same time, but I did it and now have my lovely little car to go driving in! Vroom Vroom! Beep beep!

OK so apart from driving what else has been going on?? well not much..........unless getting pregnant isn't much!!!!!!!

After 18 months of trying we are now expecting our first little baby!!! I'm so excited!!!

We've had the three month scan and all looks good, this baby like to wriggle which is a good sign, it was having a good move around in the scan. It's due in September, will probably be born by elective c-section as my neuro thinks it will be too hard to give birth naturally due to the effect not being on meds whilst trying has had on my legs and back. This is a shame a I'm a bit squeemish about operations but as long as pip (when we found out I was pregnant s/he was the size of an apple pip, the name's just stuck) come into to the world safely & healthy I don't care!

I won't pretend that the last 18 months have been easy, I've really struggled with my MS and its been so hard at times, but getting that blue line on the test and seeing pip on the scan has made it all worth it!!

Well, that's enough writing for today, I don't want to over do it on my first day back !!! But tomorrow you can expect more past 6 months detail i.e going to New York, turning 30!!

xxxxx

finally an update!

2010-09-26T02:51:00.000-07:00

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!

2010-09-11T04:23:00.000-07:00

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!!!

2010-09-02T09:54:00.000-07:00

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

2010-08-27T05:31:00.000-07:00

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!

2010-08-22T12:45:00.000-07:00

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

2010-08-20T04:46:00.000-07:00

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!

2010-08-10T10:41:00.000-07:00

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!!

2010-08-09T15:29:00.000-07:00

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

2010-08-02T17:22:00.000-07:00

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?

2010-08-01T09:40:00.000-07:00

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!

2010-07-28T13:47:00.000-07:00

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!

2010-07-25T15:01:00.000-07:00

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!

2010-07-23T05:03:00.000-07:00

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!!

2010-07-21T08:10:00.000-07:00

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?

2010-07-20T03:55:00.000-07:00

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

2010-07-19T12:44:00.000-07:00

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

I've been missing

2010-07-14T14:50:00.001-07:00

for a few days from here. Partly because we have been super busy and partly because I have been so rubbish!
My legs have just been weak and rubbish and my brain too tired to do anything!
Sorry to moan and be a grump, promise tomorrow I will be back to smiley me! xxx

mmmmm massage

2010-07-12T13:48:00.000-07:00

Windsor Castle

Had a lovely Anniversary weekend! Hotel was pretty, massage was AMAZING and my husband is wonderful! Can't believe it's been two years! It's gone so quickly! It'll be 5 years before I know it!

Attached are some pics! xx

Sorry not written much today, massages are exhausting!

Ants amazing pudding!

good day sunshine!

2010-07-09T12:04:00.000-07:00

What a wonderful day! Spent the day with my friend Di and my gorgeous god daughter Ella! We went to the park, had a picnic, came back ate ice Lolly's and now my gorgeous husband is making us yummy dinner! We have the wine chilling, strawberry's and ice cream for desert and then I shall have a well earned rest! 17 month year old are tiring! also pushing yourself in a wheelchair on uneven ground cause your legs are being rubbish in the heat is also hard! Never mind! Tomorrow we are off for a spa weekend in Windsor to relax and enjoy our wedding anniversary!

Tomorrow tomorrow I love you tomorrow

2010-07-08T16:14:00.000-07:00

Really looking forward to tomorrow. One of my besest friends is coming round tomorrow with my gorgeous god daughter! We are going for a picnic and talking about Di's wedding plans! It will make up for the rubbishness of today. Got to work, fell over and ripped my jeans. Went for lunch, stumbeled, hurt my ankle. Got home from work, had a driving lesson and had to give up after half an hour cause my stupid legs weren't working and I didn't feel in control. Grrrrr! I hate days like these!!!!!! Hopefully a good rest tonight and relaxing day tomorrow will sort it out and I will be able to enjoy our wedding anniversary treat!!!

I'm not drunk...I've got MS: Just a girl

2010-07-06T15:41:00.000-07:00

I'm not drunk...I've got MS: Just a girl

Just a girl

2010-07-06T15:31:00.000-07:00

and this girl likes dresses, champagne, wedding shopping and being with friends! So today was a good day!

Laura & flowers!

