Wednesday 30 June 2010
OK
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
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
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!
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!!
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!!
Tuesday 29 June 2010
lazy me
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.
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.
Wednesday 23 June 2010
Fun in the sun
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!!
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!!
Sunday 20 June 2010
What a week
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
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!
Monday 14 June 2010
Not so good
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
MS'ers! xxx
Sunday 13 June 2010
The rhyme and reason of this
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!
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
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!
Saturday 12 June 2010
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!
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!
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