I’m 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 attend ‘Slimming World’ the 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 everyone 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! 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 me 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!
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 👏
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*
What a great Xmas it’s been, a whole 10 days of no work for DebbieRahRah & most people! The longest time Deb has had off over Christmas since she started working in year dot! (🙊)
Wishing you all a fast trouble free day & hoping your alarms are still in one piece!
It’s not really their fault, you set them after all! 😉
Nooooooo! Back to Alarms waking us up tomorrow then! 😠
It’s been a lovely 10 days of DebbieRahRah at home! We both wish it could last longer but keeping Fugly (our bungalow) isn’t free & due to me being unable to work…
She’s such a good un!
Me however, what little sleep I get & how much I kick and punch her in the night I don’t know how she wakes me! Unless it’s for the gym of course!
I just want to remind people that I don’t punch and kick my wife for fun! In fact I have no control and no memory of it! It doesn’t wake me, I only know when I wake in the morning and she’s slept on the sofa!
No gym for me in the morning, I think in fact my appointment tomorrow is much better! I know, I know, is that possible I hear you cry!?
Yes it is… because I’m off to see a man about some pain relief! Yep, that day is finally here! Time to find out what Mr Pain clinic man can do for my back this time!…
Living life the MegaSpecial way! 