Went to a wedding event at the Coast store on Regent Street with my friend Laura who is getting married in December and had a fab time! Laura drove which was a godsend, we managed close parking and the staff in Coast were so helpful! Had to take my chair as legs were a bit wobbly today. The Coast store is tiny and on three floors so getting around was not gonna be easy! Silly me didn't take my stick but the girls at Coast were so helpful! When they said it might be difficult to get around, one of them said "ooh hang on a tick" ran downstairs and came back up with a crutch! One of the guys that works there had hurt his leg recently and volunteered his stick for me! Now that is customer service! We were given champagne (with regular top up if wanted!) yummy nibbles and a fab goodie bag with nail varnish and a gorgeous bag! They had someone from a wedding cake company there who had the most beautiful and yummy cakes on offer. The chocolate brownie one was heaven!
I also found some dresses that my other friend who is getting married soon might consider for our bridesmaid dresses so was all in all a successful evening!

Yummy cake

Below are some pics so you can see me trying to model the dresses! I must say, I looked lovely with my gladiator sandals poking out! Thankfully I managed to roll my leggings up so they couldn't be seen. That would have looked classy!

Excuse the bad quality images, I phones aren't great cameras!

Mr Blue Sky

2010-07-05T10:39:00.000-07:00

Husband boy had a fab idea earlier (it's amazing the way his mind wanders on days he's working from home) about a charity event we could do to raise money for MS research. He wants to call it "a mile in my shoes" and is basing it around a race for life theory. What he wants is for MS people to walk, run, skip, jump etc a mile and those without MS to do the same mile using the walking method someone with MS uses everyday so wheelchair or walking stick. I think it's a fab idea cause non MS'ers can get sponsored to use a self propelled chair (harder than it looks) and people with MS get sponsored for walking. It still needs lots of ironing out but what do people think? xxx

I'm not a mardy bum

2010-07-04T12:32:00.000-07:00

I'm just exhausted!! Today has been one of those days where all I seem fit for is sleeping. It's such a weird thing and really hard to describe to people because my tired is not your tired. I used to get tired on the weekends I'd been out friday, saturday and then finishing it off in the pub on sunday. But this tired is different. One of the joys of MS is fatigue. I hate saying I'm fatigued cause it makes me sound quite stuck up " no I'm not tired I'm fatigued" but it is the best way to describe it. It comes on for no reason at all. I had a good 8 hours sleep last night so it's not lack of sleep. Ant cooked our 3 course lunch today so it wasn't that. I did my bits of housework, but again it's not too stressful. It just comes on for no reason. I worry that people think I am lazy but it has a weird effect on my body. My legs going is the main thing but I also get this weird thing with my eyes where they go blurry and won't focus that quickly, it's a bit like the when you have been out in the sun all day and you forgot your sunglasses so have been squinting, does that make sense?
Our friend has been round today as he is moving to the states on wednesday and as much as I want to spend loads of time with him, I slept for 2 hours while he was here! Makes me feel so rude!

I think part of it comes from the emotional strain i've been under with my nan. I tend to find when my brain is dealing with hard things my body goes into shut down. I really wish the two of them would work together sometimes rather than always annoying each other. It always happens when I am going out. My brains says " really looking forward to tonight" and starts planning outfits whilst my body says "i don't think so brain, I am going to make the legs wobbily so those heels are out of picture. Just be boring and wear some nice ballet pumps. On second thoughts why not just stay in?" it drives me mad!!
I'm really hoping they can start working together this week, especially tuesday as I am having a day out with my friend Laura. Its a bridal evening so we can get some ideas for he wedding in december. I am also doing some research for my friend Di who is starting to plan hers after her Fiance proposed last week! I've also got to get the legs and brain working for that as she has asked me to be a bridesmaid and I want to be able to walk behind her without having a stick! xxx

