All the yums! š½š šš½š¶š
The difference in my lunch choice when I don’t go to Yoga, Pilates classes in the morning is immense!
My fatigue is still bad but far less than when I’ve exercised!
I can think a little clearer & listen to my body, so I can make better choices of what to have & what my body wants!
I know its appears to be a simple salad, but nothing is simple when you have 2 chronic illnesses!
I could have had some mixed beans with my salad but unfortunately, I have only just remembered them & my lunch is now in my tummy! š¤
This lunch is nothing compared to when my DebbieRahRah is here, but it makes me proud to know that I created it on my own!
ššš Photo is my own as is the writing
MS has changed my life, oddly and yet profoundly for the better.
When I was first diagnosed with Multiple Sclerosis (MS) in 2010 i was shocked and yet relieved to understand what had been happening to me for such a long while. Once i started to come to terms with my diagnosis in 2011 I felt ready to start fundraising. Around the 1st anniversary of my diagnosis, I decided that I wanted to raise money for the MS Trust, the wonderful charity that has helped me during my diagnosis & whom continue to help me every day with my MS.
Of all the things to do walking over fire seemed the most appealing! I told myself that if I could do that then I could cope with & be stronger than my MS!
Karen Sterling – Owner of ‘Blaze’ Firewalk company to the left of me in the picture, helping to guide me across the hot embers.
A fun event
It was one evening last year, when I was with a group of friends that an event called The Color Run was mentioned. One of Ā my friends searched for it on the internet, just from the pictures that I saw, instantly I wanted to participate in such a fun event. The trouble was it was a 5k run, I canāt walk half a kilometre let alone run 5!
What made it even more appealing was that it was coming to Birmingham! Before I knew it I had Ā emailed the company asking if it was suitable for disabled to take part!
It didnāt take long for the company to email me back but whilst I was waiting I carried on looking at āthe Color Runā website.
The Color Runā¢, also known as the Happiest 5k on the Planet, is a unique colour race that celebrates healthiness, happiness, individuality, and giving back to the community. Less about your 10-minute-mile and more about having the time of your life, The Color Run is a five-kilometre, un-timed race in which thousands of participants are doused from head to toe in different colours at each kilometre. The fun continues at the finish line with a gigantic āColor Festival,ā using more coloured powder to create happiness and lasting memories, not to mention millions of vivid colour combinations. Trust us, this is the best post-5k party on the planet! With only two rules, the idea is easy to follow:
Ā Ā Ā Ā Ā Ā Wear white at the starting line
Ā Ā Ā Ā Ā Ā Finish plastered in colour
Now the single largest event series on the planet, The Color Run is exploding since our debut event in January of 2012, with 1.5+ million runners in 2013 and over 2 million taking part in 2014.
I knew from reading that how much I wanted to do it now & hoped that the course was wheelchair friendly & someone would be happy to push me when I needed it!
Then I read the next part on the website
“Color Runnersā vary in demographics and reasons for running. With no winners or official times, The Color Run caters to anyone ā 2 year olds to 80 year olds, first time runners to professional athletes. Some Color Runners participate as a celebration and capstone of their healthy living accomplishments, while others participate for reasons unique to them.
No stopping me
It still didnāt say anything about disabled & wheelchairs. I guessed it was pushchair friendly as no one is going to make a 2 year old walk/run 5k! I opened the email & was so excited to read that YES ‘the Color Run’ is wheelchair friendly!
That was it, no stopping me! I updated my facebook status asking if anyone else fancied the challenge! It wasnāt long until I managed to get a team of 10, including myself looking forward to the big day. I decided this time I wanted to raise money & awareness for MS-UK. A wonderful charity dedicated to giving support and information to anyone affected by MS.
Earlier last year I helped support MS-UK with there āPurple pantsā campaign. I managed to get everyone in the Pilates class I attend to wear purple, raising MS awareness!
I spoke to my Pilates instructor Kate King (standing to the left of me in the picture above) at āThe Pingles Leisure Centreā and told her what I wanted to do. My aim was to walk as much of the Color Run as possible, knowing it wouldnāt be much because of the pain & weakness I have in my legs. I thought that if I could work on my āCore musclesā then hopefully that would help with my balance, always a must when walking! I also needed to strengthen my legs! Kate was up for the challenge!
