Wifey has been such a star all weekend, giving me the strength and courage to eat!
Look at what she made me today, an open top chicken salad sandwich, with gluten free bread!
I know it may sound odd that she’s giving me strength and courage to eat, but when you’ve been in as much pain when ur stomach is trying to digest food, sometimes it seems easier to not eat!
That’s what happened to me 15 years ago! The exact same symptoms, except I didn’t eat for 6 weeks? I was so shocked when they told me I had a stomach ulcer, even though test results were in conclusive!
I’m still not right but at least I’m eating & its good food!
I’m not in as much pain as I was either! That’s the best part for me!
Going to carry on taking it easy, unfortunately that means I haven’t had my endorphin fix since Friday, but I’ll get over it!
I do still plan on a nice Chi Yoga class on Wednesday then resting again!
Onwards and Upwards! I have got this, I may not have control over my health but I have control over how I handle it!
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!
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 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 can’t 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 emailed the company asking if it was suitable for disabled to take part!
It didn’t take long for the company to email me back but whilst I was waiting I carried on looking at ‘the Color Run’ website.
The Color Run™, 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 “Color Festival,” 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:
Wear white at the starting line
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 Runners” vary in demographics and reasons for running. With no winners or official times, The Color Run caters to anyone – 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 didn’t 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 wasn’t 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.
I spoke to my Pilates instructor Kate King (standing to the left of me in the picture above) at ‘The Pingles Leisure Centre’ and told her what I wanted to do. My aim was to walk as much of the Color Run as possible, knowing it wouldn’t be much because of the pain & weakness I have in my legs. I thought that if I could work on my ‘Core muscles’ 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!
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 didn’t 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 ‘MegaSpecials’ *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 ‘MegaSpecial’ friends that wanted to do it but just couldn’t for one reason or another. I get the feeling that after hearing how much fun we had they’ll be taking part in the next ‘Color Run’ or whatever challenge I decide to arrange.
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 ‘Debbie’
My ‘MegaSpecial Sistahh’ Sare had come down from Doncaster, South Yorkshire with her Son Lewis, who wanted to take part in ‘the Color Run’ to celebrate his 16th birthday.
We were meeting my other ‘MegaSpecial girly’ Angie closer to the event location & then everyone else in the team were meeting us there. As long as the ‘MegaSpecials’ were together I was happy!
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! I’m not on my own with this, which is why it was so nice to have other ‘MSrs’ around me, we all ‘get’ each other!
Screaming with excitement!
All the team arrived and we were all ready! Wilma (my wheelchair, yes I’m 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 ‘Color Run’ t-shirts on as stated in the rules and we all had paint and glitter on our faces supplied by ‘The Color Run’
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!
Remember to breath!
There were so many groups of people, like i said before thousands! My heart started to race, I’d never done anything like this before! I remembered my ‘Pilates breathing’ to help calm me and kept telling myself ‘just breath, just breath!’
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, Sare’s son Lewis & another close friend Adam decided to run the course and meet us at the end. Sharon’s 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 ‘Color Run’ 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 didn’t taste too good either but it was so much fun!
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.
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!
I’d had a conversation with a young girly who I knew was going to the Color Run. I met Jazz (who also has MS) through twitter, we’d spoken about how great it would be if we bumped into each other on the day as we’d 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!
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 wasn’t long until we noticed the ambulance behind us! You know, the ambulance that signifies the end of the race, the last ones! We’d 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!
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!
Finish in site!
Hip hip hooray! We did it!
Our own private colour party!
We did it but it didn’t 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 ‘party zone’ 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 wasn’t 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 don’t remember because MS is also interfering with my memory then I have the photos to look through.
It’s hard to remember the days when I first had to take time off work because of my MS. I have come such a long way from that person that used to sit feeling sorry for herself, not doing anything to change the way she felt, just feeling more and more depressed!
Those days are real, they did exist, I was that person! So easily I could become her again! This procedure I have had done on my lower spine is to help ease my pain I feel, to gain this relief I have to endure a multitude of pains. The physical pain which comes in so many different ways, from moving incorrectly to even just standing. Then there is the emotional pain, some of this pain I feel may be hard for you to understand. Although you can’t see the physical pain itself, you can in fact see the physical effect of it in my face, in my eyes. The emotional pain will at times be so much easier to know when I feel it, you see I suffer from terrible mood swings. Almost like a teenager unable to get their own way, when I can’t do something that I have been used to doing its painful!
It was an easier day than I expect yesterday! The first day of recovery, unable to take part in my usual Pilates class at 11am. Even though I missed it, I was ok with it, that made me feel proud. The rest of the day I slept on and off.
The evening wasn’t too bad either. Deb came home from work, she sorted the dinner, homemade spaghetti bolognase that I had lifted out of the freezer and some pasta to go with. This made it easier for me as I wasn’t able to stand for more than a few minutes and therefore unable to cook the evening meal.
The exercise class I couldn’t attend last night was ‘Clubbercise’ I have only been to this class twice and, if I’m honest it’s a bit fast for me with a lot of side ways moving, which I have a major issue with. The class has also changed rooms, it used to be in an area that had direct access to outside, which was ideal for me to cool down quickly. The class is now in the ‘Dance studio’ the same room that I do Pilates in. Excellent because it has air-conditioning which means I keep cooler whilst exercising, the downside is that when I walk out of the room the temperature difference is too extreme for me, especially if my core temperature is high from cardio exercises.
This is a constraint of my MS, I can’t adjust to differences in temperature like my partner does. I can’t cool down quick enough when needed and vice versa, I don’t warm up quick enough! For these reasons I am apprehensive about going to Clubbercise again and didn’t mind that I couldn’t go!
A harder day today, missed out on a class called ‘PiYo’ a mix of Pilates and Yoga. A class that I wanted to try from the moment I heard about it and also a class that I was very nervous about trying! When my friend told me he had been to a class a few weeks ago, I was really sad that I hadn’t gone with him. He came around to my home to tell me all about the class and how hard it was, when he told me he thought it would be to hard for me, I booked in for the next available class straight away.
I wasn’t well enough to go to the class last week because of my MS. It hadn’t occurred to me then that I wouldn’t be able to go today, but I have to be good especially after all the work I had done on Thursday.
After my first PiYo class I couldn’t stop thinking about it, I practised some of the harder moves that I could remember, until I could no longer remember the easier option that the instructor ‘Hannah Bailey’ had showed me. That’s the thing with my MS, I forget things easily and quickly!
I was so looking forward to going again! I guess I just have to wait a little bit longer. Hopefully I’ll be so much better and stronger when I go to my second class!
Saturday evenings are my favourite! As much as I love going to all the exercise classes with Deb and our friends, I do miss the us time that we rarely get now. Saturday evening there aren’t any classes so we get to chill together snuggled on the sofa with our 2 dogs ‘our kids’
As far as pain goes and how my back is after the procedure, today I can stand for a little longer, around five minutes. Enough time to wash half of the pots in the bowl, the pain was starting to increase by then so I had to sit down and rest.
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 👏