Grandma I love you grandma I dooooo

2010-07-03T12:57:00.000-07:00

Went to see my nana today and it was so difficult. She' always been such a positive force in my life and to see her in the state she is in so hard. It prompted the discusion between me and hubbie as to wether it would be better to be in the position of nana and just be withdrawn into your own little world or to loose the use of your body and just be laid there fully aware of what is going on but unable to move like you used to. It's a tough one as I worry that due to the ms, especially when my legs are being uber rubbish, that I will end up imobile and Ant will have to do everything for me. I just have to switch my brain round though and be positive. They are, all be it slowly, making advaces in treatment, and I still have a fab life so need to enjoy it rather than mope.
So, in light of my more positive outlook, I shall talk about the fab things that have happened so far this weekend! On Friday to cheer dad up, when we got back to wilts went out for a super yummy dinner at le Flambe. The food there is so delicious that even after two course you always have room for pudding! I shall try to add picks, but am updating from I phone so not sure if I can! We are now at our friends house just about to have some yummy food (and I have had a few vodka and cokes so a bit giggly!) and my friends are great to take my mind off stuff! Will post again tomorrow!

I like driving in my (instrustors) car!

2010-07-02T04:46:00.001-07:00

I have decided to learn to drive to help give me a bit more Independence and to tick off one of the things on my list of things to do before I'm 30.
I love it!! I have a few issues with the reactions of my feet but my instructor is brilliant and is so supportive of me! I'm finally getting used to driving and learning about reactions and what I should be looking out for so will keep everyone posted on how it is going!

Got a tricky weekend ahead, seeing my nan and my sisters have said it's really draining so am going to have a nap and get ready xx

it's finger popping 24 hour shopping in rapture

2010-07-01T14:19:00.000-07:00

Today has been a day of ups and downs
Downs cause my legs we useless most of the day and we didn't win at bingo (sad that we go I know, but our winnings over April & May paid for our holiday in June!) and ups cause I had some brilliant news from my friend! (The title of this post is for her). I really can't put into words how happy for her I am!!
Also on the up side of things today was my walking this eve. On our way back from bingo I walked most of the way home without my stick! This is brilliant for me as I rely on that thing too much! I'm now starting to take positive steps to not need it any more! I will keep this updated with progress! Also found a really cool blog today the link of which is below.
Ive also thought of some new things to add to this blog which will be coming soon!

OK

2010-06-30T14:13:00.000-07:00

I have now given the link to this blog to the boy of my dreams, best friends and to the shift MS world! I hope everyone likes it! If not tell me why and things you'd prefer to see here!! xxx

Not about MS but about my second love

2010-06-30T06:06:00.000-07:00

Ok you may have gathered from reading this I am a little obsessed with shoes!
I have just seen a pair I adore but silly MS will never allow me to walk in!

Maybe I could buy them and just stroke them...http://www.asos.com/Irregular-Choice/Irregular-Choice-Corsage-Front-Heeled-Shoes/Prod/pgeproduct.aspx?iid=952330&cid=6461&Rf-100=Shoes+-+Heeled&Rf-800=70.000,-1&sh=0&pge=0&pgesize=200&sort=-1&clr=Red

Hot hot heat!

2010-06-30T04:43:00.000-07:00

Please can someone wire me up to a fan, I'm so hot!
Also my back is agony today, which is making my legs rubbish and my hayfever isn't helping matters!!
All I want is a non poorly day please!!

lazy me

2010-06-29T12:01:00.000-07:00

I've been a lazy bones the past few days! Not written on here for a few reasons! 1:I've been far too tired to do anything but go to work and sleep! I don't know if anyone else with MS gets the same but the humidity of the past few days tires me so much! and 2: I've been super busy! It's always the way when I am at my most tired!
Friday we had our friends birthday where we went to a brilliant Tapinyaki (spelling?)restaurant which was amazing (trying to get the boys to catch an egg in the chefs hat without it breaking was so funny! see pic) then went to the pub for far too many drinks! The evening culminated in going back to said friends house playing cards and drinking till 4am! Oh dear! Had a brilliant evening though, had such a giggle! Also enjoyed the cab ride home at 5 in the morning. London is beautiful at that hour, I forgot how much I missed the times walking back from clubs to catch a nightbus, wandering through Covent Garden and Trafalgar Square. I would love to go clubbing again but my legs don't like dancing anymore, shame on you legs. Does anyone else get this? It's a weird feeling thinking about stuff you used to do with no thought of not being able to do it anymore. It's kind of half sad cause you miss those days and half happy that at least you can still get out with a bit of effort.