Game on
That was it, that was my new challenge! I upped the amount of Pilates classes I attended and started going into the gym more often too. Gradually my friends joined me in the gym as well. It was fantastic, my moods started to get better, I was feeling much more positive about things and I was smiling a lot more!
I set up 3 different ways for people to sponsor us, the online ‘JustGiving’ page, sponsor forms and by text using ‘JustTextGiving’
We decided on a name for our team, BAM4MSUK. It made sense to us, By Any Means for MS-UK! I told everyone in the group that it didnāt matter how they wanted to take part in the event just as long as they had fun, after all this was to celebrate my 5th anniversary of diagnosis, proving that I am stronger than my MS! I knew I would be walking what I could and in my wheelchair for the rest, there were people who wanted to run and alsopeople who wanted to be part of my support team to help push me!
3 of us in the team were āMegaSpecialsā *Amazing people who have MS* this made it even more special for me. I realised how incredibly lucky I am to have such wonderful friends! There were a lot more of my āMegaSpecialā friends that wanted to do it but just couldnāt for one reason or another. I get the feeling that after hearing how much fun we had theyāll be taking part in the next āColor Runā or whatever challenge I decide to arrange.
Thebigday!
Gathering the MegaSpecials
It was finally here, the day I had been waiting for! All the arrangements were in place for the team to meet. I was going with my closest friend and chief wheelchair pusher āDebbieā
My āMegaSpecial Sistahhā Sare had come down from Doncaster, South Yorkshire with her Son Lewis, who wanted to take part in āthe Color Runā to celebrate his 16th birthday.
We were meeting my other āMegaSpecial girlyā Angie closer to the event location & then everyone else in the team were meeting us there. As long as the āMegaSpecialsā were together I was happy!
Me & my MegaSpecials Sarah & Angie, plus Debbie (top middle) before race.Face paint & tutus on, chair decorated. Lets do this! *MegaSpecial = awesome people who have MS*
Me on the left & my MegaSpecial girls Sare & Angie
This was such a big thing for me! There was going to be thousands of people there! Since having MS I have learnt that the anxiety I have suffered, for such a long time is actually part of my MS! Iām not on my own with this, which is why it was so nice to have other āMSrsā around me, we all āgetā each other!
Screaming with excitement!
All the team arrived and we were all ready! Wilma (my wheelchair, yes Iām one of those people! I like to name things) was all ready with the MS-UK t-shirt attached to the back. Everyone in the team had the official āColor Runā t-shirts on as stated in the rules and we all had paint and glitter on our faces supplied by āThe Color Runā
We all huddled together and said our bit, this mainly consisted of me screaming with excitement and then we made our way to the start!
Team BAM 4 MS-UK ready to ārock & rollāTop row: left to right: Lewis, Angie, Sharon, Deb, Adam, Giggler, Bottom row: Matthew, Sare, Me, MikeA brilliant group selfie of nearly all of us! Whereās Mike?
Remember to breath!
There were so many groups of people, like i said before thousands! My heart started to race, Iād never done anything like this before! I remembered my āPilates breathingā to help calm me and kept telling myself ājust breath, just breath!ā
Showing the amount of people queuing in front of us.The same amount if not more behind! MS anxiety was really kicking in! Bottom, left to right: Giggler (Lewis behind her) Mike, Deb
We started to move again, not for long! Stop, start, stop, start! When would we really be starting? We realised they were letting groups of people go & then waiting. Finally, we were off! 5k here we come!
And they’re off!
I started off walking with Angie and a member of the support team Sharon who I stuck to like glue, I was still very nervous even though the crowds of people had dispersed into the distance! Sare was in the wheelchair being pushed by Debbie ahead of us with 2 other members of the support team, Sarah C *AKA Giggler* & her partner Mike. 3 other members of the support team had decided to run ahead, Sareās son Lewis & another close friend Adam decided to run the course and meet us at the end. Sharonās son was also with us, because of his age he was only allowed to run to each kilometre marker. He then had to wait for us before he could run ahead again.
