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
Friday, 27 August 2010
Sunday, 22 August 2010
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
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
Friday, 20 August 2010
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
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
Tuesday, 10 August 2010
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!
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
Monday, 9 August 2010
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!
Monday, 2 August 2010
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
Sunday, 1 August 2010
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
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
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