Fun in the sun

2010-06-23T00:13:00.000-07:00

Yesterday was a brilliant, if hard day! After work we met up with some friends in West Hampstead. This is an easy to get to place from our house one train all the way. Well it would be easy if my legs didn't have a brilliant trick of deciding that when I want to go somewhere, they don't. I'd been having trouble with my walking all day, but towards the end of the day, after I'd been nicely relaxed by a head massage when I had my hair cut, they were going ok. So off we went to the train station and my legs just started to play up, not moving properly, making my ankle all weak! Grrr! Anyway long story short, after many rest breaks and a lot of sitting down we got there! Had a really good catch up with our friends and a lovely time.
I get so annoyed with this, for me it is one of the most annoying parts of having MS. I used to be the girl that woke up on a Saturday morning thinking "oooh I'll go to town today, a bit of shopping on Oxford street and then some lunch with a friend" This is not as easy to do anymore. My legs get so tired out when walking and I can't really do the trains on my own at the moment as I don't trust my legs. I do have a wheel chair, but I hate using this!! Also London transport is not the most disabled friendly!
For me, my reduced mobility really is the hardest part of MS. There are ways to combat this but who wants to walk with a stick or sit in a wheelchair when three years ago thoughts of these things never crossed their mind?

Sorry having a bit of a whinge today, feel so exhausted and tired and moany! Will try to cheer up and write a happier post later!
I have physio at 1 which will hopefully improve my walking and also my mood!!

What a week

2010-06-20T02:40:00.000-07:00

Ok, so I've not updated this for a while, but it's not down to laziness, more having a horrible week that knocked me for six. To start with: finding out my Nana has a brain tumour and that, due to her age, they cannot operate because she may not come through the anaesthetic. Then, when I had absorbed that and sorted my head out, my mum, who also has MS, has been told that her beta interferon medication doesn't seem to be working. This would suggest that her MS has progressed from relapse remit to progressive. This was a blow on two fronts. The first worry and upset for my mum, if it has progressed then they will stop her meds as they have not found anything to stop progressing MS yet once it reaches progressive stage. I am also annoyed with mum's neurologist. She has only ever been on the one typo of beta interferon, she might not be reacting well to that one, so try her on another! A friend of mine who has ms was not responding so now they are trying her on tysabari which is a bit more hard core. I wish Mums neuro wasn't so blind sided to think that this will be the end and mum will just be left to progress.
My second worry is on a much more selfish level. I am my mums image. Out of her two daughters I was the one who inherited her looks and now her MS. How am I to know that my MS won't get beyond meds?? I feel so selfish worrying about myself when mum is going through this but it's hard not too.

It's at times like these that I am so glad for my brilliant support network around me. I had a great day on Friday. Went for coffee with my friend Lou and she is wonderful at talking about the things that are worrying me and then taking my mind off it by telling me some funny stuff that is going on. I have the best friend ever!!!
Friday was also a good day for my walking. I had my first session of physical physio and the back massage the physio gave me hurt like hell at first on Friday but by Saturday it had really done it's stuff! I was able to walk around freely (still a bit of fatigue but hey ho), in heels!! and even managed a few mins walking without my stick!!! Wooooo! If I carry on like this I will hopefully be stick free soon! which will be amazing! I'm too young to walk with a stick and really want to get rid!

Anyway I have rambled on far too much all ready will be updating again tomorrow xxxxx

p.S I have added a silly photo. To cheer myself up this week I have been looking at pics from our gorgeous holiday and this one always makes me giggle!

Not so good

2010-06-14T11:37:00.000-07:00

Had a bit of a rubbish day today with my MS. My legs feel like heavy weights, I'm exhausted and really worried that I may be relapsing again. This always seems to happen when I have been on holiday or had some bad news. We found out last week that my Nana is quite ill and it's really quite amazing how bad news can effect how my body reacts. My legs have been all over the place and all I want to do is sleep. I was feeling really down in the dumps about it all then read one of the best websites for young people with MS. Shift.ms is brilliant. It is the only place I know where a group of under 40's can get together and talk about the things that are affecting us. Everyone who goes on there seems to have a positive attitude which is great and I love that no subject is out of bounds be it problems with the illness or things that can be positive about it. A thread on the positive side is what helped me through today so thank you shift
MS'ers! xxx