We reached the first kilometre marker! The āColor Runā volunteers were so much fun, they kept running up to everyone high fiving us followed by a dousing in color! Yellow, yellow, yellow, everywhere, the smell was awful & it didnāt taste too good either but it was so much fun!
Quick photo opportunity before the fun began!Left to right: Giggler, Angie in the middle & me
Thereās no going back now! Me to the right with my red āDeely boppers
Collecting the colors
As we made our way around the course we started to acquire more colors, Blue was the second, followed by my favourite: pink & then the final color at the 4th kilometre was orange.
Photo was taken after being blasted by the first colour, yellow!Left to right: Angie, Me, Sharon
Ā
Part of team BAM 4 MS-UK after the 2 of the joggers went ahead Back row, left to right: Mike, Giggler, Deb, Angie, Me, Sharon Bottom row: Sare taking her turn in āWilmaā wheelchair
We laughed & threw paint powder all over each other & laughed some more! We shared the wheelchair as & when we needed to being pushed by only one person, Debbie, because she was in the zone! She had been training for this for weeks and wasn’t going to let anyone else take over!
Meeting Jazz
Iād had a conversation with a young girly who I knew was going to the Color Run. Ā I met Jazz (who also has MS) through twitter, weād spoken about how great it would be if we bumped into each other on the day as weād been chatting online for such a long time but had never yet met! We also laughed about how it would be virtually impossible to bump into each other as there would be so many people there!
We bumped into Jazz! Top row, left to right: Angie, Deb, Giggler Bottom row, left to right: Sare, me, Jazz *Thanks to Jazzās friend for the great photo*
Enormous amount of pride!
We realised that not long after we started we were soon overtaken by the next wave of runners/walkers and then the next and the next and the next! It wasnāt long until we noticed the ambulance behind us! You know, the ambulance that signifies the end of the race, the last ones! Weād gone from being one of the first groups to start to being the last to finish, in that moment right there I felt an enormous amount of pride!
āMy MegaSpecial girlsā One of my favourite photos from the day as it shows the ambulance behind the girls, signifying the last of the runners! Not many people would like the fact that they are last but we did because it meant weād done it! Left to right: Angie & Sare
The last to finish
The last color was in sight! The last hill, the last marker! We were the last group to finish which could only mean one thing to the volunteers, use up all the paint powder they had left and cover the last people to cross!
Sharon definitely got me back with the last colour after I paint bombed her! Iām just glad it was powder & washed out of my hair easy!
Finish in site!
Typical of her, Debās tutu is tucked in her trousers! Left to right: Sare, Giggler, Angie, Matthew, Sharon, Lewis, Deb pushing me in Wilma, Adam *Photo courtesy of Jazz & team*
Hip hip hooray! We did it!
Back row: Sharon Middle row: Mike hiding behind Debs arm, Matthew, Angie, Sare, Adam Front: Giggler & me in the middle! Unfortunately Lewis isn’t in the picture as he took it!
Our own private colour party!
We did it but it didnāt finish there, we made our way to the final area where the remainder of what looked like a rave had taken place. Once we got to the āparty zoneā we were given loads of packets of paint powder, this was basically to throw all over ourselves as a group!
We watched the small crowds of groups at the bottom of the hill by the party stage, luckily we could hear them. They started to count down & paint bombed each other with those packets we were given! Wow! At that moment, I had tears in my eyes! That might seem odd to some people but for me it was magical! All that colour, it was like a plume of rainbows!
Our turn! As a group, as a team, the runners had rejoined us. We counted down 3, 2, 1, paint powder everywhere! It wasnāt until I opened mine that I realised I had the best colour ever, pink, my favourite!
Remembering how my vision is and how i have lost contrast, to see all that colour was something that I shall always remember, and if I donāt remember because MS is also interfering with my memory then I have the photos to look through.
This was by far the best part of āThe Color Runā Our own private colour party!
The long walk back to the car!
We didnāt think about that did we!
What an incredible day!
Me & Deb at the finish!
With special thanks to
āWilmaā
My ‘Wilma’ wheelchair, well & truly colored!
The āAvatarsā
The volunteers, quite obviously the ones at the blue paint marker!
Iām Vicky Edwards and MS has changed my life, oddly and yet profoundly for the better.
I was diagnosed with Multiple Sclerosis (MS) in 2010, I was shocked and yet relieved to understand what had been happening to me for such a long while.
Multiple sclerosis (MS) is a condition of the central nervous system.
In MS, the coating around nerve fibres (called myelin) is damaged, causing a range of symptoms.
More than 100,000 people in the UK have MS. Symptoms usually start in your 20s and 30s and it affects almost three times as many women as men.
Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms.
The cause is unknown and a cure is yet to be found, but research is progressing fast.
2011 saw the start of my love for fundraising. Of all the things to do, walking over fire seemed the most appealing for my first fundraiser! I told myself if I could do that then I could be stronger than my MS! That event celebrated my 1st anniversary of my MS diagnosis.
I decided from then on I would do my best to raise money for different MS charities. This then started a chain reaction. For many of the charity events a certain level of physical and mental fitness would be needed, not just for myself but for my friends as well, I would most certainly need their help. Different charity events call for different support from my friends, whether it be pushing me in my wheelchair for 5k, running the 5k, organising fun day events which would guarantee someone having to go in the stocks, or even running a marathon!
Last year myself and a friend decided it was time to attendĀ ‘Slimming World’ the Ā dieting group. Whilst at the same time I continued with my gym referral from the previous year and one by one the rest of my friends started to join the same gym!
Slimming World is where we first met Sharon and a friendship started to blossom. It was only a couple of months later that I realised she also went to the same gym as we all did! At this time I had started to organise another charity event and Sharon stood out to me as someone who would enjoy the challenge of the 5k Color Run. I asked and she accepted.
I managed to get a good number of people together and organised the group with the help of my friends!
I told everyoneĀ that for this event I didn’t mind how people participated as long as they had fun! We even came up with a name for us ‘bam4msuk’ (By Any Means for MS-UK as that was the charity I had chosen to fundraise for)
I was so happy with the group of friends & really pleased that Sharon had agreed to do it – bearing in mind that this was a lady that didn’t even know the rest of the group!Ā A lady that had recently found her love for running, this is why it was such a surprise to me when she said she wanted to walk with the group that was helping with the wheelchair! She was determined to give as much support as was possible and she didn’t disappoint!
“Hi Vix, want to run an idea past you. Been really proud of all your fitness sessions against your issues. I’m running my first marathon in October in York. Would it be ok if I ran for MS on your behalf? I think you have an amazing amount of strength and willpower and love you to bits! Thought you could borrow these legs ‘virtually’ and we could try to do some good between us? What do you think?”
I felt so honoured! I totally loved the idea! How wonderful!
We arranged to meet up so we could discuss it further, we spoke about the most important thing first… which charity Sharon would be fundraising for. She left that decision for me to make as I know the charities better than she does.
I decided it would be good to raise funds for MS-UK again, I decided this as they are a charity that not only helps me the most, but I think they are the best charity at raising awareness for Multiple Sclerosis.
Here is what Sharon has to say about why she started running, and why she wants to do this Marathon for an MS charity:
“I started running after losing 3 1/2 stone hitting target with slimming world. Had money to join the gym then and my sister-in-law shared a link for a 5k mud run in Carlisle in May 2015. I asked if she was running it and she asked if I wanted to join her? That was it, gauntlet down and challenge accepted! Up to this point I had been in the gym only, using the treadmill and weight machines to improve my poor level of fitness. With this mud run I was going to actually have to get outside for a start, to run but also make sure my overall fitness level could get me through the running, mud, water, fire, heights and climbing over/ under and through things!
Anyway I totally enjoyed this and from then on I started to go out more running and switched to Gym classes (body pump, cx, combat and balance). I also included swimming once a week for a good low impact activity. The running increased gradually over time, gym classes once a week (but 3 of them), swimming once a week and still maintaining my weight with slimming world.
I have definitely caught the running bug!
2015 was my first year of running and I have gone from being unable to run further than 100 yards without being out of breath to getting round 15 miles while talking with my running buddies.