The rhyme and reason of this

2010-06-13T05:57:00.000-07:00

Ok, rather than writing a few odd bits, I thought I'd just set out the reasons behind me doing this blog

1. The main driving force behind this is the recent press showing of MS in Hollyoakes. I generally love this show (sad i know for a girl approaching 30!) but it really annoyed me a few weeks ago. They have a character who has MS and they are showing it as a depressing illness and that people who have it want to end it all. I know they are telling the storey from a teenage sons caring for his dad point of view, but I think the general viewing age of Holloakes is the teenage population and if they think that is how all MS is, they will have a very dim view of it. Yes I know it is like that for many, but I want to show the other side! Yes I have down days. Yes sometimes I only just have the energy to do nothing. Yes sometimes the pains I get in my legs are unbearable and I wish I didn't have it. And yes I really really really wish I had never been diagnosed with it but there some good points.
1. I make sure I do something I love as many days a weeks as I can. This can be a very small thing such as giving my husband a cuddle or going shopping for a pretty dress and shoes but I try to be as positive as possible. Otherwise I would be a gibbering wreck.
2. I am fitter than I have ever been! I have always been lucky in that I am of a slim build and the gym has never been a place of worship. Now however I spin, do aqua aerobics, go on the Wii fit, walk as much as poss and do yoga stretches! I need to do these things to make sure I am as strong as possible. Another weirder one is I have super strong arms. This is not from exercise, more from the use of a wheelchair on bad days. Pulling your own weight around really tones the arms! My friend even jokingly asked if she could borrow my chair a month before her wedding to help hers!
3. Mid heeled shoes. I know this isn't a general positive but it is for me! Before I started to get ill, I loved wearing high high heels. Probably a little daft as at 5ft 7", a 4 inch heel is not needed to give me height but purely for vanity, but I loved them. When my legs got all wobbly and silly I thought my beautiful heels ( which i still get out and stroke on occasion) would become museum pieces only.
Thankfully, some great designer decided that mid heels are the new killer heels and the high street followed suit! Now I have lots of pretty mid heeled shoes that are easier to walk in and look so much prettier with a dress than a pair of flats do! I know this is so vain, but they make me feel like a girl again. I can't really describe the feeling of loss when something happens that makes you think you will never be the same again, but mid heels have helped me get a little bit of me back.
4. Amazing friends. I have the best group of friends in the world. They don't treat me any differently to how they used, they just link arms and give me support. I have heard horror stories of people who loose friends because they don't know how to deal with it. I am a lucky girl to still have my amazing friends around me!

I think I have lost track of this thread a little (another MS issue memory of a goldfish!) so I am going to stop here a write some more later. My husband wants to read it, but I am a bit shy about this and have told him he has to wait till I have been doing this a week! Hopefully I will have got into the swing of being a bit self obsessed and actually be writing some interesting stuff! Also I need to start spell checking this, My husband is very up on poor spelling and will pull me up on it no end!

hello

2010-06-13T03:24:00.000-07:00

ok I'm going to try to keep this updated on a daily basis!

Today has been a good day so far. I've just got back from an amazing holiday with my husband and friends and I never realised that a holiday could have the opposite effect of relaxing! We did so much, Drank far too much, danced and fell over more than I would like but had a brilliant time! The bad result of this is that I now need another holiday to recover! I do love going abroad, but I find my body needs a day or two to adjust to the change in temperature! I have found that since I've had MS my body has become somewhat of a barometer! I know when it is going to rain or when it it going to be super hot a few days before it happens due to the way my body reacts! Really weird but it's much more reliable than the weather forcast!

Attached is the view from our hotel room! Beautiful!

Later I will talk about this issues of what to wear on holiday!

2010-06-12T08:54:00.000-07:00

Hi All!!!
Ok so this is my first ever post on my blog.
I am a bit nervous about doing this but I thought it might be useful to myself and others with MS who don't want the illness to define them.
By writting this blog, I want to show that even if you have MS or any other Illness, you can still live the life you have always wanted too, and the odd adjustment can make life interesting.
I'm really happy for people to comment and give your opinions. I will always try to keep this interesting, but sometimes life is a bit mundane! I will try to post the interesting bits!
Ok I'm rambelling now so will sign off and update again tomorrow!