Having met Vix through Slimming World and at the gym, I have seen how much she enjoys her activities and battles through her MS barriers.
It was watching her do this while still smiling that it struck me, my already booked first marathon should be done with her in mind – everything that she battles through daily should be my inspiration to get me through my first ever 26.2 miles.
My original plan had been to attempt a marathon before my 45th birthday (2017) to prove to myself that I could do it – so I shall be completing it to prove to myself that I can and for Vix to show her how much of an inspiration she truly is”
Sharon’s journey from unfit and unhealthy to fit and healthy!
This year MS-UK have been promoting the ‘Year of the Bear’ Myles the MS-UK Mascot
I was asked at the beginning of the year if I would take part in it, of course I said yes! A few days later I received my ‘Myles’ the MS-UK mascot and it was time to start taking him with me everywhere I went to capture selfies of him with different people, in different places, doing different things!
I thought it would be a wonderful opportunity to continue this campaign with Sharon and her marathon. So like the good sport she is, Sharon will be carrying ‘Myles’ around with her whilst she trains and of course on the big day.
It’s a rare thing to happen but Sharon has literally left meĀ speechless about this!
I am still processing it all!
Overwhelmed would be the best word to use to describe how I am feeling!
So I think the best thing for me to do now is say “Sharon you are a complete star” wish her luck and to thank her from the bottom of my heart for doing this!
Next for me to do is let you all know how you can contribute and show Sharon the incredible support that is needed!
I have set up a Just Giving page where you will find it easy to sponsor Sharon & Myles as they take on this epic challenge! Just follow the link for an easy step by step walk through of how to donate!
Please understand, before reading any further. This is a very raw, straight from the heart, honest blog!
There is also some rude language right at the end of this piece which I shall not appologise for as it’s how I feel!
I feel so angry!
It’s so unfair!
I just want to better myself!
I found something I love… Fight Klub!
It’s extremely hard core!
I love it!
Every time I do it I over heat
My core temperature rises so high
And I can’t control it!
I have extreme sensitivity to heat!
I’m trying different ways to keep my temperature down but nothing has worked yet.
Even after the class finishes my temperature continues to rise!
I have to finish the class before everyone else, to try and lower my core temperature enough to get to the car!
After the class my daily MS symptoms are worse, every single one!
My legs are weaker and give way under me
My vision blurs in my right eye to the point of not being able to see much
My hearing starts to fade and all the noises around me sound muffled
My MS fatigue is worse than ever
My speech slurs
I find it hard to catch my breath!
I can’t talk, if I do I loose my breath
I even get old symptoms reoccur!
My vertigo comes back
Last night I had the MS Hug again! Thats been a while! This is really not something you want when your already so out of breath you think you might pass out!
The MS hug is a symptom of multiple sclerosis where you feel as if you have a tight band around your chest or ribs or it can be pressure on just one side of your torso. Some people find that it is painful to breathe.
Last weak I fell after a fight klub class!
I hadn’t realised the change in floor height as I walked out of the room and ended up in a heap on the floor feeling sorry for myself!
Thanks to Hannah the instructor for speaking sense to me, I pulled myself together with only my pride bruised!
Last night’s class was one of my best classes! There’s no in between for me, I’m either all in or all out! I had it together, throwing my punches but not to hard, it is shadow boxing after all!
After the class last night my legs were weaker than normal and I was extremely hot!
It was during the journey home that it happened, a friend had taken us that night, we often take it in turns to drive. I say we when I really mean my partner and our friend take it in turns to drive! As if i could drive after that class!
I must look an absolute state afterwards, but that only reflects how hard I’ve worked!
I think it can be quite a shock for people to see me like that! I know it must be upsetting when it is out of your control and there is litterally nothing you can do to put me right.
Why do I do it to myself? Because I have found something that is just perfect for me to let out my anger, my frustration! I just need to learn more self control and not put every ounce of energy I have into it because of course, I still have to be able to walk back to the car afterwards, oh and then there’s the walking from the car to my home when we return!
Being carried to the bungalow is not going to be an option! Not again!
It was years ago that exercising was a big no no if u have ms but then they learnt, the symptoms that come during and after exercising are short lived and with no lasting damage!
As long as I can cope with these symptoms I’ll be ok, thats what I’m trying to do, find a way of coping so I can continue to do something tht I love so very much!
So here are my words for today, tomorrow and as long as I have MS (obviously this is for life or until they find a cure!)…
Know this, I will always stand up to it! I will never give in because like Fight Klub, I’m either all in or I’m all out! There’s only one way to be, I will never stop fighting
How flipping proud & immensely annoyed do I feel right now that I’m not going to Fight Klub!
DebbieRahRah is still going which I’m really pleased about & also she won’t be alone as one of our close friends Adam is also go with her!
It’s Adams first time at fight klub so this is for him…
*Proud because I’m letting my body rest after my Tysabri infusion
#bekindtoyourself
*Annoyed because MS can get in the way of so many things it’s just so gawd damn unfair!!!
#mssucks
I’ve come to learn that with MS comes a ‘Multitude of Sins’ maybe that’s what it also stands for as well as the original Multiple Sclerosis of course.
But then us MeSsy folk also like to rename it with names like one of my favourites ‘ManySmiles’ and of course the original one I was given to me by a very dear friend Toni. She is the one that told me MS just stands for what everyone has always known about me, it just means we’re all MegaSpecial!
This brings me onto my silly bit of research I plan on doing later today, since my MS has progressed I have started to loose a lot of strength in my hands meaning my dexterity is poor!
I have had to start using different cutlery which I used to find embarrassing when eating out, until of course I got over myself! I’ve always liked to be different after all!
I find counting loose change to be difficult sometimes too, more so when I’m tired.
Using a ‘chip & pin’ machine can also be tricky, especially if I’m have a day when my tremors might be bad! Always fun trying to put your card into a machine when you can stop your hand from shaking and then trying to put your pin number in! It’s a good job we have ‘ManySmiles’
I have now also noticed how hard it can be for me now to peel Oranges and in particular Bananas!
When I was searching the internet for some images I could use for this blog I came across something very interesting!
I think I have been peeling bananas incorrectly my whole life but I’m not sure yet until I try it! So later today when I come to eat my Banana whilst having my monthly infusion of ‘Tysabri’ at my local hospital I attend for everything MS, instead of asking my ‘Ty buddy’ to peel my Banana for me I’m going to try it myself following these guidelines!
I’ll let you know what happens! Stay tuned! āā”ā
Considering the amount of pain I am in and the level of my Fatigue it still amazes me how I manage to do what I do!
This is why I am virtually kicking my heels together, dancing and celebrating my love for pilates and how with this I am literally finding my feet š
I find that it’s so easy to forget about simple mundane tasks that become such a pain in the booty because MS gets in the way!
Counting money into piles without it falling down because u now have the not so wonderful MS tremors!
Thank goodness I have mastered the art of laughing at myself!
The amount of love i have for my friends & family is unmeasurable!
AngieMoo, I just kinda like you alot’
Thank you all for your Christmas & New year wishes, cards & gifts!
I was totally Overwhelmed & astonished at the amount of cards we got & all the gifts under the tree!
I had to turn all my notifications on my phone off from Facebook, Twitter, my blog site, Instagram, Snapchat, email and well basically every notification was turned off because I was getting so many!
I had to have breaks from opening our gifts as I keep getting major sensory overload, Christmas day was no exception!
I loved the whole day, I loved all the notifications & found it really hard to stop them! I loved being with family even if it was only for 45 minutes, they were 45 minutes better than non! And me in a pub as well, on Xmas day! I loved having my Mum & Daddy Paul over from Cyprus, spending time with both is always so precious! New years eve with my Mummy taking silly selfies was priceless! Playing ye old games, making up new rules & watching DebbieRahRah & Sister Bell build a bridge out of ‘Bananagram’ tiles & ‘Jenga’ blocks was incredible! Those 2 certainly have wild imaginations!
Thank you to all for being part of my life, for inspiring me with your art, your photography, your writing, your love for fitness & generally just making me want to be a better me!
*Photo taken from a thank you card I received today from Rae Hodgetts*
Living life the MegaSpecial way! 